NORD Applauds Senate for Legislation Vital to Helping Mesothelioma and All Rare Disease Patients Get Treatments More Quickly
The National Organization for Rare Disorders (NORD) last week praised the U.S. Senate for passing the Food and Drug Administration Safety & Innovation Act of 2012 (FDASIA). NORD touts FDASIA as “the most comprehensive improvements to public policy for rare disease therapies since the landmark Orphan Drug Act of 1983.” The legislation will benefit the nearly 30 million Americans with rare diseases, such as mesothelioma, AIDS and muscular dystrophy.
According to NORD, the bill will enhance the U.S. Food and Drug Administration’s regulatory process, will offer financial incentives to pharmaceutical companies willing to innovate for rare disease and will expand the medicines, equipment, and techniques needed to “bring the most cutting-edge therapies to patients as quickly as possible.”
“NORD has been working very hard over the past two years to ensure that the interests of the rare disease patient community are well represented in this important legislation,” said NORD President and CEO Peter L. Saltonstall. “We are thrilled that our nation’s leaders in Congress are working together and making substantive policy improvements to bring new therapies to patients who desperately need them.”
One critical provision in the legislation includes an initiative to further qualify and categorize biomarkers for use in clinical trial design. Recently mesothelioma researchers have made significant breakthroughs in the use of biomarkers and genetic therapy. This legislative support will enhance the process and offer valuable aid to scientists.
A disease is designated as an orphan disease when less than 200,000 Americans are affected by the disease at any given time. Mesothelioma is responsible for approximately 3,000 new cases of cancer each year in the United States. Although there is no cure for mesothelioma, it can be treated with varying degrees of success through the use of surgical procedures, chemotherapy and radiation.
NORD is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. NORD offers vital services to the public through providing information about diseases, referrals to patient organizations, research grants and fellowships and other critical services for those battling a rare disease.