In case you missed it, below is link to a blog post “A Few More Mnutes With Andy Rooney” which speaks to our ageist mindset when death from “complications of minor surgery” happens to an older person. It’s good to keep in mind that the culture we help create is the one we will inherit.

http://thehealthcareblog.com/blog/2011/11/21/a-few-more-minutes-with-andy-rooney/

I share a disease, Myalgic Encephalomyelitis, with one million American adults and countless teenagers and children. For most of us, it is a life sentence. I belong to a clearly defined subgroup - I have an abnormal defective immune system, and when off medication, I have been found to have active cases of EBV, HHV-6 Variant A, cytomegalovirus, HHV-7, and Coxsackie B. I even have active HHV-6 and CMV in my spinal fluid.

My symptoms include expressive dysphasia, ataxia, disorientation, sensitivity to light and sound, severe headaches, memory loss, massive confusion, constant pain behind my eyes and in the back of my neck, and severe pain in my large muscles. I have had abnormal SPECT scans, abnormal cytokine pattens, very abnormal CPET scores; I have developed Hashimoto’s thyroiditis and I have NMH/POTS (both are known comorbidities). I am bedridden in pain, and can only leave the house accompanied by my husband, in a wheelchair.

Big Insurance pushed CDc to rename this disease “chronic fatigue syndrome” in 1988 - now that’s a pathetically inept name if I ever heard one. How could a serious drug ( beyond SSRIs) be appropriate to this community if all these patients have is “chronic fatigue.” Chronic fatigue. I had blackouts. It doesn’t match.

The reason I can write to you at all is that I improve significantly on an experimental drug called Ampligen produced by a small drug company.

They do not have the influence of the big companies at FDA, and getting the drug approved has been made much more difficult by the CDC’s misleading website, patterned after websites in England created by psychiatrists who hold executive positions with insurance companies.

I have been on the drug since 1999. It costs $22,000/year - precisely equal to my disability pay, but I am lucky in having a wonderful husband who takes care of me and can pay the rest of the bills wih his income. I have friends who live on less than 2/3,of the cost of the drug - clearly they have no access to it, let alone all the testing I have had.

Every time I lose it - in one case simply because the head of my practice died, I relapse again. When I get it back, I have to climb back out of the hole, and each time it has been harder. The alternatives are all drugs that have known toxicities this one does not. It does not give me serious side effects - you’ll have to ask me about the long-run effects when I get there. The worst side effect has been due to the vagaries of living within the rules of FDA - every time I go back to being seriously ill, I fear I collect viruses and symptoms like Marley’s ghost collected chains.

So the degree of corporate interference on available knowledge goes beyond selection bias. Big Pharma fights the approval of venture capital drugs in the hopes of picking up the patent in a fire sale - they don’t care if the drug is completely lost to patients. The Insurance Lobby has enormous influence - in fact, if you can get Big Pharma on your side, they help you fight Big Insurance. During a brief period in the last two years, it appeared a retrovirus was involved (I tested positive for antibodies) - and Big Pharma jumped to attention, anxious to rebrand AIDS drugs for this new market. Now that it has been deemed a “lab contaminant” ( and a strange one at that - a retrovirus created in a lab inadvertently), the interest has died down. I guess Big Pharma hasn’t got much in the way of antivirals (as opposed to anti-retrovirals) for us.

What truly breaks my heart are that we are now getting a third generation coming down with this disease. How long is it going to take to break through the barriers put up by both Big Pharma and Big Insurance?