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Autoimmune Disorders and Primary Immunodeficiencies: Exploring the Differences and Connections

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Though autoimmune disorders and primary immunodeficiency diseases (PIDD) are both conditions that involve the immune system, they represent very different states of immune function. While autoimmune disorders are characterized by an overactive immune system that attacks the body's own healthy cells, PIDD are marked by an underactive or dysfunctional immune system that leaves the body vulnerable to infections.

Autoimmune disorders occur when the immune system mistakenly identifies the body's own tissues as foreign invaders and mounts an attack against them. This can lead to a wide range of autoimmune diseases, such as type 1 diabetes, rheumatoid arthritis, lupus, and inflammatory bowel diseases. The exact causes of autoimmunity are not fully understood, but they are believed to involve a combination of genetic and environmental factors, including infections, exposure to chemicals or toxins, and chronic stress.

In contrast, PIDD are a group of over 350 rare, genetic disorders that result from defects in the development or function of the immune system. These defects can lead to an increased susceptibility to infections, as well as an increased risk of autoimmune disorders. Some of the most common PIDD include common variable immunodeficiency (CVID), selective IgA deficiency, and severe combined immunodeficiency (SCID).

While autoimmune disorders and PIDD may seem like opposite ends of the spectrum, they can actually be closely linked. In fact, autoimmune manifestations are observed with considerable frequency in patients with certain types of PIDD, particularly those involving primary antibody deficiencies like CVID and selective IgA deficiency. The underlying mechanisms behind this association are complex and not fully understood, but they likely involve a combination of factors, such as impaired B cell differentiation, altered T cell tolerance, and dysregulation of the innate immune system.

Interestingly, the presence of autoimmunity can sometimes be the first sign of an underlying PIDD, and early recognition and treatment of these symptoms is critical for optimizing the patient's quality of life and reducing complications. Maintaining the delicate balance between the immunosuppression needed to control the autoimmune process and the need to avoid further compromising the already weakened immune system in PIDD can be a significant challenge, requiring close collaboration between the patient, their caregivers, and their healthcare providers.

By continuing to explore the underlying mechanisms and genetic factors that link autoimmunity and immunodeficiency, researchers and clinicians can work towards developing more targeted and effective therapies for patients affected by these complex and often intertwined conditions.

How BioMatrix Can Help

We provide specialty infusion pharmacy and support services for patients with autoimmune disorders and primary immunodeficiency diseases (PIDD). Our immunology program includes a full line of specialty medications used to treat immune deficiencies, including Immune Globulin (IG) which has become the standard treatment option in practices throughout the U.S. 

BioMatrix helps manage the individual needs of patients requiring IG therapy. Knowledgeable pharmacists and care coordination staff guide each patient through the potential medication side effects and, working with the prescribing physician, help manage treatment to reduce the prevalence and severity of relapses.

As a specialty infusion pharmacy, our clinical teams have extensive training and experience in rare diseases, infusion therapies, and complex medical conditions. Our nursing staff coordinates with pharmacists, healthcare providers, and other caregivers ensuring the best treatment outcomes possible.

Learn more about our individualized specialty pharmacy services for patients with CIDP and other neurological conditions.

Insurance Appeal Letter Sample & Template

Have you been denied insurance coverage for much needed treatment? Use this appeal letter template as a guide to help you or a loved one appeal insurance claim denials.

DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

References

  1. Rosenblum, M. D., Remedios, K. A., & Abbas, A. K. (2015). Mechanisms of human autoimmunity. The Journal of Clinical Investigation, 125(6), 2228-2233.

  2. Bonilla, F. A., Khan, D. A., Ballas, Z. K., Chinen, J., Frank, M. M., Hsu, J. T., ... & Shearer, W. T. (2015). Practice parameter for the diagnosis and management of primary immunodeficiency. The Journal of Allergy and Clinical Immunology, 136(5), 1186-1205.

  3. Cunningham-Rundles, C. (2008). The many faces of common variable immunodeficiency. Hematology, 2008(1), 1-14.

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Common Variable Immune Deficiency (CVID): Signs, Symptoms, and Treatment Options

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Common variable immune deficiency (CVID) is one of the most frequently diagnosed primary immunodeficiencies—meaning the immune system has low levels of antibodies that help fight infections. Those with CVID often develop recurring infection in the lungs, sinuses, and ears. The exact cause of CVID is unknown, though genetic defects may play a role.1

It’s important to note that CVID is not an autoimmune disorder. Autoimmune disorders occur when your immune system can’t tell the difference between foreign cells (like bacteria and viruses) and your own cells. Because of this, your immune system will attack healthy cells in your body in addition to unhealthy foreign cells. CVID, on the other hand, occurs when your body has existing low levels of antibodies.

Signs and Symptoms

People with CVID experience frequent and often severe infections, primarily affecting the respiratory system, ears, and sinuses. The most common types of infections include pneumonia, sinusitis, ear infections, and gastrointestinal infections. These recurrent infections can lead to permanent damage to the respiratory tract, known as bronchiectasis.2,3

In addition to frequent infections, CVID can also be associated with a variety of other health issues. Even though CVID is not an autoimmune disorder, some individuals with CVID can develop autoimmune disorders that affect their blood cells, causing low numbers of white cells or platelets, anemia, arthritis, and other conditions. Gastrointestinal problems, such as chronic diarrhea, weight loss, nausea, vomiting, and abdominal pain, can also occur. In some cases, patients with CVID develop granulomas (small nodules) in the lungs, lymph nodes, liver, skin, or other organs. CVID also increases the risk of certain cancers—primarily lymphoid and gastrointestinal cancers.3

Diagnosis

To diagnose CVID, healthcare providers will typically order blood tests to measure immunoglobulin levels and evaluate the function of the immune system. If CVID is suspected, further testing may be done to rule out other potential causes of the symptoms.

Treatment

CVID is typically treated with immunoglobulin (IG) (subcutaneous) infusions—especially for those with substantial decreased IG production and nonresponse to both protein and polysaccharide vaccines.4 The IG therapy provides antibodies from the blood of healthy donors. Other problems caused by CVID, like bacterial infections, may require additional, tailored treatments.5

Helpful Resources

The Immune Deficiency Foundation provides support and resources for CVID patients and their families. Some of these resources include: 

  • Articles, videos, podcasts, and more to help deepen your understanding of CVID and other primary immunodeficiencies

  • Peer and group support

  • Opportunities for advocacy and volunteering

Summary

In summary, common variable immune deficiency (CVID) is a complex and challenging condition that requires ongoing medical care and management. While there is no cure, with proper treatment and management, many people with the condition are able to live active and fulfilling lives. By understanding the signs, symptoms, and available treatment options, individuals with CVID can take steps to improve their overall health and quality of life.

How BioMatrix Can Help

Though a CVID diagnosis can feel overwhelming for you or a loved one, it’s important to know that you are not alone. Organizations like the Immune Deficiency Foundation mentioned above can provide a wealth of information and support as well as connect you to others in the community who have experienced the same diagnosis. In addition, your specialty pharmacy can offer individualized support to help manage treatment.

BioMatrix helps manage the individual needs of patients requiring IG therapy. Knowledgeable pharmacists and care coordination staff guide each patient through the potential medication side effects and, working with the prescribing physician, help manage treatment to reduce the prevalence and severity of relapses.

As a specialty infusion pharmacy, our clinical teams have extensive training and experience in rare diseases, infusion therapies, and complex medical conditions. Our nursing staff coordinates with pharmacists, healthcare providers, and other caregivers ensuring the best treatment outcomes possible.

Learn more about our individualized specialty pharmacy services for patients with CVID and other primary immunodeficiency diseases.

Financial Resource Guide

Living with a chronic condition can create additional healthcare costs while also impeding one’s ability to work. Our financial resource guide can help. 

DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

References

1. (Updated 2023 May 8). Pescador Ruschel MA, Vaqar S. Common Variable Immunodeficiency. . In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK549787/

2. (2024, March 5). Common variable immunodeficiency - Symptoms and causes - Mayo Clinic. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/common-variable-immunodeficiency/symptoms-causes/syc-20355821

3. Common variable immune deficiency (CVID) | Immune Deficiency Foundation. (n.d.). https://primaryimmune.org/understanding-primary-immunodeficiency/types-of-pi/common-variable-immune-deficiency-cvid#:~:text=The%20usual%20presenting%20features%20of,condition%20termed%20bronchiectasis%2C%20may%20develop.

4. Cunningham-Rundles C. Treatment and Prognosis of Common Variable Immunodeficiency. https://www.uptodate.com/contents/treatment-and-prognosis-of-common-variable-immunodeficiency

5. (2019). Common Variable Immunodeficiency (CVID). National Institute of Allergy and Infectious Diseases. https://www.niaid.nih.gov/diseases-conditions/common-variable-immunodeficiency-cvid

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Anthony Llanes and the Asociación Puertorriqueña De Hemofilia y Condiciones de Sangrado (Puerto Rican Association of Hemophilia and Bleeding Conditions)

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By Justin Lindhorst

As a child, Anthony was begrudgingly accustomed to being told “No.” No sports, no bike riding, no skating, no horseplay. Though his family had nothing but good intentions, he was frequently reminded that stepping outside the bubble his family had wrapped him in was a recipe for disaster. “You won’t live to celebrate your 18th birthday if you do that,” his Abuelita would chastise when he was too rambunctious.

Having severe hemophilia was hard enough, but being treated like fragile porcelain made things more challenging. Even gym class felt like a punishment. As his classmates played games in the warm Puerto Rican sun, teachers required Anthony to spend the time in the library doing book reports.

Anthony does not hold any ill-will toward his teachers and family who only wanted to keep him safe. There was no prior history of hemophilia in his family, and growing up in Puerto Rico presented its own challenges. To this day the island has a single pediatric Hemophilia Treatment Center staffed by one doctor and one nurse. Hospitals outside of the HTC, government agencies and school systems lacked awareness for protocols and best practices for people living with a bleeding disorder.

One thing that helped make life with hemophilia easier for Anthony and his family was getting involved with the local chapter, the Asociación Puertorriqueña de Hemofilia y Condiciones de Sangrado. Founded in 1999 by a couple with a son impacted with hemophilia, the chapter served primarily as a social network for families on the island. Meeting with others in the community helped Anthony and his family feel less isolated and better connected to those who understood the challenges life with hemophilia can present.

Reaching adolescence, Anthony began to rebel. “I became reckless. I disconnected from the community. I had been told for so long not to do so many things, I was determined I would do everything I wanted, despite the consequences,” he explained. Over time, those consequences began to add up. Frequent bleeding episodes punctuated this time in his life, and as the length and intensity of his bleeds increased, Anthony realized it was time to make a change. He began taking more proactive steps to manage his bleeding disorder and overall well-being. As his health improved, he became compelled to help other youth in the community avoid some of the bad decisions he made during that rebellious time.

In summer of 2014, Anthony was asked by chapter leadership to speak to a group of children at the annual bleeding disorder summer camp program. Arriving to camp in a wheelchair following surgery on a target knee joint, Anthony could have never anticipated how deeply that day would impact him.

Not having the opportunity to attend camp as a child, speaking that day was his first chance to experience the magic of camp. “I knew right away I wanted to be more involved,” Anthony said. “The kids were so happy to be there and so attentive. Before I left that day, I told the camp director she could count on me as a volunteer the following year, and I’ve been involved ever since.” After volunteering as a counselor for several years and attending conferences such as the National Hemophilia Foundation and NACCHO (North American Camping Conference of Hemophilia Organizations), in 2016, Anthony and another community member were asked to assume the position of Camp Co-Directors.

In 2018, a disaster struck the island in the form of devastating Hurricane Maria. As the intensity and scope of the natural disaster shocked the world, Anthony was volunteering with the chapter to help connect bleeding disorder community members with much needed aid and emergency support. Operating directly alongside HFA, the team worked long, tedious hours in the wake of the hurricane. “We did not have an electronic database with patient contact information, we were using paper records to locate and provide support for families,” he shared. “I’ll never forget riding alongside HFA personnel trying to navigate impassable roads, attempting to find alternate routes, and coordinating with local emergency employees to reach families in need.” It was during this time that Anthony’s guidance solidified him as a leader in the community and the face of the chapter. The resilience shown by members of the bleeding disorder community and all Puerto Ricans during that difficult time along with the outpour of support from HFA, NBDF and all corners of the world left a lasting mark on Anthony.

As the island grappled with the aftermath of the storm, a significant change within the chapter occurred. After many years of leadership and support, the couple who had been running the chapter since 1999 informed the community they were resigning. HFA stepped in and organized community members to hold an open election for a new chapter board chair. The votes were tallied, and Anthony emerged as the clear nominee. “I remember feeling shocked, and initially very unsure whether I was ready or in a position in my life to assume that responsibility,” Anthony recalled. “Though I was uncertain, I realized that for so many people to put their faith in me meant something, and I decided to take the position.”

