Admin

January 23, 2024

All, Infusion, Immunology, Neurology, Bleeding Disorders, Transplant

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

Admin

January 23, 2024

All, Infusion, Immunology, Neurology, Bleeding Disorders, Transplant

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.

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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.

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Admin

August 15, 2023

All, Bleeding Disorders

Transitioning: The Independence of Self-Infusion

Admin

August 15, 2023

All, Bleeding Disorders

Transitioning from parent-assisted or clinical infusion to self-infusion can be a significant step toward independence for patients with a bleeding disorder. Self-infusing may help patients feel more in control of their bleeding disorder.

Some things to consider when transitioning are:

Age and maturity
Motor skills
Training

Age and Maturity

Some children begin to practice infusing (or assisting in the infusion process) as early as kindergarten. Most children can help with “pushing their factor” and can often tape the gauze on the infusion site by school age. Consider finding ways to have your child participate in the infusion process. As the child grows older, allow them to be more involved in the process and play a bigger role in the infusion.

By the end of elementary school, it is ideal to have your child fully assisting in the process. Many children at this age can identify an appropriate vein for infusing and may also be ready to participate with the venipuncture. By middle school, it is beneficial for your child to be able to perform the self-infusion, whether under supervision or independently.

Motor Skills

Not all children develop equivalent fine motor skills at the same time. Your child’s ability to self-infuse very much depends on their fine motor skills. Typically by middle school, children can be trained to use a tourniquet, use an alcohol wipe to clean the infusion area, hold gauze, and apply tape or a bandage. Using a needle to infuse intravenously is a fine motor skill requiring training and practice. Encourage your child to practice under supervision. Treatment centers, bleeding disorder organizations, healthcare companies, and specialty pharmacies often hold self-infusion clinics or learning sessions. Encourage participation in such medically supervised events as it facilitates the self-infusion process under proper guidance.

Training

Whether for an adult or a child, self-infusion training should be conducted by a medical professional. There are many progressive ideas and helpful hints to help a person excel at infusing a loved one or self-infusion. As one becomes more adept at performing an infusion, preferences and techniques will develop. Be sure to practice safely, use caution, and follow your medical provider’s recommendations.

Home Infusion Steps and Helpful Tips

Even those very experienced in self-infusion sometimes miss a vein. For those living with a bleeding disorder on factor replacement therapy, this 3-page guide provides steps for successful home infusion. The guide also provides helpful tips for infusing a child.

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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!

Learn more

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.

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Admin

August 15, 2023

All, Bleeding Disorders

Transitioning to the Care of Another: A Guide to Help Transition Your Child to the Care of Another

Admin

August 15, 2023

All, Bleeding Disorders

Parents of children with a bleeding disorder may feel tethered to their child. It can be exhausting trying to explain all the details needed to care for them to another person. Because of this, some parents feel they can never leave their child’s side or that no one else can provide proper care for him or her. Lack of trust in others and feelings of being trapped can often take a toll, creating a significant amount of tension for families.

Transitioning the care of your child to another person (family member, babysitter, daycare, etc.) may cause stress if you’re not fully prepared. However, if you plan ahead and set an action plan in motion, a smooth and safe transition can take place, which may result in reduced stress!

Based on experiences from members of the bleeding disorders community, using these steps as a resource may help reduce stress during transition.

Steps for Transition

Assess needs
Review treatment plans and medical scenarios—train your caregiver
Understand when hovering is too much

Assess needs

If your child is recently diagnosed with a bleeding disorder, review with your HTC or clinician his or her potential needs. Some items to consider:

Does your child wear a helmet or other protective gear?
Is your child limited in his/her physical ability?
Are you able to treat your child before leaving him/her in the care of another or will the caregiver need to administer medication?
Are there restrictions to what your child can or cannot do while in care of another?

A family offers this example: “My daughter uses factor weekly, and I administer it prior to her being in the care of another. Although she doesn’t have physical limitations, when leaving her in the care of another, I do not want her wrestling, playing contact sports, etc. I still leave my caregiver with a treatment plan scenario just in case!”

Review Treatment Plans

Depending on your child’s severity, your treatment plan scenario may be adjusted.

Examples of what to include:

What to do in the case of a bloody nose
What to do if the child falls
What to do if the child hits their head

With each of these potential events, have a scenario planned, which almost always includes calling the parent and using RICE (Rest, Ice, Compress, and Elevate).

Parents of a more severely affected child may need to train their caregiver in the administration of factor if their dosing calls for more frequent treatment. In this case, ask a couple caregivers to consider going through the “self-infusion” protocol to learn how to administer your child’s medication.

