A note to readers: This piece was written in July 1998. I came across it as I was blogging about the notion of regret. What could be more compelling than the regrets of those who both administered and ingested thalidomide to control something as benign as morning sickness? Who knew? Thalidomide is still being used today primarily in the treatment of certain cancers.
My summer job in 1971 was at The Rusk Institute for Rehabilitation in New York City. They assigned me to children's recreational therapy on the fifth floor -- assisting them to read and walk, and play. On my first day on the ward, I was assigned to Lynette, a beautiful, delicate, bright little girl with hair braided perfectly in rows and dotted with bows. She looked like a ballerina -- if not for the fact that her arms did not exist and were, instead, flippers on her shoulders.
"Want to play checkers?" she asked.
And so we did -- she moving the plastic disks nimbly with her toes -- more nimbly, in fact, than I did with my shaking fingers.
Then there was Sarah whose head was too heavy for her to hold. She had hydrocephaly. Her hands were curiously small, and where fingers weren't missing, they were curled helplessly and hopelessly. At least a dozen times during the day, Sarah asked, "What's your name, Stephanie?" And each time I answered, as she groped for my hand, then lowered her heavy head even more, and walked away.
Lynette and Sarah were what the doctors called "thalidomide babies." There were other thalidomide babies on the floor, all around 10 years old, mostly limbless or with limbs that were profoundly deformed. There was a large room that housed prosthetics -- plastic and metal arms and legs hung from rafters like meat in a butcher's freezer. The children awaited surgeries that would substitute their claw-like hands and absent extremities so they could manipulate checkers without using toes, or stand upright instead of hurtling themselves down the hallways like a ball.
My mother feared for my emotional balance as I worked at Rusk that summer. One time I saw my father appear in the doorway as I played checkers with Lynette, and he was crying.
In 1960, thalidomide was promoted as a cure for morning sickness. In 1962, it was pulled from pharmacy shelves since 12,000 babies were born worldwide with gross deformities. And now, we find the drug rearing its head again for use in therapies for patients with AIDS, cancer, and other autoimmune disorders.
In 1991, Gilla Kaplan, a scientist at Rockefeller University, discovered that thalidomide could regulate immune response by suppressing a protein called tumor necrosis factor alpha. Scientists at Celgene Corporation, manufacturers of the drug, had been investigating thalidomide for use in AIDS patients while other companies were researching the drug for efficacy in treating macular degeneration (a condition that results in blindness), other immune disorders, and cancers. In the 1960's, an Israeli doctor gave thalidomide to leprosy patients as a soporific, and found the patients were not only able to sleep, but miraculously their lesions cleared up overnight. In fact, thalidomide never disappeared, and has been available on the black market since the 1960's with AIDS and cancer patients turning to it as a last resort.
Randy Warren is a 36-year-old "thalidomider." He is also founder of The Thalidomide Victims Association of Canada and asks the question, "Is the world ready for another generation of thalidomiders?"
Writer Sheryl Gay Stolberg has covered this topic relentlessly in The New York Times. She reports that Celgene and the FDA believe they can achieve their goal of "no birth defects." Cancer patients including pre-menopausal women with breast cancer (who may have children at home) are obvious recipients with obvious risks. Celgene promises that doctors will work diligently with the pharmaceutical company and that all women of child-bearing age will be required to use two forms of birth control and be required to undergo monthly pregnancy tests in order to avoid any "thalidomide accidents."
Some patients today call thalidomide a "miracle" in terms of remission and what is perceived cure. Some doctors refuse to administer the drug to fertile women in favor of protecting unborn children. Certain women's advocacy groups contend this discriminates against women's entitlement to the same medical treatment as men. Barbara Glesser, a professor of clinical neurology at University of Arizona Health Sciences Center wrote a letter to The New York Times in September 1997 stating that 75% of those suffering from auto-immune diseases are pre-menopausal women.
"The patients who may receive the greatest benefit from thalidomide are also those at most risk for its notorious side effect," wrote Glesser.
For Randy Warren and the 5,000 survivors of thalidomide, the drug is pure poison. They even want a skull and crossbones placed on the label.
Some say the reason for a ban would be purely emotional, based upon bad memories. These are the same people who contend that we can benefit from what know now and use the drug carefully so a generation of thalidomide babies doesn't happen again. They feel that what happened before was a "mistake" and that the benefits of thalidomide in an austerely controlled program clearly outweigh the risks. Others fear malformations are inevitable.
As I look back, I realize that when I was 18 and working at Rusk, I did not fully fathom the extent of thalidomide's ravaging effects. Yes, I saw Lynette and Sarah -- but I didn't "get it" in terms of their parents, grandparents, siblings who came to visit. With each baby born to me in my 30's, I counted fingers and toes and marveled at the redness of their faces with each cry. Now I read the endless diatribes about the re- release of thalidomide, and I shudder as I recall the children on that floor. "Only one more" thalidomide baby would be one too many. And I think of the AIDS and cancer patients for whom thalidomide is the last bastion of hope. And suddenly, the definition of "moral dilemma" hits me.