As Board Chair, there was much to be done. “I had to learn a lot about nonprofit administration, finances and operations on the fly,” Anthony explained. “Our biggest initial challenge was that we did not have 501-C3 status, so we were not formally recognized as a charitable foundation. We also spent a lot of time moving everything from a mostly paper format to electronic records.” Anthony received a lot of assistance from NBDF, HFA, and other executive directors stateside and credits their ongoing support as instrumental in the growth of the chapter.

During this time Anthony also conducted extensive outreach to better understand the needs and wants of the community. In 2019 he hosted a total of 25 programs that allowed him to interface at a deeper level with the community and align the chapter priorities with the needs of Puerto Ricans living with a bleeding disorder. Anthony, the board, and many volunteers worked very hard and within two years, Anthony transitioned from his role as Board Chair and assumed the position of Executive Director.

Today the Asociación Puertorriqueña de Hemofilia y Condiciones de Sangrado continues to thrive. Working extensively with the HTC, volunteers, NBDF, HFA, and community members on the island, the chapter has significantly expanded its educational, financial, and legislative activities. Their advocacy efforts have led to the introduction of four new bills addressing needs such as establishing a patient registration system to determine the number of people impacted with a bleeding disorder on the island; providing emergency protocols to first responders and health systems outside of the HTC; and expanding research initiatives. Programming for men, women, teens, mental health issues, and an emergency financial assistance program have helped to bridge gaps and address specific needs in the community. The Chapter also now hosts two primary fundraisers, a UNITE Walk and a T-shirt fundraiser for World Hemophilia Day.

Much is on the horizon for the chapter. From May 3–5, 2024, the organization will host their first “Moin Conference.” The weekend program will welcome Spanish-speaking patients and families from chapters across the United States along with the local population for a weekend of education and community building. Outreach efforts to engage with patients across the island and establish a registry continues to be a priority so no patient or family is left behind. The chapter is also hard at work advocating for the creation of an adult HTC. Day after day, the chapter is helping to raise awareness and improve quality of life for their members.

As the Asociación Puertorriqueña de Hemofilia y Condiciones de Sangrado approaches 25 years of service to the community, Anthony and his team are looking forward to celebrating achievements and continuing the mission of the chapter. For Anthony, the future very much is connected to his past. “My experiences living with hemophilia on the island stays at the forefront as we develop new programs and services,” Anthony shared. “My childhood, rebellious teenage period, all the wonderful people I have met, and everything I have learned along the way will continue to influence the story of our chapter.”

Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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Chronic Inflammatory Demyelinating Polyneuropathy (CIDP): Signs, Symptoms, and Treatment Options

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Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a rare autoimmune disorder affecting the peripheral nervous system (where your brain controls all of your muscles and nerves that allow you to move and feel). With CIDP, the body's immune system mistakenly attacks the protective covering of peripheral nerves (the myelin sheath), leading to nerve inflammation and damage.1,2

This makes it hard for nerves to work properly, causing weakness, numbness, and sensory disturbances. While it shares some similarities with Guillain-Barré Syndrome (GBS), CIDP is characterized by a more gradual onset and is therefore considered chronic.3 Here we’ll discuss CIDP signs, symptoms, treatment options, and helpful resources.

Signs and Symptoms

Though signs and symptoms of CIDP can vary widely among people, when someone has CIDP, they might start to feel weak in their muscles—especially in their legs and arms. It's like their body is running out of energy. They might also feel tingling or numbness in their arms and legs, as well as cramping. Sometimes, they might even have trouble keeping their balance or feel tired all the time. These feelings can be uncomfortable and also painful.4

Diagnosis

Finding out if someone has CIDP isn't always easy because it can look like other nerve conditions. A thorough medical history, neurological examination, and diagnostic tests such as nerve conduction studies and electromyography (EMG) are essential for an accurate diagnosis.5 Additionally, cerebrospinal fluid analysis and nerve biopsies may be performed to rule out other conditions.

Treatment Options

Although there is no cure for CIDP, various treatment options can help manage symptoms, slow disease progression, and help people keep doing the things they love. Common treatments include:6,7,8,9,10

  • Intravenous Immunoglobulin (IVIG) Therapy: Healthy antibodies from donors are given to patients through infusions to help suppress the overactive immune response and lower inflammation. This reduces symptoms for many patients.

  • Corticosteroids: High-dose corticosteroids such as prednisone may be prescribed to suppress inflammation and alleviate symptoms, particularly during flare-ups.

  • Plasma Exchange (Plasmapheresis): This procedure involves removing and replacing plasma to remove harmful antibodies and inflammatory factors from the bloodstream, providing temporary relief from CIDP symptoms.

  • Immunosuppressive Medications: Drugs like azathioprine, cyclophosphamide, or rituximab may be prescribed to dampen the immune system's activity and reduce inflammation, particularly in individuals who do not respond to other treatments.

  • Physical Therapy: Rehabilitation exercises and physical therapy play a crucial role in managing CIDP, helping to improve muscle strength, flexibility, and mobility and reducing the risk of complications such as falls and injuries.

Helpful Resources

The GBS/CIDP Foundation International provides support and resources for CIDP patients and their families. Some of these resources include: 

  • Local community groups and chapter meetings

Summary

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a rare but debilitating autoimmune disorder affecting the peripheral nervous system. While there is no cure for CIDP, by knowing what to look for and getting the right treatment, people with CIDP can keep living their lives and doing the things they love. Through ongoing research and advancements in medical care, there is hope for better outcomes and increased understanding of this complex condition.

How BioMatrix Can Help

Though a CIDP diagnosis can feel overwhelming for you or a loved one, it’s important to know that you are not alone. Organizations like GBS/CIDP Foundation International mentioned above can provide a wealth of information and support as well as connect you to others in the community who have experienced the same diagnosis. In addition, your specialty pharmacy can offer individualized support to help manage treatment.

BioMatrix helps manage the individual needs of patients requiring IVIG therapy. Knowledgeable pharmacists and care coordination staff guide each patient through the potential medication side effects and, working with the prescribing physician, help manage treatment to reduce the prevalence and severity of relapses.

As a specialty infusion pharmacy, our clinical teams have extensive training and experience in rare diseases, infusion therapies, and complex medical conditions. Our nursing staff coordinates with pharmacists, healthcare providers, and other caregivers ensuring the best treatment outcomes possible.

Learn more about our individualized specialty pharmacy services for patients with CIDP and other neurological conditions.

Insurance Appeal Letter Sample & Template

Have you been denied insurance coverage for much needed treatment? Use this appeal letter template as a guide to help you or a loved one appeal insurance claim denials.

DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

References

  1. National Institute of Neurological Disorders and Stroke. (2019). Chronic Inflammatory Demyelinating Polyneuropathy Information Page. https://www.ninds.nih.gov/Disorders/All-Disorders/Chronic-Inflammatory-Demyelinating-Polyneuropathy-Information-Page

  2. Dalakas, M. C. (2014). Advances in the diagnosis, pathogenesis and treatment of CIDP. Nature Reviews Neurology, 10(3), 160-171.

  3. Markey, K. A., et al. (2018). CIDP and variants as a disease continuum: Evidence from nerve histology. Neurology, 90(13), e1157-e1166.

  4. Gorson, K. C. (2014). An update on the management of chronic inflammatory demyelinating polyneuropathy. Therapeutic Advances in Neurological Disorders, 7(5), 227-237.

  5. Van den Bergh, P. Y., et al. (2010). European Federation of Neurological Societies/Peripheral Nerve Society Guideline on management of chronic inflammatory demyelinating polyradiculoneuropathy: report of a joint task force of the European Federation of Neurological Societies and the Peripheral Nerve Society–first revision. European Journal of Neurology, 17(3), 356-363.

  6. Hughes, R. A., et al. (2006). Intravenous immunoglobulin (IVIg) for CIDP and related disorders. Cochrane Database of Systematic Reviews, 2, CD002062.

  7. Gorson, K. C. (2010). An update on the management of chronic inflammatory demyelinating polyneuropathy. Therapeutic Advances in Neurological Disorders, 3(5), 249-258.

  8. Léger, J. M., et al. (2011). Plasmapheresis in chronic inflammatory demyelinating polyneuropathy: A randomized, double-blind, sham-controlled study. Brain, 134(7), 1889-1899.

  9. Mahdi-Rogers, M., & Hughes, R. A. (2017). Immunosuppressive agents for chronic inflammatory demyelinating polyradiculoneuropathy. Cochrane Database of Systematic Reviews, 8, CD003557.

  10. Latov, N., et al. (2010). Peripheral neuropathy: Diagnosis and management. Cambridge University Press.

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Celebrating Success and Growth

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By Omar and Milybet Cepeda, Ed

“You cannot dream of becoming something you do not know about. You have to learn to dream big. Education exposes you to what the world has to offer, to the possibilities open to you.”

— Sonia Sotomayor

Before the days of modern medicine, a child with hemophilia spent a lot of time in hospitals and at home healing from bleeding episodes. As a result, many children living with a bleeding disorder experienced prolonged school absences and other challenges in academic settings. With accessibility of medication, prophylactic regimens, longer-acting clotting factors, Individualized Education Programs (IEP), and 504 Education Plans outlining educational modifications and accommodations for students with a health condition such as hemophilia, a bleeding disorder is no longer a barrier to education. This is the story of one family’s journey where success is intentional, not accidental, as told by mother and son.

Milybet: 

In 2002, I married my high school sweetheart, Harry. My father had hemophilia—my husband knew I was a carrier and that I had a 50% chance of passing it on to our future child. Harry was familiar with hemophilia and assured me he was in for the long haul. In 2004, our son, Omar, was born and, as we almost expected, was diagnosed with severe hemophilia. A week later, I lamented to my husband, “He is going to grow up so fast; he will be in college soon.” Harry laughed and replied, “You’re so silly!” Well, that was a fast 19 years ago! 

When Omar was first born, I wanted to bubble wrap myself around him. As a special education teacher, I contemplated leaving my job to stay home with him. However, when Omar was about a year old, Harry was injured and no longer able to work. He became a full-time Mr. Mom to our son.

While we adore our Omar to pieces, we worried. At times, I felt hopeless and lost in a world that revolved around navigating his health concerns. I often struggled to manage the chaos of an infusion and was consumed with apprehension when my son faced medical challenges. Sometimes my husband and I lost sleep, and sometimes our hearts skipped a beat—sometimes several beats—yet our son has always brought us such joy and makes us smile every single day.

As the years passed, we became more comfortable with our extra responsibilities as parents of a child with severe hemophilia. We were in this together—counting our blessings, overcoming self-neglect, having the strength to ask for help, reclaiming our lives, sharing our story, and spreading awareness. We want others to know having a child with a bleeding disorder is often challenging but manageable and rewarding.

In addition to his physical health and self-esteem, we were anxious about his education, the challenges he might have in school, his potential, and employment prospects. What would his future hold? Our son made it through pre-school, through grade school, and now, through high school. Next up… college.

When Omar was about ten years old, I decided to pursue a Doctorate in Education with a concentration in Organizational Leadership. It wasn’t easy balancing family, a career, and studies, but behind me was a young man rooting for my success, and I had to be a good example for him.

Since we were living it every day, when it came to choosing a dissertation topic, I decided on “Resilience Among Parents of Children with Hemophilia.” The mixed-method study explored the resilient nature of parents and summarized their experiences. The participants addressed diagnoses, severity, nature of the disability, functional limitations, current services, and personal experiences of overcoming adversity, with each having a range of emotions on treatments and the prolonged and unpredictable nature of aftercare. The respondents described positive and negative impacts of caregiving, which included a greater appreciation for developing empathy, compassion, patience, inner strength, and new perspectives on life. They revealed their concerns regarding healthcare support, academic support, mental well-being, physical wellness, and economic challenges. They also shared their experiences on receiving education/awareness, faith reliance, self-care, and social support network. Their shared experiences offered a context to help better understand what parents go through.

Omar:

Growing up with hemophilia has made my life unpredictable by nature and often affects my well-being. Knowing a mishap can lead to dire health complications or permanent damage is a mental and physical battle. As I grew and matured, I learned to be more receptive to change with an understanding that my condition can lead to unforeseeable consequences. I have been in and out of wheelchairs, crutches, boots, and bandages. Although these issues have some control over my life, I have learned to adapt and become a responsible adult.

I tried to embrace high school and stay active, but it wasn’t always easy. I loved playing basketball but had to give it up. I tried cross-country, but my left ankle wasn’t having it. I did enjoy golf and I was also a member of the marching band playing the mellophone and French horn all four years. I even joined the American Sign Language Club. I was sometimes lonely but that has to do with being somewhat shy. The pandemic hit, and we lost almost two years of face-to-face learning; then due to ankle bleeds and medical appointments I missed a lot of school but was able to keep up with the work, and my grades were good.

Sometimes my health situation would really get me down. Being involved in the bleeding disorders community helped to keep me from spiraling. When I was 10, I began volunteering with my dad as a deejay; DJ Omar, as I am now known—donating my talents on the turntable and bringing music to a variety of events such as family education symposiums, dinners, and annual walks in Florida, New Jersey, and New York.

