Dear Honorable Members of the Health Care Availability & Accessibility Committee and the Insurance Committee:
On behalf of the people living with cystic fibrosis in Illinois, we are writing to express our support for HB 4504 and HB 5051. To help ensure patients, including those with CF, are able to afford inhaled medications and the devices used to administer them, HB 4504 would limit copayments for prescription inhalers to $25 per 30-day supply and limit the total amount a person is required to pay for all prescription inhalers to $50 per 30 days. Additionally, prior authorization (PA) can delay access to critical CF therapies and the Cystic Fibrosis Foundation supports HB 5051 which would prohibit insurers from requiring PA for medication prescribed to a patient for six or more consecutive months, which will relieve significant administrative burden for patients and care teams.
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.
Copay Caps for Inhaled Medications
Inhaled medications and the devices used to administer them are a crucial part of the CF treatment regimen—according to the 2022 Cystic Fibrosis Patient Registry, almost all people with CF are prescribed beta agonists such as albuterol. Inhaled medications can allow more air to travel through airways, which may help other treatments such as mucus thinners, airway clearance techniques, and antibiotics work more effectively. Additionally, many people with cystic fibrosis take inhaled medications before exercising.
Unfortunately, due to the high cost of prescription drugs, many people with CF — even with the help of financial assistance — are forced to make difficult spending tradeoffs that can impact their health. According to a recent survey conducted by George Washington University of over 1,800 people living with CF and their families, nearly half of those surveyed reported delaying or forgoing care — including skipping medication doses, taking less medicine than prescribed, filling a prescription, or skipping a treatment altogether — due to cost concerns.
The cost of inhaled medications and the medical devices used to administer them could place additional financial strain on patients who may already be struggling to afford their care. In the aforementioned survey, people with CF report having the most difficulty paying for prescription drugs compared to any other component of their health care. Further, more than 70 percent of people with CF said paying for health care has caused financial problems such as being contacted by a collection agency, filing for bankruptcy, experiencing difficulty paying for basic living expenses like rent and utilities, or taking a second job to make ends meet. Limiting copayments for prescribed medical devices that deliver inhaled in addition to the prescribed inhaled medication will help mitigate some of the financial burden that accompanies managing cystic fibrosis.
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 HB 5051 exempts drugs and therapies prescribed to a patient for six or more consecutive months from prior authorization requirements. Additionally, we appreciate that the bill specifically exempts insulin, among certain other chronic disease medications, from PA entirely — as many people with CF take insulin to treat CF-related diabetes. Eliminating unnecessary repeat authorizations and 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. However, high out-of-pocket-costs 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 HB 4504 and HB 5051 to help ensure timely and affordable access to prescription drugs for people living with CF and reduce administrative burden for their providers.