Where The Dragon Lurks
By John Herd
Usually, I prefer to keep my private life private. However, in this case, I feel I must make an exception. What I share I have never disclosed publicly. The medical research politics now taking place make it impossible for me to remain silent any longer. Those driving medical research forward need to hear how dire our situations are, how desperately we need their compassionate understanding as they decide how research and treatments options proceed.
For 21 years, I have lived with Chronic fatigue Syndrome (CFS). The illness transformed every aspect of my life. My health, my career, my economic status, and my past social life all evaporated because of the illness.
That is not as bleak as it may sound.
Endurance, living a life of having to claw for every bit of quality of life within reach, has opened new doorways into appreciating what “quality of life” truly means. I was forced by necessity to construct a new life, which, thankfully, has been rich with joys and rewards.
But some harsh realities can’t be avoided. No amount of will power nor positive attitude can allow me to escape some very harsh realities that may once again may transform my days ahead.
My past medical insurance company dumped me. I became one of those faceless people categorized by the insurance companies as “high risk” because of having a pre-existing medical condition.
Sure I could have gotten new insurance, if I could have afforded the unattainable cost of $1,200 in monthly premiums. That’s how the insurance companies keep us off their ledger pads; they make the coverage too expensive for us to afford.
The upshot for me has been almost no medical care during the past 10 years. Obtaining treatments for my CFS symptoms has been economically beyond reach, as has treatment for other medical problems.
On the positive side, not having access to treatments has forced me to learn to live harmoniously within the limitations of my physical capabilities.
But there’s a dark side where a dragon lurks.
Its shadow may be a combination of family history, etiology and pathogenesis not fully understood. The dragon’s name is Human MLV-Related Virus (HMRV), also known as XMRV and MLV. HMRV has been found to be associated with prostate cancer and CFS (and possibly a number of other conditions).
It has been difficult enough living with CFS, but I also live with a family history of prostate problems. Prostrate problems has afflicted my bother and father. My father died of prostate cancer. The symptoms have not escaped me either; I’ve lived with untreated prostate problems for over 10 years. Is HMRV causing these problems? Is cancer causing these problems? Because I cannot afford health insurance, I do not know.
One CFS research study found me to be “XMRV positive.” Another found me to be “MLV positive.” Are those results due to my having CFS, or is prostate cancer possibly lurking within me also? I wonder: if I do not have prostate cancer yet, is it written in my cards? Because I have no medical insurance, these questions go unanswered.
As long as the medical insurance companies can deny us health care coverage by making it so expensive, there will be millions of Americans in similar situations who are unable to do anything about it.
And as long us conservative overly cautious medical investigators in the health department insist on the need for more investigational HMRV research before compassionate care antiretroviral treatments are offered, there may be lots of us potentially slowly or quickly dying from HMRV illness.
We need health care reform. We need more funding of extramural HMRV research. We need compassionate, yet affordable, care. We need to have our futures.
© John Herd, ’10
May be reposted with prior permission
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