I am thrilled by your biography. The military history and your service during the Viet Nam era gives you instant credibility with local conservatives but you also remember what it is to have people in charge who are not competent to win a war or get out. You also speak Spanish and were raised in a bicultural environment. I am so tired of Bush’s butchered and horribly accented Spanish and the hate speech of so many in my Republican party toward those hard working immigrants from Mexico and Central America.
I agree that we need to get better control of our border but we in the US are darn lucky to have so many hard working Mexicans et. al. ready to help us in our labor force. I know so many really good people who are making profound contributions to our country, yet may have been brought here by their parents illegally or they were born here but not their equally Americanized siblings or parents. Are we really going to break up families that have been here twenty or thirty years, send millions back to Mexico at the point of a gun, just to make a bunch of yahoo minute men happy?
Four years ago my youngest son was diagnosed with his first autoimmune disease. By last summer he was up to four autoimmune disease diagnoses (psoriasis, psoriatic arthritis, ankylosing spondylitis and mast cell activation disorder) and two near death episodes. My beautiful child who four years ago seemed to be a healthy senior at UCSD is now totally disabled. Seven years ago I was forced to take a disability retirement after twenty five years as a public school teacher because of my own autoimmune disease progression. My wife still is teaching and luckily she has family insurance coverage. Still it cost our family over ten thousand dollars in co-pays etc above and beyond her insurance just to pay for my son’s medicines and treatments in the last year alone.
My son and I did nothing wrong except to have the bad luck to have a genetic time bomb. He was nearly a straight A college student–only three non-A’s. He had been his college newspaper editor. He had a huge number of friends. He neither drank alcohol nor smoked let alone took illegal drugs. My grades and academic achievement was nearly as good as my son’s. I have five different teaching credentials. I was a scholarship athlete in college.
My son and I did everything that was asked of us by society. We worked hard. We did not lead dissolute lives. Yet when our hidden genetic time bomb went off, society deserted us. Suddenly I did not have job or my own health insurance. My son lost his job, his apartment and his hope to become a doctor.
We only have medication because my wife happens to work in a union job. Otherwise my son would have not had access to care and he would have died last summer. We might have scrapped together money for medication for a year or so (without insurance nearly 60 thousand for medication plus thousands more for doctors appointments). We could not have done it for long. No insurance really means no access to health care. The lying cons on the radio say go to emergency and its all free. Not true. There is little access to treatment unless the hospital and doctors think they will be paid. If my wife loses her job, if she gets sick if she wishes to retire, my son is done. No health insurance no medicine no life. Our family and this country need universal health care coverage. No one knows when they will get sick. Certainly we had no clue. I was running 10Ks into my thirties and winning awards and plaques in my age group. I was the picture of health. No one can predict what will happen tomorrow. If I were healthy I would feel good to help others who were struck down due to no fault of their own.
We also need federal regulatory agencies that function and are funded. Only Congress can force a criminally incompetent President like Bush to do his job and propose or at least accept budgets that fully fund regulatory agencies. It is a matter of life or death. Bush’s policies of de-funding has cost my son benefits he needs and may cost him his life.
Bush de-funded Social Security. There are fewer and fewer employees to process social security disability applications. When the Bush took office in 2001, I read that the wait for an SSI application to be processed was about eight months which was a very long time, too long really. But now after the Bush budget cuts caused huge cuts in staff, it takes something like two years for an SSI application to be processed. A sick disabled person must live two years with no money or meds before getting an SSI application approved. You cannot even apply if you have any money in the bank. It is a catch 22. You cannot apply if you have any money but you must then be able to live for two years with no money before you have any chance for the application to be approved. The sick just die in the meantime. This process makes Bushies happy. It saves money. The dead do not cost any money at all.
Another critical agency that has been de-funded under Bush is the Food and Drug Administration. One of the FDA many jobs is to approve new medications in a timely manner so they can be sold to the public. But the FDA cannot because of massive lay offs due to funding cuts. Instead of more staff to process the approval of applications for the revolutionary new medications discovered in recent years, there are less staff. The approval process for new medications is taking longer and longer with fewer and fewer new medications making it to market. Virtually NO novel medications are approved any more even though years of human clinical trials are successfully completed (which FDA regs cause to cost to be way too much–a billion dollars or so per med). Each year fewer new meds, more cost, more delay, fewer FDA staff to process applications—a horror for those of us who are waiting sick and desperate for the new meds and in many cases we are even dying as our cures sit and wait for the FDA.