For me, volunteering is a great stress reducer and distracts me from the pain I experience at times. It fills my soul and leaves me with a warm, fuzzy feeling in my heart. It makes me happy. Through the years, my hemophilia community involvement has been instrumental in my quest for self-exploration and acceptance.

Creating connections and building relationships has allowed me an outlet to combat loneliness. Conversing with individuals in similar situations has taught me that growth and adaptation are critical to overcoming challenges. I genuinely embrace stories and knowledge of community members because our commonality embodies unity, strength, and resilience. As I progress to the next chapter of my life, I can attest the emotional struggles with my bleeding disorder have significantly declined.

I knew once I started college, I would need to be even more mindful, make smart decisions, always be aware of my surroundings, and take more personal care of  my hemophilia.

Milybet:

The day arrived when our assignments were marked, final exams taken, and studies completed. The ceremonies were huge, unforgettable moments for us as a family. Our family and friends supported us during our studies and shared in our celebration. Omar and I graduated three days apart, mine in Florida and Omar’s in New Jersey. What a fantastic, wonderful milestone to share with my baby boy!

Today I continue to work as a bilingual special education teacher in grades 5–8 in the subjects of English Language Arts and Math. In addition to planning, organizing, and assigning activities specific to each student’s abilities, I implement IEPs, assess each student’s performance, and track their progress. I collaborate with general education teachers, administration, and the Child Study Team. I represent the middle school on the Superintendent’s Council of Teachers and am a faculty advisor for the Junior Honor Society and also serve as a part-time professor at Rutgers University.

In my spare time, I am a meditation and mindfulness coach, a motivational speaker and patient advocate presenting at events across the country, and a volunteer and Walk emcee for the Hemophilia Association of New Jersey and the New York City Hemophilia Chapter.

My primary advice to others raising a child with a chronic condition is to learn how to cope, manage your emotions, and keep stress in check when your child is going through a rough patch—hemophilia or not. By managing my own emotions during any difficulty, my son and I can have greater well-being and a healthier state of mind. It is essential to manage your reaction to stress. Many studies have found children whose parents had high stress levels experienced poorer management of their health condition.

Omar:

With hard work, I applied, was accepted, and have been attending classes at Rutgers University. College has been my way of starting fresh, motivating me to work as hard as possible. During my first year I was very engaged in my classes and most of my time was focused on my schoolwork. I haven’t yet chosen a major, though I am more confident about the direction I want to go in and have it narrowed down between following in my mom’s special education footsteps or medicine. My experience has been great. There have been some challenges, but I have been able to navigate each one of them. It’s mainly been a matter of getting used to the subjects and materials and managing the workload.

My close friends are aware of my hemophilia. It isn’t something that I’m embarrassed by. If it comes up in conversation, I’ll gladly share information if the questions are respectful and considerate. Toward the end of my freshman year, I started to get more involved in school organizations and look forward to being involved in more when classes start back up.

For me, the most significant part of transitioning from high school to adulthood was to be more social. I embraced the opportunity to meet new people during my first year and was welcomed into the new environment. Another major part of this transition was being able to balance everything in my life. I can’t always be partying or playing video games. I recommend trying to be productive as soon as you possibly can.

As I progressed through the first year of college, I pursued some goals I’ve been wanting to achieve for a long time. I started going to the gym regularly and made sure to keep my infusion schedule consistent. This first year has also allowed me to explore other passions of mine that I otherwise wouldn’t have explored. I’ve been greatly interested in the world of filmmaking, and I’d like to learn more about it in the future.

Overall, I feel the key part to a smooth transition, especially if you have a bleeding disorder, is to have a supportive network of people, whether it’s family, friends, classmates, coworkers, professors, or advisors. Having trusted people to communicate your problems or concerns is a big part of making this life-changing transition easier.

Also, remember to contact the disability services at your college. Having your potential needs communicated with your professors through disability services, if and before they occur, is imperative.

Milybet and Omar - Our Advice:

  • When your graduation day arrives, take a moment to breathe and take it all in. Appreciate how far you’ve come—you deserve to celebrate. Let it all sync into your memory!

  • Remember that noone can ever take away your education. You own your school degree and work experiences.

  • Embarking on a new chapter of your life may feel as liberating as it is terrifying. Consider writing down your feelings and speaking with a loved one. Begin preparing for your next steps.

  • Work hard. Whether your next step is going to school or getting a job, give it all you’ve got. Be on time, study for your exams, and complete your work.

  • Learn to follow a budget. Understanding how to properly manage your money is a valuable skill that will help you throughout your life.

  • Follow a schedule, and learn to manage your time. Building this essential habit will increase productivity and punctuality. Whether learned or by nature, managing your time can get you far.

  • Don’t make excuses—own and learn from your mistakes.

  • Be open to change. Continue your education—learn about yourself, take up a new hobby, enroll in college or take a class or two on something you want to explore; pivot your career if you have an interest elsewhere.

  • Avoid comparing yourself with others at school or work. You are you. Create your unique path. Your only competition is with yourself. Be the best version of you, and don’t let anyone dim your light.

  • Don’t let a bleeding disorder stop you. You have the power to do amazing things!

Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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Neonatal Alloimmune Thrombocytopenia (NAIT): Signs, Symptoms, and Treatment Options

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A pregnant person holds a mug of tea on their belly and is wearing a shawl

Neonatal alloimmune thrombocytopenia (NAIT) is a rare but serious condition that affects newborns, with an incidence of one in 1,000 to 1,500 live births.1 NAIT occurs when the mother's immune system forms antibodies against fetal platelets. These antibodies cross the placenta and destroy the baby's platelets, leading to thrombocytopenia (a low platelet count).

Signs and Symptoms

Signs and symptoms of NAIT in newborns can range from no symptoms to severe bleeding. Common signs include petechiae (small red or purple spots on the skin), purpura (larger areas of bleeding under the skin), and bruising. The most feared complication is intracerebral hemorrhage (ICH), which can occur in utero or after birth and can lead to long-term neurological damage or death.1,2,3

Diagnosis

A diagnosis of NAIT should be considered in any newborn with unexplained thrombocytopenia. Confirming the diagnosis involves detecting maternal antibodies against specific platelet antigens and matching these against the antigens present on the baby's platelets.1

Prevention and Treatment

Once diagnosed, subsequent pregnancies are at risk for severe disease. Management strategies include close monitoring, the use of antenatal therapies such as intravenous immunoglobulin (IVIG) and steroids for high-risk mothers, and planning delivery where appropriate support is available.1 Treatment options for affected newborns include HPA-matched platelet transfusions and IVIG to raise the platelet count and reduce the risk of bleeding.1,4

Preventive measures are crucial, especially since the condition can recur in future pregnancies with increased severity.

The Role of Genetics

Recent studies have highlighted the impact of certain genetic factors, such as the HLA-DRB3*01:01 allele, on the risk of alloimmunization and severe neonatal thrombocytopenia. Mothers with this allele have a higher risk of having children with severe NAIT.2

Long-term Outlook

The long-term prognosis for infants with NAIT varies. While many recover with appropriate treatment, some may experience developmental delays or other long-term effects from ICH. Follow-up studies are essential for monitoring the neurodevelopmental outcomes of these children.1

How BioMatrix Can Help

Though a NAIT diagnosis can feel overwhelming, it’s important to know that you are not alone. BioMatrix helps manage the individual needs of patients requiring IVIG therapy. Knowledgeable pharmacists and care coordination staff guide each patient through the potential medication side effects and, working with the prescribing physician, help manage treatment to reduce the prevalence and severity of symptoms.

The BioMatrix clinical team includes compassionate nurses who have extensive training and experience with rare diseases, infusion therapies, and complex medical conditions. Our nurses work together with patients, caregivers, pharmacists, and prescribers to coordinate the optimal site of care, conduct nursing interventions, and provide patient education.

Learn more about our individualized specialty pharmacy services for patients with NAIT and other rare, and ultra-rare diseases.

Insurance Appeal Letter Sample & Template

Have you been denied insurance coverage for much needed treatment? Use this appeal letter template as a guide to help you or a loved one appeal insurance claim denials.

DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

References

  1. Mella, M. T., & Eddleman, K. (2015). Neonatal alloimmune thrombocytopenia. International Journal of Clinical Transfusion Medicine, 29. https://doi.org/10.2147/ijctm.s51926

  2. Kjeldsen‐Kragh, J., Fergusson, D., Kjær, M., Lieberman, L., Greinacher, A., Murphy, M., Bussel, J. B., Bakchoul, T., Corke, S., Bertrand, G., Oepkes, D., Baker, J. M., Hume, H., Massey, E., Kaplan, C., Callum, J., Baidya, S., Ryan, G., Savoia, H., . . . Shehata, N. (2020). Fetal/neonatal alloimmune thrombocytopenia: a systematic review of impact of HLA-DRB3*01:01 on fetal/neonatal outcome. Blood Advances, 4(14), 3368–3377. https://doi.org/10.1182/bloodadvances.2020002137

  3. Lablogatory, A. (2021, January 26). Case Study: Newborn with Thrombocytopenia and Bruising. Lablogatory. https://labmedicineblog.com/2021/01/26/case-study-newborn-with-thrombocytopenia-and-bruising/

  4. Conti, F. M., Hibner, S., Costa, T. H., Dezan, M. R., Aravechia, M. G., Pereira, R. A., Kondo, A. T., D'Amico, É. A., Mota, M., & Kutner, J. M. (2014). Successful management of neonatal alloimmune thrombocytopenia in the second pregnancy: a case report. Einstein (Sao Paulo, Brazil), 12(1), 96–99. https://doi.org/10.1590/s1679-45082014rc2729

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Mary Munson Runge: A Trailblazer in Pharmacy

Two photos of Mary Munson. First is a headshot. Second Mary is typing at a pharmacy counter.

Photos courtesy of blackamericaweb.com and aphafoundation.org

As we celebrate Black History Month, it’s important to pause and remember the achievements by Black Americans and their critical, central role in United States history. Here, we spotlight Mary Munson Runge—a pharmacist and advocate.

Mary Munson Runge, born in 1928 in Donaldsonville, Louisiana, played a critical role in breaking down barriers for Black Americans in the field of pharmacy. Her father, John Harvey Lowery, was the town's first pharmacist and was known for helping the town’s poor residents get their needed treatment. He was a significant influence on her career choice. After graduating from Xavier University of Louisiana College of Pharmacy in 1948, Runge moved to California, where she began her career in hospital pharmacy, serving for 21 years. She was one of the few female pharmacists at the time.1,2

Runge's commitment to helping those in need was evident in her work. She transitioned to community pharmacy, working at Sylvester Flower's Apothecary in Oakland, California. This practice served needy patient areas, and Runge found great fulfillment in helping poor African American people who couldn’t afford their medicine.1

In 1979, Runge made history by becoming the first woman and the first African American to be elected president of the American Pharmacists Association (APhA), ending a 126-year run of white, male presidents.2,3 This achievement was a significant milestone in the advancement of diversity and inclusion in the pharmacy profession.

During her tenure as APhA president, Runge worked tirelessly to increase diversity within the profession. She was instrumental in creating the APhA Task Force on Women in Pharmacy and APhA's Office of Women's Affairs. Her commitment to increasing diversity in membership ranks was fueled by her father’s devotion to the poor and disenfranchised.1,2

After her two terms as president ended in 1981, Runge continued to practice pharmacy while also serving on various federal committees over the next two decades. She received honorary doctorates from the Massachusetts College of Pharmacy (Doctor of Science) and Ohio Northern University (Doctor of Pharmacy) in recognition of her work for the profession. She was named Pharmacist of the Year in 1978 by the California Pharmacists Association and was inducted into the California Pharmacists Association Hall of Fame in 1997.1

Runge's legacy extends beyond her professional achievements. She balanced her career with raising a family, becoming a grandmother, and serving as a mentor to other pharmacists.3 Her life and work serve as an inspiration to many, reminding us that progress is always being fought for and won, even in more modern times.3

In honor of Runge's contributions to the field of pharmacy, the APhA established a scholarship in her name. The Mary Munson Runge Scholarship is awarded annually to APhA student members, serving as a fitting tribute to her legacy and helping to pave the way for future leaders in the pharmacy profession.2

In conclusion, Mary Munson Runge's pioneering work and leadership have left an indelible mark on the pharmacy profession. Her dedication to advocating for the inclusion of women and minorities in pharmacy and her outstanding achievements as a pharmacist have paved the way for countless Black Americans in the field. Her enduring impact continues to inspire and influence the pharmacy profession, and her contributions deserve recognition and celebration.1,2,3

DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

References

  1. African American Registry. (n.d.). Mary Munson Runge, a pharmacy pioneer. https://aaregistry.org/story/mary-munson/

  2. Black America Web. (2016, November 18). Little Known Black History Fact: Mary Munson Runge. https://blackamericaweb.com/2016/11/18/little-known-black-history-fact-mary-munson-runge/

  3. West Virginia University School of Medicine. (2020, February 28). Celebrating Black History Month: Three pharmacy trailblazers who made a difference. https://medicine.wvu.edu/News/Story?headline=celebrating-black-history-month-three-pharmacy-trailblazers-who-madedifference

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Navigating Access to Specialty Medication: Overcoming Insurance Barriers in 2024

A black woman wearing glasses and apron sits at a kitchen table looking at her computer and cellphone.

