Originally reported by Fox 17 Nashville, many Tennessee residents stress that a new tax reform bill will eliminate continued drug advancement and development for many rare diseases.
The House and Senate came to a deal that would say goodbye, or at least cut in half, the Orphan Drug Act’s tax credit, which currently funds drug research for rare diseases that affect more 30 million Americans. The Orphan Drug Act has been around since 1983 and has provided these Americans with over 500 drugs to the market.
Dr. Terry Bichell, a determined neuroscientist who works hard under the Orphan Drug Act as well as the National Organization for Rare Disorders, is voicing his concern for what could affect so many lives. Her mission is ultimately rooted from the Angelman syndrome diagnosis to Louie, her son and youngest child.
Angelman syndrome is a neurogenetic disorder that is diagnosed to 1 in 15,000 at birth. She was told that he would never function like a normal child; no talking, walking, eating or even potty training. So Dr. Bichell decided fighting was her only option. Because she’s a personally affected parent, she will stop at nothing to make changes. To learn more about Angelman syndrome, click here.
Dr. Bichell has made tons of progress and believes that since these genetic therapies and treatments have been successful in mice, they could possibly cure Angelman syndrome and Alzheimer’s. This exciting news has given so many Americans hope, but now that could all be lost.
Dr. Bichell expressed that the House and Senate need to look at what the real problem is and fix it. There are only a couple companies that have taken advantage of the tax credit and may have ruined it for everyone. It seems very unfair that one solvable aspect of the act should ruin the lives of so many others.
The National Organization for Rare Disorders also expressed the incredible need for the Orphan Drug tax credit. Without it, they risk a 33 percent decrease in the development of new therapies.
We all need to stand up, encourage Congress and fight to maintain the Orphan Drug Act and tax credit to help benefit millions of Americans in need today.
