July 31, 2001
A CONVERSATION WITH / ROCK BRYNNER
By CLAUDIA DREIFUS
Rock Brynner, 54, historian, writer, former road manager for The Band and for Bob Dylan and son of the late actor Yul Brynner, knows both sides of the story of the drug thalidomide.
Taken by to pregnant women in Europe and Canada for morning sickness and as a sedative during the 1950's and 60's, thalidomide caused thousands of birth defects. But in recent years, doctors have begun finding important new uses for the drug.
In 1998, after suffering for five years from a rare immune disorder, pyoderma gangrenosum, Rock Brynner took thalidomide and went into remission. With Dr. Trent Stephens, he wrote "Dark Remedy" (Perseus, $26), published this year, a history of thalidomide.
"I didn't write the book because
I had taken thalidomide," Mr. Brynner said over coffee on a recent morning
in a Manhattan loft. He looks and sounds very much like his famous father.
"I did it as a historian because this was a story that needed telling."
Q. Why did you take thalidomide?
A. I was fighting for my life, as almost everyone who comes to thalidomide is. Everything else paled beside that. In the film version of Dostoyevsky's "Brothers Karamazov," Dmitri Karamazov wakes a pawnbroker, who says to him, "It's late."
To which Dmitri answers, "For one who comes to a pawnbroker, it is always late." Well, I was at the pawnbroker's, and it was late. For five years, I had battled a mysterious, rare disease, pyoderma gangrenosum, where huge wounds on my legs kept growing larger and wouldn't heal. I had taken, at different times, cortisone, methotrexate, cyclosporine; none worked for long.
My immune system was tearing up my skin anywhere I had a wound. Thinking practically, I was planning to end my life because, if we couldn't stop this, all my skin would be eaten away.
Then my dermatologist mentioned anecdotal reports from Europe that thalidomide had been effective with pyoderma. I went to the medical library and read all I could.
The rationale made sense: I had this
autoimmune condition, in which one immune element, T.N.F.-alpha, was running
amok in me for reasons unknown. Thalidomide represses that T.N.F.-alpha
response. Fortunately, thalidomide did work for me.
Q. Former Congresswoman Geraldine Ferraro recently said she had taken thalidomide for multiple myeloma, a blood cancer. Was it a good idea for her to announce that?
A. What she said was: "Thank God for thalidomide!" And it was a very good thing that she went public. It notifies the medical community at large that this is available. Her experience is typical of many multiple myeloma patients.
Q. How old were you when you first
heard the word "thalidomide?"
A. I was 15 when the original epidemic became public. If you were young in that time, the word is uniquely horrifying. The photographs of limbless infants in Europe, where the drug had been distributed, looked like nature gone awry in a unique way. To see one baby like that was shocking. But to see photographs of two or three was devastating.
As a historian, I look at thalidomide in its context. The 1950's were a time of unquestioning infatuation with science. Science and technology had defeated the fascist threat. In the cold war, science was seen as protecting our lives.
The thalidomide scandal exposed us
for the first time to the idea that powerful medicines can destroy lives
and deform babies. Before that, medical folklore held that nothing injurious
could cross the placenta.
Q. Where was thalidomide developed, and for what purpose?
A. It does have an astounding history, beginning in postwar Germany. There, an ex- Nazi officer, Dr. Heinrich Mückter, formerly in charge of virus research in wartime Krakow, Poland, got a job running a German corporation's, Chemie Grünenthal's, research program. When his department produced thalidomide, they hoped it was an antibiotic or antihistamine. It wasn't. So it became "a drug in search of a disease." Then they found it had a strong sedative effect in humans, though not in test animals. Instead of testing it in humans, they gave out free samples across Germany. Thalidomide was introduced in 1957 as the first over-the-counter sedative, and within two years its sales were second only to aspirin in some countries because, 10 years after the nighttime bombings of World War II, many Europeans still had trouble sleeping.
Thalidomide was never approved as
a sedative in the United States because of the heroic work of Dr. Frances
Kelsey of the Food and Drug Administration who, in 1961, blocked its distribution.
