HIV: A 'secret' disease

Wednesday, October 3, 2012

[Names have been changed to protect the privacy of these individuals.]

Michael lives with a secret. He has Human Immunodeficiency Virus (HIV), which he acquired when he used a dirty needle to shoot methamphetamine.

"I was so involved with drugs at the time," Michael said. "The high was more important than the needle."

Michael admitted that his lifestyle was less than pristine, even though the side effects of meth, usually causing a deterioration in appearance and health, worked the opposite on him.

"I took lots of showers," he said. "I lived with a toothbrush in my mouth. I was very OCD (obsessive-compulsive) about my appearance."

Michael used meth for years, finally opting to go into treatment. It took him four stints in rehab before he got clean. The last time he used was in September of 2006.

"I was donating plasma in 2004 and discovered I had Hepatitis C," Michael said. "In 2009, I went to get treatment for that when the doctor discovered I had HIV. That stopped the Hep C treatments cold."

Michael said he rarely shared needles with other users but still doesn't know exactly when he became infected with the potentially deadly virus.

"A lady from the health department showed up and told me I had HIV," Michael said. "I was in shock. I immediately called my fiancée, Jamie, and told her to come home."

"I was teaching at school," Jamie said. "I knew he was upset, but I didn't know why. When I got to the house, there was this stranger in my living room telling me I had to be tested for HIV.

"I was angry and scared," Jamie continued. "I didn't know if I wanted to be with Michael anymore."

Although Jamie's tests for both Hep C and HIV came back negative, the question in her mind was could their relationship survive this kind of traumatic blow?

"I was sick about it," she said. "I didn't know the difference between HIV and AIDS (acquired immune deficiency syndrome) at that time."

The couple started to learn as much about the disease as they could, researching treatment options and medications that could control the growth of the virus.

"We went to AIDS Project of the Ozarks," Jamie said. "They didn't want to start him on HIV meds until he was nearly in full-blown AIDS."

That was unacceptable to the couple, who once again started researching options available to them.

"We ended up in Boulder, Colorado," Michael said. "They started me on the medications the very first day."

"We were basically homeless," added Jamie. "We were living in a hotel room. I had quit my job as a teacher at the end of the semester, and we went to Boulder."

When Michael was first informed he had the virus, his T-cell count was at 900, well within the 500 to 1,300 range for a healthy person. By the time the couple moved to Colorado, four months later, his T-cell count had dropped to 600.

T-cells are a part of the human immune system involved in defending the body against both infectious disease and foreign materials

"The T-cells started dropping fast," Jamie said. "They consider a person with a T-cell count of 250 to 300 to have AIDS."

"We immediately filed for state aid, which allowed him to get the medical care he needed," Jamie said.

A construction worker by trade, Michael was unable to find work.

"Nicks and bumps are just a part of the trade," he said. "Taking the chance of getting cut on the job puts everyone else at risk."

Michael also suffers with schizophrenia, a mental disorder characterized by a breakdown of thought processes and by poor emotional responsiveness and depression, which is characterized by mood swings and low self-esteem. Medications to treat all of his diagnosed illnesses average between $4,000 to $6,000 a month.

That alone is a large burden for the couple to bear, but when a trusted friend turned into a bitter enemy, the troubles were compounded 10-fold.

"I thought I knew this woman; I thought she was my friend," Jamie said. "I confided in her. Then she asked us to sell her some prescription pain medications, and we refused. She went ballistic. She stood outside our house, screaming that we both have HIV and Hep C and threatened us bodily harm. She vandalized our vehicle. She screamed out our most personal issues to the entire neighborhood. It was a nightmare. Now our neighbors won't speak to us, won't even look at us."

The stigma that comes with HIV is a problem that plagues society, even those in the healthcare industry.

"When I started having problems with my schizophrenia, I voluntarily went to the hospital and checked myself in," Michael said. "When I was transferred to another facility, they lost my HIV meds. The doctor there refused to treat me because of the HIV. This is a doctor. She should have known what precautions to take."

As a result of missing over a week's worth of treatment, Michael now has to be tested every three months to make sure the interruption in medication has not affected his T-cell counts.

"He will have to be tested for a year before the infectious disease doctor is assured his system wasn't compromised by them losing his meds," Jamie said. "In the mean time, I contacted Daniel R. Levinson, inspector general of the Department of Health and Human Services in Washington, D.C., and told him about the doctor's refusal to treat Michael. She has had her license revoked and can no longer practice in this state."

That's little comfort to those who face this kind of discrimination on a daily basis.

"We lived in one apartment where the facility manager took out a restraining order on Michael, saying he was afraid he would get AIDS," Jamie said. "How ridiculous is that?

"This is such a secret disease," Jamie continued. "When people get cancer, others hold rallies and fundraisers. But HIV? Their first thought is that the person is a homosexual, and their second thought is that he is a drug user."

"We don't tell on job applications that I have HIV," Michael said, "because we fear discrimination."

"Who is going to hire him with all of these issues?" Jamie asked. "Yet he's been turned down for disability seven times."

"I'd really like to be able to get into vocational rehabilitation and learn a new skill, one that doesn't put people around me at risk," Michael said.

Along with the bitter, there is the sweet.

"When the neighbor started screaming at us, several of our neighbors from down the block came and sat in vigil outside of our apartment," Michael said. "They were there to let her know her behavior would not be tolerated. Since then, things have been a bit better. I don't feel like a walking disease."

Treatments for the schizophrenia and depression have also helped.

"I've given up those bad habits and turned my life around," Michael said. "It took awhile to get my head around this. If not for Jamie, I'd be dead."

Looking back, Michael sees where bad decisions landed him in the place he is now.

"There has never been a 'normal' for me," he said. "My parents were into drugs and alcohol when I was a teenager. For my 18th birthday, my dad gave me meth. It was socially acceptable with my dad and his friends. It's the pattern I grew up in, it's the only thing I knew -- an abusive father and my mom living in fear all the time. If I had gotten an early diagnosis of schizophrenia back then, I wouldn't have started self-medicating with drugs and alcohol. That led to run-ins with the law, and that only makes you feel worse."

Their personal experiences have made Jamie want to start a support group locally.

"He can't be the only one in southwest Missouri that has HIV, but people just don't talk about it," she said. "I want to become an advocate for people with HIV/AIDS. They need to know they are not alone out there. I don't want Michael or anyone else living 'in' the disease. We need to move forward and turn this negative into a positive."

"People with HIV fear rejection from others when they find out," Michael said. "I hope one day, people can look at me and see me as just 'Michael,' not as 'the guy with HIV.' I hope awareness will change the way people see and deal with those of us that have HIV."

Ron Stair, of the First Christian Church in Monett, has announced the formation of a support group for those with Hep C, HIV and psychological issues. For more information, call Stair at 235-7233.

For more information on HIV and AIDS, visit the Aids Project of the Ozarks website at

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