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Massey Cancer Champion, seed grant recipient advocates on Capitol Hill for survivors

Dec 15, 2022

cancer-champion-article image Photo credit: Trials of Color

On Dec. 14, members of Congress introduced a landmark piece of legislation that aims to provide a lifeline to survivors and their families. The Comprehensive Cancer Survivorship Act (CCSA) addresses the entire survivorship continuum of cancer care.

Sharon Rivera-Sanchez, a Massey Cancer Champion and 2022 seed grant recipient, joined U.S. Rep. Debbie Wasserman Schultz (D-Fla.), U.S. Sen. Amy Klobuchar (D-Minn.), U.S. Sen. Ben Cardin (D-Md.), U.S. Rep. Brian Fitzpatrick (R-Pa.) and U.S. Rep. Mark DeSaulnier (D-Calif.) to share how CCSA would enhance the lives of cancer survivors.

“This experience has made me feel like patient advocates’ voices do matter,” said Rivera-Sanchez, who was diagnosed with triple-negative breast cancer in 2013.

The CCSA, which the National Coalition for Cancer Survivorship (NCCS) helped to develop, would set new standards for survivorship from diagnosis to end of life. It includes efforts to address gaps in care and meet navigation needs for cancer survivors and their families and caregivers.

At the CCSA announcement on Capitol Hill, Rivera-Sanchez spoke about the lasting effects of cancer treatment.

“Chemotherapy left me with permanent nerve damage in my feet, neuropathy. That happens all the time,” said Rivera-Sanchez. “I had it in my hands, and it actually left my hands. If you have neuropathy in your hands, you literally drop stuff. Things will just slide out of your hands.”

Rivera-Sanchez also highlighted the barriers that impact survivors, including in the areas of transportation and childcare. She stated that financial matters from the loss of employment and health insurance plague individuals who have been diagnosed.

“Cancer patients go through so much,” she recounted. “A lot of times they lose their jobs during treatment. So they have a choice. Go to the Employment Opportunity Commission (EOC) to fight for their job or fight for their life. Most people fight for their life.”

The CCSA includes six pillars:

  • Care Planning and Transition: Provides coverage to address the transition to primary care to help survivors develop personalized treatment care plans, standardizes processes, and consolidates treatments to guide survivorship monitoring and follow-up care;
  • Alternative Payment Model: Studies existing reimbursement landscape to develop an alternative payment model to ensure a coordinated approach to survivorship care across an episode of care;
  • Navigation: Develops effective and comprehensive navigation services that emphasize the continuum of care, such as follow-up and health disparities and determinants, like food insecurity, housing, transportation, labor, broadband and telehealth access, and childcare;
  • Quality of Care: Establishes grants to promote utilization of navigation, employment of risk-stratification, transition to primary care, utilization of care plans, potential use of at-home care, and better use of information technology for patient experience data;
  • Workforce: Establishes workforce assistance grants to help survivors, their families, and caregivers when faced with a range of workforce challenges; and
  • Education, Awareness: Creates resources for survivors and health professionals to promote early detection, preventive care and help providers provide high-quality services.

According to the AACR Cancer Progress Report 2022, there are currently 18 million cancer survivors in the United States. That number is projected to rise to 26 million by 2040 due to advancements in early detection, preventive care and the treatment of many cancers.

While introducing the CCSA with members of Congress, Rivera-Sanchez also noted the importance of clinical trials in the survivorship equation. After enrolling during her own treatment, Rivera-Sanchez founded Trials of Color (TOC), a nonprofit organization that educates the community on the need for more diversity in clinical research.

To support her TOC efforts, Massey’s Community Grant Initiative awarded Rivera-Sanchez with a $5,000 seed grant; she used it to raise colorectal cancer awareness among underserved and minority populations in Petersburg, Va.

“The CCSA is exactly what the doctor ordered,” said Rivera-Sanchez. “TOC will do everything within our power to help get this passed through Congress.”

As a Massey Cancer Champion, Rivera-Sanchez also gives her time to advocate for patients in active treatment and long-term survivors at events coordinated by the cancer center.

Written by: Amy Lacey

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