WASHINGTON – U.S. Senators Roger Wicker, R-Miss., and Amy Klobuchar, D-Minn., and Representatives Gus Bilirakis, R-Fla., and Doris Matsui, D-Calif., co-chairs of the bipartisan Rare Disease Congressional Caucus, introduced bipartisan, bicameral legislation to increase access to molecular diagnostic testing for rare cancer patients. The Finn Sawyer Access to Cancer Testing Act would ensure patients on Medicare, Medicaid, and the Children's Health Insurance Program (CHIP) can receive testing at the time of first diagnosis, rather than only for recurrent or metastatic cancers. The legislation is named after Finn Sawyer, a three-year-old who passed away from a rare cancer called rhabdomyosarcoma in 2018.
“For patients with rare or pediatric cancers, early tests and care are essential,” Wicker said. “Having access to molecular diagnostics at the first screening can mean the difference between health improvement or years of unsuccessful standard cancer treatments. The Finn Sawyer Access to Cancer Testing Act would allow patients earlier access to targeted cancer therapies.”
“95 percent of all forms of cancer are considered rare, but far too many patients with rare cancers lack access to accurate and timely molecular diagnostic and treatment options, meaning that hundreds of thousands of Americans can’t receive the effective care they need,” Klobuchar said. “By ensuring patients with rare cancers enrolled in Medicare, Medicaid, or CHIP health coverage, can access molecular diagnostic testing at the time of their initial diagnosis, our bipartisan legislation will help patients receive more accurate diagnoses and personalized treatments much earlier in the course of the cancer, providing patients with a better shot at successful recovery.”
"The targeted reforms in our bipartisan, bicameral bill will have a meaningful impact on accelerating the development of treatments for rare cancers and will remove bureaucratic hurdles that currently keep cancer patients from accessing diagnostic screening and effective treatments by qualified specialists," Bilirakis said. "Every cancer patient deserves the best chance of survival, and we must create a streamlined regulatory system and payment model to realize this important goal. Our bipartisan legislation will provide hope to millions of patients and families battling cancer and will lead to improved patient outcomes."
“For the thousands of Americans with rare cancers, access to the best medical care is critical,” Matsui said. “Molecular diagnostics help provide accurate diagnoses to make sure patients get the targeted therapies they need in a timely manner. The Finn Sawyer Access to Cancer Testing Act would help establish equity in access to this vital diagnostic tool. I’m proud to co-author this legislation with my Rare Disease Congressional Caucus co-chairs as we continue to take steps forward in our fight to improve the lives of patients with rare diseases across the country.”
Molecular diagnostics tests provide clinicians with comprehensive data about patients’ unique form of cancer. This data enables patients to use targeted therapies that may have a higher likelihood of success, especially for cancer patients for whom no standard of care exists. Using more precise diagnostic tests also enables patients to better match with relevant clinical trials, and potentially minimizes the unnecessary use of conventional chemotherapy and radiation that can have harmful side-effects. Technological advancements in molecular diagnostics have accelerated in recent years, but lack of insurance coverage and clinician awareness have led to underutilization of these diagnostic tests.
The Finn Sawyer Access to Cancer Testing Act would:
- Mandate coverage for molecular diagnostics tests at the time of initial diagnosis for patients on Medicare, Medicaid and CHIP; and
- Coordinate an education and awareness program on genetic testing. Currently, many health providers and the general public do not have a full understanding of the scope and benefits of molecular diagnostics and genomic testing. This bill will create an education and awareness program in coordination with the Department of Health and Human Services and the Director of the National Human Genome Research Institute to educate physicians and the general public on the use of genomic testing and the role of genetic counselors.
The Finn Sawyer Access to Cancer Testing Act is endorsed by AliveAndKickn; Alliance of Dedicated Cancer Centers; American Society of Hematology; Association for Clinical Oncology (ASCO); Association of Community Cancer Centers (ACCC); Brooke’s Blossoming Hope for Childhood Cancer Foundation; CancerCare; Carson Leslie Foundation; Cervivor Children’s Cancer Therapy Development Institute; Daniela Conte Foundation; Emmanuel Cancer Foundation; Esophageal Cancer Awareness Association; Family Reach; Focus on Rhabdo; Friends of Cathryn Foundation; Gabe’s Chemo Duck Program; Gold Rush Cure Foundation; Jace Ward Tough2gether Against DIPG; Jack’s Angels; Jeff Gordon Children’s Foundation; Julia’s Grace Foundation; Maddie’s Promise; Moffitt Cancer Center; Noah’s Bandage Project; ONE CANCER PLACE; Rally Foundation for Childhood Cancer Research; Rein in Sarcoma; Sarcoma Foundation of America; SebastianStrong; SHEPHERD Foundation; Smashing Walnuts; Smiles from Sean; Society of Gynecologic Oncology; Steven G Cancer Foundation; Summer’s Way Foundation; Super Sam Foundation; The Neuroblastoma Children’s Cancer Society; and the Tyler Robinson Foundation.