Understand When Hovering Is Too Much

“What?! I’m a hemo-parent, there is no such thing as too much hovering!” some parents will say. While many parents may identify with this, there is such a thing as too much hovering. Over time, trust builds as you leave your child in the care of another. Though it may be tough at first, hopefully you will eventually feel you can release your anxieties and stop calling the sitter every half hour. After realizing your caregiver follows your instructions and protocols as well as checks-in with you regularly, your anxieties will likely lessen. When you’re able to control the hovering, your child may begin to understand his or her condition is manageable. Your child may also feel less stress and fear—what a wonderful thought that is!

A mom shares, “I’ll confess that my hovering is sporadic. I hover right after a major-medical incident, and I hover during transition (to elementary school, to self-infusion, to high school, and even to college).”

Though as concerned parents we may have an inclination to hover, it’s emotionally and mentally beneficial to parents and children to recognize the tendency and control the urge.

Home Infusion Steps and Helpful Tips

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Patient Navigation Program

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Admin

August 14, 2023

All, Bleeding Disorders

Transitioning: The High School Know-How—A Guide to Help Your Child Transition to High School

Admin

August 14, 2023

All, Bleeding Disorders

The transition to high school is a nerve-wracking time for most teens. New school, new schedule, new teachers, and new friends may create anxiety and nervousness for both students and parents. When you add a bleeding disorder into the mix, it can be downright frightening—if you’re not prepared! This article will help ensure proper steps are being taken to help your child with a bleeding disorder transition to school with ease.

Contact the School Counselor
Continue or Establish a 504 Plan
Contact the School Nurse
Discussion or In-service with School Personnel

Whether you communicate with the various school personnel by phone, email, or face-to-face, be sure to document your discussions in writing. Keep a log of meetings with dates, times, subject matter, and results of meetings for future references.

1. Contact the School Counselor

Speak with the school counselor to discuss the potential impact your student’s medical condition and anticipated absences may have on their education. Discuss how past absences have affected your child and what can be done to minimize the effects. If your child has a 504 Plan, include modifications pertaining to multiple classes, and make sure all teachers are made aware.

2. Continue or Implement a 504 Plan

If a 504 Plan is not yet in place, establish a plan to address absences, makeup work, the inclusion of extra time to compensate for missed instruction related to illness, extra travel time between classes when needed, and any additional educational accommodations required. Your child’s doctor’s office should be able to fill out the medical paperwork needed to initiate the 504 Plan. It is important to consider implementing a 504 Plan regardless of whether your child ever actually needs the accommodations.

3. Contact the School Nurse

Contact the school nurse to discuss your child’s medical condition. Provide the school a letter (written on letterhead) from the child’s physician or medical team explaining the following:

Medical condition
Medication and ancillary storage needs
Instructions for care
Infusion protocol, if the child is to self-infuse
at school
Emergency protocol, including whom to contact

If infusing at school, discuss with the nurse where your child can infuse and what assistance they may need.

Keep in mind not all nurses are familiar with infusion protocol, so it is important to review the steps with them in advance.

4. In-Person Discussion with School Personnel

Accommodations will vary from student to student and as each individual student Invite all school personnel who may interact with your child including teachers, counselor, nurse, administrators, etc. Discuss your desired plans for various scenarios, including bleed protocol. Inform those involved of what to do should a medical situation or medical emergency arise. Explain the need for your child to have freedom of action should he or she deem necessary.

Home Infusion Steps and Helpful Tips

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Patient Navigation Program

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Admin

August 14, 2023

All, Bleeding Disorders

Educational Series: 504 Plans

Admin

August 14, 2023

All, Bleeding Disorders

Plain and simple… all children deserve, and in our country, are entitled to an education. As part of a child’s right to an education, public schools are required by law to meet the needs of every child, including children with special needs. A 504 Plan helps support a child’s educational needs.

The difficulties of living with a chronic, rare, life-threatening disease or disorder are troubling enough without having to worry about its influence on education. Having a plan in place ahead of time can reduce challenges that may negatively impact a child’s education. The purpose of this educational series is to provide an overview of the 504 Plan and share information on its importance, function, and implementation.

What is a 504 Plan?

A 504 Plan is in reference to section 504 of the federal Rehabilitation Act of 1973. It is a federal anti-discrimination civil rights statute specifically stating no person with a disability can be excluded from participating in federally funded programs or activities including elementary, secondary, or post-secondary education; specifically, “…any person who has a physical or mental impairment which substantially limits one or more major life activities, has a record of such an impairment, or is regarded as having such an impairment.” A 504 Plan details the modifications necessary for students to have the opportunity to perform at the same level as their non-affected peers.

A 504 Plan may be useful for a child with a bleeding disorder as it can provide modifications for occupational therapy, physical education, and playground time, especially during bleeding episodes or other issues individual to each child. Typically, 504 Plans are used when a child does not have a learning impairment, i.e. autism, Asperger’s syndrome, dyslexia, attention deficit hyperactivity disorder, or other difficulty that impedes learning.

