Dear Chairman Buenaventura and Members of the Committee on Health and Human Services:
On behalf of the people living with cystic fibrosis in Hawaii, we are writing to express our support for SB 838. As the cost of prescription insulin and other diabetic supplies have 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. SB 838 would require coverage for continuous glucose monitoring devices (CGMs) and other diabetic supplies like test strips and sensors. We urge you to support SB 838 to help ensure access to these vital supplies and equipment for people with cystic fibrosis-related diabetes (CFRD).
Cystic fibrosis and CF-related Diabetes
Cystic fibrosis is a life-threatening genetic disease that causes the body to produce thick, sticky mucus that clogs the lungs and digestive system, which can lead to serious infections in the lungs and pancreatic insufficiency. CF requires an intensive daily treatment regimen to address its many manifestations and 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 disease’s progressive nature, 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, treatment for CFRD relies on insulin and additional supplies such as continuous glucose monitors, test strips, insulin pens, syringes or needles, lancets, and alcohol swabs.
Access Issues Associated with CFRD
Those living with CFRD who do not have consistent access to insulin or accompanying supplies, like CGMs, may be unable to properly manage their blood sugar levels, putting them at increased risk of irreversible damage, costly hospitalizations, and declining health outcomes. Barriers to this access often stem from inadequate insurance coverage; according to a 2024 study conducted by the Cystic Fibrosis Foundation and Dartmouth College, the top two reasons that people with CF faced a gap in their CF care in the past year were insurance denials and high copays. Further, nearly one in eight people with CF who use durable medical equipment — which can include CGMs and other diabetic supplies — reported that, in the last 12 months, they were financially unable to pay medical bills related to their equipment. Requiring coverage for CGMs, test strips, and other necessary diabetes supplies will help mitigate both coverage barriers and some of the financial burden that accompanies managing cystic fibrosis and CFRD.
We urge you to support SB 838 to help ensure access to CGMs, sensors, test strips and other diabetic supplies for people living with CF. Thank you for your attention to this important issue for the CF community in Hawaii.