John-Manuel Andriote: I can’t afford costly medications I need to handle the disease - No. Page 1 of 3
John-Manuel Andriote: I can’t afford costly medications I need to
handle the disease
Oct 07, 2007 @ 12:33 AM
By JOHN-MANUEL ANDRIOTE
For the Norwich Bulletin
Editor’s note: John-Manuel Andriote is a Norwich resident and author of “Victory Deferred: How AIDS Changed Gay Life in
America” (University of Chicago Press).
That was how my doctor told me, over the phone, Oct. 27, 2005, I had tested HIV-positive after 17 years of testing negative.
My bad news got even worse when follow-up tests revealed the virus already had seriously damaged my immune system.
I had no symptoms — and probably could have gone a long time without knowing anything was wrong, if I hadn’t gone in for
Worst of all, though, was finding out my individual health insurance policy caps prescription drug coverage at only $1,500 a
year. The medications I need to take the rest of my life cost more than $1,700 a month.
I am not wealthy, and my income as a freelance writer and editor is up and down. So paying out of pocket for these
stunningly expensive medications isn’t an option.
I was lucky to get into a clinical trial through Washington, D.C.’s, Whitman-Walker Clinic, the city’s main HIV-AIDS service
provider. I lived in D.C. for 22 years, before returning to Norwich, my hometown, in July.
For almost two years the clinical trial — testing a combination of already-approved drugs — has provided my meds, regular
But my 96 weeks in the trial are up in November.
I’ve been fortunate the side-effects of the chemotherapy — for that is precisely what HIV meds are — have been relatively
mild. For about six months, I took a sleeping pill every night because of insomnia; now I sleep fine. Sometimes I feel
fatigued, though who knows if it’s from the meds or because I just turned 49. I’ve had to stick close to a bathroom at times
because diarrhea is another common and unpleasant side-effect.
I had to start taking Tricor, a drug made by Abbott known as a fibrate, to lower the high level of triglycerides (fat) and LDL
(bad) cholesterol in my blood (another common side-effect) and increase the HDL (good) cholesterol. Untreated, it can
increase the risk of heart attack or stroke.
And I am concerned about developing lipoatrophy — the loss of fat in the face, arms and legs that gives some people taking
antiretroviral medication a gaunt look. Even now I look at the extra room in the seat of my pants and worry that there seems
to be less “there there” than I think there used to be.
John-Manuel Andriote: I can’t afford costly medications I need to handle the disease - No. Page 2 of 3
All things considered, I am doing extremely well. The virus in my blood is “undetectable,” the best medicine can do short of
Medical studies show existing treatment can’t prevent the virus from doing damage in the brain, and there continues to be an
alarmingly high risk of dementia because of it. But there is literally nothing I can do but pray I am spared this most terrifying
Overall, my experience to date is evidence, when it is treated properly, HIV infection today is a lot like diabetes — a chronic
disease that can be effectively managed. The images of HIV-AIDS from Africa and other hard-hit areas remind me of what
my friends and colleague suffered in past years when there was no effective treatment.
But, thank God, they are as foreign to my personal experience as are images of untreated diabetes — a major killer in the
developing world — to America’s tremendous number of diabetics who take medication to manage their blood sugar levels.
Now the doctors tell me aging is more likely to catch up with me than HIV.
Of course the key to my continuing good health will be continued access to the medications I need. Because of my low
income the last couple of years, I was able to enroll in Connecticut’s AIDS Drug Assistance Program (CADAP), a federally
supported program administered by the states.
So far I have only used it for my Tricor prescription — which costs about $150 for a 30-day supply. After the clinical trial ends
in November, though, I will rely on CADAP to cover the really expensive antiretroviral meds.
With assistance from Alliance for Living, the HIV-AIDS service organization based in New London, I should be able to hold
on to the same health insurance policy I have had — the one with the low prescription cap. In fact I need to hold on to it
because I am not likely ever again in our country’s current health-care system to be approved for a health insurance policy
unless I happen to work somewhere that offers a group policy.
As so many Americans know too well, actually needing insurance to pay the expenses of treating their “pre-existing
condition” disqualifies them from being insured.
I have to wonder what I would do if my income were higher than 400 percent of the federal poverty level ($38,400 for an
individual), the threshold for the CADAP program.
I think about the people with HIV-AIDS whose income is above that cut-off, yet not nearly high enough to pay for life-saving
medications that cost thousands of dollars a year.
My two decades of reporting on HIV-AIDS, and now my personal experience of living with it, have convinced me all
Americans should be able to have excellent medical insurance as a right of citizenship — just like the citizens of every other
major Western country, including Canada, France, Germany, Great Britain and even Cuba.
It makes no sense whatsoever any American should have to choose between paying for insurance and medical treatment
and, say, paying for food and housing. Yet 47 million uninsured Americans — the cumulative population of 24 states plus the
District of Columbia — are forced to make those kinds of choices every day.
I am fortunate because there has been a clinical trial and there is a drug assistance program to provide the medications I
need to treat my particular condition — and because my income qualifies me for it.
John-Manuel Andriote: I can’t afford costly medications I need to handle the disease - No. Page 3 of 3
But isn’t it truly sick to think I am fortunate because I have HIV-AIDS and not something else that doesn’t have a special
federal program to assist those who have it?
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