Why Paul must die.

Paul is my son. Three years ago today he was a healthy college senior. My main worry was that he spent way too much time socializing. I was worried about his studies. But it was hard for me to push the point as he only rarely got a grade of less than an A in any course. He had already finished three years of calculus and I had not made it through one in my time in college. He was athletic. He loved basketball, laser tag and dancing. He had a wonderful laugh and a great singing voice. He loved playing the keyboard. In September of his sophomore year, he met a girl. She was a reporter on the college newspaper. She talked him into joining the newspaper staff. Four months later he was editor of the paper. His college has a huge campus. So big that there are shuttles to ferry students between classes. Paul hated the shuttles. They were too slow. He preferred to run. My genes, I had been a high school and college (scholarship) cross country and track athlete. I was so proud of him.

Because of all the running he was doing on the hard surfaces of concrete sidewalks and stairs, I was not surprised to learn he had a sore knee. I thought it might be a sprain. I recommended he get a knee support and ride the shuttles for a while until it got better. Icing the knee wouldn’t be a bad idea either. I gave him my best runner advice. Stay off the hard surfaces (especially concrete) as much as possible. Find ways to run between classes where there was mostly grass and dirt. I had had enough running injuries to be confident that my advice would get him back to normal again in a couple of weeks.

It didn’t. After several weeks of limited walking and no running, of lots of ice and wearing the knee support every where, he was not better. His knee was worse. It hurt more than before. It was becoming swollen and felt hot to the touch. His other knee hurt, too. Even his shoulders were sore. I asked him what the heck he was doing to injur so many joints. I think I was a bit annoyed. Now we would have to send him to an orthopedic doctor. He must have torn a tendon or two with all his dancing and wild goings on.

I made an appointment with the best orthopedic surgeon in the area near Paul’s college. He was the one who treated all the athletic injuries on the sports teams on the campus. The first available appointment was after Christmas vacation in early January.

Paul came back home for Christmas and was acting all wimpy about his knees. But like a good father I did not say much. After all what could I say to my son except when you live the wild life injuries happen. He would learn to be more careful in the future.

Paul went back to school in early January and a week or so later, he saw the orthopedic surgeon. I remember he called after the appointment to tell his mother and I what the doctor said. I fully expected he would need knee surgery. I waited for Paul to tell me that. I wondered where the surgery would be. The cost. Would it be that new arthroscopic type where he would just have band aids on the entrance wounds afterwards?

“Dad the doctor thinks I have inflammatory arthritis”
“What? What did you say? What the heck is inflammatory arthritis? I have never heard of that before.”

“It’s like RA. You know rheumatoid arthritis.”

“No way. There is no one in our family with that. The doctor must be wrong.”

“He took fluid from my knee to have it tested. The test results will come back in a few days. It was a huge needle. He kept poking it in different places. It really hurt.” Turned out that my son’s type of inflammatory arthritis was psoriatic not rheumatoid. His first symptoms were the swollen knees only later did he get the skin lesions.

The nightmare had begun.
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Why dear God can’t I wake up? Please, please make these last two and a half years go away. Take me in my sleep. Don’t let me see any more. If you are the compassionate caring God, I learned about in my youth, end this. End it now. I worshipped you every Sunday and many Wednesday nights as well. I spent years as a Sunday School, Bible School teacher and as director of large Christian scouting program. I served on church boards as a church leader. I participated in semi-annual work projects and special projects at church. My son was an active member of Intervarsity Christian Fellowship at college. Our family attended Bible believing and Bible preaching churches in every town we lived in. For nine years in Porterville, California we attended the church pastored by James Dobson’s college tennis partner (Rev.Wil Spaite). James Dobson himself came to our church and preached and taught. Surely our family has done enough to earn some heavenly credit, right? Then let me die first. Please dear God, let me die first. I do not want to see my son suffer any more. I do not want to see him die.
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Here is a partial list of why science and cures now comes last in America. Below are rules regulations and the people who are responsible for them that would rather my son suffer and die then be cured.

(1) Stupid time consuming FDA rules and procedures

(2) Costly clinical testing of each and every named autoimmune disease one at a time instead of all at once. Almost all autoimmune diseases are caused by similar immune dysfunctions. It is likely that if one or two underlying factors were reversed virtually all forms of autoimmune disease could be cured. Yet the FDA insists one autoimmune disease at a time in clinical trials.

(3) Modern medicine held hostage to ninteenth century nomenclature based solely on location of the affected part rather than twenty first century immune cell and genetic dysfunctions. Let's quit naming diseases by what they affect instead name them by what is the root cause—genetics, lack of effective Tregs, over aggressive T effectors, B memory cell dysfunctions, etc.

