Stem Cell research, Insurance problems

An email I wrote to Stacy and Scooter who are the weekday morning hosts of KLSD AM 1360.
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Dear Stacy and Scooter,
Thanks you for discussing stem cell research on the radio today.

And thank you Scooter for talking with me off air. You asked what you could do for us. You even offered money. Thank you for the offer. Your offer was very compassionate, but unless I had enough money to fund the research that is needed, money will not help.

You two have a megaphone that those of us who are sick do not have. Use that megaphone to:
(1) promote all forms stem cell research,
(2) answer all the right wing talking points on stem cell research
(3) losen up the tight regulations that the FDA has in place that are slowing revolutionary new cures for people.
(4) advocate for universal health care.

Promote all forms of stem cell research—embryonic, fetal and adult. No matter the stem cell source, cures could be found. The fewer restrictions on research the sooner Star Trek like cures would be available to all.

A word on fetal cell research, my wife miscarried between our two sons. If some of the cells from that child (fetus) could have been used for a cure, we would have donated them. It is compassionate to donate organs, right? Why not fetal cells?

Up to six weeks or so a mammal fetus has no immune system. For some unknown reason this allows fetal cells to be transplanted to any other member of a species with no rejection whatsoever. In fact early mammal fetal cells can be transplanted into virtually any other different mammal species with no rejection.

Researchers at Washington University in St. Louis took primordial kidney tissue from pig fetuses and transferred it into rat abdomens. In the rat abdomen, the tissue developed into tiny rat sized kidneys (made of pig tissue) that filtered the rat’s blood and put out urine. This experiment was done over three years ago! Other similar experiments have been done with other mammal fetal cells as well and even earlier. http://www.childrenshospital.org/newsroom/Site1339/mainpageS1339P1sublevel70.html

Think how many dialysis patients have died in the last three years. How many could have been saved if my middle child’s primordial kidney fetal cells could have been transplanted into those patients! My wife and I would have felt better as well somehow part of our child was still alive. Of course her miscarriage was twenty six years ago, those fetal cells are long gone. But why not use fetal cells from others today who miscarry.

(2) Answer all right wing talking points. Embryonic stem cell research must be done because currently only ESC’s can divide indefinitely. A researcher can grow as many as he/she needs, for as long as he/she needs.

Adult stem cell are genetically limited to as few as seven division and then they are done and they die.

Eventually research on ESCs will yield information on how to get adult stem cells to continue to divide but until the research is done adult stem cell lab work is limited by numbers and by the amount of time a line of adult stem cells can be kept alive.

Another point on adult stem cell research, one of the CON talking points is that there are seventy cures for adult stem cells none for embryonic. The adult stem cell cures they are talking about are mostly bone marrow transplants that happen to have a few blood and immune forming stem cells in and among the bone marrow.

Bone marrow transplants have been done for more than thirty years, only five or six years ago researchers discover that there were a few blood and immune forming stem cells (hematopoietic) in among the rest of the bone marrow. The CONS immediately started mis-labeling bone marrow transplants as adult stem cell cures. The seventy adult stem cures are not new. It is old technology given a new name by the CONS.

The second CON talking point is that ESCs treatments cause cancer. True there have been problems with early experiments with undifferentiated ESC’s but now that researchers have discovered some of the cues for differentiating the ESC’s, the problem is closed to being solved. Besides the idea was never to use ESC directly to cure patients, it was to understand them and their differentiation process. Once the process is well understood, cures using any kind of cell would come.

[The differentiation process takes one fertilized egg cell and makes every tissue and organ in an adult human. Researchers are now at the very beginning of learning how that process works. ESC’s are crucial for understanding it. Star Trek type cures will happen when researchers fully understand it.]

(3) Advocate for the loosening up of FDA regulations
Right now there are forty revolutionary therapies, virtual cures and full blown complete cures for autoimmune disease in mice. Only a couple are currently in human trials.

Each set of human clinical trials is estimated to cost one billion dollars under current FDA guidelines. Due to the cost risk exposure, Big Pharma sets draconian exclusion criteria for clinical trials to try to eliminate the sickest patients.

If they allow all patients to try new therapies, some of the sickest will have adverse reactions or die. Their deaths or reactions must be reported to FDA. The deaths or reactions are counted against the company when they apply for FDA approval to sell the new medicine or therapy. A billion dollars in clinical trials could be lost if too many of the sickest patients die. (Not that they weren’t going to die of their diseases anyway.)

We need Blind Compassionate Use FDA regulations. Negative results for any Compassionate Use patient who failed to qualify for the trial due to exclusion criteria should be blinded. The results should have no bearing on FDA approval process.

(4) Advocate for transferable universal health insurance. When my autoimmune disease worsened, I had to quit work. No work, no medical insurance. There are no private insurance companies that would now insure me with a pre-existing condition. My son was a brilliant student. He worked hard at school. He had scholarships and jobs which fully paid for his first two years in college. He never got in any trouble (not one bad report in his entire scholastic career). Suddenly he is hit with a genetic time bomb. He cannot work. He cannot get health insurance. Medications costs thousands of dollars a month.

If my wife could not work, we would have no insurance whatsoever. How would we pay the $3000 a month for his medications? As it is now, because he is only covered by one parent, we have to pay between $3-5,000 a year more than if I still had health insurance. On top of the forty thousand dollar a year hit we take in the difference between my disability pay and what my working salary would be.

Every year in October when health insurance is renewed we have to worry will he still be covered as a disabled dependent? How much more will “our contribution” to his health care be this year? Every year the rules change unilaterally and we have to “contribute” more.