Accessing specialty medication remains a crucial aspect of patient care, particularly for those managing complex health conditions. Specialty pharmacies play a pivotal role in ensuring patients have seamless access to these vital medications. As the new year unfolds, it’s important to understand barriers to care and how we as a specialty infusion pharmacy can help.

Understanding the Role of Specialty Pharmacies

As an independent specialty infusion pharmacy, we provide injected and infused medications not typically found at your neighborhood pharmacy. These medications are costly, involve unique shipping/handling, and require patients to receive training or home nursing support to safely take the medication at home.

Because of the high level of care required to handle these complex infused or injected medications and the conditions they treat, we support our patients at every step. From prescription intake and insurance clearance, through medication delivery, training, and beyond, we are committed to our patient’s success. 

Prior Authorizations

Prior authorizations are a cost-control process that requires advance approval for certain healthcare needs, especially specialty medications. This process can take 5-10 days (though typically fewer with BioMatrix), needs to be reviewed by clinical pharmacists and medical doctors, and may require a letter of “medical necessity”.


How We Can Help

We employ staff who are very well versed in navigating insurance issues for specific health conditions. They use their knowledge to promptly obtain authorization for therapy and resolve coverage issues. We will work together with your medical provider and health plan to obtain timely prior authorization for service and assist when and if an appeal is necessary.


What You Can Do

As a good first step in avoiding coverage issues, ask your provider to send a referral to BioMatrix or another reputable specialty pharmacy. If you have a new insurance plan, don’t wait until you are critically low on medication to place your first order. Placing your order in a timely manner will give your medical provider and specialty pharmacy enough time to resolve any issues before they potentially disrupt your care.

Step Therapy

Also known as a “fail-first” policy, step therapy requires you to try one or more preferred medications to treat a condition. You must first “fail” medication before “stepping up” to another drug. The issues with step therapy may include potential side-effects, insurer vs physician control over patient care, and delay of therapy if the patient appeals. The implementation of step therapy has been steadily increasing.


How We Can Help

If your health insurance plan involves step therapy, we can work with you and your prescriber to appeal the step therapy mandate and build a clinical case for maintaining the prescription as written by your provider. We will also make sure that there are no contraindications or anything else that would harm you with mandated prescribed medication. At BioMatrix, even if you must be prescribed an alternative treatment, our pharmacists make sure that it won’t be harmful or have adverse effects.


What You Can Do

When it comes time for open enrollment, check whether you have any available plan options that don’t include step therapy. For example, if you are enrolling in Medicare, you could reconsider Medicare Advantage and instead choose a Medicare fee-for-service plan to avoid being subjected to step therapy.

Denied Claims and Appeals

In the event of a health insurance claim denial, an insurer refuses to pay for a procedure, test, or prescription. This could be due to a number of reasons including an error in how the claim was entered or due to missing information.


How We Can Help

We can minimize your denied claims and provide support for appeals by:

  • Conducting a thorough benefits investigation on your behalf

  • Providing a detailed outline of coverage specific to your therapy, including whether it is covered under the medical or pharmacy benefit and if a prior authorization is required

  • Outlining financial responsibility for prescribed therapy and referring to appropriate financial assistance programs

  • Identifying specialty pharmacy service providers available under your plan

  • Providing support for timely prior-authorization and appeals


What You Can Do

When an insurance claim is denied, you have the right to appeal. To proactively make the appeal process easier, keep detailed records, and document every call you have with your insurer. Take notes on the following:

  • Date/time of call

  • Reason for call

  • Name of the employee(s) you spoke with

  • Reference number for call (you may need to specifically request a reference number)

  • Result of the call and any impact on your health resulting from the issue/call

  • Check with your insurance provider to determine their specific appeal process. Don’t hesitate to involve your medical provider and specialty pharmacy for additional assistance.

High Out-of-Pocket Costs

Living with a chronic condition is costly. When you have to pay high out-of-pocket (OOP) costs for your treatment, you're more likely to skip optional care and delay critical care. This leads to both poorer treatment outcomes and overall health.


How We Can Help

We are committed to helping you identify and obtain financial support so treatment can begin without delay. We help identify co-pay assistance programs and connect you with the right resources for enrollment. From manufacturer co-pay programs to charity-based financial assistance, we provide resources and support to reduce financial barriers and help you access specialized healthcare. 


What You Can Do

We offer a Financial Resource Guide that you can download at no cost. It provides an understanding of the financial impact of chronic illness, a list of financial "safety nets" to put in place to help lessen the impact of healthcare costs, an overview of Medicare and Medicaid, tips to help avoid medical debt, and a list of financial support organizations who can potentially help. Click here to learn more. 

Copay Accumulator Adjustors

A copay accumulator adjustor is an insurance-designed policy meant to control your cost sharing agreement with the insurer. The insurer will accept the drug manufacturer copay cards towards prescribed drugs but will not apply that amount toward your OOP. The pharmacy will be required to collect these cost shares again and can use the drug copay card until the card is at $0. Then the OOP cost will be your responsibility. In 2023, the US Court of Appeals revoked the current language Health and Human Services (HHS) created in 2021 regarding copay accumulators. So be on the lookout for potential changes to come regarding the application or denial of manufacturer copay assistance toward your OOP responsibilities.


How We Can Help

We can help minimize the burden of copay accumulators by outlining your financial responsibility for prescribed therapy and referring you to appropriate financial assistance programs. Beyond manufacturer co-pay cards, there are many charity-based financial assistance programs that we can connect you with. These charity-based financial assistance programs can help cover both medical expenses and, in some cases, some living expenses.


What You Can Do

While an increasing number of plans now have copay adjustors, making a personal decision about your plan choice based on an accumulator adjuster is an example of private, personal advocacy, and is of vital importance to your continued access to affordable healthcare. You may be locked into your current plan if open enrollment has passed, but keep this in mind for the next open enrollment period. You can find out if you have a copay accumulator by calling your plan. Recent CMS rulings require that insurers provide “clear and transparent” information to consumers about copay accumulator policies. It also goes by different names depending on the plan:

  • Copay Maximizer

  • Coupon Adjustment Program

  • Benefit Plan Protection Program

  • Out of Pocket Protection Program

If you have to choose between a plan with a copay adjustor and a copay maximizer, a copay maximizer, while still not ideal, is potentially better. With a copay maximizer, the insurer will accept the drug manufacturer copay card towards a prescribed drug and will apply that amount toward a patient’s OOP for that drug only. So, while the OOP for that particular drug doesn’t apply to other healthcare costs, at least it will apply to that drug which may account for a high percentage of your healthcare expenditure.

You can also choose a health savings account (HAS) or flexible savings account (FSA) plan where you can put pre-taxed money away for your deductibles and OOP costs.

PBMs and Formulary Exclusions

A pharmacy benefit manager, or PBM for short, is a third-party partner with a health insurance plan that provides prescription drug benefits to the plan members. PBMs function as an intermediary between the entities involved in getting prescription drugs from the manufacturer to the patient’s individual insurance plans. If you have a health insurance plan, you have a PBM. 

PBMs create drug formularies (a list of drugs that are covered by a health insurance plan) and therefore also formulary exclusions (a list of drugs that are not covered by a health insurance plan). If there is a formulary exclusion for your prescribed medication, you will have to pay for that out of pocket. 

In 2023, formulary exclusions continued to increase with the top 3 PBMs (CVS, Express Scripts, and OptumRx). PBM exclusions tend to focus on drugs with low utilization, those with generic equivalents, or those used to treat chronic conditions. They block access to those drugs in favor of preferred ones. A patient-led study, however, claims that almost half (46%) of the exclusions in one PBM they studied showed no economic nor medical benefit for the patient.


How We Can Help

If your specialty medication falls under a formulary exclusion, we can work with you and your prescriber to appeal the exclusion and build a clinical case for why access to that particular prescription, as written by your provider, is required.


What You Can Do

If you want to learn more about PBMs, you can reach out to the BioMatrix Education Team at education@biomatrixsprx.com. You can also read more about them here.

The Road Ahead in the New Year

In the evolving landscape of healthcare, we continue to stay informed to help you overcome insurance plan barriers. We remain committed to advocating for our patients, staying updated on policy changes, and adapting our approaches to help ensure uninterrupted access to specialty medications. At BioMatrix, our employees also have a great deal of experience with specific health conditions. By utilizing this experience and knowledge, we can obtain authorization for therapy and resolve coverage issues promptly. 

You can also be your own advocate when it comes to health insurance coverage. Be proactive when ordering medication, stay organized, and be aware of what your policy entails. Also remember that we are here to help you cut through the red tape of coverage issues.

DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Financial Resource Guide

Living with a chronic condition can create additional healthcare costs while also impeding one’s ability to work. Our financial resource guide can help. 

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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Enhancing Transplant Patient Care: The Vital Role of Qualified Home Nursing Services in Home Infusion

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An older white woman sits next to a smiling Asian nurse.

Home infusion therapy has transformed healthcare by allowing patients to receive treatment in the comfort of their own homes. For individuals undergoing organ transplant procedures, this plays a pivotal role in their recovery and ongoing care. Here we discuss how the success of home infusion, particularly for transplant patients, hinges significantly on the expertise and support provided by qualified home nursing services.

The Significance of Home Infusion for Transplant Patients

Transplant patients benefit from home infusion both before and after transplant. Before transplant, patients are dealing with chronic complications that have caused them to need a transplant. Getting their immune systems prepared can require timed medication therapies such as desensitization. Post-transplant, patients are at risk of infection because of immune-suppressing anti-rejection drugs and/or because they develop chronic or long-term conditions compromising their immune systems.

Hospitals and infusion centers can take every precaution available, yet in these environments patients still have the potential for exposure to bacteria or viruses they would likely not encounter in their homes. Home infusion provides a safe and effective means to help transplant patients manage their prescribed therapy. Patients can receive their medication in the secure and familiar environment of their own homes, administered by a clinically-trained infusion nurse. Benefits include safety, convenience, cost-savings, and patient well being. 

Challenges and the Need for Qualified Home Nursing Services

The complexity of post-transplant care demands meticulous attention and specialized knowledge. This is where qualified home nursing services come into play. These professionals bring a wealth of expertise providing personalized care, monitoring patients' health, administering medications, and offering vital guidance to patients and their families.

The expertise of qualified home nurses extends beyond administering medications. They serve as educators, ensuring that patients and their caregivers understand the treatment protocols, potential side effects, and the importance of adherence to prescribed regimens. Their vigilance in monitoring for any signs of complications or adverse reactions is crucial in preempting potential issues and ensuring timely interventions.

Extensive Vetting and Training

BioMatrix ensures a robust network of over 200 contracted nursing agencies nationwide, all meticulously vetted to align with Infusion Nurses Society guidelines. Similarly, individual home infusion nurses undergo a thorough assessment and preparation, including evaluations of their competency and detailed reviews of prescribed therapy. Prior to service, these nurses meet with BioMatrix nurse clinicians, ensuring a suitable match for the patient's needs. Should any nurse not meet their stringent competency standards, BioMatrix promptly reassigns the case to maintain their commitment to exceptional care.

Site-of-Care Coordination

We are well aware of how important it is for patients to avoid conflicts with work and other obligations. BioMatrix nurse clinicians aim to create plans that stay within the parameters of all protocols and instructions that their MD has ordered while causing the least possible disruption to patients' routines. When administering in-home with assistance from one of our home care nurses, our nurses work with patients and prescribers to make therapy administration as safe, convenient, and comfortable as possible. 

Safety Protocols and Clinical Interventions

All BioMatrix nurse professionals follow CDC guidelines for hygiene and germ reduction and help patients mitigate any issues to establish a safe environment for home infusion. When entering a patient’s home, the home infusion nurses follow all standard precautions and wear appropriate personal protective equipment. They also take the time to identify and review safety measures the patient can follow in the home both during and after infusion.

Following each home infusion, the home infusion nurse will submit a report to the BioMatrix clinical team to track response to therapy, monitor for adverse events, and help personalize and improve future care. By synthesizing clinical, social, and drug utilization information, our nursing team’s actionable interventions help improve health and save lives. Our interventions support patient adherence to therapy, reduce side effects, and help address both critical and every day issues related to life with a chronic health condition. 

Patient Education

We understand that starting a new therapy and navigating the treatment process can be challenging and confusing for a patient. Where appropriate, our nursing team provides self-administration training for injectable or infusible drugs, allowing patients to more independently manage their condition. Our nurses can also guide patients post administration to maintain therapy adherence, minimize or manage side effects, and answer questions that may arise throughout their treatment regimen.

