![]() The biggest incentive, however, is that the first drug company to receive FDA approval for a certain type of treatment gets market exclusivity. treats a condition that affects fewer than 200,000 people), the developer of that drug qualifies for special incentives, like subsidies for clinical trials. The Orphan Drug Act of 1983 mandated that when the FDA designates a proposed treatment as an “orphan drug” (e.g. The Orphan Drug Act passed the Senate, President Ronald Reagan signed it into law and, to this day, some activists think of the fake march on Washington as a real-life event.Ībbey Meyers went on to help start a new advocacy group, the National Organization for Rare Disorders, which she ran for more than 20 years. Meyers believes “there would not be an orphan drug act if it was not for that episode of Quincy.” Orphan Drugs Find a Home Shortly after this episode aired, the real-life senator caved as well. On the show, this march on Washington works immediately and the senator caves right away. Behind the scenes of the fake march on Washington from an episode of Quincy, M.E. These extras were all actual people with rare diseases and disabilities whom Meyers and her colleagues assembled. And just as the senator is proclaiming his opposition to the orphan drug bill, he looks out his window and sees hundreds of people demonstrating in the street, demanding for a solution to the problem of orphan drugs. In the climactic scene, Quincy confronts the senator in his D.C. In the final act, the character with Tourette’s gets a pep talk from Quincy and delivers a blockbuster speech at a congressional hearing. The episode basically pivots from a murder mystery to a policy drama. He lobbies pharmaceutical companies, the FDA, and congressmen. Quincy goes all-in on the orphan drugs issue. As it turns out, it was not exactly a murder, but by the time Quincy figures that out, he meets another young man with Tourette’s and gets obsessed with the problem of orphan drugs. In the resulting episode of Quincy, a teenager with Tourette’s dies under suspicious circumstances. Wynn Irwin (left) and Jack Klugman (right) and from the television series Quincy He was dying of bone cancer and the story of orphan drugs resonated with him. He happened to have a rare disease himself. ![]() It turned out this producer was Maurice Klugman, the brother of the show’s star, Jack Klugman, and he had a personal stake in the matter. Abbey Meyers was skeptical, but she realized the guy was telling the truth. It was kind of like a precursor to CSI.Īfter that little story in the Los Angeles Times came out, Meyers got a call from someone who said he was a producer on Quincy. In it, superstar Jack Klugman plays a medical examiner who used forensics to solve crimes. In the 1970s, there was a wildly popular television series called Quincy, M.E. This young man turned out to be a reporter for the Los Angeles Times, and he published a very short story article buried in the middle of the paper where nobody was likely to read it. “Nobody was there except in the very, very last row in the room,” says Meyers, “a young man was sitting there and I had no idea who he was.” Hardly any elected representatives showed up either. ![]() Unfortunately, nobody from the pharmaceutical industry showed up. Congressman Harry Waxman (left), Sharon Dobkin, Abbey Meyers (center), and Adam Seligman (right). This was their big chance to finally have a national audience and put pharmaceutical companies on the spot. So Meyers joined the Tourette Syndrome Association and decided she could help by lobbying and spreading awareness about this solution that was just out of reach.īy June of 1980, Meyers and her allies were able to get a California Congressman to hold a hearing about the problem of orphan drugs. Therefore, promising treatments, like the one that had been working for David, became “orphan drugs,” with no pharmaceutical company to raise them. They didn’t know how common or uncommon Tourette’s was, and they didn’t think selling a drug for it would be lucrative. The big money was in drugs with lots of customers, like blood-pressure medications. Meyers learned the hard way: drug companies weren’t interested in developing treatments for rare conditions. This is how Abbey Meyers learned a term would define the next few decades of her life: “ orphan drugs.” Since so little was known about Tourette’s, the drug company decided the market for Tourette syndrome wasn’t big enough and they just dropped the drug entirely. However, the drug didn’t test as well for treating schizophrenia, which was supposed to be its more common use. David got in on a clinical trial to possibly bring this drug to the United States, and it worked really well for him. It was a drug that was going to be marketed for schizophrenia but had been used in Europe for treating Tourette’s. ![]() ![]() Meyers found a specialist who said there was a possible treatment for Tourette’s. ![]()
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