One Man’s HIV/AIDS Story
Sean Reaney, Diagnosed With HIV/AIDS Over Two Decades Ago, Has Survived Through The Trials And Tribulations Of Treatments, Medications and Stigmas
By Vickie Goen
Special for Modern Times Magazine
Oct. 26, 2012 — In 1986, Sean Reaney, was 19 years old and living in California. Like many young people, Sean enjoyed the nightlife and often engaged in behaviors many would consider risky such as unprotected sex.
Sean admits, “It was the 80’s so it was clubs, parties, drinking etc.”
What Sean didn’t know at the time was that a newly emerging sexually transmitted disease was spreading rapidly, particularly in the gay community of which he is a member. Little was known about this virus, but it was virulent and there was no cure. Its name was the Human Immunodeficiency Virus, or HIV, and it would shape the remainder of his life.
HIV is a virus which attacks the body’s immune system, specifically the CD4+ T-cells, nicknamed the helper T-cells because they “help” white blood cells fight infection in the body. A normal CD4 count is 500 to 1000 cubic millimeters. Once these T-cells become infected, the body activates a response to destroy the compromised cells. Eventually, the T-cell count falls and the person’s body is no longer able to fight off opportunistic illnesses such as fungal infections or other viruses. The CD4 count is the primary way to follow the progression of HIV. A CD4 count of 350 cubic millimeters is the point at which the U.S Department of Health and Human Services recommends treatment initiation. Once the CD4 count falls below 200 cubic millimeters, the individual is considered to have Acquired Immunodeficiency Syndrome, or AIDS.
Today, HIV is not only better understood by the medical and scientific community, it is also a disease at the forefront of public awareness. But when Sean was diagnosed 26 years ago, HIV/AIDS research was in its infancy. The Centers for Disease Control recognized the first case of AIDS in the United States in 1981, and five years later there were still no available treatments for HIV/AIDS.
Sean vividly remembers the conversation with his doctor when he was told he was HIV positive because unfortunately, before retro-viral therapy, acquiring HIV was a death sentence.
“The doctor told me I should gather my family together and that we should make arrangements,” he said.
According to Sean, he has lost 49 friends to AIDS. When asked how so many deaths have affected him Sean says, “My heart aches that they aren’t here with me to share my life. I feel very guilty sometimes that I’m still here and for the most part I’m doing great.”
If not for medical advances which came shortly after Sean was diagnosed, his situation may have mirrored those he has lost. In March 1987, the FDA approved zidovudine (formerly known as azidothymidine or AZT), the first medication effective in the treatment of HIV. Today there are a handful of drugs approved by the FDA for HIV treatment. In most cases, patients are placed on a multiple drug regime to target the virus at different points of reproduction and to reduce resistance to medication. Over the course of Sean’s illness, he has been on more than 30 various treatment regimens.
Although they are effective, these medications are expensive. Sean’s current regimen consists of two medications; Isentress and Truvada. At Walgreens, the cash price for 400 milligrams of Isentress 400 $1,340 for 60 tablets, and Truvada is $1,398 for 30 tablets. While the price may vary slightly depending on the region, there are no generic equivalents for these medications. Because of the tremendous drug costs, many patients need some type of assistance to help treatment expenses. In Sean’s case, his costs are split between his medical benefits through his employer and the Minnesota HIV program which helps with the cost of his deductibles.
Even if a patient has health insurance, many companies have special requirements a patient must meet before the drug will be covered. Marcus Hunt, a pharmacy team lead for Medicaid/Medicare operations at a large insurance company says that his company’s procedure is very precise in the case of HIV medications.
“If the medication is not listed on the plan formulary, the provider must submit a prior authorization to be reviewed for coverage. The form, office notes, patient charts, and prescription history are all taken into account when reviewing for coverage. We require the member to try all formulary medications prior to approving any non-formulary requests,” said Hunt.
In addition to these formulary guidelines, Hunt’s employer also requires that all prescriptions for HIV medications be written only by an infectious disease specialist.
Aside from the physical impact that HIV causes in a person’s life, the social and emotional changes can also be profound.
When asked how his relationships with family and friends changed once they found out about his positive status Sean said, “I have the most supportive, encouraging, and loving family and friends, but, in the early days relationships were hard. People were uneducated and scared. They wondered, can I get this from kissing you, holding your hand etc, but now that is not as problematic.”
While Sean has managed to remain physically healthy over the years, he does admit his mental health has been more of a challenge. He has had both substance abuse issues and depression as a result of his condition. His advice to others who are in the same situation is, “seek out a therapist who fits well with your needs so you can talk out your feelings.”
In addition to therapy, Sean recommends joining a support group to connect with other people who are going through the same struggles. A few that he has been associated with over the years are the Tucson Aids Project, The Southern Arizona Aids Foundation (SAAF), and the Minnesota AIDS Project.
Finally, Sean stresses that you must come to terms with your condition. When asked about the fate of the man he contracted HIV from, Sean answers that he died of AIDS complications in 1995.
“Believe it or not, I cried and felt very sad. It was weird because every time I would see him after I found out I was HIV positive I just wanted to punch him out. In the end, God gave me the empathy I needed to let go,” he said.
Today, thanks to medication, Sean’s CD4 count is around 395 cubic millimeters and his viral load is considered “undetectable.”
He has a support system in his friends and family and he is willing to speak out about his condition to help people understand that having HIV does not mean you can’t live a full life. He advises people to practice safe sex, be informed, and if diagnosed with HIV to seek treatment immediately.
As Sean explains, “HIV is now a manageable chronic illness. It’s a disease, not a disgrace.”
Vickie Goen is a freelance writer living in Phoenix.
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