Hope Through Advocacy and Policy

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 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America.

SFA CEO Bert Thomas, PhD, MBA
SFA CEO Bert Thomas IV, PhD, MBA

As I write my last blog for the year, I can’t help but to think about the time of year and what it means for everyone. The Holiday Season is a time of hope and renewal, a time to spend with family and friends, and time to celebrate the special moments and accomplishments of the year. It is also a time to embrace the hope and excitement of the new year. With that said, I’d like to share with you the outcomes of our advocacy efforts and how those will shape the landscape next year and the years ahead.

The Sarcoma Foundation of America (SFA), like many patient advocacy groups, exists to help make the patient journey better and to support the hope for a cure through more research. Not only does the SFA invest in research by funding grants and other scientific projects, but the organization also works to encourage additional research through our public policy advocacy efforts. Many of these efforts are done in collaboration with other patient advocacy groups. Working with coalitions and advocacy partners allows us to amplify the voice of the sarcoma community by joining together with others who share the same goal of advancing medical innovation.

There were several legislative and regulatory initiatives in 2016 that were designed to help stimulate research and drug development. The 21st Century Cures Act (Cures), the brainchild of Reps. Fred Upton (R-MI) and Diana DeGette (D-CO), was introduced in an effort to change the way that the government supports patients in all disease spaces through research and policy to help bring new and innovative therapies to more patients. There was a time when, despite all of the hard work of an amazing number of people across a number of organizations, it appeared that this bill would not become law. But that hard work and persistence paid off and the Cures Act was passed with a vote of 94-5. That’s what I call bipartisan support!

Cures contains a number of important provisions, but there are a couple that are worth special note. Through Cures, the Creating Hope Act was reauthorized. The Creating Hope Act incentives pharmaceutical and biotech companies to develop drugs for rare pediatric diseases that are in need of new innovative therapeutics, of which many sarcoma subtypes qualify. Notably, Cures also contains $4.8 billion in NEW funding for the National Institutes of Health to support more research that lays the foundation of drug development, as well as $1.8 billion for the Cancer Moonshot Initiative.

The SFA has been involved in the Cures process since early in 2014. At the beginning, we provided comments and input to the committee working on the bill on behalf of the sarcoma community and signed on as an official supporter of the legislation. The SFA is thankful that this legislation was recognized for its importance and that it benefited from strong bipartisan support, as improving outcomes for patients is not an issue that should be politicized.

As I noted earlier, the Cures Act includes funding for the Cancer Moonshot. This is an initiative of Vice President Joe Biden, whose family has been personally touched by cancer. The Vice President and his wife, Dr. Jill Biden, are strong supporters of increased cancer research, particularly through additional funds and collaboration. The SFA is proud to have been part of the initial Cancer Moonshot Summit and continues to be actively involved with the Initiative as it moves forward. For the sarcoma patient community, as well as all other cancer patient communities, this is a turning point in converting the awareness of the impact that cancer has on all of us into action. The SFA thanks Vice President Biden, the Obama Administration, and everyone else involved in making this initiative a success.

Unfortunately, the last policy initiative of priority to the SFA was not passed by the Senate this year. However, we believe that the momentum exists to see the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act become law next year. The STAR Act, the most comprehensive childhood cancer bill ever introduced in Congress, also has wide bipartisan support and was passed by the U.S. House of Representatives in December. This bill is a direct result of an effort undertaken by the childhood cancer community, with patient advocacy groups, parents, and the medical community providing input on what should be included. 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.” Because of the limited size of the pediatric cancer space, it will take policy efforts like the STAR Act to materially impact pediatric cancer patient outcomes. For that reason, the SFA has been involved with this process from the start. The SFA is hopeful that this bill will pass both the House and Senate in 2017, as it is vitally important to our sarcoma pediatric patients.

This has been a very successful year for the SFA on all fronts, especially the policy arena. We are proud to represent the sarcoma patient community and strive to improve the patient journey and outcomes for all sarcoma patients.

The SFA wishes everyone a wonderful holiday and happy new year! Most of all, we thank you for your support and promise to keep up the fight to help make next year even better than 2016.