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Obama's Bad Stem Cell Compromise
Obama traded his word on stem cell research for a political deal, sacrificing 'therapeutic cloning' research necessary to help millions suffering from Alzheimer's, diabetes and other illnesses.
I just had a birthday, and to honor such occasions, my sister always gives me silver. Not just any silver: It's our parents' simple wedding flatware pattern, which Margaret collects for me, a piece at a time. Over the years that the slender boxes have appeared, I've wondered if any of it is from the full service for 12 that I pulled in a suitcase through Manhattan's Diamond District and sold one dreadful day 25 years ago.
It had been my assignment to sell it -- that, and a ring of Margaret's, one of mine and, right off our mother's finger, her engagement ring and platinum wedding band. The sum received was probably a quarter of their monetary worth, and nothing near their emotional value, but it financed two more weeks of home care for our mother, an Alzheimer's disease patient. After five years of caring for her at home, we had run through the family savings.
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. Tonight, HBO will begin a three-night series, produced by California's first lady, Maria Shriver, about a disease that now needs no introduction.
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.
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.
After the president issued his executive order, many scientists shrugged; it was, they said, the compromise they'd expected.
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.
Years ago, as my sister began giving me pieces of silver, there again were the long, flat knife handles that I had gently fingered during Thanksgiving dinners, the forks I balanced on the backs of my hands as my parents told stories, the spoons from which I had fed the dog under the table. There was a time when I thought that people were supposed to have silver and china and crystal, and I expected to have them, choosing them at the time of my own wedding. It seemed a tribal currency that was securely in the bank. Merely silver, perhaps, but to me it had been gold bullion, a representation of the standard below which you did not slip.
Then the situation changed, and the flatware would be counted among the least of our losses during that awful time.
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.
Marion Roach, who writes for thesisterproject.com, is based in New York.
13 Comments so far
Show AllHaving been a patient-advocate at one time, I ran into many cases of Alzheimer's - of which I was also unaware of until I saw the devastating effects first-hand. This disease is an abomination - it puts patients, staff, and family through pure unmitigated hell - and sometimes that hell can last a decade or more. Recently, people I know personally have suddenly developed symptoms, and I watched families disintegrate as the horror of Alzheimer's became apparent. Families are abused and battered, often for a long time, before incarceration - in a locked ward - is finally the only reasonable option. This is madness - insanity. And I cringe every time I remember those poor haunted frightened hostile people suffering from it. I don't kmow how the staff at institutions deal with it, other than becoming enured by the emotional shut-down necessary to care for such patients on a daily basis. Then that leads to abuse - hell, dealing with Alzheimer's is always an abusive situation, whether the patient is combative, or just screaming and/or cursing in madness. It's a horror we should all have to witness - for at least a week of constant exposure - before making any decisions about what we should do about this unspeakable horrific situation. Being in those wards is truly a traumatic experience for the unitiated - and it still is, for me. And I'm a pretty tough cookie.
Reading this powerful piece I feel a new rage. One word, "clone", drives a public discussion and prevents real debate.
Two years ago I was accepted into a research study in part financed by the Juvenile Diabetes Research Foundation. I received islet cells from a donor pancreas and within 2 weeks I was insulin free. I still carry glucose: the memory of hypoglycemia does not fade. I have to take anti rejection drugs which compromise my immune system. Last year I developed a lung infection strongly linked to immuno-suppression. There were days when I wanted to stop the drugs and go back to insulin, but I dreaded going back to low blood sugar even more. I will probably reject in time.
Had stem cell research allowed cloning decades ago perhaps I would be hosting my own DNA today. Equally good, perhaps diabetes stem cell reseach would have shown the way for Alzheimer's, or MS, or any other chronic miserable diesease. There really is not anything to lose.
I will search for the NIH public comment forum.
Ms. Roach, happy birthday, happy mother's day.
For five years I cared for my mother when we learned her mind was going. At first she was still "Mom" and able to do some of the things she'd always done. I was with her 24/7 and had a front row seat to seeing her become an empty shell that looked like my mother and sounded like my mother, but my mother was gone. Near the end of the fourth year, she'd forgotten how to eat, and would start trying to eat the food before her like the animals do. Sometimes she'd remember something for a short time. One day it was the death of my father. He'd been in a nursing home to get back on his feet so he could go home. He got pneumonia and the next day while Mom waited in the hall while the doctor examined him, he'd died. She was devastated then, and just as devastated when the memory of it came back to her as if it had just happened. She was never a violent person, and except for the "monthly" spells that last close to a week, was mostly happy and contented. Her spells were hell for both of us. She thought her food was poison, she thought her home was somewhere else and I was keeping her prisoner, and she couldn't stop trying to find the way out so she could go home. She'd sit for a minute and be up again. She'd end up crying because her back was hurting so bad from all the up and down and walking. It was as if something possessed her and refused to let her rest. I told everyone in those years that Alzheimers was the worst disease on the earth. For many years after I'd had to put her in a nursing home when she accidently fell and broke her hip while I was out of the room for a moment, I had serious flashbacks that just about did me in.
