Are hemophilia treatment centers in danger?
Federal funding ensures that HTCs remain a vital safety net for our community
Since my diagnosis at age 10, I’ve always received treatment at federally funded hemophilia treatment centers (HTCs) — except for a brief period when my insurance didn’t cover my hematologist. Most hematologists don’t specialize in bleeding disorders, which can be complex to diagnose and treat. Without the expert care provided by my HTC, my journey with hemophilia would’ve been far more difficult, and I might not even be here today.
Federal funding ensures that HTCs remain a vital safety net for people with hemophilia and other rare bleeding disorders, improving quality of life and reducing overall healthcare costs. Yet as recent events have shown us, this essential funding isn’t always secure.
In January, the Trump administration issued a directive to temporarily freeze most federal grants and loans, aiming to reassess spending priorities and eliminate funding for programs deemed inconsistent with its objectives. The freeze affected a broad range of programs, including healthcare services.
Although this funding freeze was later rescinded, it created uncertainty for federally funded programs such as HTCs. While they weren’t specifically mentioned, the sweeping nature of the directive meant that many healthcare programs, including those that support people with bleeding disorders, faced potential funding disruptions.
HTCs receive federal funding primarily through the Maternal and Child Health Bureau of the Health Resources and Services Administration and the Centers for Disease Control and Prevention (CDC). Any federal funding freeze or budget cuts could pose risks to these centers, potentially jeopardizing the specialized care they provide.
The critical role of hemophilia treatment centers
HTCs operate on a multidisciplinary model, offering hematology care, physical therapy, social work, genetic counseling, and patient education. This approach has been proven to reduce hospitalizations, disability, and mortality among people with bleeding disorders. In fact, studies show that people receiving care at HTCs experience 40% lower mortality rates and 40% fewer hospitalizations compared with those receiving care outside the HTC network.
Federal funding for HTCs matters for multiple reasons:
- Access to specialized care: Bleeding disorders require highly specialized treatment, including clotting factor replacement and gene therapy. Many patients live in rural or underserved areas, and federal funding ensures that HTC services remain accessible to all.
- Public health surveillance and research: The CDC funds HTCs through the Community Counts program, which collects data on health outcomes, complications, and treatment effectiveness. This research improves care and helps develop new therapies.
- Financial assistance and insurance support: Many patients face high costs for clotting factor therapies and other treatments. Federal funding helps offset those costs for uninsured or underinsured patients, ensuring they receive necessary care.
- Crisis response and emergency preparedness: HTCs play a crucial role in responding to public health emergencies, such as drug shortages, natural disasters, and supply chain disruptions. They help ensure that patients continue to receive essential treatments when crises arise.
- Preventing life-threatening complications: Without proper treatment, hemophilia can lead to joint damage, internal bleeding, and life-threatening hemorrhages. By funding HTCs, the government helps prevent these costly and debilitating complications.
The federal government significantly increased support for HTCs after the HIV/AIDS and hepatitis C crisis of the 1980s and ’90s, when contaminated blood products led to widespread infections in the bleeding disorders community. This tragic period underscored the need for safer treatments, improved healthcare access, and federally funded HTCs to protect vulnerable patients.
The future of HTC funding
HTCs are more than just treatment centers; they’re lifelines for people with hemophilia and other rare bleeding disorders. The temporary funding freeze may have been lifted, but it served as a warning that essential healthcare funding can be vulnerable to shifting political priorities. Continued advocacy is crucial to ensure that these centers remain funded, accessible, and able to provide the specialized care that saves lives.
If we want to protect the future of HTCs, we must stay informed, raise awareness, and advocate for policies that prioritize funding for these critical centers — because without them, many of us wouldn’t be here today. I’m committed to staying informed and speaking up for the bleeding disorders community, and I hope you’ll join me in doing the same. Together, our voices can help ensure that HTCs remain a lifeline for those who need them most.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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Paul Clement
HTCs have indeed greatly improved quality of life for people with bleeding disorders and, as you say, they must remain financially solvent lest they be shut down by their host hospital.
Federal funding for HTCs was critical in the creation of HTCs in the 1970s, but it is no longer a major part of most HTC budgets. The Hemophilia Treatment Centers Act of 1975 authorized federal funding to establish a network of comprehensive hemophilia treatment centers and in 1976 $3 million was appropriated to fund 26 HTCs. This works out to about $115K per center, or about $500K in today’s dollars—a significant amount of money. (At the time, a nurse earned about $10K to $15K.) Regrettably, federal funding for HTCs has not kept pace with inflation and the changing healthcare landscape. MCHB funding for HTCs has remained flat for nearly a decade at about $4M, and we now have 141 HTCs, which works out to about $28K per center, and now the median salary of a nurse is about $86K. (The MCHB grants are awarded to eight regional “core centers,” which then distribute the funds to HTCs in their region. Some HTCs get considerably less than $28K and others more, depending on the number of HTCs in the region, the size of the HTC and the need.) The same goes for CDC funding, which has been about $4.3M annually—an amount that just about covers an HTC’s participation in the Community Counts registry.
So how do HTCs remain solvent, given their patient population has more than doubled (mostly due to patients with von Willebrand Disease) and many of their services are non-billable? About 75% of HTCs now participate in the 340B Drug Pricing Program. This program allows HTCs to purchase factor at a discounted rate and sell it to their patients at the market rate, keeping the revenues to help support their services and programs. The potential for revenue using the 340B Program is significant: a few HTCs are completely self-sufficient between their 340B income and federal grants.
What can you do to help your HTC? First, when selecting an insurance plan, make sure your HTC and your doctor are in-network. Make sure you’re seen at least yearly at the HTC for a comprehensive checkup. And, most importantly, consider buying your factor through your HTC’s 340B program, if it meets your specific needs.
Jennifer Lynne
Thank you for reading and commenting Paul! Unfortunately my insurance will not cover the 340B program through my HTC.