HR 4638 / S 3267, the National Commission on Scleroderma and Fibrotic Diseases Act, 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.
Specifically, the Commission would be tasked with:
- Studying the incidence, duration, and mortality rates of fibrotic diseases;
- Evaluating facilities and resources used for diagnosis and treatment of fibrotic diseases;
- Developing a plan for the use of federal resources to advance research of fibrotic diseases;
- Making recommendations to the NIH and Congress with respect to the research 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 of various Institutes with an active fibrotic disease research portfolio or their designees;
- Additional members with expertise in the field of fibrotic diseases including scientists, physicians, patients, and advocates may be appointed by the Director of the NIH; and
- A chairperson, to be selected by the appointed members.
Finally, the Act specifies that the Commission will meet at least three times a year with the first meeting occurring on or before April 1, 2019. Additionally, the Commission will terminate 60 days after submitting the final report – to be submitted within two years of the Commission’s first meeting – and by September 30, 2022.