Implementing and Renewing a 504 Plan

A 504 Plan should be implemented before a child enters the public school system or within a few weeks, but can be initiated at any time. A full evaluation should take place a minimum of every 3 years or when a significant change has taken place (i.e. entering middle or high school). While nothing determines the termination date of a 504 Plan, it is very important to review it annually even if the child has not used the safeguard modifications included. Reviewing it annually with school personnel ensures accommodations will continue without having to begin the entire process again.

Even if a student has an accommodating teacher or attends a school a parent is sure will do “what is right” for the child, it is advised that a 504 Plan still be put into place as a safeguard.

Often, public colleges and universities honor existing Section 504 Plan accommodations. The Disability Resource Center at institutions of higher learning will use these recommendations to help affected students set in place safeguards for their education, especially as it pertains to absences when taking “for credit” classes.

504 Plan Qualifications

A qualifying student would be age 3 to 22, with an impairment, whether obvious or not, that may have been caused by illness, injury, communicable diseases, chronic or life-threatening illness, learning impairment, or disability who are entitled to educational support under the Individuals with Disabilities Education Act (IDEA) of 1973 (modified into ADA). Qualifying diseases are not listed—only that a physical and/or mental disability limiting one or more of life’s major activities may qualify a child.

School personnel will review a variety of sources to make a determination, which may include teacher reports, school administered tests, past grades, attendance records, medical reports, observation, and information from parents. 504 Plans are enforceable only at public education institutes, but other institutes may choose to abide by the guidelines and accommodations as well.

Accommodations

Accommodations will vary from student to student and as each individual student progresses through the grades. As much as possible, the child will be kept in regular classrooms rather than in a special class.

Common accommodations include:

Extended time on tests, assignments, and post absence make-up work
Class notes to be provided post-absence
Home services/supplements if the absences extend beyond 2 consecutive school days
Visual, verbal, or technology aids
Extra travel time between classes
Extra set of text books for home use
Adjusted class schedule, grading, and homework requirements
Preferential seating
Adjustments to physical education class, elective school sports, and playground time
Occupational or physical therapy

504 Plan Referral

A referral is all that is needed to establish a 504 Plan. In most states, a referral directly from a parent is acceptable; however, for a smoother process, obtain referral or recommendation notes from the child’s doctor, nurse, or clinician whenever possible. Typically, the referral is provided to the school counselor, but may also be submitted to the school nurse or child’s teacher. Medical documentation is not always needed, but prepare to share the following information:

Diagnosis
Schedule of doctor visits and any hospitalizations in the past year
School attendance records for the past year
A list of potential or foreseeable issues
A list of requested accommodations

Home Infusion Steps and Helpful Tips

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Patient Navigation Program

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Admin

August 7, 2023

All, Bleeding Disorders

The College Send-Off: A Guide for a Smoother Transition

Admin

August 7, 2023

All, Bleeding Disorders

You have raised your child to adulthood, helped them through school, and now are preparing them for college. You helped with application and admissions, bought all the dorm room supplies, and set them up on a dining plan.

You feel confident you prepared them to manage their bleeding disorder. They’re ready for an independent life, but are they really ready? Do you both know where their medication will be shipped, or where to dispose of supplies post infusion? What happens if a medical incident prevents attendance in a credit-bearing class with a mandatory attendance rule? Does the school have parking options if the child has mobility issues? Even the most prepared parents might need an overview of some of the things to prepare for when sending your child with a bleeding disorder off to college.

1. Contact the Hemophilia Treatment Center, Hematologist or Physician

Ask the physician for a letter explaining your child’s medical condition and its potential impact on education. The note should also explain that due to the patient’s condition, medication must be kept readily on hand and in some cases, at a controlled temperature. The student may need use of a refrigerator in their dorm room for the sole purpose of storing medical products.

2. Contact Student Housing (On Campus Housing)

Contact the student housing manager to let them know that a student with a chronic medical condition is coming to live on campus. Ask what documentation needs to be presented to allow the student to keep medication and supplies on hand. Be certain you document (via email or fax) the housing manager with whom you spoke. Be sure to follow up 30 days prior to the start of school and within a day or two of the student moving into the dorms.

3. Contact the Student Health Center

The providers at the Student Health Center will be the first line of defense in a medical situation. A basic bump, bruise, slip, or fall may not be a big deal to other students, but may present a bigger problem for a student with a bleeding disorder. By contacting the Student Health Center, you can provide an overview of bleeding disorders and protocols as it pertains to your student’s bleeding disorder.

4. Contact the Surrounding Medical Providers

Locate healthcare providers near campus that may have some experience with bleeding disorders. Contact the identified providers ahead of time to make introductions and familiarize them with your student’s history and bleeding disorder needs.

5. Contact Shipping and Receiving

Contact campus shipping and receiving for their policies and procedures for receiving packages on campus. Identify the process for your student’s campus, and request modifications for medication deliveries, if needed.