The BioMatrix clinical team includes compassionate nurses who have extensive training and experience with rare diseases, infusion therapies, and complex medical conditions. 

Our nurses work together with patients, caregivers, pharmacists, and prescribers to coordinate the optimal site of care, conduct nursing interventions, and provide patient education.

Watch our video here to learn more about our home infusion services.

DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Financial Resource Guide

Living with a chronic condition can create additional healthcare costs while also impeding one’s ability to work. Our financial resource guide can help. 

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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Ted Kramm Appointed To BioMatrix Specialty Pharmacy Board Of Directors

Board Addition Will Accelerate Growth and Expand Expertise in Specialty Infusion Services

Media Contact: Tara Marchese
Senior Director of Marketing
Tel: 954-908-7636
Email: tara.marchese@biomatrixsprx.com

Profession studio photograph of Ted Kramm wearing a green plaid blazer and white collared shirt.

January 8, 2024 – Plantation, FL - BioMatrix Specialty Pharmacy is pleased to announce the appointment of Ted Kramm to the Board of Directors.  

“We are excited to welcome Ted Kramm to the Board of BioMatrix Specialty Pharmacy,” said Nick Karalis, Board Chair. “Ted’s immense experience in the home infusion industry will be invaluable to BioMatrix as we continue to grow and focus on specialty infusion services. He will play a crucial role in the company’s strategic investments in software, technology, and expansion locations as we continue our dedication to making a difference in our patients’ lives.”

Kramm most recently served as Chief Executive Officer of Molecular Designs, a leader in the molecular diagnostic industry. Prior to that he was the co-founder and Chief Executive Officer of AxelaCare Health Solutions and Vice President of Operations at US BioServices. He has more than 30 years of experience in building successful home infusion and specialty pharmacy companies. Kramm is a pharmacist and holds a bachelor’s degree from Philadelphia College of Pharmacy, now part of St. Joseph’s University.

About BioMatrix Specialty Pharmacy

BioMatrix is a nationwide, independently owned specialty infusion pharmacy with decades of experience in specialty infusion and a compassionate care team that helps patients navigate the often-challenging healthcare environment. The company has been recognized on the INC 5000 list of fastest growing companies in America, recognized by The National Association for Business Resources (NABR) as a “Best & Brightest Company to Work For in the Nation” from 2019 to 2023, and carries several industry leading healthcare accreditations. To view current BioMatrix career opportunities visit: https://bit.ly/3JMpAU6

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BioMatrix Specialty Pharmacy Announces Kathee Kramm as CEO

BioMatrix Specialty Pharmacy Announces Kathee Kramm as CEO

Media Contact: Tara Marchese
Corporate Director of Marketing
Tel: 954-908-7636
Email: tara.marchese@biomatrixsprx.com

Professional head shot of Kathee Kram, a white woman with blond hair wearing a red shirt

January 2, 2024 – Plantation, FL - BioMatrix Specialty Pharmacy announced today that the Board of Directors has appointed Kathee Kramm as Chief Executive Officer, succeeding Nick Karalis, founder and former CEO. Nick will assume the role of Executive Chairman and will lead the company’s pursuit of key strategic growth initiatives. This exciting change is the culmination of a year-long succession plan and an accelerant to BioMatrix’s growth in specialty infusion.

“Kathee’s leadership and proven performance at BioMatrix makes her a natural choice to be the next CEO,” said Nick. “We have continued our investment and focus on specialty infusion, bleeding disorders, and manufacturer support services.  BioMatrix is well positioned, and Kathee is uniquely qualified to accelerate growth while maintaining a strong culture focused on quality patient care.”

Kathee has served as BioMatrix’s President and COO since May of 2023. Prior to BioMatrix, Kathee was co-founder and President of AxelaCare Health Solutions, a leading national provider of specialty home infusion services. Prior to AxelaCare, Kathee was a co-founder of Home Patient Care which was sold to Amerisource Bergen and rebranded as US BioServices. 

“I’m honored and excited to be chosen to succeed Nick in the next phase of BioMatrix’s growth as a specialty infusion provider,” stated Kathee. “It is a privilege to lead this exceptional, high-integrity company focused on patient care. I look forward to leveraging my experience and working with Nick and the rest of the BioMatrix team in making a difference in the lives of the patients we serve.”

“On behalf of the Board of Directors and the employees of BioMatrix, we would like to thank Nick for his immeasurable contributions to BioMatrix. We appreciate his support and dedication to BioMatrix and look forward to continuing to work with him in his new role as Executive Chairman of the Board,” said Daniel Jinich, Managing Partner of ACON Investments, L.L.C. “We believe Kathee’s strong leadership skills, commitment to compliance, and experience in specialty infusion will be a catalyst for growth and expansion in our next chapter at BioMatrix.”

About BioMatrix Specialty Pharmacy
BioMatrix is a trusted, independent specialty infusion pharmacy with decades of experience. Our compassionate care team helps patients navigate the often-challenging healthcare environment. We work closely with our patients, as well as their family and their healthcare providers, throughout the patient journey, staying focused on continuity of care and optimal clinical outcomes.

Every day, in every interaction, we are dedicated to making a difference in people's lives.

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Moving Forward

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By Julian Macdonald

A young white male leans back and sings passionately into a microphone.

When I was young, I lacked a dream to chase. My head was always in the clouds, without a goal on the horizon to pursue. My days were filled with school, television, and sleep. There weren’t a lot of things that piqued my interest.

My parents recognized my dilemma and tried to get me involved with any hobby or sport possible. As a result, I wore many hats as a child, painter, potter, and even a boy scout. However, it was a trip to the nearby local theatre that filled me with dread. I asked my dad to please call off the meeting with the director, but he wouldn’t. He was certain that he had found it for me: the spark. It brings me no joy to admit he was, in fact, right.

No matter how hard I tried not to enjoy performing, it intrigued me. I had found my home… my passion. Nothing makes me so excited or fulfilled as when I am singing on a stage. My first audition became the catalyst of many to come.

I didn’t have many problems pursuing theater as my life’s work - not stage fright, not passion, not even hemophilia. When it came to my bleeding disorder, I was fortunate. Although I have severe hemophilia A, I had not experienced a joint bleed or any extreme complication until I was in middle school. I did have an inhibitor at an early age, but after almost three years of immune tolerance therapy, my inhibitor was eradicated with no long-lasting effects.

I started becoming aware of how my condition might change how I am perceived by others. I learned it was common not to disclose one’s diagnosis of hemophilia to some people for fear of discrimination. It was important to keep that information confidential unless disclosure was necessary. Unfortunately, I did a remarkably terrible job of keeping it secret. As a kid, I experimented with the idea of making it a part of my social identity.

As I grew older, I was desperate to find somewhere I belonged. Hemophilia camp was that place for me. I didn’t know it at the time, but being around other people who dealt with the same condition I have was a critical part of finding myself. It helped me build confidence and understand how my body functioned on a practical level. At camp, I learned to self-infuse, thereby becoming entrusted with my own treatments. Three times a week on my own, I maintained my regular infusion schedule.

My teenage years were complicated. I became tired of the prophy treatments, and since I had not experienced any serious bleeds, I did not see the point in continuing to infuse nearly every other day since nothing bad ever happened. It became a battle every few days for me to even acknowledge my own disorder.

I enjoyed forgetting about it, but I was always reminded that I was not cured, just fortunate. I got to where I was learning my limits. I would neglect treatment and infuse when I felt a symptom begin to appear. I knew how long I could go without infusing and could sense when a bleed was about to happen. Playing this game, I thought I could do whatever I wanted and that I would never have any consequences. When something had been a part of my life for so long, it was hard to realize that it could complicate my future. Hemophilia was always there; why would it get worse?

I never thought about what a bleeding disorder might mean for my career or what might happen when I moved out on my own. It only takes one terrible bleed to change how active you can be, and in my line of work, mobility was the name of the game. It was just another thing I had not considered. In theatre, anything can go wrong. From mishaps on stage and demanding schedules to long hours of repetitive physical activity, my bleeding disorder could become problematic.

Moving out of my parent’s house and pursuing the last years of college led to a great deal of change, including a change of blood clotting product. The limits I had tested for myself became irrelevant. I had been on the same product for nearly twenty years, and I was still having issues maintaining a treatment schedule. New medication was uncharted territory. Initially it was not as effective and there were a great deal of mishaps, bleeds, and medical scares that I hadn’t experienced before.

Toward the end of my college career, I started to achieve meaningful growth as a person and a performer. I was offered my first professional opportunity in the theatre. I struggled for years trying to force myself out of mistreating my old medical routine and I knew my lack-of routine was unsustainable. If I was going to pursue my future, I had to confront what I had been running from: my own bleeding disorder. Pretending it did not exist was never going to secure my physical health, but regular medication would.

I still had issues keeping my hemophilia under control, but I was having more success with the new medication. It turned out being compliant with a treatment plan kept the symptoms at bay pretty effectively.

Having graduated college, I feel there are a great deal of possibilities open to me that were not before. As a full-time performer, I now find myself in a constant rehearsal cycle, and it is exhilarating. Through intense dance routines, long hours of movement, and still having the energy to be with friends, my disorder does not get in the way. 

I spend every day among accomplished professionals with the same devotion to their art the way that I have come to appreciate. In achieving compliance with my medication, I have found confidence I didn’t know I could have. 

My disorder hadn’t been getting in my way; it was me. The liberating part about actively confronting my diagnosis was that I could free myself of the obstacles that kept me subdued. Having a medical diagnosis was never something I could control, and I spent a long time running from it. However, I can take charge of my own future. It turns out a big part of that was as simple as a little discomfort and inconvenience in exchange for a world of possibilities.

Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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Beyond the Swagger

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By Felix “Swagger” Jacquez Garcia

Back in the day (pre-2000s), most adult community members with severe hemophilia had joint damage from lack of prompt treatment, perhaps an inhibitor, or the infamous hardheaded noncompliance from which some of us suffered. Though plenty of damage happened in wrists, elbows, and shoulders, it seems most of it was in weight-bearing joints – hips, knees and ankles. This resulted in many of us having an obvious limp. We accepted that limp and among our blood brothers found humor in it (call it a coping mechanism). We referred to it as the Hemo Swagger. 

In high school and before my first total knee replacement, I used a cane to get around. I owned that look like I bought it with a Visa card! I even had a couple of fancy tweed and felt hats to complete the haughty look. After healing from knee replacement surgery, it was hard for me to stop carrying the cane. The swagger was gone (at least for a while), and I didn’t need the help to walk, but my cane had been a part of me for such a long time, I struggled to leave it behind.

After high school, I got involved in the bleeding disorders community and quickly realized I wasn’t alone. The Hemo Swagger was a trademark look at every bleeding disorders event I attended! Hemophilia Federation of America even had T-shirts printed with the phrase “It’s not a Limp, it’s a Swagger!” You knew exactly who the blood brothers were by watching them walk from one meeting session to another.

Some of you with young children may feel the urge to feel sad for us about this, but please don’t. The sight literally would bring a smile to my face. I fit in like nowhere else, and that feeling brought me joy. I like to think most of us felt comfort seeing us together like that. Not that we wished pain and discomfort on anyone else – we certainly didn’t, but it brought us a sense of comfort and belonging to know we were not alone in the diagnosis and effects of having a rare bleeding disorder.

In the early 2000s, I began attending advisory board meetings for pharmaceutical companies. I had the opportunity to help influence manufacturers’ educational and marketing materials, the types of programs they sponsored, and even where they focused their research. I remember participating in a meeting and being asked what we saw for the future of hemophilia treatment. 

The two biggest hopes most participants had were treatment in pill form and treatment via subcutaneous injection. At the time, we were told by the experts that neither was realistic. However, the company thought a long-acting product might be the next big thing. For the sake of preserving veins and ensuring prophylactic routines, each of us agreed the improvement would be beneficial for our community. 

Fast forward a few more years, and the first long-acting product hit the market. Soon after, multiple products became available for both hemophilia A and B; treatment options have expanded to allow prophylaxis to become easier for most, and especially for the younger generations. This was the beginning of the decline of the swagger, which for all sorts of reasons, was not a bad thing. 

The evolution of treatment has brought more convenience, efficacy, and less intrusion into the lives of those with a bleeding disorder. This has resulted in increasing adherence to treatment plans and decreasing Annual Bleed Rates (ABR), making it harder to identify a person with a bleeding disorder just by their gait! 

Older guys like me have had surgeries and joint replacements, and many of us now walk with no or barely noticeable limps. The younger generation is faring even better with improved access to health care, new and improved factor products, and prophylactic care. A patient must no longer wait for a joint or muscle bleed to be out of control before receiving treatment.

I still smile when I look at our community gathering at meetings, but now it’s not the Hemo Swagger that makes me smile. It’s the fact we still come together as a community, we still find a commonality, and we still find joy and comradery in one another’s company. I hope future generations never have to experience life with a permanent hitch in their gait, but I am proud to have lived through the days when it was almost impossible to avoid. For those of you who may still have one or if you remember those days, we are family. May we ‘swagger’ together for years to come! 

