Orlando Vives has a severe form of hemophilia B and has been able to lead a relatively normal life, thanks to support from his parents and the local bleeding disorders community in his native Puerto Rico.
Diagnosed with the rare blood disorder at just 6 days old, Vives says he feels lucky that he has had to be hospitalized only twice after major bleeds, while he was in high school. He credits the local bleeding disorders chapter, the Asociación Puertorriqueña de Hemofilia y Condiciones de Sangrado, or APH, with giving him and his parents excellent medical information and referrals to the hemophilia treatment center that have enabled him to adequately manage his condition.
“I know how to take care of myself,” says Vives, a 21-year-old chemistry major at the University of Puerto Rico. “I was raised to watch for the signs and how to avoid things that could potentially trigger a bleed.”
Vives’ story illustrates the importance of having assistance from a local bleeding disorders community. APH has done an admirable job as an all-volunteer organization for more than two decades, but it wanted to grow to help the many people in Puerto Rico who remained underserved.
To assist with this effort, the two main patient advocacy organizations in the US—the Hemophilia Federation of America and the National Hemophilia Foundation—joined forces to support the Puerto Rico group. HFA had been offering aid and educational programs, and NHF had the means to provide funding and infrastructure systems.
Relief for Bleeding Disorders Amid Devastation
HFA’s and NHF’s collaboration began in earnest in 2017, when Hurricane Maria devastated the US territory. The two groups created a fund to provide immediate relief to people in the community, and NHF also began fundraising to help the hemophilia treatment center.
At the same time, APH’s volunteer leaders, led by board chair Anthony Llanes Rodríguez, were in the process of applying to become an independent nonprofit in the US, which would allow the organization to receive funding and further help the local bleeding disorders community.
“Being a nonprofit is the missing piece the organization needed to help them turn the corner,” says Michael Craciunoiu, NHF’s vice president of chapter services.
When a series of earthquakes struck in 2019–20, Craciunoiu and Martha Boria, HFA’s programs manager, among other representatives of both organizations, traveled to damaged parts of the island and met with local residents. To understand the most pressing concerns, the visitors also connected with Leslie Ann Soto Velez, MD, a pediatric hematologist/oncologist and the director of the Puerto Rico Hemophilia Treatment Center at the University of Puerto Rico School of Medicine in the capital of San Juan.
“After the earthquake, people were living in tents because they were worried about the structure of their homes,” says Katie Cooper, NHF’s director of chapter advancement. “In some regions of Puerto Rico, it’s hard for them to seek out medical attention because many live far from the treatment center and may have transportation challenges. It was also difficult to get emergency factor—pharmacies were stringent about how much they would give out, which would put families in a bind.”
Funding Comes Through
In April 2020, APH received 501(c)(3) designation as a legally recognized nonprofit, which was needed for it to become an official NHF chapter and, through NHF, gain access to funding, leadership development training, and educational, legal and legislative advocacy efforts.
“As soon as they had nonprofit designation,” Craciunoiu says, “we had the ability to leverage our resources to complement what HFA started building with them.”
Official association as a chapter of NHF allowed the organization to tap into individual donors, philanthropic organizations and corporate giving programs.
Using a grant from NHF, the Puerto Rico chapter hired Llanes Rodríguez as full-time executive director. Now a paid staff member, he gives APH a focal point for chapter activities and lends consistency and sustainability to the group’s ongoing work, Craciunoiu says.
Money from the grant also enabled APH to create a database of the families who are involved with its services, and through the Puerto Rico Hemophilia Treatment Center it has been able to reach new patients and reconnect with those who have become inactive. The chapter implemented a financial management system and developed a website, too. With an online presence, members can stay apprised of upcoming activities, and people in more rural areas can learn about the availability of bleeding disorders services.
In addition, NHF and HFA helped APH launch a patient assistance program for families to get funding to offset costs. “Because many people are on a state-sponsored type of healthcare, sometimes that can present challenges in having access to factors and the medication they need,” Cooper says.
Llanes Rodríguez and Vives, who is an APH board member, say these improvements will help the chapter provide more education and assistance and foster a sense of community to combat the isolation that people with bleeding disorders can feel.
“The chapter has been a lifeline since I was a kid,” says Llanes Rodríguez, who has severe hemophilia A and requires infusions three times a week. “They can give you the tools necessary for a better quality of life.”
More Work to Be Done
While strides are being made to improve care, the bleeding disorders community in Puerto Rico still faces numerous challenges.
One is distance. The hemophilia treatment center in San Juan is a two-hour drive for many people on the island, which is two-thirds the size of Connecticut but has about as many residents—3 million.
“For a regular consultation, the distance is OK,” Llanes Rodríguez says. “But if it’s an emergency with an active bleed, the story completely changes, and it can be difficult for families, especially for people living in the mountains.”
Another challenge is age. The San Juan center only cares for children and young adults until age 21, making it difficult for people to get the treatment they need as they transition to adulthood. Vives, who is that age, now needs to find a new physician.
What’s more, hematologists in Puerto Rico usually are available only in private clinics, and most are not specialists in bleeding disorders. The closest city, Miami, is about three hours by plane, and many adults can’t afford to travel to the US to get proper care.
Not having ready access to specialists proved to be problematic for 32-year-old Llanes Rodríguez. After he had knee replacement surgery in 2012, his joint froze. He spent six years limping and in terrible pain, to the point that he had to quit his job. Several local doctors were unable to find anything wrong. “All those years, I was living in hell,” he recalls.
Unlike others, Llanes Rodríguez finally was able to go to Miami, where doctors treated him right away. After corrective surgery in 2018, he says, he has never felt better. That is why he’s so passionate about advocating for adults who are struggling to find adequate resources. “I’m aware that not everybody has the same opportunities as I have,” he says.
Tech Connects People in Puerto Rico
Like so many groups during the pandemic, the APH has relied on telecommunications to keep in touch with members.
The chapter holds two or three educational programs per month via Zoom and switched to a virtual format for its special events, including summer camp, holiday celebrations and its annual meeting.
In addition, pediatric patients in the territory can connect with providers at the Puerto Rico Hemophilia Treatment Center for telehealth appointments. Although meeting remotely with a specialist is not ideal—sometimes a physical evaluation is preferred—the pandemic has opened up opportunities for bleeding disorders care.
“Technology is a great way to bring people together for social, business and medical purposes,” says Ann LeWalk, vice president of education for the Hemophilia Federation of America. “And in Puerto Rico, it creates a reasonable alternative to traveling a long distance.”
What the Future Holds
Fortifying the Puerto Rico chapter is a big step toward realizing the vision of making comprehensive care available to everyone in the island’s bleeding disorders community—adults and children.
“The goal for the first year was to establish the organization and to build their resources so that they can work on strategic planning,” Craciunoiu says. “Their story has really only just begun.”
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