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!
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