Medicaid Managed Care - U.S. Senate Special Committee on Aging

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Ms. CHRISTENSEN. Thank you.
Don.
STATEMENT OF DONALD MINOR, CLIENT ADVOCATE, CARE
MARK, ON BEHALF OF THE NATIONAL ASSOCIATION OF PEO-
PLE WITH AIDS, WASHINGTON, DC
Mr. MINOR. Thank you, Mr. Chairman, for the invitation to
speak with you on this issue and for the opportunity to address the
special health care needs of people living with HIV and other catastrophic
disorders.
My name is Donald Minor. I am a person living with HIV and
hemophilia. I am speaking with you today on behalf of the National
Association of People with AIDS. NAPWA is an organization dedicated
to serving as both a national information resource and voice
for the needs and concerns of people living with HIV throughout
the United States.
As you may know, HIV disease is a disorder which leads to a
progressive weakening or destruction of the immune system. Once
it has crippled the immune system, the body becomes open to a
host of opportunistic infections. HIV/AIDS has remained a pandemic
since the first diagnosed cases in 1981 and remains a tremendous
national crisis. While our Nation's newspapers report the
marvel of new treatments and the death rate from this disease declining,
let us be warned that this crisis it not over yet.
I have met with people from every State of the Nation living with
HIV, from every economic status, race, gender, and progression of
the disease. AIDS does not discriminate. It affects babies, children,
adolescents, teenagers, young adults, parents, grandparents, and
senior citizens.
I come to you from Johnson City, TN. They call me 'the redneck
from Tennessee." I was born with hemophilia. Hemophilia is a
blood-clotting disorder that affects over 20,000 individuals in the
United States. Via a contaminated factor replacement product, I
contracted the HIV virus in 1983. This was confirmed in 1985
when the first tests were available to detect the virus.
Having hemophilia already created a problem in getting insurance.
I lost coverage as fast as I could get it. I either maxed out
the policy, or it was denied due to preexisting conditions. I managed
to be placed on a catastrophic insurance pool with high premiums
and many limiting conditions.
Soon after I was diagnosed HIV-positive, I lost my job. I applied
for disability, but the judge denied it due to my education. He stated
that I could still find a job. From there, the nightmare started.
No job, no prospects, no disability, and very low self-esteem.
That is when I got mad and fought back. I became involved in
my own advocacy and became a willing person to speak for others.
It has been a long, hard road to this day.
Today I participate in a State managed care program called
Tenn<strong>Care</strong>. When it started, it was a nightmare for those of us with
catastrophic disease. There were literally life and death scenarios,
because Tenn<strong>Care</strong> was implemented without adequate planning. I
can personally tell you what managed care is when it has no rules,
no boundaries, and no standards of care that are measurable with
outcomes tools. I have been denied medications, had medications