Advocating for People living with Scleroderma

As the leading patient advocacy organization in the US for people impacted by scleroderma, National Scleroderma Foundation leadership is closely monitoring the current political climate, including actions coming from the White House. We anticipate we will need the united attention and action of our entire community in the coming months and years. Be sure to sign up for our advocacy alerts at https://scleroderma.org/take-action/ to receive time-sensitive announcements email when it’s time to take action and reach out to members of Congress about a vote or sponsorship of a bill that impacts people affected by scleroderma.

We remain committed to maximizing the impact we can have on complex issues facing those living with scleroderma, their families and support networks as well as the medical and scientific communities.

Our leadership will continue lead with integrity and steward a community in which everyone can share openly and engage authentically.?

Health and Human Services?

The Office of Management and Budget (OMB) issued a memo freezing operations at the National Institutes of Health (NIH), Food and Drug Administration (FDA), and Centers for Disease Control and Prevention (CDC). The results of this action included the cancellation of grant reviews and council meetings, at-will NIH leadership put under review for dismissal, programs removed from the NIH website, NIH officers being placed on indefinite administrative leave, and the freezing of all new awards.

Research America! has created a?helpful resource?with a detailed timeline of events surrounding the funding freeze.

Updates?

• Last week, a judge extended a temporary?restraining order?against the OMB plan
• The Senate Finance Committee?voted 14-13 along party lines?to advance RFK Jr. 's nomination for HHS Secretary. The full Senate has yet to schedule a confirmation vote.
• Late Friday, NIH released a notice proposing a dramatic change to its indirect costs (F&A) policy for academic research. The indirect cost policy is set by Congress in the spending bills each year with language indicating the administration cannot make changes. This means the proposed change will likely be challenged in court.

?Take Action!?

• Leaders of the House and Senate Appropriations Committees have started discussions on revised topline spending levels for FY25 appropriations. This is a promising step toward avoiding a year-long extension of flat funding and — with our advocacy — achieving increased research funding.?Take action now by customizing this?email?to share your voice directly with your members of Congress.
• We are also?continuing to engage with our champions?to ensure that as they wrap up FY25 appropriations, our key items continue to be included such as inclusion of scleroderma in the Department of Defense's Peer-Reviewed Medical Research Program and funding for key agencies such as the NIH and CDC. ?

Health Policy Extenders

The March 14 government funding deadline is rapidly approaching. If a bipartisan deal is not reached, a government shutdown is inevitable. It is critical that we engage Members of Congress to emphasize the importance of?key health policy extenders (a full list of health provisions can be found in Division C, Titles I and II, of the?American Relief Act, 2025),?as well as the importance of?reauthorizing other important, R&D-relevant legislation that did not make into the package of health extenders referenced above, including the?Rare Pediatric Disease Priority Review Voucher Program.?

Take Action!?

The best way to reach your elected officials in the House and in the Senate is to call the U.S. Capitol Switchboard at (202) 225-3121. An operator will connect you to your Representative or Senator’s office. If you don’t know who your representative and/or senators are, follow these links for helpful search tools.

Find Your Senators?Find Your Representative

Community Engagement?

Last week, we hosted our first?#TealTalk?of the year, focused on advocacy. You can view a recording on our YouTube channel at?https://www.youtube.com/watch?v=_C4aOvppDhs.?

Please reach out to [email protected] or (800) 722-HOPE [4673] for information and resources along the way.?

Please note, the Foundation is a nonpartisan organization. Regardless of our individual personal beliefs or political affiliations, we must maintain strong working relationships with both sides of the aisle for continued advocacy success for our community.?Thank you for your continued advocacy and support!?