For instance there is a revolutionary new autoimmune medication which is completely different from any other medication on the market. It can turn off an autoimmune disease in a few as one or two injections. It has been created by Centocor, a division of Johnson and Johnson. It is called ustekinumab, CNTO 1275. The amazing results achieved in clinical trials were announced a year ago this month. The Biological License Application was accepted by the FDA on December 4, 2007. The FDA will not finish processing the application until late 2009! at the earliest! In fact it could easily be 2010!!!! How much suffering before then? How many will die? If my son survives he has three more years in wasted in a wheel chair while his cure sits on a shelf because there are not enough FDA staff members to process the application.
My wife and I tried to get him in a clinical trial for CNTO 1275 but exclusionary criteria caused him to be rejected. He had a drug reaction to another completely different medication. All clinical trials for any new medications exclude my son because of that. No pharma company can take the chance that he might react to their medication. They would have to report his reaction. It might slow down or even stop approval of their New Drug Application. Too much money involved to let him in. The truly sick are excluded from clinical trials.
The sicker the patient the less chance he has of getting into any clinical trial to get a chance at a revolutionary new medication thanks to stupid FDA regs on reporting and their medieval approval process. Now with the deliberate defunding by the Bushies, the hold up is even longer.
Imagine your child on the verge of death. Your wife and you are sitting by his bed wondering which breath will be his last, remembering him as a bouncing energetic child. The sense of disbelief. How could we be here now? Yet a medication that would could save him and likely allow him to leave his disabilities behind, a medication that would allow him to walk again perhaps run again certainly to be able to talk again,–that miracle medication is in clinical trials less than thirty minutes away in a San Diego clinical trials office. Yet short of violence you cannot get it. You are told, ‘just wait, it will be approved.’ You think something this revolutionary will be approved by the FDA in a matter of weeks. Then as you wait you read and find out not weeks but years will be needed even though all three phases of human clinical trials are completed and all the paper work in at the FDA. All because there are not enough staff members to go over the data and say ok. Can you imagine the frustration, the rage?
Today he is better. At the moment he is not on the verge of death. He is now on a terribly dangerous medication that is made of mouse protein. It is infused monthly. Each time he gets an infusion, he risks death from a reaction to the mouse protein. But it allows him to breathe so he must take it. The better fully human protein medication by Centocor (CNTO 1275) he can not get. There aren’t enough people at the FDA to approve its application to be sold to the public.
Even with this current dangerous med he still can not use his hands. He cannot get his own food or water. He cannot use a computer He cannot walk unaided. He cannot even use his voice box anymore. The mouse monoclonal medicine keeps him alive for now at great risk but it does not offer a real chance for him to live a full life.
Worse my time seems to be running out. I must get my son better soon. There is coming day in the not too distant future when I cannot take care of him while my wife is at work. Without me there would be no one at home to get him food or drink or to help him with his daily needs. He simply cannot survive without constant help. My wife cannot retire and stay home with him because there would be no medical insurance. Home nurses cost twenty dollars an hour! I stay functional to take care of him.
Each day I try to eat enough food to stay alive even though my intestines are ripped to shreds by my version of the autoimmune disease. I must force myself to eat. I have to have enough energy to take care of him. Only food gives me energy but food hurts so much. The pain is unbelievable. At times I cannot even move due to the pain. When it lets up I get my son water and food. But what happens when I no longer can?
Our family was the all American family ten years ago. My oldest son was the 1997 Vista High school valedictorian. He is now a lawyer with a San Francisco law firm. My youngest son was going to be a doctor. My wife and I were well respected teachers and leaders in our community. Now we our society’s discards. My son and I did not stay healthy, so we are worthless to my fellow Republicans. We do not deserve health care because we were ‘bad’ or ’stupid’ enough to allow ourselves to get sick. I guess it was one of those ‘lifestyle’ choices my fellow Republicans get so upset about.
I wish you the very best in defeating Issa. He has been a great disappointment to me. He never thinks for himself. He only votes the straight party line. He is the worst kind of rubber stamp Republican. I want him out. I would like to help you get elected.
Republicans in charge of the country was my dream twenty years ago. It has turned into a nightmare.
When I am feeling healthy I can make phone calls for you. I still have some community contacts. I would love to be involved but my once invincible body may not allow me to help much. Good luck. Our family is not alone in having been deserted by the Republicans. I hope enough other people in the 49th will feel as I do so we can get Issa out of Congress.
Please fight with all your might to defeat Issa. You are the warrior that so many of us would love to be but we have fallen and can no longer fight the battle. Your run for Congress is not about you alone, it is about us who have been deserted by the Republicans who desperately need a change in Washington.
Peter Welch
http://autoimmunenews.blogspot.com
February 11th, 2008 at 10:22 pm
Peter,
Your story is absolutely heart rending. I am speechless, except to say that you make me realize the vital importance of redoubling my efforts in the critical cause of affordable quality medical care for all.
So many people do not realize that something like what happened to you and your family can happen to anyone, at any time.
I urge you to keep the faith. We must persevere.
Sincerely,
Bob