Legislative tracking
What is actually moving
The bills we are watching in Austin and in Washington, and what stage each one has reached. Bleeding disorders almost never appear in a bill by name — which is exactly why somebody has to be watching.
Right now
Two tracks, two rhythms
Federal policy moves all year. Texas moves in a 140-day burst every other January — and then not at all for eighteen months.
That difference shapes everything about how this community has to work. The list below is kept current from the national organizations’ own policy feeds, and it is where anything we are actively watching shows up.
Federal
Year-roundCongress, CMS rulemaking, appropriations. Most of what lands on a Texas family arrives through Medicaid and marketplace rules rather than a bill with our name on it.
Texas
90th Legislature · 2027No Texas bills exist yet. Prefiling opens 9 November 2026 and the session convenes 12 January 2027. Texas bills start appearing here from the day filing opens.
Federal
Three things we are followingH.R. 8794 — FED UP with Bleeding Disorders Act of 2026
Would order a coordinated federal review of how women and girls with bleeding disorders are diagnosed, treated, trained for and included in research, plus a national public education campaign. It exists because of the 14-to-16-year diagnostic delay.
Why it matters here: the lead sponsor is Rep. Julie Johnson of Texas, and it is bipartisan. A Texas member carrying a bleeding disorders bill in Congress is rare and worth supporting.
The ask: that Texas members of the US House cosponsor it.
Federal funding for CDC blood disorders programs
The CDC’s Division of Blood Disorders runs the national surveillance system for bleeding disorders and the laboratory work behind inhibitor testing. Staffing reductions there have already disrupted both.
The Hemophilia Federation of America testified to a House Appropriations subcommittee in April 2026 asking for $3.5 to $5.1 million for hemophilia programs in the 2027 budget, and in September called publicly for that funding to be restored.
Why it matters here: that surveillance system is where the national figures on our Key Statistics page come from. When it degrades, nobody — including the state — can say how many people this affects.
Medicaid work reporting and medical exemptions
Work reporting requirements for Medicaid begin 1 January 2027. The question for this community is the “medically frail” exemption — whether someone with a bleeding disorder qualifies for it, and what documentation a state will accept as proof.
States are writing those implementation rules now. That means this reaches Texas families as an HHSC administrative decision rather than as anything the Legislature votes on — and administrative decisions are made in rooms that are open to the public and thinly attended.
Texas
Between sessionsHHSC Drug Utilization Review Board — the Preferred Drug List
The board meets quarterly in Austin and recommends which drugs stay preferred on Texas Medicaid. A product moved to non-preferred means prior authorization on every refill of a lifelong therapy.
Both Coalition co-coordinators testified at the April 2026 meeting. When HHSC published the semi-annual list in July, every hemophilia medication had remained preferred.
No Texas bills yet. The 89th Legislature adjourned in 2025 and the 90th does not convene until January. Nothing can be filed before 9 November 2026.
From that date this section fills up. The first thing we expect to be watching for is a new Rare Disease Advisory Council bill.
Last reviewed 23 September 2026. Federal status is taken from the two national bleeding disorders organizations’ own policy reporting and is dated on each entry. Texas bills will be tracked against Texas Legislature Online once filing opens. If something here has moved and we have not caught it, tell us.
Why this needs watching
Bills almost never say “hemophilia”
Search a Texas session for hemophilia or bleeding disorder and you will find almost nothing. That is not because nothing affects this community — it is because the bills that reach a Texas family are written about mechanisms: what an insurer may require before approving a drug, which pharmacy a patient must use, how copay assistance gets counted.
A bill that decides whether a child gets factor this month can run its whole course without ever naming the condition. That is the reason a small community needs someone reading the filings, and it is most of what this page is for.
These are the terms we watch:
- copay accumulator
- copay assistance
- cost-sharing requirement
- step therapy
- prior authorization
- utilization review
- specialty pharmacy
- white bagging
- 340B
- pharmacy benefit manager
- Medicaid eligibility
- work requirement
- continuous eligibility
- network adequacy
- gene therapy coverage
- rare disease advisory council
- blood safety
Those terms are broad on purpose, and they bring back far more than they should — “prior authorization” alone can return dozens of Texas bills in a session, nearly all of them about something else entirely. Reading through them and finding the few that matter is the work. It is not glamorous and it does not make the news, and it is how a bill gets caught while there is still time to do something about it.
The clock
When things actually happen
Texas meets in regular session only in odd-numbered years, for 140 days. The window to shape a bill is narrow and it opens before the session does — so this page is busiest between November and May of an odd year, and quiet in between.
Between sessions the work does not stop — it moves to the agencies. Preferred drug list decisions, Medicaid rules and the Hemophilia Assistance Program all get settled at Texas HHSC, in quarterly meetings that are open to the public and thinly attended. That is where a small community can have an outsized effect.
If you see something first
Send it to us
You do not have to go looking — that is our job. But people notice things: a letter from an insurer, a change at the pharmacy, something a legislator says at a town hall. If any of it looks like it touches this community, send it over.
A bill number, a link, or one sentence about what you noticed is plenty. We would far rather check ten things that turn out to be nothing than miss the one that was not.
Where to next
Watching is how it starts
Found something that looks relevant? A bill number and one sentence is enough. We would rather check ten and find nothing than miss one.