6. Work with the HTC or Hematologist and Partner with Industry for an In-Service

When a student goes to college, they are separated from their customary support system. They no longer have someone who has been trained to support, help find the vein, or assist in mixing their dose when needed. It’s important for the student to find a person they’re comfortable disclosing their medical condition with and to develop a new support system. Often, HTCs or homecare and specialty pharmacies can conduct a short in-service to teach bleeding disorder basics and the role of a patient’s support system. Once the student determines with whom they’re comfortable disclosing their condition, it might help to schedule a session.

7. Does Your Child Have Educational Accommodations (504 Plan)?

A 504 Plan for health impairment is enforceable in federally funded educational settings for students, ages 3-22. If your student had a 504 Plan for their bleeding disorder in high school, it can most likely be implemented in college, especially if they attend a state college or university. Don’t wait until absences have caused them to drop or fail a class. Schedule a meeting with the school’s Disability Resource Center (DRC) to discuss the student’s current 504 Plan.

Home Infusion Steps and Helpful Tips

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Patient Navigation Program

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Admin

August 4, 2023

All, Bleeding Disorders

Transitioning: Heading to School—A Guide to Help Transition Your Child to School

Admin

August 4, 2023

All, Bleeding Disorders

The transition to school for any parent may be a stressful time. For a parent of a child with a bleeding disorder, the stress and challenges are multiplied. This guide was created to help families avoid potential obstacles and create a school environment where their child with a bleeding disorder can excel.

Have a Medical Plan in Place
Meet with the School Nurse
Contact the School Counselor
Implement a 504 Plan
Meet with Educators and Administrators
Advocate for Your Child

1. Have a Medical Plan in Place

Having a medical plan in place can help the school nurses and teachers care for your child and keep him or her safe. Nose bleeds, bruising, hard bumps and falls, and head injuries are a few of the issues that may need to be addressed throughout the school year. Your child’s medical plan should include details such as who to contact and procedures for each incident. For example, Johnny falls on the playground hitting his knee, resulting in bruising. Protocol may include sending the child to the school nurse for evaluation (accompanied by another student or adult), immediately implementing RICE (rest, ice, compression, and elevation of the impacted area), calling the parents, and potentially initiating an infusion (if the student can self-infuse). Medical plans and procedures should be reviewed in person with the school staff and modified as often as needed, both verbally and in writing.

2. Meet with the School Nurse

Prior to meeting with the school nurse, obtain an official letter from your child’s physician or treatment center. The document should be on official letterhead and signed by the physician or member of the child’s medical team. Contents should include treatment protocol, emergency contact phone numbers, specific instructions regarding the child’s care, storage instructions for an emergency dose of factor, all needed ancillaries, a list of additional medications, and storage requirements. Provide a treatment protocol including whether the child is to self-infuse.

Arrange to meet with the school nurse to review the physician’s treatment protocol. Provide a “kit” and package all needed items together. The kit can then be quickly accessed in the event of an emergency at school.

3. Contact the School Counselor

Arrange a meeting to discuss your child’s bleeding disorder relative to school performance and emotional well-being with the school counselor or psychologist. The discussion should include how to treat bleeding episodes, chronic or episodic pain, class tardiness, or how being absent may impact his or her education. Discuss initiating a 504 Plan for the student, if one is not already in place.

4. Implement a 504 Plan

“A 504 Plan is a plan developed to ensure a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment.”*

A 504 is available to students, ages 3-22, who attend a school that receives federal funding (i.e. public school, universities, and colleges) and who has one or more life activities impacted by a qualifying health impairment. Physicians and parents alike may refer their child for a 504 evaluation. The child’s physician or medical team is required to submit medical forms verifying the student’s condition is considered chronic, qualifying him or her for a 504. Include specifics in the 504 such as how excess absences will be handled, the inclusion of extra time allocated to compensate for missed instruction, missed class work and homework, copies of notes, extra textbooks, as well as additional educational accommodations needed.

Do not hesitate to put a 504 in place for your child. The 504 protects the student’s educational integrity given their medical condition. This does not categorize your child as “special education student” rather it protects his or her educational interest under similar protections from the Office of Civil Rights and specifically the American’s with Disabilities Amendment Act. Even if your child NEVER uses the 504 accommodations, it is best to repeatedly renew annually to avoid any disruption in the documentation process should your child ever need the accommodations.

5. Meet with Educators and Administrators

Request a meeting with all persons who will interact with your child to discuss your desired plans for various scenarios. All steps and protocols should be discussed in a face-to-face meeting as well as documented in writing. Be sure to keep a log of meetings for reference.

6. Advocate for Your Child

Sending your child to school can be a nerve-wracking event. Being prepared can help alleviate the anxiety and stress of this step in your child’s life. Please use this document as guidance for preparedness. You are your child’s best advocate; however, if you find yourself in need of assistance or information, please feel free to reach out and ask questions! We are with you every step of
the way!

