Advocacy
What showing up has changed
None of this happened on its own. Every line on this page came from Texans with bleeding disorders showing up at the Capitol — in Austin and in Washington — and telling their stories to people who had never met anyone living with one.
The bleeding disorders community in Texas is small — small enough that a single hearing room can hold most of the people willing to testify on a given Tuesday. That has not stopped it from moving state policy. What follows is the record, newest first.
Texas Medicaid
Every hemophilia medication stayed on the Medicaid Preferred Drug List
On April 24, 2026, both Coalition co-coordinators testified before the Texas HHSC Drug Utilization Review Board — Melissa Compton, then Julie Fredericksen Jones of Texas Central Bleeding Disorders — asking the Board to keep every hemophilia medication on the Medicaid Preferred Drug List. When a product moves to non-preferred, it does not disappear; it acquires a prior authorization, and for a family managing a bleed at 2 a.m. that paperwork is the difference between treating at home and going to an emergency room.
The Board makes recommendations. The HHSC executive commissioner makes the decision, and it becomes public only when the semi-annual Preferred Drug List is published. That list came out on July 24, 2026. The hemophilia class was untouched.
Two member organizations, at the same meeting, making the same ask, one after the other. That is what a coalition is for.
Watch Melissa Compton’s testimony (43:18) · Julie Fredericksen Jones’ testimony (45:01) · full webcast
U.S. Congress
A Texas member of Congress introduced a bleeding disorders bill
Representative Julie Johnson of Texas’s 32nd district introduced the FED UP with Bleeding Disorders Act (H.R. 8794), joined by Joe Wilson of South Carolina, Sarah McBride of Delaware and Eleanor Holmes Norton of the District of Columbia. Wilson is a Republican — and a bill carrying both parties has somewhere to go.
It goes after a number this Coalition has been repeating for years: women and girls with bleeding disorders wait an average of sixteen years for a diagnosis. Sixteen years of heavy periods treated as normal, of iron infusions with no explanation, of being told it is anxiety.
Texas now has a member of Congress who says that out loud.
Texas Legislature
A Rare Disease Advisory Council passed the Texas House
HB 3554 would have given Texas what thirty-four other states already have: a standing council that advises the state on rare disease policy, so that decisions about conditions affecting a few thousand people are not made by officials meeting them for the first time. It passed the House 91–52 on May 15, 2025. The Senate received it that same day and never took it up.
Counting that as a win takes some explaining. In 2023 the same idea did not reach a floor vote. In 2025 a bipartisan majority of the Texas House put its name to it. A bill that has already passed one chamber starts the next session as a known quantity rather than an introduction — which is why the Rare Disease Advisory Council stays at the top of the Coalition’s list.
Texas Legislature · signed into law
Copay assistance has to count
Before HB 999, a Texas insurer could accept a manufacturer’s copay assistance for a factor prescription and then decline to count a dollar of it toward the patient’s deductible. The assistance ran out, the deductible had not moved, and the family hit a bill they thought they had already paid — usually in March, usually with no warning.
On March 23, 2023, five members of this Coalition testified before the House Select Committee on Health Care Reform — Ryan Crowe, Melissa Compton, Julie Fredericksen Jones, Rachel Neyland and Shelley Clawson — spread across about thirty-five minutes of a long morning. Seven weeks later, when the bill reached the Senate, Ryan Crowe was one of only two witnesses in the state who testified for it.
It cleared both committees unanimously, was signed by the Governor on June 10, 2023, and took effect that September. For a household on a high-deductible plan with a product that costs more per year than the house, it is the single most consequential thing the Texas Legislature has done for this community.
The rest of the testimony Rachel Neyland (4:29) · Shelley Clawson (3:11) · Ryan Crowe at the Senate (6:58). Official record: witness list · bill history · full House hearing
U.S. Congress · recognition
A Texan with a bleeding disorder was named on the House floor
Congressman Pete Olson rose on the floor of the United States House of Representatives to recognize Hank Wolgamott, a young Texan living with a bleeding disorder, and the community around him.
No policy changed that afternoon. It is here because of what it proves: a family from Texas, showing up and telling the truth about their life, ended up in the Congressional Record. That is the whole argument for the phone call this site keeps asking you to make.
Texas Legislature · signed into law
The community made Awareness Month permanent
Before 2019, Bleeding Disorders Awareness Month in Texas had to be asked for again every single year — a resolution, requested and granted, and then gone. HB 1508 made it permanent. Carried by Representative Tom Oliverson, it passed, and March is now written into the Texas Government Code: “March is Bleeding Disorders Awareness Month to increase awareness of genetic disorders that prevent a person’s blood from clotting properly.”
That happened because this community worked for it. Getting a bill drafted, filed, referred and scheduled takes months of work by people whose names appear nowhere in the hearing record. On March 13, Shelley Clawson sat at the witness table and spoke for all of it.
Permanence matters more than it sounds. It is on the state’s calendar now whether or not anyone has the time to go ask for it, and every March carries a standing reason to be in Austin.
On the record Witness list · Committee minutes · full hearing video — her testimony begins at 3:58:38 · Texas Government Code § 662.112
Where to next
The next one on this list has not happened yet
We will let you know when a hearing, a comment period or a vote needs your voice — and exactly what to say.