Dear Honorable Governor DeWine:
On behalf of over 1,600 people living with cystic fibrosis (CF) in Ohio, we write to thank you for including funding for the Children and Youth with Special Health Needs Program (CYSCHN), formerly named the Children with Medical Handicaps Program, and Ohio Medicaid in the SFY 2024-2025 budget. These programs play a critical role in promoting the health and well-being of Ohioans with CF by filling gaps in coverage and helping ensure access to care and treatments.
About Cystic Fibrosis & the CF Foundation
Cystic fibrosis is a life-threatening genetic disease that affects close to 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. As a complex, multi-system condition, CF requires targeted, specialized treatment and medications. For those with CF, health care coverage is a necessity, and interruptions in coverage can lead to lapses in care, irreversible lung damage, and costly hospitalizations — compromising the health and well-being of those with the disease.
As the world’s leader in the search for a cure for CF and an organization dedicated to ensuring access to high-quality, specialized CF care, the Cystic Fibrosis Foundation accredits more than 130 care centers nationally, including 14 in Ohio, that provide multidisciplinary, specialized care in accordance with clinical practice guidelines. As experts in CF care, the CF Foundation and our care centers understand the need for access to adequate, affordable health coverage, including through programs like Medicaid and CYSHN.
CYSHN Program
We are grateful to see a $500,000 funding increase for the CYSHN program each year in the SFY 2024-2025 budget. CYSHN is a state program run by the Ohio Department of Health that serves as a safety net for children with special health care needs who meet medical and financial eligibility requirements. The program fills gaps in coverage related to the child’s special health condition and acts as a payer of last resort to help families access the services their child needs. CYSHN also provides services for people over age 21 with cystic fibrosis, including prescription medications, medical supplies, special formula, and public health nursing visits. While CYSHN is a resource for some patients enrolled in Medicaid, it also helps privately insured CF families with their out-of-pocket costs, allowing them to maintain their commercial insurance and sometimes diverting them from public coverage.
Ohio Medicaid
Medicaid is also a crucial source of coverage for people with CF, and we thank you for ensuring the SFY 2024-2025 budget preserves existing Medicaid funding, eligibility, and benefits. Over half of children and a third of adults living with CF in Ohio depend on Medicaid for some or all of their health care needs. Medicaid plays an important role in helping people with CF afford the specialized care and treatments they need to stay healthy and, for many with CF, it fills coverage gaps in private insurance that would otherwise leave patients with unsustainable out-of-pocket costs.
The CYSHN and Ohio Medicaid both play a critical role in promoting the health and well-being of Ohioans with CF. Thank you for funding these programs and for keeping the needs of people with CF in mind when forming the SFY 2024-2025 budget.