Home Infusion Steps and Helpful Tips

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Patient Navigation Program

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*Source for 504 Plan can be found at: http://www.washington.edu/doit/what-difference-between-iep-and-504-plan. Site accessed on 5/31/17.

Admin

July 18, 2023

All

Putting Your Mask on First

Admin

July 18, 2023

All

When on an airplane, the flight attendant procedurally says something like, “If oxygen masks release and you are traveling with a child, please secure your own mask first before assisting others.” Historically my thoughts were, “Wait, WHAT?!? You think I am going to selfishly put my mask on first when I could save my child? You’re crazy!”

That was until I experienced my first signs of caregiver burnout. The frustration, anxiety, and difficulties with my own health became more prevalent, and I became, at times, unable to physically or emotionally care for my own child with a medical condition. It was at this point I learned the healthier I am, the better, more attentive, and more capable parent I can be.

Why did it take so long to figure this out? The fear of being a “burnout” or something other than a superhero, was overwhelming. The fear someone else might not care for my child the way I would, or that I would miss something if I took a moment for myself was overwhelming. Any parent who has skipped taking a shower, slept on a child’s floor, or forgotten to eat because they were too busy taking care of their child, knows EXACTLY what I am talking about… these pointers are for you!

Telltale signs and symptoms of caregiver stress that may lead to burnout include:

Feeling tired
Anxiety, depression, irritability
Trouble sleeping
Increased personal health problems
Difficulty concentrating
Feeling overwhelmed or without adequate support while caring for your loved one

Methods to Help Mitigate Burnout

Practice stress-reduction strategies, such as meditation or stretching

Get as much rest as possible… naps are acceptable!

Maintain a routine including nutritious meals, and assign yourself a regular bedtime

Exercise—even if that means parking a bit further from your destination, walking will get your blood flowing. Exercise can also combat depression. Try to exercise at least 10 minutes a day.

Schedule time off from care giving. Don’t be afraid to ask for help from a family member, friend, or neighbor. It’s healthy to take a break, if even for just a few moments.

Reach out for support to help you with your feelings. Talk to your medical provider, family member, trusted friend, or a counselor. Many communities have support groups for caregivers as well.

Remember, you must care for yourself in order to care for someone else. There is nothing selfish about caring for your own health.

BioMatrix Specialty Pharmacy offers exceptional service and support for patients requiring infused or injectable medications.

Our tailored approach for a broad range of therapeutic categories helps improve quality of life for patients while producing positive outcomes along the entire healthcare continuum.

Through individualized specialty pharmacy services, timely access to care, and focused education and support, we are making a difference in the communities we serve, one patient at a time.

To learn more about the therapies we serve, click below:

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March 8, 2021

All

Chronic Illness and Tax Planning

Admin

March 8, 2021

All

Legal disclaimer: BioMatrix Specialty Pharmacy and its affiliates do not provide tax, legal or accounting advice. This material has been prepared for informational purposes only, and is not intended to provide, and should not be relied on for, tax, legal or accounting advice. You should consult your own tax, legal and accounting advisors before engaging in any transaction.

If you or a loved one is faced with a chronic illness, you’re most likely familiar with high medical bills, increased living expenses to accommodate the illness, and potentially loss of work or income. While these financial challenges may be unavoidable in many cases, around tax time there may be a little silver lining.

Here we discuss several tax and financial planning items to consider when faced with a chronic condition: setting yourself up for success, deductions, excluded income, and tax credits.

Set Yourself Up for Success

Establish a Revocable Trust
Whether or not you have a chronic illness, it’s important to have a revocable trust in place including an appointed ‘successor trustee(s)’ or an agent under their power of attorney to manage your assets (and taxes) should you not be able to at some point.

Consider Working with a CPA and/or Bookkeeper
Dealing with a chronic illness can make taxes more complicated. Though CPAs and bookkeepers will charge a fee, the amount you could save in taxes may more than make up for the upfront cost. Find a CPA/bookkeeper team you can trust that has an understanding of tax implications for those with chronic illness. Ask your community for their recommendations. It’s important to find these professionals early in the year, well ahead of when taxes are due to help you plan appropriately.

Understand Your Health Insurance Plan
Some insurance plans include Health Savings Accounts (HSA) or Flexible Spending Accounts (FSA) which both have tax benefits. For more information on health insurance plans, click here.

Know Your Dependent Status
You can deduct medical expenses due to illness for any family member listed as a dependent on your tax return. It’s important to know whether you can claim a family member as a dependent so that you can stay organized throughout the year and plan ahead (more on this below).

Keep Organized Throughout the Year, and Plan Ahead

Planning for taxes throughout the year will make tax preparation easier come March and April. Here are some ways you can be proactive.

