Friends of the HIV and HCV Communities - TheBody.com's Bulletin Boards

Friends of the HIV and HCV Communities:

In preface I want you to understand how fortunate I feel to live
in the United States under the care of excellent physicians and
with access to the medications I need. I have spent many hours
wondering and worrying how HIV/AIDS and Hepatitis patients around
the world can cope with the debilitation and wasting effects of
these merciless, terrible killers. I know there are others more
deserving than me. I know it is awful for them to live with
disease and without hope. I can’t look at what they endure and
not want to help.

There is no more humbling thought than knowing that you will, one
day, draw your last breath. Since being diagnosed HIV positive
I’ve often considered when that moment might come. My expectation
that I would grow old alongside my wonderful wife abandoned me
when I learned that I am infected with HIV. I wasn’t feeling ill
when I learned I was infected, I was applying for life insurance.
And, although my T-4 helper cell count was very low, I felt
strong enough to remain active, and working productively.

Prior to the availability of protease inhibitors, I would visit
an AIDS specialist, Dr. Katheryn Crooks, monthly and review with
her the treatment options we could pursue. My viral load was
bouncing between 5,000 and 50,000 copies despite strict regiments
of AZT and another NNRTI. Still, I hadn’t been struck down and
disabled like those victims whose images we saw frequently then
on the evening news. I would drive to the clinic thinking "let’s
get this over with", and leave feeling as if I could forget about
it for another 30 days. During my second visit, Dr. Crooks, who
always took a lot of time with me to make certain I understood
the nature of the disease and what to expect as my T-4 count
disappeared, explained that I had also been infected by Hepatitis
C. She encouraged me not to worry because the tests indicated
that my liver was functioning normally and that symptoms from HCV
develop slowly, if at all. It was clear to me, although she never
said so, that I could expect to die from an opportunistic
infection long before the Hepatitis could do any significant
damage. Who cares if your liver’s only functioning at 85% when
you’re choking? When they became available I began therapy with a
protease inhibitor and, like "Magic" the HIV became undetectable.

When Dr. Crooks closed her private practice to head up the AIDS
program for the VA in Las Vegas I began seeing a well known,
widely respected and very qualified AIDS specialist, Dr. Jerry
Cade. With the prospect that I could look ahead to a longer,
brighter, healthier future Dr. Cade indicated that I should
tackle the HCV issue. While my viral load for HIV remained
undetectable, my count for HCV had elevated to about a million
copies. I’m not certain it was cause for concern, but the number
itself frightened me enough to see a Gastroenterologist and have
the problem evaluated.

One June 3rd, this year, I had a liver biopsy performed. The
report indicated that I had mild inflammation and fibrosis
consistent with chronic Hepatitis C.

On June 18th I was admitted to the hospital with pneumonia.

I’d never been a patient in a hospital, let alone placed in
isolation. Everyone who came by had to enter through a special
door and wear a blue, paper facemask. I was given excellent care
and considerable attention by the hospital and it’s professional
staff. Being spoiled makes me feel guilty because there are
others, including children, who are suffering for lack of $15
worth of pills. The hospital sent a bill for over $20,000 to my
insurance company.

I don’t have pneumonia today, just HIV and HCV and the
complications I have described. I manage to work 2 to 4 hours a
day. Given the accelerated course of progression of the Hepatitis
C infection, and because I have yet to undergo any treatment for
it, because the treatment is difficult, and like AIDS the cure
still eludes us, I am doing well.

I am writing you to ask for political support. In the course of
investigating my future options I have uncovered a problem that
exists in the rules used by the Social Security Administration
(SSA) to determine eligibility for claimants who are co-infected
with HIV and HCV. In fact, the problem is so serious that it very
certainly could cost lives. Specifically, SSA has determined that
qualification for disability benefits and thereby eligibility for
Medicaid will not be granted, in the absence of specific
opportunistic infections, to HIV positive applicants whose T-4
helper cell count exceeds 200. In fact, a level of 200 is
considered by SSA to be the marker to determine if a patient is
HIV positive or has developed AIDS. Moreover, the evidence
suggests that SSA and the State government agencies that
determine eligibility use any number above 200 as evidence to
deny eligibility. The difficulty lies in the effectiveness of
treatment for HCV. The accepted therapy to treat HCV is
Interferon or a combination of Interferon and Ribavirin. The
introduction of this therapy has significant, further disabling
side effects. The dilemma for medical professionals is when to
initiate treatment given the side effects versus potential
benefits. Research indicates that a co-infection with HIV hastens
the progression of Hepatitis C, and further that Interferon is
not effective once an HIV patient has progressed to AIDS. The
result is that a co-infected patient whose HCV condition is
worsening must choose between accepting therapy and it’s
disabling side effects, before they qualify for benefits, or
continuing to work while the HCV progresses to cirrhosis of the
liver, or worse. The point is, that SSA needs to reevaluate it’s
rules and eliminate the T4-cell marker for claimants who are
co-infected and that State government agencies need to be better
educated as to how these viral infections interact.

In my case, I’ve found that SSA through the State of Nevada
Bureau of Disability Adjudication looked no further than the T-4
marker (mine is 258) to evaluate my physical condition. I can
fight that battle when I find a way to obtain legal
representation. However, while I have no access to the rule
makers at SSA who must address the larger issue, perhaps you do.

The prevalence of co-infected patients is yet to be determined.
Current estimates range between 10% and 30% of all HIV/AIDS
patients in the U.S.. If these figures are anywhere near accurate
there will be a very large number of people in the months and
years ahead who must choose between living with HIV while dying
from HCV, or living without resources while disabled by the side
effects of the potential cure.

Post Extras: Remind Me!