The proposed bill would amend current statutes related to the Childhood Cancer and Rare Childhood Disease Research Fund by establishing the Childhood Cancer and Rare Childhood Disease Research Commission. This new commission would consist of members appointed by the Director of the Department of Health Services (DHS), including survivors or caregivers of childhood cancer and rare diseases, health professionals, and a representative from a pediatric cancer advocacy organization. The bill also specifies that commission members will serve five-year terms, will not receive compensation, but can be reimbursed for expenses. Additionally, the commission will be responsible for establishing criteria for grant eligibility, overseeing the application process for research grants, and ensuring public access to meetings.

Furthermore, the bill introduces new funding requirements, stipulating that the DHS Director must allocate funds only if there are legislative appropriations or federal grants totaling at least $5,000,000. It allows for the use of grant funds in collaborative studies with out-of-state facilities and mandates that nonprofit organizations receiving these funds must use them for the specified purposes, even if combined with other funds. The bill also requires the commission to submit an annual report detailing grant distributions and research outcomes, enhancing transparency and accountability in the use of the fund.

Statutes affected:
Introduced Version: 36-121, 36-121.01, 28-2442, 35-190
House Engrossed Version: 36-121, 36-121.01, 28-2442, 35-190
Senate Engrossed Version: 36-121, 36-121.01, 28-2442, 35-190
Chaptered Version: 36-121, 36-121.01, 28-2442, 35-190