CF Foundation Supports New Jersey’s Efforts to Ban Co-Pay Accumulators Programs

CF Foundation Supports New Jersey’s Efforts to Ban Co-Pay Accumulators Programs

In a letter to the New Jersey Senate Committee on Commerce, the Cystic Fibrosis Foundation expressed support for S3818, requiring insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing obligations.

Dec. 11, 2024 | 4 min read

Dear Honorable Members of the Senate Committee on Commerce,

On behalf of nearly 750 people living with cystic fibrosis in New Jersey, we write to express our support for S3818, which would require insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing. We recognize that copay assistance is problematic; it allows pharmaceutical companies to charge payers high prices, while shielding many individual patients from the costs. It is reasonable that payers would push back against this tactic, as drug costs continue to increase. Nevertheless, patients with chronic diseases like CF often struggle to afford their care and rely on copay assistance to access vital medications. S3818 would help ensure patients’ health and financial wellbeing are not sacrificed in the ongoing, systemic debate between payers and pharmaceutical companies about prescription drug pricing.

About Cystic Fibrosis
Cystic fibrosis is a progressive, genetic disease that affects the lungs, pancreas, and other organs. There are close to 40,000 children and adults living with cystic fibrosis in the United States, and CF can affect people of every racial and ethnic group. CF causes the body to produce thick, sticky mucus that clogs the lungs and digestive system, which can lead to life-threatening infections. Cystic fibrosis is both serious and progressive; lung damage caused by infection is irreversible and can have a lasting impact on length and quality of life. As a complex, multi-system condition, CF requires targeted, specialized treatment and medications. While advances in CF care are helping people live longer, healthier lives, we also know that the cost of care is a barrier to care for many people with the disease.

Accumulator Programs Jeopardize Access to Care
Accumulator programs prevent third-party payments from counting towards deductibles and out-of-pocket limits and therefore increase out-of-pocket costs for patients — which can cause people with CF to forgo needed care and lead to adverse health outcomes. According to a 2024 survey conducted by the Cystic Fibrosis Foundation and the Dartmouth Institute, over a third of people with CF delayed at least one aspect of their CF care in the last year — including but not limited to skipping medication doses, taking less medicine than prescribed, filling a prescription, or skipping a treatment altogether — due to cost concerns. Because CF is a progressive disease, patients who delay or forgo treatment — even for as little as a few days — face increased risk of lung exacerbations, costly hospitalizations and potentially irreversible lung damage.

Accumulator programs also place additional financial strain on people with CF who are already struggling to afford their care. Despite the fact that over 80 of people living with CF received some form of financial assistance in addition to insurance to help pay for their health care, almost 70 percent of people with CF indicated that paying for health care has caused financial problems such as the inability to accumulate savings, difficulty paying for basic living expenses like rent and utilities, or needing to take a second job to make ends meet.

We understand the challenge insurers face in managing the rising cost of drugs, and that copay assistance programs mask bigger cost and affordability issues in the health care system. However, cost containment strategies that further burden patients are unacceptable. Accumulators are especially challenging for a disease like CF, which has no generic options for many of the condition’s vital therapies. The situation has become even more dire as a company that manufactures CF therapies has reduced the amount of copay assistance available for people enrolled in accumulator programs.

We urge you to support S3818 and help ensure continued access to quality, specialty care for people with CF. The Cystic Fibrosis Foundation appreciates your attention to this important issue for the CF community in New Jersey.

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