The expansion of telehealth options during the COVID-19 pandemic falls into the pandemic positive category. This is even more profound for many Fragile X families. Telehealth can open up access to specialists, help with your already hectic schedule, help with anxiety and other behaviors that can impact visits, and more. We want to work to expand telehealth options now and beyond the pandemic as part of our ongoing policy advocacy to provide opportunities for a better life for families living with Fragile X.

As you can imagine, there isn’t a simple, straight-forward solution. There are lots of overlapping laws, policies, regulations, jurisdictions, and stakeholders that will need to work together for permanent changes and improvements. However, there are some steps we can take to make an impact right now.

One challenge during the pandemic is that each state regulates licensing for health workers, and many states have waived licensing requirements to enable healthcare workers to help during surges in COVID. But, challenges remain for interstate telehealth visits, something that is even more common in conditions like Fragile X, when specialists are spread out and many states don’t have a clinic.

The TREAT Act works to resolve this. The Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act was introduced in the Senate by Senators Roy Blunt (R-MO) and Chris Murphy (D-CT). The legislation provides temporary licensing reciprocity for health care professionals in good standing during COVID-19 and future national emergencies. There is now a Senate bill, S. 4421, and a House bill, H.R. 8283.

We need your help to make this a reality this year. Can you take a few minutes and call your two Senators and member of Congress to express your support. It is also a great time to remind them/introduce them to Fragile X.

Step 1: Get the right contact information. If you have been to Advocacy Day or any of the RDLA in-district visits and have the contact information of the staff, reach out to them. Contact information is available on this site: contactingcongress.orgCall. Don’t use their web form. Pro-tip: Call the local district office. Your message will get there just as quickly (thank you, Internet), you will likely be talking with a full-time staff member, and it will probably be easier to get through.

Step 2: Give your opinion. Be succinct. Here are the key points to make:

  • My name is ____________, and I am a constituent. I live in (city).
  • (Your connection to Fragile X, such as, my son has Fragile X syndrome). Fragile X syndrome is an inherited intellectual and developmental disability.
  • Access to specialists is limited and behavior issues can dramatically impact in-person visits. (note any personal successes with telehealth or challenges it could solve, such as, we normally have to drive 8 hours roundtrip to the clinic)
  • I am calling to ask that Senator/Rep ________ support (S. 4421/H.R. 8283), the TREAT Act, to provide reciprocity for medical professionals during the pandemic so they can help individuals across state lines.
  • I am also asking them to support legislation to make telehealth expansion permanent beyond the pandemic.
  • Be prepared to leave your physical address and your email address.

Step 3: Let me know any feedback. If you have anything interesting to note, such as they said they would cosponsor, said they already did, etc., shoot me an email at

Bonus: If you talk to an in-district staff member, get their name. You can reach out later with other opinions, invite them or the member of Congress to a Fragile X event, etc.

Working together, we will get through the pandemic and be better for it.

Thank you in advance for all you do.

Author Dan Whiting

Dan Whiting
Dan is the NFXF director of community impact and has been a member of the NFXF team since 2017. He is passionate about helping individuals with intellectual and developmental disabilities live better lives. He has over 23 years of experience in public policy and communications, including 11 years as a staff member for a U.S. Senator, in the Bush Administration as Chief of Staff at an agency, and as a senior strategist for communication initiatives across the DOD. He loves spending time with his family and friends and dreams of either being an artisan woodworker or comedy writer – or both at the same time.