Stay Organized
Keep all medical bills, receipts, and records in one place, organized by tax year. Also keep track of all medical reimbursements and whether expenses were paid out of a Health Savings Account or an Archer Medical Savings Account.

Get a CPA Involved with Settlements
If you’re involved in a legal suit due to chronic illness—ie against an employer for discrimination, damages, or back wages, it’s important to get a CPA involved before a settlement is reached to help determine tax implications.

Medical/Living Expense Tax Deductions

You may be able to deduct certain medical and living expenses on your federal (and sometimes state) taxes. A tax deduction lowers your taxable income. Typically, deductions are expenses you’ve already paid during a particular tax year which then can be subtracted from your gross income in order to figure out how much total tax you owe. The IRS allows you to deduct a certain amount of medical expenses if you itemize deductions. For 2020, this includes medical expenses that exceeded 7.5% of your adjusted gross income. Your CPA can help you determine whether itemizing deductions vs taking the standard deduction is more beneficial to you as well as how much of your medical expenses can be deducted. It’s important to note that if you’ve taken any reimbursements for medical expenses, you must subtract that from your calculation of total medical expenses.

You can potentially deduct these common medical expenses:

Health insurance premiums (with some exceptions)
Preventative care
Prescription drugs/therapy
Surgeries (deemed essential)
Psychologist/psychiatry visits
Health care facility costs
Illness recovery costs
Transportation costs (if specifically designed to compensate for the chronic illness/disability)
Tuition (if the principal reason for attendance is due to chronic illness/disability)
Home improvements (special equipment and home improvements for medical care)
Impairment-related work expenses (deducted as a business expense, avoiding 7.5% deduction limitation)

Here are just a few types of medical expenses that you cannot deduct:

Cosmetic surgery
Nutritional supplements
Over-the-counter drugs and medicines (unless prescribed by a doctor)

This online ‘interview’ tool on the IRS website can help you identify what medical expenses you are able to deduct: https://www.irs.gov/help/ita/can-i-deduct-my-medical-and-dental-expenses

For more information on medical expenses you can deduct, click here: https://www.irs.gov/taxtopics/tc502

Excluded Taxable Income

Exclusion tax is income that doesn’t have to be included in your gross, taxable income.

Some examples of income that can be potentially excluded as taxable:

Profit from a home sale (if someone resides in any licensed care facility and their home was their primary residence for at least 1 out of the last 5 years)
Disability income
Settlements (sometimes)

Tax Credits

A tax credit is an amount of money that you can subtract from the income taxes you owe. Sometimes tax credits are refundable—i.e. If the credit is more than what you owe, you’ll get a refund from the government. One example of where you may qualify for a medical-related tax credit is called the Premium Tax Credit. You may be eligible if you purchased health insurance through the marketplace. Learn more here.

When it comes to taxes, especially if you or a family member have a chronic condition, it’s important to plan ahead, stay organized, find a CPA/bookkeeper team you can trust, and understand what you can deduct and exclude on your taxable income.

References

Shenkman M. Advising Individuals with Chronic Illnesses. The CPA Journal. https://www.cpajournal.com/2017/05/22/advising-individuals-chronic-illnesses/
Rogers K. Tax Deductions for an Illness. ZACKS. https://finance.zacks.com/tax-deductions-illness-7393.html
Medical, Dental Expenses and Tax Deductions. eFile. https://www.efile.com/medical-deductions/#:~:text=For%20your%202020%20return%20you,your%20medical%20expenses%20are%20%245%2C000.

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June 11, 2019

Bleeding Disorders

Camp: To Go or Not To Go... A Mother's Dilemma

Admin

June 11, 2019

Bleeding Disorders

By Terry Stone

My name is Terry.
My kid would love camp.
I don’t want to send him.
Kid is sad.
Don’t be like Terry.

Yes, I am (or was) one of THOSE parents. I feel like the decision to send my sweet little precious angel baby son with severe hemophilia to camp was like a meme.

Why should I send him? He’s perfectly happy here with me. There’s lots of stuff to do here. No one will take care of him like I do. What if he has a bleed or is lonely or scared. I braved and survived family camp with him when he was 7 thinking that’s all the camp he’ll ever need. He’ll be so happy we went as a family. He’ll agree with me and not want to go back over the summer by himself. I braved the camp mattresses, camp songs and camp food for him. Now I was sure he would be done with the idea of summer camp. After all, how could I live without him for a week?!

Well, I was wrong, so wrong! For one, those camp mattresses weren’t that bad. Singing around the flag pole brought back fond memories of my own girl scout camp experiences. And the camp food - it was great!

So why was I dragging my feet? Who needs to grow up here? Why didn’t I send my son to camp the first year he was old enough to go? I had no excuse other than it was time for me to grow up. Yes, my worries and insecurities got the better of me. My son was ready. He wanted to go.