(4) The "elephant man" reaction to new autoimmune drug in England last year has slowed the tortise like progress of the FDA to slower and more frustrating than a snail race.

(5) Jesse Gelsinger. He was a hero not a victim. Would he want his death to have slowed cures causing the deaths of thousands.

(6) Vast gulf between researchers and practitioners and between researchers and clinicians. This is called the bench and bedside divide. Translational medicine is term used by the FDA for bringing research results (bench) to patients (bedside). FDA wants to speed up the process so they have put in place a program to do that but the program actually adds paperwork and slows down the process.

(7) Researchers charging ahead to make discoveries, to claim credit and patents but no follow up to bring discoveries to patients. The US invents the VCR but want to charge tens of thousands of dollars for each so the Japanese simplify and rework VCR and translated the technology into something costing $40. Suddenly everyone had a VCR. The problem in translational medicine today is that there is no Japan to take the animals cures and turn them into humand cures.

(8) Translational problems—translating discoveries into medicines

(9) Do no harm today means take no chances. Protect your ass first and foremost.

(10) Physician “career investment” must be protected to hell with sick patients
Today’s physicians refusing to write off label prescriptions which were routine thirty years ago.

(11) A regulatory mess, a truly impassable morass to qualify a patient for compassionate use

(12) Bush administration money spent for death not for life—billions a month to kill in Iraq. Any one month of the Bush off budget spending in Iraq could fund a cure for most autoimmune disease in less than a year.

(13) Six years lost in stem cell research that could lead to human cellular models of disease thanks to Bush and his little god version of intolerant christianity.

(14) No embryonic research.

(15) No fetal research.

(16) James Dobson, Jerry Falwell--What they say is so is more important than what is actually so according to them and their followers. End of science and science investigation. The end of rational debate based on best evidence. The end of evidence. Next we won’t need detectives. Just decide who did it ahead of time and convict them regardless. That is the Neocon way. It is the old Soviet style. The way the Cardasians (Star Trek---Deep Space Nine) decide ahead of time who is guilty and what the punishment is before the trial and evidence is looked at. Bush, the Neocons and the little god Christians favorite form of decision making. Decide what the conclusion is before looking at any evidence. Then fit the evidence to the decision throwing out any contrary ideas.

(17) Frank Luntz chief propagandist for the Cons. They pay him to cloth their lies in respectability. He can turn any horror into a catchy slogan.

(18) Grover Norquist and The Club for Growth,

(19) Paul Gigot the editor of the Wall Street Journal.

(20) Roger Ailes and Rupert Murdock and all those who work for them and swallow their integrity to write propaganda pieces rather than news stories and segments.

(21) RepubliCON members of Congress who are Cons first Americans last. They end their vacations and all rush to Washington on a weekend to prolong the torture of a woman who had a water balloon for a brain but cannot find time to fund cures for her or any one else in America.

(22) The budget of the FDA did not increase this year (2006). Same as last year HUGE amounts of basic and translational research will not be done for another year. Another year of suffering and death for ordinary Americans. Cures kept from us again.

(23) Lack of funds to bring the latest technologies to pre-eminent college research facilities.

(24) Bush administration federal rules and regulations that force research centers to build whole new laboratories with parallel facilities and equipment to do stem cell research. If even one test tube crosses over all forms of federal funding including student loans can be shut off to the university. These are regulations put in place to hamper if not to down right shut down all embryonic stem cell research. Cons do not have the stones to do it directly so as usual they take the sneaky back door way while claiming to actually want stem cell cures.

UPDATE: Paul survived to near death episodes in July of 2007. His autoimmune condition froze his ribcage so that he could not expand it and he nearly suffocated twice. My wife and I sat with him through the night, wondering which would be his last breath. We got a new doctor "out of our plan" so my wife's insurance only covers 70% of all Paul's bills. The FOR PROFIT health care company decides what are usual and customary charges then pays only 70% of those costs which amounts to less than 50% of the phyician's charges.

The new doctor however is competent unlike the three we went to that were "in" our plan. He knew ALL the medicines. He put Paul on a new DMARD and a biologic. Paul is moving more now. He is still alive more than two years after my wife and I thought we were watching him die. he no longer feels like he is suffocating.

But Only a trip to emergency and many shots of cortisone kept him breathing until we got him to a good "out of plan" doctor.

Now the only problem are the bills. Our last month's bill from our physician was over $10,000. This is AFTER we have met the deductible. This is after the insurance has covered part of the cost. The 10K is the uncovered part--the patient's responsibility. I can't wait until Paul hits his life time limit of care. Then they will pay nothing.

Thank you cons for stopping health care reform. Let's add that to your score of successes like the one you achieved when you stopped stem cell cures for ten years. Now you con cult members are stopping any chance ordianry hardworking Americans have to ever pay their insurance bills.