This summer, sarcoma advocates from across the country came together in Washington, D.C. for the Sarcoma Foundation of America’s (SFA) 2026 Sarcoma Advocacy Weekend and Hill Day (July 16). The Life Raft Group was proud to be part of this collective voice for the sarcoma community.
On July 16th, sarcoma advocates – patients, caregivers, and patient advocacy organizations met with members of Congress to bring attention to the needs of people living with sarcoma. Together, we called for continued federal investment in sarcoma research, access to quality healthcare, and policies that address the challenges patients and families face. SFA’s CEO Brandi Felser’s reflected on the power of this type of advocacy on Facebook at the conclusion of our meetings.
Meetings on the Hill
Teams of 3-5 advocates visited the offices of dozens of representatives and senators and focused on four main legislative asks.
Our team of three – Diane W, Nate F (both survivors) and I met with Sydney Pearson (Senator John Fetterman), JP Moreland (Rep. Mike Kelly), Colton Lehman (Senator David McCormick), and Representative Glenn Thompson. We shared personal and community stories of those living with sarcoma and were able to illustrate how these legislative asks directly affect our communities.
The ‘asks’ were as follows:
#1 – We urged them to protect and support robust federal investments in biomedical and cancer research by funding the National Institutes of Health (NIH) at $47.3 billion, the National Cancer Institute (NCI) at $7.46 billion, and Advanced Research Projects Agency for Health (ARPA-H) at $1.5 billion in sustained funding.
#2 – We urged them support and advance:
Clinical Trial Modernization Act –
H.R.3421 House. Sponsor – Rep. Paul Ruiz (D). Status: (Introduced) Referred to the Energy and Commerce; Ways and Mean committees.
S.4440 Senate. Sponsor – Sen. Tim Scott (R): Status: Reviewed twice and referred to the Committee on Finance
Description: This bill authorizes a grant program and provides certain exemptions to support the participation of individuals in clinical trials.
Specifically, the bill authorizes a grant program to support outreach, education, and recruitment efforts for clinical trials that may benefit certain underrepresented populations or communities in need, such as rural or tribal areas.
The bill also exempts from anti-kickback laws for federal health care programs (1) remuneration that is offered to cover participants’ expenses to participate in clinical trials, (2) the provision of free digital health technologies to support participation of underrepresented populations in clinical trials, and (3) payment for participants’ cost-sharing obligations in relation to clinical trials.
Finally, the bill exempts up to $2,000 in remuneration that is received for participating in a clinical trial from income tax.
#3 – We urged them to support to preserve and permanently expand telehealth access with these two Acts:
Connect for Health Act of 2025-
H.R.4206 House – Sponsor – Rep. Mike Thompson (D). Status: (Introduced) Referred to the Energy and Commerce; Ways and Mean committees.
S.1261 Senate – Sponsor – Sen. Brian Schatz (D): Status: Read twice and referred to the Committee on Finance
Description: Summary is in progress. Basically, this bill is about removing specific barriers for telehealth services. It would remove several Medicare telehealth barriers, including geographic restrictions, expand eligible originating sites and practitioners, and address telehealth access through federally qualified health centers and rural health clinics. This bill would make the Telehealth Modernization Act (below) accommodations permanent. If you follow the Senate link, you can read more specific details.
Telehealth Modernization Act
H.R.5081 House – Sponsor Rep. Earl Carter (R). Status: (Introduced) Referred to the Energy and Commerce; Ways and Mean committees.
S.2709 Senate -Sponsor Sen. Tim Scott (R): Status: Read twice and referred to the Committee on Finance
This is primarily an extension bill keeping many of the existing COVID-era Medicare telehealth flexibilities in place through September 30, 2027.
#4 – We urged for support to pass this bipartisan federal legislation introduced to improve lifelong support, care coordination, and resources for the millions of cancer survivors in the United States. Many cancer survivors need resources to help monitor for secondary cancers and late and long-term effects caused by their cancer treatment. This legislation will help improve their quality of life and health outcomes after treatment.
Laine Jones Comprehensive Cancer Survivorship Act –
H.R.8839 House – Sponsor – Reps. Debbie Wasserman Schultz (D). Status: (Introduced) Referred to the Energy and Commerce; Ways and Mean committees and Education and Workforce.
S.5052 Senate – Sponsor – Sen. Amy Klobucher (D). Status: Read twice and referred to the Committee on Finance
Description: To address the health of cancer survivors and unmet needs that survivors face through the entire continuum of care from diagnosis through active treatment and post treatment, in order to improve survivorship, treatment, transition to recovery and beyond, quality of life and palliative care, and long-term health outcomes, including by developing a minimum standard of care for cancer survivorship, irrespective of the type of cancer, a survivor’s background, or forthcoming survivorship needs, and for other purposes.
What can you do?
Contact your representatives and senators and ask them to sign on to support these acts. Each team we met with encouraged us to tell constituents to call in, rather than just email or write.
Educational Workshops
The next day (July 17), the sarcoma advocates gathered for an educational day with presentations which included:
– Dr. Alice Chen, Senior Scientific Officer and Head of the Developmental Therapeutics Clinic at the NCI, discussed how they decide which cancers to study and which drugs to study.
– Dr. Geraldine O’Sullivan Coyne, Director of Clinical Research at START, talked about the differences between trial investigator-initiated clinical trials and pharmaceutical initiated trials.
– An expert panel discussed Opportunities for Engagement – Dr. Jennifer Stundon, FDA, Dr. Kristen Wessel, FDA, Dr. Elena Schwartz, NCI, and Sagar Ghosh, CDMRP (Congressionally Directed Medical Research Programs)
– Dr. Samuel Blackman, physican scientist, pediatric neuro-oncologist, and cancer drug developer, and Entrepreneur-in-Residence at Google Ventures, presented on how companies evaluate and advance rare cancer therapies. [Of note: Dr. Blackman highlighted an important shift in how new medicines are being developed. While large pharmaceutical companies once drove much of early drug discovery, today many novel molecular entities and promising new therapies originate in smaller biotechnology companies. When companies decide which treatments to pursue, key factors include strong proof of concept and whether the potential return is greater than the cost of development. The treatment-addressable market, or the number of patients who could realistically receive a therapy, is an important part of that calculation. For rare diseases, this can make attracting investment more challenging, even when the science is promising.]
– Dr. Jeff Toretsky, Georgetown University, discussed challenges to Drug Development in Sarcoma.
– An expert panel shared briefly and then answered questions on how patients advocates can drive change – Terri Stewart, EMD Serrano, Abe Friedman, US House Committee on Rules, Nancy Gardiner & Jonathan Gardner, Sarcoma Patient Advocates.
For rare cancers like GIST and liposarcoma, progress takes more than good science. It takes research funding, investment in new treatments, policies that support patients, and advocates who make sure rare cancers are not left behind. These two days in Washington were a reminder of how important it is to keep showing up, sharing our stories, and speaking up for what our communities need. When we come together, our voices are stronger and can help move research and better treatments forward.
