WEST HARTFORD–On the wall next to his college diploma, Bob Mandelkern keeps the framed letter announcing his appointment to the state stem cell research advisory committee.
Next to that hangs a newspaper article about grants the committee awarded, with a quote from Mandelkern highlighted in yellow: “Without hope there is no quality of life. This committee has given people hope.”
Hope is what Mandelkern sees in embryonic stem cell research, a field that has the potential to explain and treat a wide range of diseases and conditions – including the Parkinson’s disease that afflicts him.
And it’s why Mandelkern chooses the words he does for a federal judge’s ruling that could put a wrench in embryonic stem cell research: Unwise. Unjust. Immoral.
Two scientists who work with adult stem cells filed the lawsuit, and Lamberth found that they would likely succeed in their claim that National Institutes of Health guidelines allowing embryonic stem cell research violate a law against using federal money for research in which human embryos are destroyed.
Stem cell researchers have puzzled over the implications of the injunction. Groups representing people who believe embryonic stem cell research destroys life have hailed the ruling, while the U.S. Department of Justice filed an appeal this week and is seeking to have the injunction stayed.
To Mandelkern, the ruling was the act of a judge imposing a minority opinion on the majority, a threat to work that gave people with incurable illnesses something to believe in.
“I feel that this decision has destroyed hope,” he said.
“The Aspirations of Sick People”
When you speak to patients about stem cells’ potential to someday treat diseases like Parkinson’s, as Mandelkern has, the discussions tend to begin the same way.
“The first question you get is ‘when?'” he said.
“There is no answer,” he added. “As Albert Einstein said, if we knew the answer, we wouldn’t call it research. Research means we don’t know the answer and we’re trying to find it, but we have hope that the solution is out there, given the funds and the time and not being chopped back each time by sectarian minority groups who insist on imposing their point of view on the majority and killing the hopes and the aspirations of sick people.”
Speaking about stem cell research, lobbying legislators and reviewing grant proposals has become something of a third career for Mandelkern.
Career one was 40 years in the wholesale diamond business, starting shortly after he left the Navy on his 21st birthday.
Years later, Mandelkern enrolled at Montclair State University in New Jersey to earn a degree in physical education. And, at age 65, he began career two, teaching exercise classes to seniors in nursing homes, assisted living facilities and daycare centers around his home in Hackensack.
He taught for 10 years, until his energy waned and the classes drained him. It was the beginning of what doctors would eventually diagnose as Parkinson’s. Mandelkern and his wife, June, moved to Connecticut, where their oldest son lived.
He had always been active, and so, with an incurable disease and no way to teach the classes he enjoyed, advocacy became the natural step, Mandelkern said, a way to try to ease the pain Parkinson’s gave him and others. He joined the Parkinson’s Advocacy Network, becoming its state coordinator, and learned about efforts to provide state funds for stem cell research at a time when federal funding for the work was restricted.
The Mandelkerns soon became fixtures in stem cell debates. Bob testified at legislative hearings and attended public health committee meetings, always accompanied by June, who also spoke out. They were there when the state Senate voted to devote $100 million over 10 years to fund stem cell research in 2005, and Bob sat next to Gov. M. Jodi Rell when she signed the bill into law.
He now sits on the committee that awards the grants. Since 2006, the state has funded nearly $50 million worth of research, work addressing diseases including leukemia, epilepsy and Parkinson’s.
The disease has made it difficult for Mandelkern to walk. He takes medication eight times a day and twice during the night. But he considers himself lucky that his is a slow-progressing case. The nervous system disorder can leave patients immobilized but their minds intact. Depression is common among Parkinson’s patients.
Mandelkern is adamant that the embryos used to derive embryonic stem cells are not life, but the potential for it. But studying embryonic stem cells, he believes, can provide insights into life.
“Basically, what embryonic stem cell research is in its purest form, to me, is unraveling the biological basis of life,” he said. “The mystery of life, how do we grow from a sperm and an egg, fertilized, to what we are now?”
Last year, Mandelkern figured the fight over embryonic stem cells was over. Less than two months after taking office, President Obama issued an executive order allowing NIH to support and conduct stem cell research.
He heard that clinical trials in humans for Parkinson’s were just around the corner.
“If they could just get a little more time and a little more money, Parkinson’s was one of the first diseases that they thought would go to clinical trials,” he said. “I was very hopeful.”
Then last week, June picked up The New York Times, with news of Lamberth’s ruling.
“You’ve got to sit down and start reading,” she told Bob.
In issuing the temporary injunction, Lamberth wrote that the NIH stem cell research guidelines would likely be found to violate the 1996 Dickey-Wicker Amendment, which prohibited the use of federal funds for research in which human embryos are destroyed.
The U.S. Department of Health and Human Services has held that embryonic stem cell research is not covered by that law because it is distinct from the act of deriving stem cells, which destroys an embryo. Lamberth disagreed, saying that since embryonic stem cell research requires stem cells to be derived from an embryo, it is research in which an embryo is destroyed.
Scientists are unsure what the injunction will mean – whether it will require a return to Bush administration policies, when federal money was barred from funding research on all but a small number of embryonic stem cell lines, or an even stricter prohibition on federal funds being used on any embryonic stem cells, or some other arrangement.
As he and the rest of the stem cell research community wait for answers, Mandelkern collects news clippings and keeps tabs on the research that could be interrupted. He spoke last week as part of a panel with stem cell scientists at Yale.
He tries to spread the word, doing what he can while he hopes for another court to rule differently.
“That’s what we have to see happen as soon as possible, so the research can go forward and people’s hopes can go forward,” Mandelkern said. “Otherwise, it’s pretty rotten to live with an incurable disease.”