If she hadn't acted, there would have been thousands of American babies
born, as there were in Europe, without limbs.
Q. The most amazing point one finds in your book "Dark Remedy" is that despite all the deformed babies, thalidomide never really disappeared. Why was that?
A. Soon after the connection was made between the birth defects and thalidomide, a physician treating lepers in Jerusalem, Dr. Jacob Sheskin, had a patient who'd gone months without sleep, despite taking every existing sedative. When Sheskin gave him old tablets of thalidomide, the patient slept perfectly for the next week, and his worst wounds were healed.
Sheskin, a Lithuanian Jew, had to
go to Mückter, the former Nazi military researcher, to obtain thalidomide.
He then did meticulous testing and came back with the astonishing news
that it was effective in 95 percent of patients suffering from leprosy.
It was later also used for treating AIDS, until more useful drugs were
developed. Right now, thalidomide is being tested for more than a hundred
cancers and autoimmune diseases.
Q. Given its history and associations, can thalidomide get a fair hearing?
A. In some countries, perhaps not. In England today, there is virtually no use of it. Thalidomide is still such an emotional issue because so many deformed babies were born there. People just can't imagine it. One reason it could be brought into use in the U.S. for AIDS and myeloma was because we didn't experience the horror of it here in the 1950's and 1960's.
Q. What is being done now in America to prevent thalidomide from causing birth defects?
A. There are a lot of safeguards in place now — a thalidomide distribution system called Steps requires that before a patient is given the substance he or she must be thoroughly counseled about the danger of birth defects. They must watch, as I did, a videotape of a thalidomide victim talking about the importance of avoiding pregnancy while taking the drug. Women must undergo pregnancy testing before, during and after treatment. Male patients must use two forms of barrier birth control.
Q. What about the fear that once you get thalidomide approved for very specific illnesses, it's bound to be used more casually?
A. Well, treating multiple myeloma, which Geraldine Ferraro is fighting, is an unapproved use. In the United States, it has only been approved for leprosy.
Most importantly, the drug cannot
be promoted for unapproved uses, not even with peer-reviewed articles.
Doctors aren't encouraged to attempt new uses. After 30,000 uses to date
in the U.S., there has not been one reported case of fetal exposure.
Q. A personal question. You are the son of Yul Brynner. As I was reading your book, I wondered if it was difficult to form an identity that was clearly your own.
A. Well, I've had a separate identity for some time now. At one time or another I've written and starred in a one-man show on Broadway, earned an M.A. in philosophy and a Ph.D. in history, was bodyguard to Muhammad Ali, road manager for The Band and Bob Dylan and computer programmer for Bank of America.
I've also written six books. My latest, about the subjective experience of time, is going out to a handful of publishers next month. These interests were all driven by my voracious curiosity more than a search for identity.
Yes, it's difficult for the children of iconic figures to establish independent identities. But with all the suffering in this world, I wouldn't shed too many tears for those who had privileged youths.
I had wonderful parents, especially
through childhood. Later on, they both went a little crazy at times.
Q. Back to thalidomide. Do you think the drug needs a kind of image makeover?
A. I am no advocate for thalidomide. And everyone involved with it shares the same dream: the final funeral of thalidomide. The real hope lies in the new drugs derived from it — analog drugs.
They are thousands of times more
effective and they do not cause birth defects. They are now in Phase 2
and Phase 3 testing.
Q. Do you think there will ever be a time when thalidomide stops being such a charged word?
A. No. Because of its threat, everyone is working hard to keep the threat of thalidomide well known, especially Randy Warren, a Canadian thalidomide victim.
He was the one who insisted that
a picture of a deformed baby be on every package, that patients be obliged
to watch a tape of a victim speaking and that the name never be changed
or disguised with a euphemism. First and foremost, thalidomide deforms
babies. Second, remarkably, it can save lives and diminish suffering. But
everyone is working to eliminate thalidomide. As long as it exists, there's
Copyright 2001 The New York Times
Copyright 2001 The New York Times Company