To the Honorable Members of the Wisconsin State Legislature:
On behalf of the more than 700 people with cystic fibrosis (CF) in Wisconsin, we thank Senators Felzkowski and Quinn and Representatives Rozar and Schraa for introducing LRB 1683/1, which provides a number of accountability measures to protect patients’ access to medication, including requiring insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing requirements. While copay assistance is not a silver bullet for systemic issues that face our health care system, solutions to address affordability and sustainability cannot come at the expense of patients’ health and financial wellbeing. We ask your support and co-sponsorship of LRB 1683/1.
About cystic fibrosis
Cystic fibrosis is a life-threatening genetic disease that affects nearly 40,000 children and adults in the United States. 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 survey conducted by George Washington University of over 1,800 people living with CF and their families, nearly half reported skipping medication doses, taking less medicine than prescribed, delaying 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. More than 70 percent of survey respondents indicated that paying for health care has caused financial problems such as being contacted by a collection agency, filing for bankruptcy, experiencing difficulties paying for basic living expenses like rent and utilities, or taking a second job to make ends meet. Additionally, while three quarters of people received some form of financial assistance in 2019 to pay for their health care, nearly half still reported problems paying for at least one CF medication or service in that same year.
LRB 1683/1 would also require covered benefits to be considered essential health benefits (EHBs). Currently, private health plans are allowed to deem certain categories of prescription drugs as “non-essential.” This determination allows plans to substantially adjust their cost-sharing for a particular drug or eliminate coverage for certain specialty medications altogether. In doing so, plans can require enrollees to seek free drugs from manufacturers or collect the maximum amount of copay assistance available through manufacturers and other third-party programs. These strategies include an accumulator component, which adds to the considerable costs and administrative burdens for people with CF. Cystic fibrosis treatments rarely have generic alternatives so when private plans exclude specialty CF medications or cover them while placing significant administrative and financial burden on the enrollee, people with CF face the difficult choice of foregoing these necessary treatments, changing to an often more costly insurance plan from the ACA marketplace, or in some cases seeking alternate employment.
We understand the challenge insurers face in managing the rising cost of drugs. 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 manufacturers CF therapies recently reduced the amount of copay assistance available for people enrolled in accumulator programs.
Once again, we want to thank the legislative co-authors for introducing LRB1683/1, which will 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 Wisconsin.