The anti-Accutane crusade being waged in Congress by Rep. Bart Stupak (D-Mich.), and by a sensationalizing mainstream press--most recently in its coverage of the Charles Bishop incident in Florida--may well leave the impression that the acne drug's characteristics are all negative. But Rep. Stupak's hearings and the recent press stories have all left out one set of voices: the millions of Accutane users who have benefited from the drug. I've used Accutane: It completely changed my life.
As with many ailments, acne features a spectrum of conditions. The mildest type of acne comes in the form of a whitehead, and the most severe, a cystic strain consisting of a large, intensely painful nodule that, if left untreated, results in permanent scars. The common pink bumps, famous among teenagers everywhere, lie in between.
My own acne was fairly mild at first; I could even laugh at the problem. Acne, after all, isn't cancer, and many people don't consider it a disease at all. A lot of people (though not doctors) still erroneously blame the ailment on candy bars, fried foods, and poor hygienic habits -- instilling guilt in those whom it afflicts.
By the time I was 16, however, my condition had progressed to the most severe form, and it became the controlling factor in my life. I was so self-conscious about my problem that I actually isolated myself -- even sleeping during the day -- to avoid any social interaction. During this time, a dermatologist prescribed all sorts of medications, both pills and ointments. None of them worked. Finally, he recommended Accutane as a drug of last resort.
The doctor showed my parents and me various before-and-after photos of people who had taken the drug. Anyone unconvinced of Accutane's potency need merely glance at such images. I had never even seen cases this bad -- not even during the many hours I spent in my dermatologist's Upper East Side waiting room.
The drug wasn't without its annoyances. I had to go through blood tests once a month, and my lips became extremely chapped. Far more important to me, however, was that my acne disappeared completely. It was so miraculous a change that for the most part I have forgotten the poisonous role that acne once played in my life.
Accutane presently helps many people who have been suffering for long periods of time. Testifying recently before the House Government Reform Committee, Dr. David Pariser noted that 30 percent of acne cases progress into adulthood. If these individuals have anything like my own experience with the disease, they must be grateful indeed for a drug like Accutane.
Though Rep. Stupak's hearings featured a number of parents whose children committed suicide while using Accutane, the panel he organized lacked a single participant who described their experience with Accutane as positive, as most of its millions of user do. Without this element, no matter how much testimony was given by doctors who defended the drug against its attackers, legislators could not possibly understand the transforming role this medication can play in the lives of its users.
Proposals for regulating Accutane include the creation of a mandatory registry. Under this system, every doctor who wishes to prescribe the medication and all pharmacies that intend to stock the drug would be forced to register with the FDA. Currently the only drug regulated in this fashion is Thalidomide, a pill marketed in the 1960s to combat morning sickness that resulted in severe birth defects. (In 1998, the FDA approved Thalidomide for use in treating lesions associated with leprosy.)
According to Dr. Pariser, the heavy costs associated with the Thalidomide registry would mean that virtually no doctors in private practice would be able to prescribe the medication, and only about 7 percent of pharmacies would stock the drug. Proponents of such a registry note that Accutane, like Thalidomide, causes severe birth defects. The risk associated with Accutane, however, did not come as a surprise to its manufacturer; female patients are informed of the need to avoid pregnancy while taking the drug, and warned accordingly.
A number of other differences between Thalidomide and Accutane illustrate the especially damaging effect a registry would have on the acne medicine's otherwise helpless patients.
First, the number of people affected by acne is far greater than the number suffering leprosy -- Accutane is currently prescribed to 500,000 new patients annually. Second, 77 percent of dermatologists belonging to American Academy of Dermatology are solo practitioners or in an office with only two dermatologists. These people probably will not be able to afford, in most cases, the costs of joining a registry and will therefore not be permitted to prescribe the medication. A third concern cited by Dr. Pariser is his belief that a registry might stifle research into Accutane's ability to treat other diseases.
Accutane's opponents are determined, yet their success would deprive hundreds of thousands of the ability to control their appearance and indeed their health. Congress should bear in mind that any action it takes may well sentence thousands of people to permanent disfigurement.