Patients and their advocates can–and do!–use their collective voice to promote transformation through the legislative process. It can be a protracted process, but it can yield dramatic changes in policy that speed drug development and enhance safety.

One notable piece of pending legislation is the “Access to Genetic Counselors Act of 2019” (H.R. 3235). If enacted, it would improve access to genetic counseling for Medicare enrollees by recognizing certified genetic counselors as healthcare providers.

Our partner, InformedDNA, set out the case for this bill in a recent blog post: “Support for the Genetic Counselor Services Act of 2019.”

Other legislation that needs your support

Various other pieces of legislation–introduced and pending–would increase access to the benefits of modern medical care. Here are a few:

  • Newborn Screening Reauthorization Act (H.R.2507)
  • The OPEN Act (Orphan Products Extension Now Accelerating Cures and Treatments Act)
  • The Rare Disease Burden Study Act
  • Prescription Drug User Fee Act
  • 21st Century Cures reboot

Keep in mind that the legislative session lasts two years, and then legislation needs to be introduced anew. The current session began in January 2019.

How to make your voice heard

Are you ready to be an advocate? It’s surprisingly easy to contact your members of Congress and to ask them to support a bill. In fact, you can do it online.

Go to or and, at the top of the page, key in your zip code to find the names of your senators or congressional representative. Follow the instructions and write your message.

You can share your story to make it more effective, but you don’t need to. For instance, all you need to write would be “Please support the Access to Genetic Counseling Act.”

You can also attend events to meet with lawmakers. For instance, Rare Disease Week on Capitol Hill 2020 is slated for Feb. 25-28, 2020. Details:

The Global Genes RARE Patient Advocacy Summit was held this September. Learn more at

We’ve come far. We have farther to go.

The science continues to advance, and patient advocacy has played a tremendous role in turning pure science into practical tools. New laws and regulations have increased the numbers of available treatments.  

But it’s just the beginning.

We still have far to go. But raising our voices together will influence lawmakers bring about change. We just need to do it.