Dear Honorable Members of the Insurance Committee:
On behalf of the people living with cystic fibrosis in Illinois, we are writing to express our support for SB 3307 and SB 3732. The first bill, SB 3307, would require covered benefits to be considered essential health benefits (EHBs). Additionally, prior authorization (PA) can delay access to critical CF therapies, and the Cystic Fibrosis Foundation supports SB 3732 which would prohibit insurers from requiring PA for chronic disease medications, any medication prescribed to a patient for six or more consecutive months, or any patient currently managed with an established treatment regimen.
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, including nearly 850 people in Illinois, 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. CF care is grounded in evidence-based clinical guidelines and as a complex, multi-system disease without a cure, CF requires an intensive treatment regimen including multiple medications. For people with CF, it is not uncommon to take seven therapies every day, and as many as twenty. Many medications are taken year after year, and in most cases, for life. While advances in CF care are helping people live longer, healthier lives, we also know that the cost of care is a barrier for many people with the disease.
Maximizer Program Ban
Third-party entities such as maximizers add complexity to an already opaque system. These entities exist to lower costs to the payer. Maximizers often outsource a patient’s drug coverage to a third-party entity that sets the patients’ cost-sharing at a level to maximize use of manufacturer copay assistance. In these instances, patients are either forced to enroll in the maximizer program, or forgo coverage for their drug. If the patient chooses not to enroll, or doesn't by accident, any financial assistance the patient receives will not be counted towards meeting their deductible or out-of-pocket limit, increasing the cost burden for the patient.
SB 3307 would require items, such as prescription drugs, or services in the EHB categories to count towards annual cost-sharing limits. Currently, private health plans are permitted to deem certain categories of prescription drugs as “non-essential.” This determination allows plans to substantially adjust their cost-sharing for a particular drug to collect the maximum amount of copay assistance available through manufacturers and other third-party programs. 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 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. SB 3307 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.
Prior Authorization Reform
Prior authorizations are one of the obstacles people with CF must navigate when accessing care. These requirements can delay the start or continuation of needed treatments, which can lead to adverse health outcomes. In a 2022 survey by the American Medical Association, 94 percent of physicians reported that prior authorizations led to delays in necessary care for their patients whose treatment required PA and 80 percent reported that PAs have led to patients abandoning their treatment at some point. 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.
PAs can also cause significant administrative burden for CF providers and are often redundant for medications that people with CF must take indefinitely to maintain their health. In a CF Foundation survey of CF care teams, 58 percent of providers reported spending 20 percent or more of their time on PAs in 2016. This arduous process diverts valuable time and resources away from direct patient care. The Foundation understands that payers adopt prior authorization policies to ensure patients only receive medically necessary care, and we recognize the challenge insurers face in managing medication utilization and cost. However, utilization management cannot come at the expense of delays in patient access to needed care.
Recognizing that people living with CF and other lifelong, chronic diseases take the same drugs for most of their lives, the Foundation applauds that SB 3372 exempts drugs and therapies used to treat chronic and long-term care conditions from prior authorization requirements. Exempting insulin from prior authorization requirements will help promote immediate and consistent access to life-saving therapies for people with CF, and significantly reduce administrative burden for CF care teams.
The Cystic Fibrosis Foundation understands the challenge insurers face in managing medication utilization and the rising cost of health care, and that copay assistance programs mask bigger cost and affordability issues in the health care system. However, cost containment and utilization management strategies that further burden patients are unacceptable and cannot come at the expense of delays in patient access to needed care. We urge you to support SB 3307 and SB 3732 to help ensure timely and affordable access to prescription drugs and reduce administrative burden for people living with CF and their providers.