What a mighty community we are!
Together, we have ‘moved the needle’ toward our collective goal of ensuring that critical, life-saving policy proposals become law.
During Rare Disease Week on Capitol Hill, 953 members of our community, representing 297 patient organizations, catalyzed momentum through 370 meetings with Congress.
That momentum ensured that, as the House Energy & Commerce Subcommittee on Health assessed which bills would be included in today’s legislative hearing (view our statement here), many of our community’s key priorities were central among them.
And then again as we led into today’s hearing – our mighty rare disease community – generated hundreds of emails, phone calls, social media messages, and powerful videos – all flagging support for the Speeding Therapy Access Today (STAT) Act to Members of Congress, underscoring our community’s commitment to accelerating the development of rare disease treatments and generating at least nine new cosponsors in a matter of days. The hearing was a key action that needed to happen for the STAT Act to advance and become law this year.
In addition to the STAT Act, this hearing included other priorities supported by our rare disease community, including opportunities to protect and strengthen the accelerated approval pathway, Cures 2.0, legislation to establish the Advanced Research Projects Agency – Health (ARPA-H), the BENEFIT Act, and the HEART Act. That this hearing included so many pieces of legislation of importance to us, is a direct reflection of our community’s engagement.
As a community, we spent almost two years working to identify our shared therapy development challenges, needs, and priorities – and the innovations, incentives, and infrastructure that would enable us to overcome them in order to accelerate therapy development. Those ideas yielded the STAT Act. Today, we were pleased to hear overall agreement around the needs our rare disease community identified, as well as for the innovation opportunities we outlined in STAT.
Our outreach matters – and it’s working!
So here’s what’s next…
Now that the hearing has occurred, Congress will prioritize which legislative items will continue to move forward. Those that do will proceed to have subcommittee mark-ups and full committee mark-ups as soon as possible. To maximize the likelihood of this happening, we need to continue building the number of lawmakers cosponsoring the STAT Act.
If your members of Congress have not yet signed on as cosponsor of the STAT Act, please reach out to them and make this request. Even if you have reached out previously, please reach out again. Your actions are MAKING A DIFFERENCE. We are moving the needle. And this is our critical window for us to ensure that the STAT Act must be among those bills that advance over the weeks ahead.
Thank you for all you have done to get the STAT Act and other rare disease bills to this point. By continuing to engage and ensuring that our community’s voices are heard, we will together ensure that the STAT Act becomes law this year.
