Obama’s Bad Stem Cell Research Compromise

This particular issue is very important to me for the same reason, Alzheimer’s disease, as it is to Marion Roach who authored the article. The only difference is that it was my grandfather I took care of and watched slowly change before my very eyes. Who on bad days would get very stubborn, cantankerous, and decide to flush his medicine – which would then cause him to have Grand Mal Seizures.

It was a few years before the sale of the silver that I first wrote about us, in a 1983 magazine article that, impossible as it may seem now, introduced Alzheimer’s disease to millions of people who didn’t know what it was, including the seasoned magazine editor to whom I first pitched the story.

When I first wrote about Alzheimer’s, I searched out some of the best minds of the time, including Lewis Thomas, the great science writer, former dean of Yale Medical School and then-chancellor of the Memorial Sloan-Kettering Cancer Center. He called Alzheimer’s disease “the disease of the century” because, he said, “of all the health problems in the 20th century, this one is the worst.”

That quote got people’s attention, as did the words “angry, incompetent, hostile and incontinent,” which is how I described my mother. She was then 51, two years younger than I am now. I exposed her for who she had become in exchange for the attention I hoped the article might bring for her disease.

It is very difficult for the families who have a loved one that get this dreaded disease.  Your free time is no longer your own.  Starting at the age of 18, all my personal days and part of my vacation were used taking my grandfather to the hospital or sitting with him trying patiently to calm him down — to reason with him — because he was reliving an event that happened over 35 years ago.  Or, he wouldn’t take his medicine for his epilepsy because according to him, “he was fine and didn’t need it anymore.”    My grandmother would call me at work and I would rush over and help her time his seizures, if they lasted too long we would have to call the paramedics to take him immediately into the hospital.   If they stopped, that’s when the back-breaking task of moving him and changing him and the sheets would kick in.   My grandmother was very small and petite — it would take both of us to get him cleaned up and comfortable again.   When grandpa would wake up and realize what had happened — on a good day — he would apologize and get depressed about his actions.  This horrible disease would not allow him to think clearly.   It was truly heartbreaking, and I would reassure him it was no bother and grandma and I had a good visit.

My grandfather didn’t get a definitive diagnosis till 1984, a year after Marion’s article came out.  Back then, information was hard to come by to help us understand what was happening to him and if there was anything we could do to stop the progression.  I found her article during my research, it helped shed light on the many questions we had.

In the months and years that followed, congressional hearings were held, state task forces were convened and city committees were formed. Research dollars were allotted as well. But those were the 1980s, when Ronald Reagan was president, and despite the fact that embryonic stem cell research had been conducted in the U.S. since the middle of the 20th century, contributing to such wonders as vaccines for both rubella and polio, it was rebranded and became strongly associated with abortion. In the years that followed, despite the well-known fact that stem cell research was the most promising path to finding cures for Alzheimer’s, Parkinson’s, diabetes, multiple sclerosis and other diseases, this country allowed the personal beliefs of the antiabortion forces to become public policy. And that lasted a very long time.

The great art of political compromise is a fundamental part of our representative government. Deals are made in which one side cashes in some influence in order to move something along. This is what apparently happened last month, and shortly afterward, White House spokesman Reid Cherlin announced that President Obama had “directed [the National Institutes of Health] to formulate the best method for moving forward with stem cell research, both ethically and scientifically.”

In his grand exchange, the president traded away an essential piece of what he had only recently said he believed. When he campaigned, Obama said he supported the “therapeutic cloning of stem cells.” But as president, he has already traded that position for one that some see as more politically realistic. Under the compromise plan, the president proposed that federal dollars be allowed to pay only for research on stem cell lines created from surplus fertility clinic embryos, but that funds continue to be barred from stem cell lines created in the laboratory to study particular diseases. Also barred is financial support for creating new, genetically matched stem cells for use in the treatment of disease. That is the very “therapeutic cloning” research that the president supported during his campaign.

I understand the value of a good trade, but I don’t see what makes this one worthwhile. Every American, everybody everywhere, ought to support all possible efforts to find a cure for Alzheimer’s disease. My mother was one of 4.5 million Americans with it; today there are 5.3 million, and by 2050, experts project 16 million American Alzheimer’s patients, a surge that can be attributed partly to longer life spans and partly to increased diagnosis. Worldwide, 26.6 million people have it, with a mid-century surge expected to reach 100 million.

My family paid for home care with an exchange of goods; Medicaid paid for the next eight years of care in the nursing home, where my mother died at 64. Today, out-of-pocket costs for families caring for those with Alzheimer’s and the other dementias are triple what they are for other illnesses, and the yearly cost to the U.S economy is now at $148 billion. Every 70 seconds, someone develops the disease.

Right now, the NIH is formulating the research guidelines for the new stem cell policy and has opened a 30-day public comment period.

Here are mine: Not all trades are equal. Sell your stuff? That’s easy. But never hock your values. You can’t get those back a piece at a time.

Reading her second article on this topic — it has now been 18 years since my grandfather passed away — it makes me angry that other families will continue to suffer and bear a burden that could have been solved if “cloning” research had been allowed  back in the 1980′s.  This is senseless and Marion is right, “There really is nothing to lose.”

I applaud her for bringing this disease to the forefront back then, it helped me understand so much.  As she stated, “Never hock your values.”  Make choices based on what you believe is right, and not what others believe or is politically expedient.

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