Austin Days
What to say when you get there
One day at the Capitol, a handful of meetings, and a conversation most legislators have never had with anyone. Here is how it goes, and what to bring to it.
Before you go
You are the expert in the room
Most legislators and most staff have never knowingly met anyone with a bleeding disorder. You will be the first, and that is the whole reason the day works.
You do not need to be a policy expert, and you are not expected to arrive knowing bill numbers or committee procedure. The Coalition briefs everyone before the meetings start, so you will know exactly what we are asking for, and you are given a folder with it all written down. What you bring is the part nobody in that building can get anywhere else: what this condition actually costs a Texas family, in money, in time and in fear.
Meetings are short, usually ten to fifteen minutes, and often with a staffer rather than the member. That is not a downgrade. Health staffers write the memos, track the bills and brief the member. A staffer who understands bleeding disorders is worth more over a session than a handshake with a legislator who forgets by lunch.
The meeting
How the five minutes go
You will have less time than you expect, and the first ninety seconds decide whether the rest of it lands. This is the shape that works.
Say who you are and where you live
Your district is the reason they are listening. Lead with it, before anything about the condition.
“I’m [your name], I live in [your town] — District [00] — and I’m here with the Texas Bleeding Disorders Coalition.”
Not sure of your district number? Look it up here before you go.
Ask what they already know
One question, and it saves you from explaining what they know or assuming what they do not.
“Before I start — are you familiar with hemophilia or von Willebrand disease?”
Most will say no. That is good news: you get to frame it.
Tell your story, in about ninety seconds
Not the medical history. One concrete thing that happened to your family and what it cost. The emergency room that did not know what factor was. The month the pharmacy could not fill the prescription. The year of appointments before anyone said the word.
This is the part they will remember and repeat. Everything else on this page is support for it.
Put it in scale
Two or three numbers, no more. The ones below are chosen because they work in a sentence.
“There are only about 3,000 Texans with hemophilia — roughly twenty people in a House district. We’re small enough to be overlooked and expensive enough that being overlooked is dangerous.”
Make one specific ask
Not “support our community.” Something they can write down. The asks are below — pick the one that fits the meeting, and say it plainly.
Leave something and say thank you
Leave the Coalition’s card and one-pager, get the staffer’s name and email, and thank them for the time. Then actually follow up within a week — that is the step almost nobody takes, and it is the one that turns a meeting into a relationship.
The numbers
Facts worth carrying
Every figure here is sourced on our Key Statistics page. If someone wants the citation, send them there rather than reciting it.
Use two or three, not all five. A meeting where someone recites statistics is a meeting nobody remembers. The numbers exist to make your story make sense at the scale of a state — that is all they are for.
What we are asking for
The asks
Three of these are constant. Two are specific to this session. Full reasoning on the Legislative Priorities page.
Always
Every health plan in Texas, public and private, should cover care at a Hemophilia Treatment Center, the full range of FDA-approved clotting factor therapies, and a real choice of specialty pharmacies that know how to handle them.
That is one sentence covering the Coalition’s three standing priorities. If a meeting goes short, this is the sentence to get out.
The reason it matters, if they ask: when someone cannot follow their treatment plan, they bleed — into joints, sometimes into the brain. The damage is permanent and cumulative. People end up disabled and out of work over an interruption that a coverage rule caused.
This session
Create a Rare Disease Advisory Council for Texas.
Thirty-four states have one. Of the five most populous, four do — California, Florida, New York and Pennsylvania. Texas does not. HB 3554 passed the House 91–52 in May 2025 and was never taken up in the Senate, so there is a bill, a record and a prior author to point to.
Close the copay maximizer loophole that HB 999 left open.
Texas banned copay accumulators in 2023 with HB 999, which passed the House 140–5 and the Senate 31–0. Plans now use copay maximizers instead: they label a specialty drug “non-essential,” set the copay at exactly the manufacturer assistance available, and because the drug is “non-essential,” none of it counts toward the deductible. Same harm the Legislature already voted against, through a door the statute left open.
The easy yes
Ask them to wear red in March
March is Bleeding Disorders Awareness Month in Texas, permanently, by statute. That happened because this community worked for it — HB 1508, passed in 2019 and carried by Rep. Dr. Tom Oliverson and Sen. Eddie Lucio, Jr., with families and both member organizations behind it. It is now Government Code § 662.112: permanent, not something anyone has to go back and renew.
The month itself began nationally in 2016, when the National Hemophilia Foundation — now the National Bleeding Disorders Foundation — built on President Reagan’s 1986 declaration and launched the Red Tie Challenge. Texas passed an awareness resolution in 2017 and made it permanent two years later.
Ask them to wear a red tie, scarf or bandana in March, post a photo, and tag us.
It costs a legislator nothing, it is a genuine yes in a day full of maybes, and it gives you a reason to be in touch again in the spring. Hashtags: #bleedingdisorders #lonestarbdf #texcen #redtiecampaign
When you get stuck
“I don’t know — let me find out”
A staffer will eventually ask something you cannot answer. What does this cost the state? How many people are on Medicaid? What happened to that bill in the Senate?
Say you do not know, write the question down, and get them an answer within the week. That is not a failure in the meeting — it is the best thing that can happen in one. It gives you a reason to email a specific person about a specific thing, which is worth more than any answer you could have improvised.
Guessing is the only real mistake available to you. A number you half-remember, repeated in a memo and then found to be wrong, costs the Coalition more than the question was worth. Send us the question and we will find the answer or say plainly that we do not have it.
Sources for every figure on this page, with citations: Bleeding Disorders in Texas — Key Statistics. Bill histories from Texas Legislature Online. Awareness Month: Acts 2019, 86th Legislature, ch. 180, now Texas Government Code § 662.112.
Before February
Three things worth reading first
Austin Days has a formal sign-up, and it opens ahead of the event. Put I'm interested in Austin Days in your message and we will pass your name along so you hear when registration opens — no experience required, and no minimum.