Government Advocacy

Action Alert: July 26, 2017

While the TS Alliance is closely monitoring the current Senate debate about a possible new healthcare bill, today there is an urgent and devastating threat to tuberous sclerosis complex (TSC) research, and we urge you to call your Senators now.

Later this week, the Senate will begin consideration of S. 1519, the fiscal year 2018 National Defense Authorization Act (NDAA). Similar to last year’s bill, S. 1519 includes provisions that severely restrict, and in some cases terminate, critical medical research on TSC funded by the Department of Defense (DoD) through its TSC Research Program (TSCRP) at the Congressionally Directed Medical Research Program (CDMRP).  For instance:

  • Adds an additional level of bureaucratic review and delays by requiring a certification of military applicability for all research grants and further delays the grant by adding an additional 90 days after the certification to the Armed Services Committee.
  • Imposes the type of red tape on the administration of the contract that would be involved in building an aircraft carrier, even though most of the grants administered by the CDMRP (for TSC at least) are less than $1 million.
  • Restricts intellectual property produced by the research.

Last year, we succeeded in removing these onerous provisions from the bill through a bipartisan amendment that was approved by a vote of 66-32. This would not have been possible without the advocacy of individuals like you, who took the time to contact your Senators to urge support for this amendment.

Senators Durbin (D-IL) and Blunt (R-MO) are sponsoring an amendment to nullify the provisions related to medical research included in S. 1519, the fiscal year 2018 NDAA.

We are asking you to call your two Senators and urge them to support the bipartisan Durbin-Blunt Amendment to the National Defense Authorization Act that will ensure funding for the TSCRP continues.

You can find phone numbers for your Senators at www.senate.gov/senators/contact/. Thank you for taking action today!

Sample Script for Calling Senators

Dear Senator:

I am calling today to urge your support for a bipartisan amendment that will be offered by Senator Richard Durbin (D-IL) and Roy Blunt (R-MO) to S. 1519, the fiscal year 2018 National Defense Authorization Act (NDAA). This amendment will nullify provisions included in S. 1519 that severely restrict, and in some cases terminate, critical medical research on tuberous sclerosis complex (TSC) funded by the Department of Defense (DoD) through the Congressionally Directed Medical Research Program (CDMRP).

TELL PERSONAL STORY HERE

Last year, by a bipartisan vote of 66-32, the Senate approved the Durbin amendment to remove similar provisions included in the fiscal year 2017 NDAA.  We urge you to once again vote to protect critical medical research by voting YES on the Durbin-Blunt amendment.

The TS Alliance Government Advocacy Program

TS Alliance government advocacy efforts focus on increasing federal and state appropriations for TSC research, raising awareness, and collaborating with government partners to drive TSC research forward and improve clinical care and treatment options for individuals with the disease.  As of December 2014, state funding for TSC research has been secured in Michigan and Missouri. The TS Alliance advocates for increased financial support of TSC initiatives through the following federal agencies:

  • The National Institutes of Health (NIH)
    • Including National Center for Advancing Translational Science/Office of Rare Disease Research (NCATS/ORDR), National Institute on Neurological Disorders and Stroke (NINDS), National Cancer Institute (NCI), National Heart, Lung and Blood Institute (NHLBI), National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), National Institute of Child Health and Human Development (NICHD), National Institute of Mental Health (NIMH) and National Human Genome Research Institute (NHGRI)
  • The Tuberous Sclerosis Complex Research Program (TSCRP) at the Congressionally Directed Medical Research Program (CDMRP) administered through the Department of Defense (DoD)
  • Centers for Disease Control (CDC)
    • National Center for Birth Defects and Developmental Disabilities (NCBDDD)
  • Food and Drug Administration (FDA)
  • Social Security Administration (SSA)
  • Health Resources and Services Administration (HRSA)

Although our government advocacy efforts continue year-round, activity peaks in February/March when we encourage our grassroots supporters to join us in Washington, DC to educate their members of Congress about TSC and why increased federal funding for TSC research is critically needed.

The annual TS Alliance March on Capitol Hill to advocate for federal funding for the Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defense’s (DoD) Congressionally Directed Medical Research Program (CDMRP) took place in early March 2016. 100 members of the community participated and 165 Members signed the House letter, and 25 Senators signed the Senate letter. The TSCRP has received from Congress an aggregate appropriation of $65 million since fiscal year 2002. 

Join Our Government Action Team

If you haven’t done so, join our Government Action Team now! Also, be sure to use our Government Advocacy Toolkit for documents to help you schedule your appointments and other helpful items. 

March on Capitol Hill

The TS Alliance March on Capitol Hill is an annual event that takes place in late February or early March. This event is held in conjunction with the annual TS Alliance leadership training as well as the TS Alliance Board of Directors meeting. These events are open to the community for participation.

The March on Capitol Hill is a government advocacy event centered around securing continued federal funding for the Tuberous Sclerosis Complex Research Program (TSCRP) within the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense (DoD). Each year, volunteers from across the country join together and meet with their senators and representatives to encourage them to sign on to a Dear Colleague Letter in support of the TSCRP.

We invite anyone interested in government advocacy to participate in this event whether it is from home or by coming to Washington, DC. If you are able to join us in DC, the TS Alliance will provide the following free of cost:

  • Training and coordination with others coming from your state
  • Special hotel room block pricing
  • Dinner Tuesday and Thursday

If you are unable to join us in DC, you can still participate by sending your Community Alliance representative who is coming to DC your personal story to take with them to your representatives and senators.

If you are interested in joining us on Capitol Hill, please contact Katie Smith at ksmith@tsalliance.org.

Need More Information?

Please contact Katie Smith at (800) 225-6872 or ksmith@tsalliance.org if you have any questions.