HR 3446, the National Commission on Scleroderma and Fibrotic Diseases Act of 2019, would establish a National Commission of Fibrotic Diseases within the National Institutes of Health (NIH). The Commission’s objective would be to improve the coordination and advancement of NIH research related to fibrotic diseases by using scleroderma as a prototypical condition. Fibrotic diseases, like scleroderma, are characterized by hardened skin due to the abnormal development of connective tissue referred to as fibrosis.
Specifically, the Commission would be tasked with:
- Studying the incidence, duration, and mortality rates of fibrotic diseases;
- Evaluating available resources for diagnosis and treatment of fibrotic diseases;
- Developing a plan for the use of federal resources to advance research of fibrotic diseases;
- Making appropriate recommendations to the NIH and Congress with respect to the study and long-range plan; and
- Submitting a final report containing all of the findings and recommendations.
The bill further specifies the appointment, regulation, and coordination of the Commission. As such, the Commission would consist of:
- The Director of the NIH, or the designee of such director;
- The Directors or their designees of various federal institutes and centers with an active fibrotic disease research portfolios;
- Twelve additional voting members with expertise in the field of fibrotic diseases such as scientists, physicians, patients, and advocates appointed by the Director of the NIH; and
- A chairperson elected from the twelve additional members by the members of the Commission.
Within three months after the first meeting, the Commission needs to submit an operating plan to the Director of NIH and Congress; within two years after the first meeting, it needs to submit a final report of all the findings. Within two months after the submission of the final report, the Commission needs to terminate by no later than September 30, 2023.