Advocacy

Public Policy

Advocating on behalf of those impacted by sarcoma has been a core principle of the Sarcoma Foundation of America’s mission since the organization was founded in 2001.  The SFA continues to be actively engaged in the public policy arena, urging legislators and regulators to place a high priority on rare cancer research, drug development, and access to quality patient care.

The SFA joins with other coalitions and patient advocacy organizations to work on public policy efforts related to cancer and rare disease issues.

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Current Legislative Priorities

115th Congress

STAR Act

STAR

H.R. 820/S. 292, the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2017

The SFA is a supporter of H.R. 820/S. 292, the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act. The STAR Act would expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, enhance the quality of life for childhood cancer survivors, and ensure publicly accessible expanded access policies that provide hope for patients who have run out of options.

Status: The STAR Act has been introduced in both the House of Representatives and the Senate.

Resources:

Alliance for Childhood Cancer Summary of the STAR Act


114th Congress

STAR Act

H.R. 3381/S. 1883, the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2015
staractThe SFA is a supporter of H.R. 3381/S. 1883, the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act. The STAR Act would expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, enhance the quality of life for childhood cancer survivors, and ensure publicly accessible expanded access policies that provide hope for patients who have run out of options. 

Status: The STAR Act passed in the House of Representatives but was not taken up by the Senate.  The legislation will need to be reintroduced in the 115th Congress.

Resources:

SFA Childhood Cancer STAR Act Action Alert

Alliance for Childhood Cancer Summary of the STAR Act

Op-ed from The Hill

Op-ed from the Kalamazoo Gazette

 

21st Century Cures Act

21st-century-cures2-640x420The SFA is a supporter of H.R. 6, the 21st Century Cures Act. HR 6 accelerates the discovery, development and delivery of life saving and life improving therapies, and transforms the quest for faster cures by: removing barriers to increased research collaboration; incorporating the patient perspective into the drug development and regulatory review process; measuring success and identifying diseases earlier through personalized medicine; modernizing clinical trials; providing new incentives for the development of drugs for rare diseases; helping the entire biomedical ecosystem coordinate more efficiently to find faster cures; and investing in 21st century science and next generation investigators.

Status: The 21st Century Cures Act passed in the House of Representatives and Senate and was signed into law on December 13, 2016.

Resources:

House Energy and Commerce Committee – 21st Century Cures

One Voice Against Cancer Coalition Letter of Support

Patient Community Letter of Support

Alliance for Childhood Cancer Letter of Support

 

NIH and FDA Funding

The SFA strongly urges Congress to fully fund the National Institutes of Health (NIH) and the Food and Drug Administration (FDA).  Drastic and significant cuts in the budgets of health and science programs put funds for cancer research in jeopardy and could slow down the process for drug approval.


Sarcoma Petitions

Petitions have become an important tool to mobilize stakeholders to advocate for policy changes and other actions.  The Sarcoma Foundation of America does, from time to time, participate in petitions.  One example is the petition to request a Presidential Proclamation designating July as Sarcoma Awareness Month. Typically, the SFA stays neutral on most petitions as we have a responsibility to represent all sarcoma patients.  We do feel it is important to provide a venue for stakeholders in the sarcoma community to share their petitions with others.  For this reason, we have created a webpage where these petitions can be share.

If you are interested in recent sarcoma petitions, please follow this link.

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