The Right to Try :A New Movement Aims to Make Experimental Drugs Available to the Terminally Ill By Amity Shlaes
http://www.nationalreview.com/node/377907/print
They have to share more.
That’s the general opinion about the rich these days, and it seems to apply in special force when it comes to a certain kind of rich: the rich involved in medical innovation. Sometimes the issue is simply tax revenues from admired companies. When, for example, Pfizer recently announced its plans to move to London to reduce its tax bill, brothers Representative Sander Levin (D., Mich.), and Senator Carl Levin (also D., Mich.) promptly joined forces to back new legislation that would force Pfizer to share its revenues by blocking the companies’ move.
The New York Times branded Pfizer’s move a “tax dodge,” a way of suggesting Pfizer’s behavior is sleazy. But of course the loss of tax revenues isn’t all that the resenters resent. They resent the wealth of the rich scientists, who care for their families with “concierge doctors” in special clinics no one else knows about. The critics also resent the loss of intellectual capital that occurs when the rich decamp — and that, legitimately. As President Obama pointed out when he created the Brain Initiative to keep science and science money stateside: “We can’t afford to miss these opportunities while the rest of the world races ahead.” But what if rich pharma did share? And what if it shared not only patented drugs but also something far more precious, its innovating brain?
That exhilarating possibility is the essence of a new state-by-state drive involving experimental drugs, “The Right to Try.”
Herewith, the basics. For decades now the Food and Drug Administration has maintained an onerous and slow approval process that delays the debut of new drugs for fatal diseases, sometimes for years longer than the life span of the patients desperate to try them. Attorneys and scholars at the Goldwater Institute of Arizona have crafted legislation for the states that would allow terminally ill patients to try experimental drugs for cancer or degenerative neurological diseases earlier. These “Right to Try” bills are so scripted that they overcome the usual objection to delivery of such experimental drugs: safety. Under “Right to Try,” only drugs that have passed the crucial Phase 1 of FDA testing could be prescribed, thereby reducing the possibility of Thalidomide repeat. Second, only patients determined to have terminal cases would be eligible to purchase the drugs, making it harder to maintain that the drug will jeopardize their lives.
Representatives in Colorado, Louisiana, and Missouri approved the “Right to Try” measure unanimously. Citizens of Arizona will vote on the effort to circumvent the FDA process this fall.
Why the popularity? The phrase “Right to Try” appeals especially in a nation that senses all too well the reductions in freedom that come as the Affordable Care Act is implemented. The recent success of The Dallas Buyers’ Club, a film about a man who procured experimental drugs for AIDS patients, also fuels the “Right to Try” impulse. Some of the popularity comes from our culture of choice. In Colorado, where citizens have choice about abortion, and now the choice to use marijuana, they may also get what seems an elemental choice, that to try to save their own lives.
But of course “Right to Try” also sails because of the frustration of tragedy. Years ago a man named Frank Burroughs founded the Abigail Alliance after conventional options failed to cure his 21-year-old daughter’s cancer. Abigail’s oncologist tried to get Abigail newer drugs, Erbitux or Iressa from AstraZeneca, the company with which Pfizer hopes to merge. But the drugs were not available in time to save the girl. The Abigail Alliance is attempting on the federal level what Goldwater is trying for states: The federal bill’s name is the Compassionate Care Act. “Those waiting for FDA decisions, mainly dying patients and those who care for them, view the agency as a barrier,” co-founder Steve Walker explained simply. And who can disagree? Many of the supporters of “Right to Try” or the Abigail Alliance are businesspeople or scientists who are motivated to honor ones they have lost to illness; others are racing to save sick family who are still living. Yet others labor for patients in particular or science in general.
And therein lies the legislation’s greatest fascination. It “harnesses,” to use an Obama verb, the energy of not just anyone but great talent. Talented minds do have souls, and nothing motivates many of them therefore more than helping out a sick family member. “Racing to Disease, Straight from the Heart,” as a reporter from the New York Times called this phenomenon.
Do wealthy people or scientists seek to cure their own families out of megalomania? Sometimes, sure. Talented people are vain. And when these grieving minds turn their energy, sorrow, and capital to developing new drugs or treatments, sometimes it ends in folly and quackery. But sometimes they manage an advance whose potential is downright astounding.
In any case: “Right to Try” captures the value of talent’s drive for the rest of us. Eventually, after all is well, a new drug that succeeds will go off-patent, or will trigger other innovations. Neuralstem CEO I. Richard Garr is leading his company in developing an innovative treatment for Amyotrophic Lateral Sclerosis, Lou Gehrig’s disease. By his own declaration Garr found motivation in the experience of his son Matt with a different illness, a brain tumor.
Even in the time of Affordable Care or the United Kingdom’s National Health Service, these new products will over the next years become available to people whom the executives who caused their creation have never met. With “Right to Try,” the very richest will not only share more, they will have more to share. If this scenario sounds unusual all one can say is: Perhaps it’s worth trying.
— Amity Shlaes chairs the board of the Calvin Coolidge Presidential Foundation.
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