Legislative Priorities

Every health plan in Texas, public and private, should include specialists with bleeding disorder expertise in its network.

Bleeding disorders are rare and highly specialized. Research on this group of conditions consistently finds that outcomes depend on being seen by a team — hematology, nursing, physical therapy, social work and pharmacy in one place — rather than by a general practice doing its best with a condition it sees once a decade.

That team model is what a Hemophilia Treatment Center provides, and Texas has seven of them. A plan that does not include one in network has not narrowed a choice; it has removed the standard of care.

Patients and their prescribers should be able to choose among all FDA-approved products, including bypassing agents and newer non-factor therapies.

These products are not interchangeable. People respond differently to different factor concentrates, and a person who develops an inhibitor — an immune response that makes ordinary factor stop working — depends on the alternatives existing and being covered.

A formulary that narrows the list narrows it for someone whose one remaining option may be the product that was removed. This is why the Coalition treats product choice as a safety question rather than a preference.

Patients should keep access to the full range of specialty pharmacies equipped to handle these medications.

Clotting factor is a specialty drug: it has particular storage, handling and cold-chain requirements, and it cannot be picked up at a neighborhood pharmacy. It comes from a specialty pharmacy, usually shipped to the home.

That makes the pharmacy network a clinical matter, not an administrative one. Narrow networks, and policies that route product through a plan’s chosen vendor, decide whether medication arrives on time and in usable condition. For a therapy infused at home two or three times a week, a delayed shipment is a week without protection.

Faster diagnosis and appropriate treatment for women and girls with bleeding disorders.

Bleeding disorders have long been treated as a boys’ disease. They are not. Von Willebrand disease affects up to 1% of the population, men and women equally, and about two-thirds of the people treated for it at US treatment centers are women and girls — not because women get it more often, but because their symptoms are more likely to become severe enough to force the question.

The cost of the assumption is measured in years. A Lancet Haematology Commission published in July 2026 found women wait an average of 14 to 16 years for a bleeding disorder diagnosis, against about two years for men. A CDC study of women with von Willebrand disease found the same 16-year average.

In those years, girls are put on birth control for a symptom nobody has explained, women undergo hysterectomies that might not have been necessary, and some nearly bleed to death in childbirth.

Diagnostic delay: Lancet Haematology Commission, The Lancet Haematology 2026;13(8):e555–e601. Kirtava A et al., Haemophilia 2004;10:158–161, as cited by the CDC. Prevalence: CDC von Willebrand disease data.

Mental health care that does not turn people away because they have a bleeding disorder.

A lifelong condition with regular infusions, unpredictable bleeds and constant insurance friction puts strain on a whole family, not only on the person diagnosed. In a community survey of people with bleeding disorders run in late 2021 and early 2022, more than 30% reported a connection to a mental health condition — most often depression, anxiety, or both. Mental health support belongs alongside the medical care, not after it.

One barrier is specific and solvable. Patients whose bleeding disorder is stable and self-managed have been denied admission to residential mental health programs because of the diagnosis. A facility uncomfortable handling factor turns away someone who infuses themselves at home without difficulty. That is a training and policy question, not a clinical one — and it leaves people without care at the point they most need it.

Survey conducted by the Bleeding Disorders Foundation of North Carolina with the University of North Carolina Wilmington Department of Social Impact, administered late 2021 into early 2022. A state community survey rather than a national study — the clearest published figure available on this question, and described here as what it is.

Every hemophilia medication stays on the Texas Medicaid Preferred Drug List.

The Texas HHSC Drug Utilization Review Board meets quarterly in Austin and recommends which drugs are preferred. The Board does not decide: its recommendations stay pending until the HHSC executive commissioner publishes final decisions, folded into the semi-annual Preferred Drug List. A recommendation made in April is not public until July.

These meetings are open, thinly attended, and the point at which a product can quietly move to non-preferred — which for a lifelong therapy means prior authorization on every refill.

The Coalition also works to keep families informed about holding on to Medicaid coverage — keeping contact details current, watching for renewal notices, reviewing benefits each year. That matters more than usual now, with federal changes reaching Texas households through HHSC in 2027.

DUR Board documents, agendas, minutes and decisions: Texas Vendor Drug Program.

Close the loophole that HB 999 left open, so copay assistance counts toward what a patient owes.

In 2023 Texas passed HB 999, ending copay accumulator programs — arrangements in which a manufacturer’s copay assistance did not count toward the patient’s deductible. It passed the House 140–5 and the Senate 31–0, and five members of this community testified for it.

Plans have since moved to copay maximizers, which reach the same result by a different route. A plan classifies a specialty medication as “non-essential” and excludes it from the standard benefit. It then sets the patient’s copay at exactly the amount of manufacturer assistance available — and because the drug is now “non-essential,” none of it counts toward the deductible or the out-of-pocket maximum.

The assistance is consumed, the patient’s own spending never accrues, and families pay thousands of dollars more across a year than the annual limits were written to allow. Same harm the Legislature already acted on, through a door the statute left open.

Texas should establish a Rare Disease Advisory Council.

Thirty-four states have one. Texas does not. Of the five most populous states, four — California, Florida, New York and Pennsylvania — have a council. Texas is the exception.

An RDAC is a standing body of patients, clinicians, researchers, hospitals and public health officials that advises the state on rare disease policy. It gives agencies somewhere to ask before a decision is made rather than a complaint to field afterward, and it gives several hundred small patient communities one place to be heard instead of each arriving separately.

State count as of May 2026, when Vermont became the 34th: National Organization for Rare Disorders. Bill history: Texas Legislature Online, HB 3554, 89th Legislature.

Texas should open the Hemophilia Assistance Program to every bleeding disorder, not only hemophilia.

The Hemophilia Assistance Program is the state's direct help for adults living with a bleeding disorder. It pays for blood factor replacement products, or it reimburses health insurance premiums — one or the other in a given year, not both. It has run since 1989; premium reimbursement was added in 2015.

To qualify today, a person must live in Texas, be 18 or older, have a hemophilia diagnosis from a licensed physician, earn at or below 200% of the federal poverty guidelines, not be eligible for Medicaid or CHIP, not be receiving Children with Special Health Care Needs benefits, and not be incarcerated or a ward of the state.

Hemophilia is not the most common bleeding disorder. Von Willebrand disease is, and it is not covered. Neither are Factor I, Factor VII or Factor X deficiencies. The treatments those Texans need are priced like hemophilia's, and the one state program built for this community is closed to them.

One drug makes the point. NovoSeven is used to treat bleeding both in people who have hemophilia with an inhibitor and in people who have Factor VII deficiency — a different disorder entirely. It is among the most expensive medicines in use: annual spending for commercially insured hemophilia patients taking it has been put at about $800,000. One of those two patients can apply to the Hemophilia Assistance Program. The other cannot, because the program requires a hemophilia diagnosis. Nothing separates them but which clotting protein is missing.

Opening the program does not enlarge it. Assistance is capped at $55,000 per client per state fiscal year, and all benefits are subject to available program funds. Against treatment priced at $300,000 a year and upward, that cap covers roughly six weeks. Both limits are set by program rule, and neither depends on how many diagnoses qualify — so widening eligibility changes who the program can reach, not what it spends.

Program rules, eligibility and benefit limits: Texas HHSC — Hemophilia Assistance Program and the HAP Provider Manual, rev. 11/2023, pp. 9–10; program rules at 26 TAC pt. 1 ch. 354. Checked September 2026.