Research on humans: Anger, but no apologies

Yusef Anthony didn't realize he was signing his health away for good.

Even after 40 years, he suffers debilitating conditions from the skin-study experiments conducted on inmates at Holmesburg Prison. Like thousands of others, he had signed the release to be a human guinea pig - the one that, you know, absolved the University of Pennsylvania of any responsibility should something happen to him.

Anthony, only 64, may look a decade younger, but he has the body of a 91-year-old. Brittle bones. Rheumatoid arthritis. Skin so sensitive that he can't peel an orange without developing an agonizing internal itch that only scalding hot water will soothe. Migraine headaches that won't let up.

Meanwhile, unapologetic world-renowned dermatologist Albert Kligman, who directed the experiments while at Penn, sits in luxurious retirement on Rittenhouse Square. He's 91 years rich.

Anthony tells his story of horrific medical subjugation in Temple professor Allen M. Hornblum's new book, Sentenced to Science.

Born and bred in North Philadelphia. A life of petty crime, robbing and boosting to support his drug addiction. In and out of jail from 1964 to 1983.

And, most haunting, his life as a lab rat while at Holmesburg, from 1964 to 1966. The period when Penn, like other institutions elsewhere, experimented on prisoners.

His story gives me chills.

Like Anthony, many of the inmates at Holmesburg were functional illiterates. He thought he was getting an easy test. After all, he knew guys who agreed to be injected with cancer cells, radiation, and mind-altering drugs. All he had to do was provide skin.

Our enterprising Dr. Kligman and company were testing a bubble bath to determine whether it infected open sores. Anthony would make $30 to $37 for a 21-day trial - survival money to ward off the sexual predators who lurked around every cell block, he says.

Ultimately, who knows which would have been worse?

After they opened wounds on his back, "they sprayed this chemical out of a can on my pores," Anthony recalled the other day. "I tasted it in my mouth. It made me sick to my stomach, that's how toxic it was.

"That stuff broke me out so bad - I had all these red bumps full of pus all over my body. My sister came to visit and she screamed when she saw me."

The burning pain in his back was so excruciating, he says, that he had to be taken off the trial. After three or four days "a doctor came and rubbed me down with vinegar and shot me with something - I think it was morphine, because I felt better right away."

That was the only time he saw a doctor, he says. Inmates in white lab coats handled the rest.

It reminds me of the notorious Tuskegee Study - between 1932 and 1972 - in which African American sharecroppers were test subjects for syphilis. They were never told of their diagnosis and were denied treatment, all to determine how the disease spread through their systems and whether they were better off without medical intervention. They were told only that they had "bad blood."

And we wonder why, even now, some black folk are so suspicious of doctors.

Hornblum initially exposed the horrors at Holmesburg in his 1998 book, Acres of Skin, the title derived from Kligman's comment, when he walked into the prison, that all he saw was "acres of skin."

As with Tuskegee, not only were the men not properly informed, "they were overwhelmingly black, poor, uneducated and unsophisticated," Hornblum said. "I always knew this was a recipe for disaster, a recipe for abuse."

Long before he came up with the formula for Retin-A, the hugely popular anti-wrinkle potion, Kligman had already made millions through research contracts with drug and pharmaceutical companies.

It was as if the Nuremberg Code for human experimentation never existed for Kligman. He took advantage of thousands in the most vulnerable populations: children living in homes for the mentally retarded, old folks in nursing homes, desperate prison inmates.

The truth is, Kligman, who was eventually banned from conducting human research, only to be reinstated, never met a clinical trial he didn't like.

Holmesburg stopped experiments in 1974. When I tried to reach Kligman, Penn told me he was conducting no more interviews. He won't talk about it. I guess not.

But there are plenty of people who want him held accountable. That includes the Holmesburg inmates, who filed a civil suit only to have it shot down because of the statute of limitations, and the doctors who unwittingly did some of Kligman's dirty work for him.

Dermatologist A. Bernard Ackerman, a giant in his field like Kligman, was a second-year resident with the doctor at the time. ("My subject was dandruff, which Kligman led me to believe was a disease.") Of those prison experiments and others, Ackerman said in a telephone interview today: "It was absolutely reprehensible on the part of the University of Pennsylvania never to take responsibility for this."

" . . . For [Penn] to say, even now, that there was nothing wrong with it, when it was, in fact, a crime against humanity. . . . To this day, they have refused to acknowledge what was done and have refused to apologize."

Penn isn't giving in. In an e-mail statement from a university spokesman, Penn insisted that it had done nothing wrong and that the use of "willing, compensated prisoners" for biomedical research was a commonly accepted practice by scientists.

The statement invited former inmates who felt "they may have sustained long-term harm" at Holmesburg prior to 1973 to "contact us for a free medical evaluation and follow-up care, as deemed appropriate."

It appears that Yusef Anthony, whose hands and feet once swelled like an elephant's and whose fingernails grew so hard and thick "that I had to use a wood saw to file them," should give Penn a call. You know, follow up.

And it's a good thing he's long out of the joint.

The federal government is now considering whether it should reinstate medical research in prisons.