Fast forward to 2019, Matt’s last year of camp. He has loved every minute of camp from day one when he was 9 years old. He has made lifelong friends and credits his yearly camp pilgrimage as relief from the mundane - enough to give him a true mental break from everyday life that he really needed. Camp helped him be who he is today; a confident, smart and empathetic young man who just finished high school a year early and is ready to create his future.

Camp is somewhat of a rite of passage. It’s where kids learn to socialize on their own, much different from the family reunion where you push your child forward as you say, “Honey, go hug your Aunt Joyce.” Sure, he loves his Aunt Joyce, but forced socializing is something kids NEVER forget. Don’t let that be their “remember when” story at the Thanksgiving dinner table. Trust me, you’ll regret it. Remember the meme, don’t be like Terry, send your kid to camp!

Every year my son came home from camp his voice sounded a little deeper, as he narrated tales of great adventures, recanted best songs sung around the flagpole that never made Billboard’s top 100, and told us about new friends, that through the magic of camp have become their own tribe. All are welcome, all are accepted. I watched my son blossom, each year a little wiser, a little more confident, and most importantly, very happy.

Child development professionals recognize camp as profoundly valuable to help children mature emotionally, socially, intellectually, morally and physically. In the bleeding disorder community, there are camps offered by regional chapters across the country and attendance is usually free.

As a parent, we are continually making decisions to care for our children. Camp checks many of the experiences children need in their overall development.

So, as the meme says… don’t be like Terry and delay an experience that will feed your child’s needs and soul, send them as soon as THEY are ready – they’ll let you know! Camp is magical and an experience that will profoundly nurture your child and the lessons and love will last a lifetime.

Admin

June 11, 2019

Bleeding Disorders

Chronic Communication At Home: Encouraging Kids To Be More Independent

Admin

June 11, 2019

Bleeding Disorders

By Gary McClain, MS, PhD, LMHC

Why can’t I?
Don’t you trust me?
I know how to take care of myself!

If you are the parent of a child with a chronic condition, you have probably heard this from your child a few times, if not many. Based on what my clients tell me, knowing how to respond is not easy.

All children, especially teens, want to have a measure of independence. While resolving the conflicts that arise around independence is never easy, this process can be especially challenging for parents of children with bleeding disorders. Children with a chronic condition like a bleeding disorder may be feeling frustrated about their own limitations and responsibilities, as well as guilty about how these limitations affect other family members, which may result in being that much more intent on being independent. They also struggle with being perceived as different.

Parents carry the burden of maintaining responsibility for keeping the home together with all fears and uncertainties that go along with the job. In the midst of these challenges, an elephant is wandering around. An elephant that everybody is stepping around but not talking about. Its name is “fear.”

It is only human to have lots of fears around your child’s bleeding disorder. After all, part of your job as a parent is to be aware of and actively preventing the “what ifs.” Chances are, you’ve already experienced some of them, or have come close.

Fear can keep you motivated to do everything you need to do to stay on top of your child’s care. However, fear can also cause you to hold the reins so tightly that you may risk stifling your child’s self-confidence and keep him or her from getting actively involved in their own care.

When kids with bleeding disorders aren’t encouraged to develop independence, the result is stress. First, not making your child a partner in their care leaves it all on you, and you need the help. Second, when kids feel unfairly restricted by their parents, they don’t feel normal and can rebel, placing their health at risk and causing tension at home. And third, a young adult trying to make it on their own, and who has not learned to manage their own bleeding disorder with confidence, is at great risk.

You, Your Child, and Independence: Finding the Middle Road

It’s not easy for a loving and concerned parent not to want to watch their children like a hawk. And I’m not asking you to take unnecessary risks. However, I do think there is a middle road that can keep you feeling confident your child is adequately protected, while your child can also feel more confident and in control.

Here are some suggestions to help you help your child with a bleeding disorder become more independent:

Face your own fear

It’s only human to have fears regarding your child’s health. Acknowledge your fear. Don’t judge yourself for how you feel or try to make it go away by ignoring it. This is the first step toward coping with your fear.

Encourage your child to express his/her feelings

Start the conversation by simply asking how your child is feeling and offer reassurance that you want to hear whatever it is they want to tell you - even the scary stuff. Give a few extra hugs and supportive words.

While you’re at it, let your child know how you’re feeling

Make your home a safe place to talk about emotions.

Set boundaries but offer choices

Children with bleeding disorders often feel as if they are bound by limitations, which can contribute to a sense of feeling “less” than other children. Provide your child with a sense of control by allowing for some choices in daily routines, in diet and in self-care. Explain the options and reasonable boundaries, share information, and listen to your child’s concerns and preferences. Where possible, come to decisions together. Where appropriate, bring brothers and sisters into these discussions to make them more aware of his or her perspective and to give them an opportunity to make suggestions - don’t forget that siblings have needs of their own.

