On April 1, the American Cancer Society Cancer Action Network, or ACS-CAN, will be hosting its annual Cancer Action Day at the Statehouse, where advocates will meet with lawmakers to discuss the organization's legislative priorities. Ryan Strik, ACS-CAN’s government relations director, spoke with Providence Business News about issues facing cancer patients in the state.
PBN: What is the most pressing issue facing cancer patients in Rhode Island?
STRIK: Every year, nearly 7,500 Rhode Islanders receive a cancer diagnosis. Because every cancer diagnosis is unique, each of these individuals’ experience with the disease is similarly unique. However, there are certain concerns shared among the majority of cancer patients across the nation – and many of those relate to the cost of cancer. Survey data consistently shows that ensuring that cancer screenings and preventive care are free for patients and reducing the burden of medical debt are among the top priorities for cancer patients and survivors.
People with cancer often bear significant health care costs because they can have substantial health care needs, are high utilizers of health care services, use many different providers, and sometimes require more-expensive treatments. They also must pay many indirect costs, like transportation and lodging, as well as losing wages due to unpaid time off or job loss, that add to their already heavy cost burden. According to data from a May 2024 survey, nearly half of the cancer survivors surveyed carried medical debt related to their treatment.
Medical debt impacts many people with cancer, their caregivers and their families. ACS-CAN has long fought for public policies – like access to comprehensive and affordable health insurance coverage – that reduce the likelihood or severity of that debt. Unfortunately, many Americans remain uninsured or underinsured, and even those with comprehensive coverage can still incur significant medical debt.
It is worth noting that these costs and hardships do not impact all cancer patients equally – there are certain factors that make a patient more likely to experience financial hardship, including being younger, a person of color, lower income or less educated. Addressing these persistent disparities is among the many issues ACS-CAN keeps at the forefront of its legislative work.
PBN: What trends have you noticed in the out-of-pocket expenses for a patient's follow-up care?
STRIK: With more than 200 different types of cancer, there is no “one-size-fits-all” cancer treatment – and therefore the costs of cancer treatment vary significantly from patient to patient. However, there is no doubt costs are rising and the out-of-pocket cost burden on a cancer patient is sometimes unaffordable. We continue to see the unfortunate trend of patients having to pay out of pocket for follow-up screenings that confirm or rule out a cancer diagnosis and being saddled with significant costs related to treatments and prescription drugs.
The National Cancer Institute estimated that cancer-related medical costs in the U.S. were $208.9 billion in 2020, which was likely an underestimate because it did not account for the growing cost of treatment. Cancer-related costs to patients are estimated at $21.1 billion, including $16.2 billion in total out-of-pocket costs and $4.9 billion in patient time costs (travel to/from treatment and waiting for and receiving care).
Current law establishes a limit on what most private insurance plans can require enrollees to pay in out-of-pocket costs. Yet, some patients with complex diseases like cancer find it difficult to afford their treatments – even when they have health insurance.
According to the R.I. Office of the Health Insurance Commissioner, 87% of Rhode Islanders with incomes under $75,000 worry about affording their health coverage or care. Sixty-six percent delayed, cut back, or skipped care altogether due to exorbitant costs.
In the face of trending upward costs of care, it’s critical we protect and advance policies that reduce financial toxicity and protect affordable access to cancer screenings, early detection tests and cancer treatment. We are advocating for additional policies to protect patients from unaffordable costs.
PBN: What steps does ACS-CAN hope lawmakers will take to ease these costs?
STRIK: We are fortunate that Rhode Island lawmakers are considering two initiatives that would help address the financial burden on cancer patients: House Bill 5430/Senate Bill 197, which would eliminate cost-sharing for diagnostic and supplemental breast exams – and Senate Bill 477, which would protect access to critical prescription drug copay assistance programs and help make medications more affordable for Rhode Islanders. In sum, both pieces of legislation would reduce the cost burden on Rhode Islanders with cancer, or those being screened for cancer.
While screening mammograms are free to most insured women starting at age 40, follow-up testing often results in out-of-pocket cost sharing for patients. Rhode Island state lawmakers are looking to address the out-of-pocket expenses serving as financial barriers to residents’ access to potentially lifesaving tests that rule out or confirm a cancer diagnosis. This legislative session, leaders will have the opportunity to support a bipartisan proposal to remove costs associated with diagnostic and supplemental imaging for high-risk patients. This will ensure that out-of-pocket obligations do not discourage Rhode Islanders from completing the breast cancer screening process.
It’s worth noting that breast cancer is one of the most commonly diagnosed cancers in Rhode Island, accounting for approximately 13% of new cancer cases annually and 7% of cancer deaths – lending to the pressing need to address the out-of-pocket costs associated with follow-up breast cancer screenings, helping patients get an earlier diagnosis with increased positive health outcomes.
Because affordability concerns for the cancer community in Rhode Island are not limited to expenses associated with screening, its important lawmakers give equal consideration to addressing costs related to treatment.
For patients who rely on prescription drugs to treat their disease, the high costs can be unaffordable. This is especially true for newer drugs that do not have a generic equivalent. Many programs exist to help patients afford their medication, but unfortunately some are being circumvented by insurers.
Current practices in Rhode Island make it so that a patient using copay assistance to fill a prescription for a lifesaving medication may incur hefty unexpected medical bills – a result of insurers or pharmacy benefit managers not applying prescription drug copay assistance payments to a patient’s deductible. Last legislative session, lawmakers laid out a plan to address this discriminatory practice. It received support across the legislature but was not enacted into law and cancer patients are eager to see leaders take up the issue this session.
We are fortunate to have sponsors like Sen. Robert Britto, Sen. Samuel Zurier and Rep. Kathleen Fogarty as great partners and advocates in the General Assembly and appreciate their leadership in moving these issues forward.
PBN: Has ACS-CAN engaged with hospitals or cancer-care providers about their thoughts on these out-of-pocket expenses? If so, what was their response?
STRIK: The American Cancer Society and ACS-CAN are proud to have long-standing relationships with many of Rhode Island’s leading hospitals and cancer centers. While current efforts to address out-of-pocket costs are taking place at the legislative level, we work together with hospitals in a variety of ways to help reduce the financial burden on cancer patients through things like transportation grants and resources for patients and caregivers.
The American Cancer Society provides additional resources to help address the costs associated with cancer care, such as free rides to treatment through its Road to Recovery program and partnerships with Extended Stay America to provide a low-cost place to stay during treatment. For those with cancer-related concerns – financial or otherwise – the American Cancer Society is available 24/7 to provide tailored advice and resources simply by calling 1-800-227-2345.
PBN: How does Rhode Island compare with other states on the amount that patients spend on out-of-pocket expenses?
STRIK: While there is limited data regarding how Rhode Island compares to other states in out-of-pocket expenses, we can speak to the overall cancer burden as compared to other states. An estimated 7,500 Rhode Islanders are … diagnosed with cancer each year, [resulting in] a higher incident rate (463.3) than the national average (455.6). However, the state’s cancer mortality rate (142.8) remains lower than the national average (146). This is partly thanks to the incredible cancer institutes, access to care and groundbreaking research that takes place here in Rhode Island.
Katie Castellani is a PBN staff writer. You may contact her at Castellani@PBN.com.
