Dear Chairman Stinnett and Members of the Committee on Health and Mental Health:
On behalf of the people living with cystic fibrosis in Missouri, we are writing to express our support for HB 1195. As the cost of prescription insulin has risen drastically over the past decade, so too have patients’ out-of-pocket costs, which threaten access to care for those who depend on the medication. HB 1195, which would limit insulin copayments to $35 for a 30-day supply, will help ensure patients, including those with cystic fibrosis-related diabetes (CFRD), are able to afford this vital treatment.
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 800 people in Missouri, and CF can affect people of every racial and ethnic group. CF affects the whole body and requires an intensive daily treatment regimen to address its many manifestations. Eighty-six percent of CF patients also have at least one health complication in addition to cystic fibrosis including CFRD, asthma, sinus disease, and others.
Cystic fibrosis-related diabetes is one of the most common complications experienced by people with CF, occurring in four percent of adolescents and 30 percent of adults living with CF. Due to the progressive nature of the disease, CF can cause scarring or “fibrosis” of the pancreas, which can lead to insulin deficiency and CFRD. As the name suggests, cystic fibrosis-related diabetes is unique to people with CF and, therefore, manifests and is treated differently than other forms of diabetes. However, like type-1 and type-2 diabetes, insulin is a crucial part of the treatment regimen — nearly three-quarters of CFRD patients require chronic insulin use, often several times per day.
Help ensure access to prescription insulin for people with CF
Unfortunately, due to the high cost of insulin and other 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 2024 study conducted by the Cystic Fibrosis Foundation and Dartmouth College, over a third of people with CF delayed or went without 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, delaying filling a prescription, or skipping a treatment altogether — due to cost concerns. Those living with CFRD who do not have consistent access to insulin may be unable to properly manage their blood sugar levels, putting them at increased risk of irreversible damage, costly hospitalizations, and declining health outcomes.
The cost of insulin also places additional financial strain on patients who may already be struggling to afford their care. In the aforementioned survey, one of the most common reasons why a person with CF experienced a delay in care was the cost of their copay. Further, nearly 70% 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 insulin will help mitigate some of the financial burden that accompanies managing cystic fibrosis and CFRD.
We urge you to support HB 1195 to help ensure access to prescription insulin for people living with CF. The Cystic Fibrosis Foundation appreciates your attention to this important issue for the CF community in Missouri.