Teach all children to be advocates

Children with bleeding disorders need to learn to speak up for themselves so that teachers, employers and other adults outside the home are aware of any needs and limitations. They also need to learn to deal with the questions and comments that will inevitably come their way, as do their brothers and sisters. Teach your chronically-ill child how to be a self-advocate through role-playing at home.

Consider attending camp together

Some great camping experiences are available for children living with bleeding disorders and their families. At camp, you and your children can learn from the experts on the latest knowledge and treatment of bleeding disorders. Kids can have fun with other kids who are also living with bleeding disorders, while you share experiences with other parents. Camp is also a great opportunity for kids to learn how to be more independent, even to get started on infusing themselves. Camps are held around the country. Attendance is almost always free, and even transportation may be subsidized.

Remember that not everything is a medical issue

Children are human beings, not medical conditions, and communications don’t all have to revolve around your child’s chronic condition. Many of the issues that come up with kids and teens are developmental.

Remember: The worst thing that can happen is not always the worst thing that can happen

It’s easy to get caught in the trap of “catastrophizing,” making every situation that comes up feel like an emergency. Take a step back and ask yourself: Am I looking at this through the lens of fear? Is this causing me to create the worst possible scenario that may not even be realistic? When your child pushes back on a limitation, keeping this in mind may help you realize that, well, it might just be time to relax.

Take care of yourself

Families facing a chronic condition like a bleeding disorder are constantly at risk for stress. Make sure your own needs are being met. Take care of your own physical well-being and find a safe place to talk about how you are feeling, even the bad stuff.

Parenting a child with a bleeding disorder can be challenging, but don’t let the fear factor keep you from helping your child build confidence and independence.

Be patient.

Take it one day at a time.

Create an atmosphere where all family members communicate with honesty and compassion.

About Gary McClain

Gary McClain, MS, Ph.D., LMHC, is a therapist, patient advocate, and author in New York City, who specializes in working with individuals diagnosed with chronic and catastrophic medical conditions, their caregivers, and professionals. He maintains a website, JustGotDiagnosed.com

The Significance of Home Infusion for Transplant Patients

Challenges and the Need for Qualified Home Nursing Services

Extensive Vetting and Training

Site-of-Care Coordination

Safety Protocols and Clinical Interventions

Patient Education

Financial Resource Guide

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Transitioning from parent-assisted or clinical infusion to self-infusion can be a significant step toward independence for patients with a bleeding disorder. Self-infusing may help patients feel more in control of their bleeding disorder.

Age and Maturity

Motor Skills

Training

Home Infusion Steps and Helpful Tips

Patient Navigation Program

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Assess needs

Review Treatment Plans

Understand When Hovering Is Too Much

Home Infusion Steps and Helpful Tips

Patient Navigation Program

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1. Contact the School Counselor

2. Continue or Implement a 504 Plan

3. Contact the School Nurse

4. In-Person Discussion with School Personnel

Home Infusion Steps and Helpful Tips

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What is a 504 Plan?

Implementing and Renewing a 504 Plan

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Accommodations

504 Plan Referral

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You have raised your child to adulthood, helped them through school, and now are preparing them for college. You helped with application and admissions, bought all the dorm room supplies, and set them up on a dining plan.

1. Contact the Hemophilia Treatment Center, Hematologist or Physician

2. Contact Student Housing (On Campus Housing)

3. Contact the Student Health Center

4. Contact the Surrounding Medical Providers

5. Contact Shipping and Receiving

6. Work with the HTC or Hematologist and Partner with Industry for an In-Service

7. Does Your Child Have Educational Accommodations (504 Plan)?

Home Infusion Steps and Helpful Tips

Patient Navigation Program

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1. Have a Medical Plan in Place

2. Meet with the School Nurse

3. Contact the School Counselor

4. Implement a 504 Plan

5. Meet with Educators and Administrators

6. Advocate for Your Child

Home Infusion Steps and Helpful Tips

Patient Navigation Program

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Methods to Help Mitigate Burnout

BioMatrix Specialty Pharmacy offers exceptional service and support for patients requiring infused or injectable medications.

To learn more about the therapies we serve, click below:

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Set Yourself Up for Success

Keep Organized Throughout the Year, and Plan Ahead

Medical/Living Expense Tax Deductions

Excluded Taxable Income

Tax Credits

Our entire team is committed to maintaining the health and wellbeing of those we are privileged to serve.

Stay healthy, and be well.

We are with you and will get through this together.

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

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

By Terry Stone

My name is Terry.My kid would love camp.I don’t want to send him.Kid is sad.Don’t be like Terry.

My name is Terry.
My kid would love camp.
I don’t want to send him.
Kid is sad.
Don’t be like Terry.

Why can’t I?
Don’t you trust me?
I know how to take care of myself!