Cancer survivors and patients push for state policy change in Albany, honor Brooklyn pol

More than 130 passionate cancer advocates, including survivors, patients, and caregivers, converged on the state Capitol Tuesday for Cancer Action Day, an annual event hosted by the American Cancer Society Cancer Action Network (ACS CAN).

Armed with personal stories and powerful messages, they met with state lawmakers, urging them to take action on policies that could transform cancer care and help fight the disease.

“Cancer Action Day is a chance for patients and survivors to elevate their voices,” said Michael Davoli, senior government relations director for ACS CAN New York. “Our organization is committed to working with state lawmakers to help prevent, treat, and end the cancer burden as we know it – for all New Yorkers. Our message to lawmakers today is – you play a crucial role in that fight.”

Cancer survivors, caregivers, and patients gather in Albany to advocate for life-saving policies during Cancer Action Day.Photo courtesy of ACS CAN

The focus of this year’s event was threefold: advocating for legislation that will improve the chances of survival for lung cancer patients, updating New York’s paid family and medical leave program, and expanding access to patient navigation services across the state.

Among the volunteers was Jacqueline Nesbit, a two-time lung cancer survivor, who shared her experience with the high out-of-pocket costs associated with lung cancer screenings. Nesbit attended Cancer Action Day to promote Senate Bill 2000, which recently passed unanimously in the Senate. If signed into law, the bill would eliminate cost-sharing for lung cancer screenings and follow-up tests for eligible New Yorkers insured through state-regulated health plans, including Medicaid.

“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,” Nesbit said. “This is often because the cost burden for follow-up care is too high and inhibits people from completing the lifesaving screening process.”

Stacey Betler, an advocate and survivor, recounted her harrowing experience of being diagnosed with breast cancer at just 27, while pregnant with her second child — and then losing her job in the midst of it all. Betler emphasized the need for improvements to the state’s paid family and medical leave programs, which she believes fail to meet the needs of cancer patients.

Advocates urged lawmakers to improve coverage for cancer testing and screening. Photo courtesy of ACS CAN

“Our state’s paid leave programs do not meet the needs of the people they aim to serve. It surely did not alleviate the near insurmountable burdens I faced as a cancer patient and sole provider for my kids. I was fighting for my life and my livelihood and looking to the state for real support,” said Betler. “Had the state’s paid leave programs enabled me to receive job protection, health insurance continuation, and a livable wage, I might’ve weathered the storm without half the trauma that I still carry with me today, 15 years later.”

Betler is advocating for Senate Bill 172 and Assembly Bill 84, which would provide crucial improvements to paid leave programs, including removing the $170-per-week cap on benefits and increasing the stipend to 67% of the state’s average weekly wage by 2029.

ACS CAN advocates also urged lawmakers to support Assembly Bill 6586 and Senate Bill 5565, which would expand access to patient navigation services, which help people navigate the country’s complex healthcare system.

Emily Tier, a palliative care social worker from Binghamton, highlighted the importance of patient navigation in transforming cancer care.

“Navigating the health care system can be immensely intimidating and confusing for patients, especially those coming into contact with the system for the first time. Patient navigators provide information and support to guide patients through appointments, treatments, and, ultimately, survivorship,” said Tier. “Where we can, we need to prioritize improving access to resources that we know can lead patients to more time doing what matters most to them with who matters most to them.”

State Sen. Senator Roxanne Persaud was honored by advocates and survivors.Photo courtesy of ACS CAN

The day also featured the presentation of ACS CAN’s “Distinguished Advocacy Award” to southeast Brooklyn state Sen. Roxanne Persaud and Assembly Member Pamela Hunter of Syracuse for their contributions to cancer care. The award, presented on behalf of the organization, recognizes their efforts to expand access to biomarker testing and remove barriers to cancer screening.

“Senator Persaud and Assemblywoman Hunter have been invaluable allies in our mission to reduce the cancer burden across New York,” said Davoli. “Their leadership in expanding access to biomarker testing and removing barriers to cancer screening have brought hope into patients’ lives and equity into conversations around cancer care.”

“Everyone deserves access to cancer care — no matter where they live or how much they earn,” said Persaud. who represents Canarsie, East New York, Brownsville and parts of Queens. “My legislative work is rooted in the commitment to making sure every New Yorker can get the care they need, when they need it.”