Note: The following is a copy of a letter sent to Congress on June 13, 2017.

Dear Members of Congress:

The National Fragile X Foundation works to provide support, awareness and research for families with Fragile X.

Fragile X (FX) is a group of genetic disorders caused by a mutation (change) in a single gene on the X chromosome, the FMR1 gene. The full mutation of this gene results in Fragile X syndrome (FXS), the most common inherited cause of intellectual disability and autism. It can range from mild to profound impairment. Men and women who carry a Fragile X premutation can be affected by two related disorders. FXTAS is a disorder of the nervous system that can cause tremors and problems with walking, balance, memory, and behaviors among older adults, particularly males. FXPOI is a disorder of the ovary that can cause early symptoms of menopause and sometimes infertility.

Nearly 1 in 400 people in the US carries a FX premutation or full mutation, meaning that nearly 800,000 individuals in the US are directly impacted by FX.

On behalf of these 800,000 people and the families that care for them, we are writing to discuss several issues before the U.S. Congress wrapped up in both healthcare reform and the 2018 Budget. These three issues are vital to FX families and have existing proposals to weaken them:

Healthcare reform. We all know the importance of health insurance coverage in the US. For everyone, it can be difficult, expensive, unruly, bureaucratic, and confusing. For people with ongoing, pre-existing conditions or life-long disabilities, it becomes even more critical and difficult. While we all agree on the need to improve the current system, well-intentioned people have sometimes cavernous differences on what the solutions look like. One policy that should be universal, though, is the need to provide coverage for people with pre-existing conditions. Because FX is caused by an inherited gene mutation, it could be defined as a preexisting condition, even if disorders resulting from the mutation don’t manifest themselves for decades. As you consider healthcare reform efforts, we ask that you insist on coverage for preexisting conditions.

Medicaid. Medicaid is critical to FX families in a couple key areas. First, Medicaid’s Home and Community-Based Services delivers critical early intervention to children with Fragile X syndrome. Depending on their state, some families are able to receive these services soon after they are needed, while others linger years and years on waiting lists. Reducing support for these programs negatively impacts the health and development of children with Fragile X syndrome, not only impacting their and their families’ lives, but potentially costing the taxpayers more money in the future. Investing in early intervention has been shown time and time again to be fiscally responsible policy.

As people with Fragile X syndrome grow into adulthood, many are not able to live on their own or be employed at a full-time job. Medicaid is the only option for health insurance. Please don’t reduce funding to Medicaid. It is literally a lifeline for many FX families.

Supplemental Security Income and Social Security Disability Insurance. SSI and SSDI are the federal programs to support those living with disabilities but not able to work, so it is clearly vital for many FX families and those living with FXS and FXTAS who are not capable of being gainfully employed. Please don’t reduce funding and make program changes that negatively affect SSI or SSDI.

The National Fragile X Foundation prides itself on engaging in the federal public policy process with the recognition that all elected officials want to help those living with FX and other people living with intellectual and development disabilities, even if we disagree on how to get there. The NFXF wants to be a productive part of the process by talking about what is important to our families and how federal public policy can help or hurt them. To help you, we can:

  1. Connect you with families in your district/state who live with FX to dive deeper into these issues or participate in advisory councils, town meetings, panel discussions or just to hear from them.
  2. Provide witnesses for hearings.
  3. Offer detailed insight on specific policy proposals or share them with our families for feedback.
  4. Provide you with an opportunity to talk to our families via tele-town halls, video messages, etc.

If you would like assistance with any of the above, further information or have other ideas to reach out to our families or discuss policy impacts, please contact Dan Whiting, our Director of Communications and Government Relations at 202-747-6203 or dan@fragilex.org.

Thank you for your time. We look forward to working with you to improve the lives of families living with FX.

Sincerely,
Tony Ferlenda
CEO
National Fragile X Foundation