If you are young and healthy enough to have hopefully avoided serious knee or ankle issues, be sure to thank a “veteran” blood brother or sister for paving the path. Our community fought hard for access to care, demanded better treatments, and pushed for all these new treatment technologies we enjoy today, and more coming in the future (I’m still pushing for a factor pill!).

And about my cane? Since my surgery and treatment have been successful, my cane is now used to shift the AC vent up and down. Don’t worry bleeding disorders family, our bond—whether visible or not—still runs deep through our veins. #HemoStrong

Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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Pharmacy Benefit Managers: The Squeeze Is on the Health Care Middlemen

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By Shelby Smoak, PhD

If you’ve been watching the news, you have likely heard some chatter about Congress investigating Pharmacy Benefit Managers (PBMs) and creating legislative bills to address concerns with PBMs. You may have also seen a frequent anti-PBM commercial where a patient tries to pick up her doctor–approved medication at a pharmacy. A man jumps in and takes it away, saying she can’t have that particular medication; that she will have to use another one. She then replies, “But you’re not my doctor.” But, he is her PBM...

What are PBMs? What do they do? And why is Congress investigating them? Let’s get started.

What is a PBM?

A pharmacy benefit manager, or PBM for short, is a third-party partner with a health insurance plan that provides prescription drug benefits to the plan members. PBMs function as an intermediary between the entities involved in getting prescription drugs from the manufacturer to the patient’s individual insurance plans.

PBMs create drug formularies, establish drug inclusions and exclusions, and institute specialty drug-cost tiers; they negotiate drug rebates, create pharmacy networks, and handle the claim billing, processing, and payment for drug benefits.

When did PBMs start?

PBMs began operating in the 1960s when they helped insurers control drug spending by using formularies and administering drug claims. Their role expanded slightly in the 1970s and 1980s. It wasn’t until the 1990s that PBMs began to change and expand more broadly. Initially, they were acquired by pharmaceutical companies, but the Federal Trade Commission (FTC) ended the practice, citing concerns over conflicts of interest.

Today, there are over 66 PBMs; however, the top three control almost 89% of the market. Many PBMs are also owned by an insurance provider, a position that echoes the FTC’s concerns expressed several decades ago.1

What does a PBM do?

PBMs work in the background on prescription drugs. They play no role in the physical distribution of drugs, but handle payment and rebate negotiations between the manufacturers, wholesalers, pharmacies, and insurance plans.1

Do I have a PBM?

Yes. If you have a health insurance plan, you have a PBM. In commercial plans, the PBM may be more controlling and restrictive, but even government plans like Medicare use a third-party PBM to help manage prescription drugs for their members.

Is my bleeding disorder medication impacted by a PBM?

Maybe. Historically, PBMs have not been involved in injectables like bleeding disorder medications because these drugs fell almost exclusively on the medical benefit side of insurance benefits and were thus immune from pharmacy claims. But recently, coverage for products to treat bleeding disorders has fallen under prescription drugs, and thus PBMs.

With that, PBMs have made inclusions and exclusions of certain hemophilia and VWD products on their drug formulary. If a VWD, hemophilia A or hemophilia B product is excluded by your PBM, they may not pay for that particular product and will likely intend for you to use another medication.

This means if you are a patient subscriber and your PBM does not support the bleeding disorder medication you are currently using or intend to start using, it may not be covered. Check with your health insurance plan and PBM for more information.

What about copay accumulator adjusters and copay maximizers? Are those part of PBMs?

Yes! Copay accumulator adjusters and copay maximizers are operated by PBMs. When the PBM institutes a copay accumulator, the money paid by manufacturer copay cards for your infusion brand product does not count towards your deductible and out-of-pocket but is instead absorbed by the PBM. You are still responsible for those out-of-pocket cost-sharing amounts.

PBM Investigation and the Law

Why is Congress investigating PBMs?

To answer that question, you must first understand how PBMs make their money.

How do PBMs make their money?

PBMs earn their money in three primary ways:1

  1. Through an administrative fee for their services

  2. Through “spread pricing,” which is the difference between what is paid to pharmacies and the negotiated payment to health plans.

  3. Through shared savings, which is the amount a PBM keeps from a discounted or rebated price from drug manufacturers.

PBMs also earn income by driving patients to in-house pharmacies or PBM-owned specialty pharmacies.

So then, why is Congress investigating PBMs?

According to testimony by a senior economics fellow, Karen Van Nuys, PhD, provided to the Senate Finance Committee this year, evidence shows that PBMs “leverage their position to extract profits in ways that are detrimental to patients, payers, and the drug innovation system more broadly.”

In other words, PBMs negotiate drug prices that are often more favorable (profitable) to themselves than more affordable for patients, and PBMs take money from the healthcare ecosystem that might be better served in drug development. Van Nuys also claims that PBMs increase drug costs and, as example, states that Medicare pays almost 21% more for the same drugs that can be purchased at Costco.2

Going back to how PBMs earn money, some economists argue that the structure inherently favors PBMs seeking a higher drug price from a manufacturer because they could then increase the rebate amount and thus increase the PBM’s earnings. Furthermore, as another testifier to Congress put it, “PBMs force manufacturers to raise their list price, in exchange for formulary placement.”3 Remember, PBMs include and exclude drugs from their formularies. If a PBM excludes a manufacturer’s drug, not only will patients lose access to that drug, but manufacturers would, necessarily, lose revenue from those potential drug sales.

Congress is investigating the truth of these matters and trying to answer the question: Do PBMs increase drug costs?

Are there any proposed legislative bills to address the PBM issue?

Yes, there are several proposed bills in Congress and the Senate. Here are a few:

HELP Copays Act (H.R. 830|S. 1375): “Help Ensure Lower Patient Copays Act”

Seeks to require any third-party payment, financial assistance, product discounts or vouchers, copay assistance or other reductions to apply to a patient’s out-of-pocket expenses.4,5

Patients Before Middlemen (PBM) Act: (S. 1967)

Seeks to prohibit PBM compensation based on the price of the drug as a condition of entering into a contract with Medicare Part D plan.6

Strengthening Pharmacy Access for Seniors Act (S. 2405):

Seeks to increase transparency measures on PBMs and provide seniors with additional options to fill their prescriptions. The bill would end limitations or restrictions that PBMs often place on certain medications without the PBM clarifying its reasoning.7

Pharmacy Benefit Manager Transparency Act of 2023 (H.R. 2816|S.127):

These bills would make “spread pricing” (charging the plan a different amount than the PBM reimburses the pharmacy) illegal and would end “clawbacking” reimbursement payments made to pharmacies.8,9 Pharmacies do not “pay” the PBM, the PBM “clawsback” or deducts paid claim funds directly from the pharmacy’s bank account often without notice and/or with questionable reasoning, often weeks or months later.

Health Care Price Transparency Act (H.R. 4822|S. 1130):

Aims to give transparency and access to pricing information on prescription drugs. Insurance plans must publish the in- and out-of-network charges for covered items and services and the negotiated prices for covered prescription drugs. Plans must provide a tool for consumers to search for this cost information.10,11

Hidden Fee Disclosure Act (H.R. 4508):

Requires that providers give patients transparent cost data from price comparisons before providing treatment. Aims to bolster requirements for PBMs to disclose compensation to plan sponsors and other fiduciaries.12

What’s going on in Florida regarding PBMs?

So glad you asked! Florida is the first state to pass legislation restricting PBM operations within the state. The bill increases oversight of PBM operations and stops a PBM from requiring patients to use an in-house or mail-order pharmacy also owned by the PBM. Its intent is to return business to local pharmacies.13

How is this going to affect me and my medication?

For the time being, nothing will change. Florida residents on state plans may see some differences next year through fewer restrictions and increased pharmacy choices for their prescriptions. The Congressional bills are yet in the future but can result in positive outcomes for patients should they gain support and become law.

What about the Federal Trade Commission (FTC)?

The Federal Trade Commission is also investigating PBMs for anti-competitive practices, the same issue that caused them to intervene in the 1990s with pharmaceutical manufacturers and their own PBMs. The six largest PBMs have been issued “compulsory orders.” These require those PBMs to provide information and records of their business practices.

The FTC has indicated it is seeking information on leveraging fees and clawbacks to non-affiliated pharmacies; steering patients to affiliated pharmacies; using opaque reimbursement methods; and negotiating rebates with pharma manufacturers that impact patient drug cost.

The FTC has also withdrawn its past letters of advocacy for PBMs and has deemed their past conclusions unreliable at this point. Basically, the FTC is saying that what they determined ten or more years ago about PBMs is no longer valid; they want to re-investigate PBMs and draw a more current conclusion regarding anti-competitive behavior.14

What can I do?

If you want to learn more about PBMs, reach out to the BioMatrix Education Team at education@biomatrixsprx.com. You can also contact your Congressional representatives in support.

Financial Resource Guide

Living with a chronic condition can create additional healthcare costs while also impeding one’s ability to work. Our financial resource guide can help. 

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

References

  1. “Pharmacy Benefit Managers.” NAIC, 1 June 2023, content.naic.org/cipr-topics/pharmacy-benefitmanagers#:~:text=Background%3A%20When%20insurance%20companies%20began,formularies%20and%20administered%20drug%20claims.

  2. Van Nuys, Karen. “Testimony on Pharmacy Benefit Managers and the Prescription Drug Supply Chain.” USC Schaeffer, 31 Mar. 2023, healthpolicy.usc.edu/research/testimony-on-pharmacy-benefit-managers-and-the-prescription-drug-supply-chain/.

  3. Levitt, Jonathan. “Pharmacy Benefit Managers and the Prescription Drug Supply Chain: Impact on Patients and Taxpayers.” United States Senate Committee on Finance. 30 March 2023. https://www.finance.senate.gov/imo/media/doc/Jonathan%20Levitt%20Testimony%20US%20Senate%20Committee%20on%20Finance%20-%20Frier%20Levitt%20 %20March%202023_Redacted1.pdf

  4. Text of S. 1375: HELP Copays Act (Introduced version) - GovTrack.us. (n.d.). GovTrack.us. https://www.govtrack.us/congress/bills/118/s1375/text.

  5. Carter, Barragán, Miller-Meeks, and DeGette introduce bipartisan legislation to ensure copay assistance counts for patients. (2023, February 9). Congressman Buddy Carter. https://buddycarter.house.gov/news/documentsingle.aspx?DocumentID=10927.

  6. Wyden, Crapo, Menendez, Blackburn, Tester and Marshall introduce bipartisan legislation to reform PBMs and bring down the cost of prescription drugs. (2023, June 14). https://www.finance.senate.gov/chairmans-news/wyden-crapo-menendez-blackburn-tester-and-marshall-introduce-bipartisan-legislation-to-reform-pbms-and-bring-down-the-cost-of-prescriptiondrugs#:~:text=The%20PBM%20Act%20would%3A,%2C%20rebates%2C%20or%20other%20fees.

  7. Thune introduces bill to increase transparency of the prescription drug supply chain. (n.d.). U.S. Senator John Thune. https://www.thune.senate.gov/public/index.cfm/2023/7/thune-introduces-bill-to-increase-transparency-of-the-prescription-drug-supply-chain

  8. Rep. Harshbarger Introduces the PBM Sunshine and Accountability Act. (2023, April 26). Representative Diana Harshbarger. https://harshbarger.house.gov/media/press-releases/rep-harshbarger-introduces-pbm-sunshine-and-accountability-act#:~:text=2816%2C%20the%20PBM%20Sunshine%20and,and%20value%2Dbased%20PBM%20choices.

  9. United States, Congress, Senate. “Pharmacy Benefit Transparency Act of 2023.” Congress.gov. https://www.congress.gov/bill/118th-congress/senate-bill/127#. 118th Congress. Senate Bill 127. Introduced Jan. 26, 2023.

  10. Rubin, J. (2023). Ways and Means Committee Approves Legislation Injecting Greater Transparency in Health Care Prices And Lowering Costs for Patients. House Committee on Ways and Means. https://waysandmeans.house.gov/ways-and-means-committee-approves-legislation-injecting-greater-transparency-in-health-care-prices-and-lowering-costs-for-patients/.

  11. United States, Congress, Senate. “Health Care Price Transparency Act.” https://www.congress.gov/bill/118th-congress/senate-bill/1130. 118th Congress. Senate Bill 1130. Introduced Mar. 30, 2023.

  12. McDermottPlus Check-Up: July 14, 2023 - McDermott+Consulting. (2023, July 14). McDermott+Consulting. https://www.mcdermottplus.com/blog/weekly-check-up/mcdermottplus-check-up-july-14-2023/.

  13. Morgan, Lewis and Eric P. Knowles. “Florida Enacts Long-Awaited PBM Transparency and Accountability Bill Into Law.” Frier Levitt Attorneys at Law. 11 May 2023. https://www.frierlevitt.com/articles/florida-enacts-long-awaited-pbm-transparency-and-accountability-bill-into-law/.

