May. 10, 2017
HARRISBURG – Today the House approved legislation with unanimous support sponsored by Rep. Marcy Toepel (R-Montgomery) to create a council charged with studying rare diseases in the Commonwealth.
“Research is largely concentrated on more widely diagnosed diseases, forcing Pennsylvanians who live with a rare disease and their family members to search for information on their own,” Toepel said. “This council would provide information that will be useful for patients, caregivers and other health care advocates.”
One in 10 Americans is diagnosed with one of 7,000 rare diseases, but the rare disease community has little information about treatment. Only about 200 rare diseases have a treatment approved by the Food and Drug Administration.
Within two years, the council must provide its first biennial comprehensive report regarding issues relating to management, monitoring and surveillance; education; detection; diagnosis; information and care regarding rare diseases in the Commonwealth, including the quality and cost effectiveness of care, access to treatment and other relevant services for individuals affected by rare diseases. All reports will be made available to the public.
The advisory council would consist of representatives from state agencies and the scientific community, as well as members of the health insurance and biopharmaceutical industries. Patients, caregivers, physicians and nurses would also be included.
The council would be required to meet at least three times each year.
As the bill passed the House, it now advances to the Senate for consideration.
Representative Marcy Toepel
147th District
Pennsylvania House of Representatives
Media Contact: Alison Evans
717.260.6206
aevans@pahousegop.com
RepToepel.com /
Facebook.com/RepToepel