Leading policy-makers and scholars explain how market forces, deregulation, and consumer choice can work to improve health care for all Americans.


40 Years Later, Still No Cure
Phyllis Richman, Washington Post, 3-7-07

Richman chronicles her struggles with Parkinson's disease, while also noting that new drug innovation is also affected by how vocal—and determined—patient disease groups are in putting pressure on industry and the FDA to approve new medicines.

A million doesn't put Parkinson's at the top of the disease hit parade. Nevertheless, this is an expensive disease, partly because people live with it for so long. On an individual scale, nursing care costs can be astronomical, and the newest brain surgery, in which a kind of Parkinson's pacemaker is implanted, can cost $100,000. On a national scale, the disease has been estimated to cost $5.6 billion a year, including treatment, disability pay and lost income. That figure is expected to climb steeply as baby boomers reach prime Parkinson's age.

Why have there been so few Parkinson's advancements since my grandmother's day? That moves us from the world of medicine to the world of politics, with a detour into the realm of consumerism.

With a mere million sufferers, Parkinson's is not worth the risk for pharmaceutical companies to sink big money into unexplored territory. There's a surer profit in developing another variation of a successful drug than in creating a new kind of drug, for which the clinical trials are not only apt to be more expensive, but the chance of failure runs higher and the approval process is likely to take longer. Thus, among the newest Parkinson's drugs, I can choose Mirapex or Requip, which serve the same purpose. Presented as a major accomplishment are levodopa pills that dissolve under the tongue, in case the patient has no water on hand. Quick-acting injectable drugs, and delivery by patch rather than by pill—those are today's breakthroughs. They are neat tricks, definitely useful, but I'd much rather be offered a wider range of treatments than a choice of brand names.

Of course, as a patient, I don't have much say in the matter. Or do I? If there is one person who will deserve credit when this disease is eventually cured, it will most likely be my fellow PWP Michael J. Fox. In seven years—since just about when my Parkinson's was diagnosed—he has raised so much money that, with matching grants and joint projects, he has directed $90 million worth of Parkinson's research. His public presence has brought Parkinson's great attention and a sympathetic response.

This is all true. But it is also unfortunate that new drug approvals for some disease groups take precedence over others that may be equally (or even more deserving) but not as well organized or funded.

The solution is not to prohibit advocacy—but to ensure that the drug approval process is streamlined to encourage faster and less expensive drug development for all new medicines.

Project FDA.
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