Cancer Advocates Hold Cancer Action Day at Capitol, Urging Lawmakers to Improve Access to Lung Cancer Screening & Paid Medical Leave, Ensure Privacy around Genetic Testing
ALBANY, NY—May 7, 2024—Cancer patients, their families and patient advocates from across the state have come together at the State Capitol in Albany today to advocate for several legislative proposals that aim to address the needs of patients across the cancer continuum. The American Cancer Society Cancer Action Network (ACS CAN) gives people impacted by cancer a powerful voice with lawmakers by holding an annual Cancer Action Day.
Topping the list of priorities this year were three proposals that seek to promote New Yorkers’ ability to prevent, detect and survive cancer. Respectively, the proposals seek to improve access to lung cancer screening (S8553-A), strengthen the state’s paid leave program (S2821B /AB4053B) and institute patient protections around the use of genetic testing results (S1208 / A7451 and S5415-A / A2083-A).
Advocates are calling on state lawmakers to pass the legislation improving access to paid family and medical leave this session after failing to do so in the state budget.
Volunteers met with lawmakers to discuss the power in early detection of lung cancer and the promise of Senate Bill 8553-A in limiting barriers to screening. ACS CAN volunteer Jackie Nesbitt shared her story with stage III lung cancer and navigating cost-sharing around screening. She emphasized how these out-of-pocket expenses can act as a deterrent to seeking care.
“We need to do better in detecting lung cancer in New York. Screening is incredibly effective but very few New Yorkers who are eligible for screening actually receive it. This is because the cost burden for follow-up care is too high and inhibits people from completing the lifesaving screening process,” said Nesbitt.
Advocates were also present at the Capitol to promote the importance of paid medical leave and privacy around genetic testing, two issues that have greatly impacted ACS CAN volunteer Danielle Doucette, a breast cancer survivor who tested positive for a gene mutation that increased her cancer risk.
“There is a lot I anticipated carrying with me from my experience with breast cancer. I knew I’d carry the physical markers of my disease. I knew I’d continue to carry the weight of generational cancer trauma. I did not know that I would have to carry the fear of my genetic testing records resulting in discrimination from insurers,” said Doucette.
While genetic testing can help patients mitigate the onset of disease or better plan for the management of a condition, testing results can be used by long-term care, disability or life insurers to deny coverage or charge higher premiums. Senate Bill 1208 / Assembly Bill 7451 and Senate Bill 5415-A / Assembly Bill 2083-A seek to address these concerns and provide patients protection from discrimination.
Doucette emphasized the need for lawmakers to expand the state’s paid family and medical leave program, specifically the Temporary Disability Program through Senate Bill 2821-B / Assembly Bill 4053-B.
She said, “Too many New Yorkers are forced to choose between working during their treatment to pay the bills or taking unpaid leave to focus on healing. We need a paid family and medical leave program that reflects the needs of the people it aims to serve.”
About ACS CAN
The American Cancer Society Cancer Action Network (ACS CAN) makes cancer a top priority for policymakers at every level of government. ACS CAN empowers volunteers across the country to make their voices heard to influence evidence-based public policy change that improves the lives of people with cancer and their families. We believe everyone should have a fair and just opportunity to prevent, find, treat, and survive cancer. Since 2001, as the American Cancer Society’s nonprofit, nonpartisan advocacy affiliate, ACS CAN has successfully advocated for billions of dollars in cancer research funding, expanded access to quality affordable health care, and advanced proven tobacco control measures. We’re more determined than ever to stand together with our volunteers to end cancer as we know it, for everyone. Join the fight by visiting www.fightcancer.org.