  14. FTC Deepens Inquiry into Prescription Drug Middlemen. (2023, May 17). Federal Trade Commission. https://www.ftc.gov/news-events/news/press-releases/2023/05/ftc-deepens-inquiry-prescription-drug-middlemen.

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Understanding Specialty Drug Coverage: Medical and Pharmacy Benefit

By Justin Lindhorst and Regina Valenzuela

Have you ever felt confused or unsure about your healthcare coverage? If you answered yes, you’re not alone. In fact, a recent survey found 56% of Americans report feeling “completely lost” when it comes to understanding their health insurance.1

For patients taking specialty medications, understanding coverage can be even more challenging. This article provides an overview of specialty drug coverage under the medical and pharmacy benefit and includes links to additional resources to help you understand your health insurance.

Background

In the past, health services were all covered under the insurance plan’s “major medical” benefits – the pharmacy benefit did not exist. Starting in the 1960s, insurance companies began providing coverage for prescription medication. The first Pharmacy Benefit Managers (PBMs) were created during this time to act as an intermediary, help health insurance companies control cost, set prescription drug formularies, and process a large volume of prescription drug claims. PBM management of prescription drugs helped create a separate administrative structure outside of major medical benefits for prescription drugs – the pharmacy benefit. In today’s healthcare landscape, the three biggest PBMs control pharmacy benefits for nearly 270 million Americans.2

According to the Kaiser Family Foundation, 48.5% of the population in the United States have health coverage through their employer; 6.1% have individual non-group coverage; 21.1% have Medicaid, 14.3% have Medicare, and 1.3% have military health coverage.3 Coverage for prescription medication varies across each of these different health plans. For employer based, non-group individual coverage, Medicaid, and TRICARE – coverage for health services are managed under a pharmacy benefit and medical benefit. Health insurance companies typically manage their own medical benefit package, but some choose to outsource management of their pharmacy benefit to a separate PBM. This is why some patients have a medical benefits card, and a separate pharmacy benefit prescription drug card. For patients on Medicare – Part A covers in-patient services/hospitalization; Part B is the “medical benefit,” providing coverage for out-patient services, home-health care, and most infused specialty medications; and Medicare Part D covers pharmacy benefits.

Pharmacy Benefit

Many patients who are prescribed specialty medication receive training from a medical provider so they can take their medicine at home. This includes patients on oral, topical, intravenous, or subcutaneous therapies. Specialty medication is typically covered under the pharmacy benefit when the patient self-administers the prescribed medication at home. When a specialty medication is covered under the pharmacy benefit, the insurance company’s PBM has a lot of control over how and whena patient can access their prescribed medicine. Patients may be subject to formulary restrictions, step-therapy, specialty pharmacy mandates, and copay accumulators. Under the pharmacy benefit, drugs are placed into a classification system of different tiers. Lower cost or generic drugs are typically tier I, and specialty medications mostly fall into tier IV – the highest tier. Drug tiers impact patient out-of-pocket costs such as copay and coinsurance. The higher the tier, the greater the out-of-pocket expense for the patient. Coverage under the pharmacy benefit may also be subject to a deductible or max out-of-pocket separate from the medical benefit. Tier IV medications are also subject to more PBM utilization management techniques such as prior authorization. Patients may need to work with their specialty pharmacy and medical provider to demonstrate “medical necessity” for their prescribed medication before they can receive it.

Medical Benefit

Coverage for specialty medication under the medical benefit typically occurs when the drug is administered by a health care professional in a hospital, physician office, or infusion center. Providers often use the “Buy and Bill” method where the drug is purchased and kept by the provider and then the claim is billed to the insurance company after the medication is administered to the patient. The insurance company reviews the claim, and the provider is paid at a later date. Out of pocket expenses for specialty drugs processed under the medical benefit often include deductible, co-pay, and or coinsurance. For patients who have Medicare, 80% of the office-administered drug is covered by Medicare Part B, with the remaining 20% picked up by a supplemental plan purchased by the patient.4 Coverage under the medical benefit occurs independent of the plan’s PBMs, which means patients may avoid some of the formulary restrictions, step-therapy, or pharmacy mandates imposed under the pharmacy benefit.

But Wait! There’s More. 

In the world of health insurance, “It depends” is a common answer to many coverage questions. As previously mentioned, specialty medication is typically covered under the pharmacy benefit if self-injected/self-administered and under the medical benefit when administered by a healthcare provider. But there are cases where coverage is offered for self-injected medication under the medical benefit – typically under employer-based or non-group commercial health plans. Coverage provided for self-injected medication under the medical benefit may be an attractive option for patients who do not wish to have their pharmacy mandated to them by a PBM, when the pharmacy benefit includes step-therapy, a copay accumulator, or the prescribed drug is not included on the pharmacy benefit formulary. 

For patients on Medicare – it’s important to know that most infused specialty medications such as factor products for patients with a bleeding disorder are covered under Medicare Part B, not Medicare Part D. This has a significant impact on out-of-pocket costs because under Part B, 80% of the drug is covered by Medicare, and the remaining 20% is picked up by the patient’s supplemental plan. Under Medicare Part D, there is currently no max-out-of-pocket for prescription drugs – though there is legislation that will begin to address this issue in 2023. 

Another important consideration is how claims billed to the pharmacy or medical benefit impact a patient’s deductible and max out-of-pocket. Many patients with a chronic, expensive, lifelong condition become accustomed to meeting their deductible or max out-of-pocket with their first shipment of medication in the new year. This is because when covered under the pharmacy benefit, associated out-of-pocket costs are immediately applied toward the deductible and max out-of-pocket. Under the medical benefit, the claim submitted by the provider’s office who administered the drug undergoes review before it is approved. This can take time, and associated out-of-pocket expenses take longer to be applied toward a patient’s deductible and max out-of-pocket. 

Still Confused? Your Specialty Pharmacy Can Help.

Health insurance is confusing. The healthcarelandscape in the United States is complex and fragmented, and it’s often a good idea to tap an expert to better understand your health coverage. Reputable specialty pharmacies employ teams of experts in insurance billing and reimbursement. These teams understand how to properly secure authorization for prescribed specialty therapies, how to correctly bill insurance plans for services, and how to connect patients with appropriate resources and programs focused on reducing financial burden. They can also help patients to better understand their coverage for specialty medication by conducting a benefits investigation. A thorough benefits investigation completed by an expert can help patients gain a solid understanding of their coverage options and associated out-of-pocket expenses for specialty medication under their insurance plan – without the jargon and red tape.

BioMatrix is an infusion-focused specialty pharmacy supporting patients with bleeding disorders, autoimmune disorders, neurological disorders, and other rare health conditions. If you’d like assistance understanding how your specialty medication is covered—we can help. Use the form below and we’ll conduct a no-obligations benefit investigation to help you understand coverage for your prescribed specialty infusion therapy.

Financial Resource Guide

Living with a chronic condition can create additional healthcare costs while also impeding one’s ability to work. Our financial resource guide can help. 

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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Video: Navigating Open Enrollment

Are you ready for open enrollment? Open enrollment occurs once annually and is the period of time when consumers can make changes to their health insurance benefits.

Watch this webinar for tips and key information as it relates to:

1. Open Enrollment Dates

2. Insurance Terms

3. Key Questions to Ask

4. ACA Plans

5. Medicare

6. Plans + Policies

7. Financial Assistance Programs

Please direct any questions related to this webinar by email to: education@biomatrixsprx.com

Thank you!

DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE

All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

We value your privacy. Review our Privacy Policy here.

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Understanding Qualifying Life Events for Health Insurance

Life is unpredictable, and circumstances can change in an instant. When it comes to health insurance, these changes can impact your coverage options. Typically health insurance plan enrollment and modifications to existing health insurance plans can only happen during Open Enrollment. This is a window of time that you can enroll or make changes to your health insurance plan. This window of time differs between ACA plans, employer-sponsored plans, and Medicare. However, when life circumstances change, fortunately there's a way to modify your health insurance coverage outside of Open Enrollment: Qualifying Life Events (QLEs). Let's dive into some common QLEs and why these events matter.

1. Marriage or Domestic Partnership

Getting married or entering into a domestic partnership often means combining lives and therefore modifying insurance plans. You and your spouse or partner may have different coverage options, and a QLE gives you the chance to reassess and potentially join the same plan.

2. Birth or Adoption

The addition of a new family member is an exciting event, but it also brings the responsibility of ensuring they have adequate health coverage. Most insurance plans provide a window of time to add your new child to your policy.

3. Loss of Coverage

Losing your existing health insurance can be stressful. It could be due to reasons such as losing your job, aging out of your parents' plan, or no longer qualifying for Medicaid. A QLE allows you to explore your options, including plans on the ACA Health Insurance Marketplace.

4. Relocation

Moving to a new zip code or county can impact your healthcare choices. Different areas may have different insurance plans available. A change in location often triggers a QLE that allows you to reevaluate your coverage.

5. Divorce or Legal Separation

The end of a marriage or domestic partnership can also mean the end of shared health insurance. A QLE provides a chance to find a new plan that suits your individual needs.

6. Changes in Income

Significant changes in your income, such as job loss or a significant raise, can affect your eligibility for subsidies or government assistance. Reporting these changes promptly can help you get the financial support you need.

7. Aging Out of Parent's Plan

Many young adults are covered under their parents' health insurance until they turn 26. When you reach this age, it's time to explore your own coverage options, often through a QLE.

8. Gaining Citizenship or Lawful Presence

Becoming a U.S. citizen or gaining lawful presence can open doors to new health insurance options and may trigger a QLE.

9. Changes in Household Size

If your household size changes due to marriage, divorce, or other reasons, it can impact your eligibility for certain insurance plans and subsidies.

10. Other Exceptional Circumstances

Some QLEs are less common but are equally important. These might include becoming eligible for tribal membership, leaving incarceration, or gaining status as an American Indian or Alaska Native.

In all these scenarios, it's crucial to act promptly. You typically have a limited time window, often 60 days from the date of the event, to enroll or make changes to your health insurance plan. Missing this window could mean waiting until the next Open Enrollment period, which can be costly if you're without coverage in the meantime.

In conclusion, Qualifying Life Events provide a safety net for life's unexpected changes. They help ensure you have access to the health coverage you need when you need it most. If you experience one of these events, don't hesitate to explore your options on HealthCare.gov or through your state's health insurance marketplace. Your health and peace of mind are worth it.

BioMatrix Specialty Pharmacy can also help break down barriers to care and cut red tape by:

  • Conducting a thorough benefits investigation on your behalf ​

  • Providing a detailed outline of coverage specific to your therapy, including whether it is covered under the medical or pharmacy benefit and if a prior authorization is required ​

  • Outlining financial responsibility for prescribed therapy and referring to appropriate financial assistance programs ​

  • Identifying specialty pharmacy service providers available under your plan ​

  • Providing support for timely prior-authorization and appeals 

Financial Resource Guide

Living with a chronic condition can create additional healthcare costs while also impeding one’s ability to work. Our financial resource guide can help. 

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

Read More

How to Use HealthCare.gov

HealthCare.gov is a website where people who qualify can sign up for an Affordable Care Act (ACA) health insurance plan—aka a health insurance plan that meets ACA standards established by the federal government. This website serves as the platform for ACA’s Health Insurance Marketplace and offers insurance coverage to individuals, families, and small businesses who may otherwise be uninsured and are not eligible for government healthcare programs like Medicare.

Who can enroll in health coverage through the Marketplace?

Anyone who lives in the US, is a US citizen or national, and not incarcerated can enroll in health coverage through the Marketplace. ACA subsidies, however, are determined by the number of people in a household and income. If your employer offers health insurance, you also have the right to decline that health insurance and enroll in an ACA plan instead. You can find out if you’ll save money with an ACA plan based on your income by clicking here.

When can I enroll/signup?

Typically, you can enroll in a health insurance plan or make changes to your existing insurance plan during Open Enrollment. Open Enrollment for ACA plans begins November 1st for 2024 plans. If you enroll by December 15th, your coverage will start January 1st. If you enroll by January 15th, your coverage will start February 1st. 

Outside of Open Enrollment, certain “qualifying events” can make you eligible to enroll or make changes to a health insurance plan anytime of the year. Some of these events include:

  • Getting married or divorced

  • Having a baby

  • Loss of health coverage

  • Moving to a different zip code or county

You can enroll anytime of the year and start coverage immediately for Medicaid or the Children’s Health Insurance Program (CHIP).

What’s required when creating a HealthCare.gov account?

Setting up an account on HealthCare.gov is fairly simple. You’ll be asked for basic information like your name, address, email, and social security number. You’ll then be prompted to create a username and password and will be given some options for additional account security.

How do I use HealthCare.gov?

Here’s a step-by-step guide on how to enroll in an ACA health insurance plan on HealthCare.gov.