In the past year my two surviving sisters have gone into nursing homes with the disease. One is only two years older than me, the other six years. Will I get it? Will my brother? Only time will tell.
I wanted to express pride in my sister, Marion Roach, who in addition to her writing and lecturing has lobbied for many decades for improved long-term care legislation in Washington and in our state capital, Albany, NY.
As commenter sansf says, "there really is not anything to lose" by pushing ahead in this important, life-saving (and family-saving) research.
Thanks to Common Dreams for showcasing this article.
As a European, and as such resident in a civilised country where people get treatment on a basis of need, you have my deepest sympathy.
Does anyone really believe the neo-malthusians who rule us want to cure diseases and have folks live longer?.
You read the articles here on sustainability, overpopulation, resource shortages, global warming and alarmists predictions we are all going to die unless we go back to living like those in the dark ages and reduce our carbon footprint. Thats why they won't give you single payer health care, if you can't afford health care, you die earlier. It's not that complicated.
It's all BS, but if you believe in the message of these articles, then how can you be surpised about the lack of stem cell research or single payer health care.
"it is all BS" is one way to accept doing nothing. As your paragraph 2 conditions worsen, those in control will face extinction too.
So why not contact NIH? There are people in science, medicine, education, advocacy, etc., who are pushing hard for all stem cell research. That mid century 100 million statistic will include pharma CEOs, bankers, senators, a lot of powerful people and their families.
Public comment ends on May 26. 2009. Here is the NIH URL:
http://grants.nih.gov/grants/guide/notice-files/not-od-09-086.html
When Obama botched the abortion debate last year back in July, I had sensed that he'd back pedal even on the most sensitive social issues. Obama doesn't support single payer healthcare so his very bad compromise on stem cell research isn't too surprising. At the rate he's going, we might as well be stuck with the GOP if not give 3rd parties a chance to govern for a change.
Kudos, Marion, for a beautifully written and persuasive argument for political sanity when it comes to supporting good science.
My mother too died of Alzheimer's. as did my wife's mother. So I greatly appreciate this excellent article.
But it needs to be emphasized that many common diseases besides Alzheimer's would benefit from full blown research. These other diseases got somewhat buried in the article. They include Parkinson's Disease, multiple sclerosis, diabetes, and cancers such as leukemia, lymphoma, and multiple myeloma.
And I worry more and more about Obama's tendency to compromise.
Sioux Rose
Sympathy to all those who have had family members succumb to this disease. Since it has not been mentioned, the holistic field has linked the use of aluminum and/or no stick pans with this disorder. It may only be a casual as opposed to causal link, but there are lots of toxic exposures that are taken for granted in everyday life, and they are breaking peoples' systems down.
In the film, "Lorenzo's Oil" a family realizes that the medical field will not put research money into a disorder that's quite rare. The mother begins a quest for a cure and actually does figure out what led to her child's premature death. It involved a missing enzyme in his system. A specific oil supplied that enzyme. Much of medical research is oriented towards finding some chemical answer, whereas sometimes what causes the disease is a missing NUTRIENT or an aspect of lifestyle that's noxious.
There are quite a few books on curing diseases by turning to a fully holistic diet that involves NO meat or dairy or sugar or caffeinated products. I'd rather take that disciplined route than succumb to U.S. medicine which, also under Mars rules, tends to treat the body like the enemy and burn, cut, or poison away "the offending" tissue. The holistic view is that by assisting the body in its innate healing capacities through optimal diet and lifestyle changes, these more violent measures can be avoided.
Note, too, the IMPOSSIBLE recent increase in autism rates and the forced immunization program that uses so many murky drugs before a child's own immune system has had a chance to kick in. It is absolutely criminal!
Our for profit medical system will never demand a cure, when popping pills for maintenance is so profitable. We're not patients, we're cash cows, and if you can't pay you die. "free market" don'cha know.
What policies would you pursue if your outcome was to reduce the majority population to penury and to generate human die-back? Would you pursue policies to build a healthy, educated, long lived society with job stability and pensions?
No, I didn't think so. That's all right, we're rugged individuals who can achieve beyond any limitations, who can dream the impossible dream. Don't need no stinking health care. The sick should die quick and if they don't we should help them along, right? Feral Bestiality.
The measure of a society is their behavior in the presence of vulnerability. How's your killer instinct?