  1. Visit the Website: Go to the HealthCare.gov website by typing "www.healthcare.gov" into your web browser's address bar. You can also click here to get started.

  2. Create an Account: If you are a new user, you will need to create an account on the website. You'll be asked to provide some personal information, such as your name, contact information, and Social Security number.

  3. Log In: If you already have an account, log in using your username and password.

  4. Start an Application: Once you're logged in, you can start a new application for health insurance coverage. You'll be asked to provide information about your household, including the number of people in your household, their ages, and their income.

  5. Explore Available Plans: After entering your household information, you can browse and compare health insurance plans available in your area. You can filter the plans based on various criteria like monthly premium cost, coverage level, and provider network.

  6. Determine Eligibility: The website will help determine if you are eligible for programs like Medicaid or the Children's Health Insurance Program (CHIP). If you qualify for these programs, you will be directed to the appropriate application process.

  7. Enroll in a Plan: Once you've selected a health insurance plan that fits your needs and budget, you can start the enrollment process. You'll provide more detailed personal information and confirm your selection.

  8. Review and Confirm: Carefully review the plan details, costs, and coverage options before confirming your enrollment. Make sure the plan you choose covers your healthcare needs.

  9. Submit Documents: In some cases, you may need to submit supporting documents, such as proof of income, to verify your eligibility.

  10. Pay Your Premium: After enrolling in a plan, you will need to pay your monthly premium to activate your coverage. The website will provide information on how to make payments to your selected insurance provider.

  11. Keep Your Information Updated: It's important to keep your account information and application up to date, especially if your circumstances change (e.g., changes in income or household size).

  12. Renew Your Coverage: If you already have a HealthCare.gov plan, you will need to renew your coverage during the annual Open Enrollment period or when you experience a Qualifying Life Event that allows for a Special Enrollment Period.

If you have specific questions or need assistance with the enrollment process, HealthCare.gov offers customer support and live chat options on their website.

BioMatrix Specialty Pharmacy can also help break down barriers to care and cut red tape by:

  • Conducting a thorough benefits investigation on your behalf ​

  • Providing a detailed outline of coverage specific to your therapy, including whether it is covered under the medical or pharmacy benefit and if a prior authorization is required ​

  • Outlining financial responsibility for prescribed therapy and referring to appropriate financial assistance programs ​

  • Identifying specialty pharmacy service providers available under your plan ​

  • Providing support for timely prior-authorization and appeals 

Financial Resource Guide

Living with a chronic condition can create additional healthcare costs while also impeding one’s ability to work. Our financial resource guide can help. 

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

Read More

Meet Our BioMatrix Pharmacists

BioMatrix is proud to serve patients requiring infused or injectable medications. Our multidisciplinary team works together to help patients gain and maintain access to prescribed therapy while providing support resources designed to make managing chronic health conditions a little easier.

We invite you to meet some of our pharmacists who apply their extensive knowledge and expertise to serving patients.

Diana Bada de Ross | Pharmacist in Charge—Canoga Park, California Location

“To me, treating patients like family means aiming for the best health care by providing nonjudgmental and unconditional service.”

With a passion for helping people be well, Diana has been a pharmacist for 12 years. She strives to engage people in their care and enhance their quality of life by providing effective treatment with timely intervention. In addition to being a PharmD graduate, Diana has her BA in International Business.

Contact Diana

Office: (800) 404-1963
Email: diana.badaross@biomatrixsprx.com

Jessica Caballero, PharmD | Pharmacist in Charge—Plantation, Florida Location   

“I’ve always enjoyed science and healthcare, as well as caring and helping others. I grew up in a developing country and saw firsthand the need for efficient and compassionate healthcare. I realized I could make a difference by becoming a healthcare professional, so I became a Pharmacist. I also volunteered in different brigades in remote areas where the access to healthcare was minimal to none. It has been a very rewarding experience, and I hope I can continue to do so.”

With over 15 years of experience as a pharmacist, Jessica is dedicated to going the extra step to provide supplies and life sustaining medications for patients in a timely manner. She believes in being mindful and trying to put herself in her patients’ positions as well as providing individualized care. Jessica is a Licensed Pharmacist in various states in the USA, has her Masters Degree in Business Administration with Health Management Specialization, and is bilingual in English and Spanish. She also holds a Heart Failure Certification, a Sterile Compounding and Aseptic Technique Certification from Texas Society of Health System Pharmacists, and a Non-Sterile Compounding Certification from The Science of Pharmaceutical Compounding Non-Sterile Training by Medisca.

Contact Jessica

Office: (877) 337-3002 ext 1230
Email: jessica.caballero@biomatrixsprx.com

Alex Leybelman, PharmD | Pharmacist in Charge—Totowa, New Jersey Location

“I always had a passion for science and medicine from an early age. Working in healthcare allows me to combine my passion for science with my love for patient care. I strive to go above and beyond for our patients to make sure that their healthcare needs are taken care of so they can live their lives without worry!”

With a passion for science and patient care, Alex has been a pharmacist for three years. His goal is to provide patients with accessible healthcare, at an affordable price, and with exceptional customer service. Alex has a Bachelor’s in Biology as well as a Doctor of Pharmacy from Rutgers University. He is currently working on his MBA at Oklahoma State University.

Contact Alex

Office: (877) 567-8087
Email: alex.leybelman@biomatrixsprx.com

Beth Curry, RPh | Pharmacist in Charge—Dublin, Ohio Location

"My number one goal in specialty pharmacy is to continue to provide individualized care for each patient."

With her love of both helping people and animals, Beth has been a pharmacist for over 20 years. Her goals in specialty pharmacy include serving patients with care and compassion as well as continuing the pharmacy center of excellence program at BioMatrix. Beth graduated from Ohio Northern University and has her credentials in both Hospital Pharmacy and Infusion pharmacy.

Contact Beth

Office: (800) 622-9321
Email: beth.curry@biomatrixsprx.com

Joe V. John, PharmD, RPh, CSP | Pharmacist in Charge—Garnet Valley, Pennsylvania Location

“Putting patients first and treating them like family means a lot to me. I’m passionate about making a difference in people's lives.”

Joe has 16 years of experience as a pharmacist. His number one goal in specialty pharmacy for serving patients with a chronic health condition is to determine the effectiveness, safety, and appropriateness of prescribed therapy. Joe is a certified specialty pharmacist with a Doctorate in Pharmacy. He is also a Board-Certified Medical Affairs professional.

Contact Joe

Office: (855) 359-9679
Email: joe.john@biomatrixsprx.com

Lacy Burns, PharmD | Pharmacist in Charge—Memphis, Tennessee Location

“My mom is a nurse, and she always inspired me with how she helps her patients and takes such good care of them. I want to be able to help patients get well and feel better; I love interacting with patients and getting to know them and their families/situations. Having a chronic condition is life changing for families, but I am available to help.”

Committed to being available for her patients, Lacy has served as a pharmacist for 13 years. She wants to ensure her patients and their families have what they need to live a full and active life and can always reach out with questions or concerns regarding their medication. Lacy graduated with her PharmD degree from University of TN Health Science Center and also has a degree in Chemistry with a concentration in Biochemistry from the University of Memphis.

Contact Lacy

Office: (800) 962-6339 ext 1309
Email: lacy.burns@biomatrixsprx.com

Todd Thompson, RPh | Pharmacist in Charge—Tyler, Texas Location

“From the beginning of my career in specialty pharmacy, I’ve always treated patients like family. This means considering whether I’d do the same thing for my own family member.”

Todd has been a pharmacist for 33 years. In serving patients with chronic health conditions, his top priority has always been to help improve a patient’s quality of life in the safest, accommodating manner. Todd has a BS in Pharmacy from Southwestern Oklahoma State University and also has his NHIA Home Infusion certification.

Contact Todd

Office: (877) 321-9870
Email: todd.thompson@biomatrixsprx.com

DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

Read More

,

Navigating Life With Hemophilia

,

By Denise Ruiz

My journey of living with hemophilia is much the same as, yet different than most in our community. Being adopted at just two weeks old, my parents would not have known the reasons behind my ailments and struggles.

As a somewhat clumsy child, I often found myself covered with bumps and bruises; scrapes and scratches always bled much longer than my peers. In puberty, I often had to stay home from school as my menstrual cycles were unbearable with pain and excessive bleeding.

My husband, Jon, and I married in 2004. In July 2006, our first child, Jacob, was born in Washington State. When Jacob was six months old, I took him in for a routine well-baby visit where he received a heel stick. Being in the military, my husband was gone for training as he was scheduled for deployment to Iraq the next month. 

That night I put Jacob to bed as usual. When he woke in the early morning hours, I found his crib bedding covered in blood. Of course, I freaked out – just 22 years old, by myself, with a bleeding baby. Unfortunately, my husband was not able to come home.

At the hospital, the wait for an answer was excruciating. The doctor asked if I had ever been tested for hemophilia. In fact, I had never even heard of it before that moment. Sure enough, Jacob was diagnosed with severe factor IX deficiency. Terror set in, and I immediately began researching what it meant. I was alone and terrified, and it was just the beginning.

Since my husband was going to be gone for a while, we felt it would be best that I move near my parents in California to have help with the baby. My husband ended up being in Iraq for 15 months. I was very fortunate and grateful to have the support of my family during that time.

The following year, it was decided Jacob would have a port placed so he could begin factor replacement three times a week, which I learned to administer at home. For someone with severe hemophilia, I feel Jacob has had a fairly fortunate childhood. With dedicated prophylaxis, he has experienced only a handful of joint bleeds and just one hospitalization due to a fall down a set of stairs.

When Jacob was diagnosed, I was tested as well and found to have 27% factor IX level. The reason for my own symptoms throughout my childhood became clear. I now treat as needed and certainly for any medical procedures.

When Jacob was 4-years old, we welcomed our daughter, Cora – the first of three girls. Ava and Emma followed. Cora is diagnosed with mild factor IX deficiency and is a carrier. Ava and Emma are not affected. My fifth and last pregnancy resulted in the birth of our crazy, comical, wild-child, Brody! At the time, we were stationed in Hawaii, and Brody was born in May, just weeks after COVID-19 paralyzed our country.

Almost from the start, Brody did not fare as well as his older brother. Toward the end of my pregnancy, I was 37 years old and required stress tests twice a week due to my “advanced” age. My daughter broke her arm the night before my appointment, and let’s just say the stress test didn’t go very well. Immediately, I was sent to the hospital and induced. Though the nurses told us it would still be hours before the baby’s arrival, I knew differently. My husband rushed to get to the hospital, arriving just 10 minutes before Brody was born.

Brody’s birth went well; however, a week later, he began developing bruises from the slightest touch, such as his car seat buckle or just being held. He seemed to bruise just by looking at him. Seeing my little boy constantly so black-and-blue was devastating. We wanted to have a port placed, but COVID made everything more difficult. At the time, only children diagnosed with cancer were given clearance to have ports placed.

At Brody’s six-month well-baby medical appointment, he received three vaccinations, two in one thigh and one in the other. One of his legs swelled almost to the point of developing compartment syndrome. I rushed him to the clinic and insisted he be hospitalized. After two hours and several failed attempts, clotting factor was finally administered via a PIC line. It took more than six weeks for the swelling to finally subside and get his leg back to normal. Although we are not sure whether this severe bleed was the instigator, Brody continues to have issues with his hips.

Finally in June of 2020, he was able to have his long overdue port placed. Brody arrived for his surgery covered in bumps, bruises, and even some hematomas. The procedure went well; in short order, most of his bumps and bruises were gone or greatly diminished. Elation and a huge sense of relief settled in knowing I could administer his factor at home as I had been doing with Jacob for several years. Now four years later, Brody continues to do well with factor replacement and his port is holding steady. Jacob is 17 and self-infuses. His port was removed when he was eight years old.

Being a military family, we have moved 17 times in the past 19 years. Currently living in the Washington DC area, we have lived in California, Texas, Washington State, Hawaii, Georgia, and Alabama, moving back and forth to some of the same states. Constantly moving a family already provides many trials and tribulations – throw in a bleeding disorder, and the challenges grow exponentially, especially when having to establish access to care with each move.

I am truly thankful for many of the relationships and friendships we have been blessed to have over the years. I will always be grateful for the Hawaii Chapter, National Hemophilia Foundation for their support; for Ziggy Douglas, the chapter’s executive director who is no longer with us, for taking our family under his wing and for Donna Garner, BioMatrix Patient Care Coordinator, who has seen us through 17 years of moving and access-to-care hurdles. Donna has been our “constant” in all hours of the day and night, from when we lost the ONE bag that could NOT be lost (Jacob’s supply bag) and the countless times someone was hurt and needed extra factor sent ASAP, to just being our support and dear friend through it all.

My husband’s retirement is the light at the end of the moving tunnel. The plan is to leave the military in spring of 2024. We aren’t sure what the future will hold for us, but the message we would like to share is that we know being well-informed and having support is vital to survival in navigating the ever-changing world of living with a bleeding disorder.

Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

Read More