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June 7, 2007 – No. 10
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No longer a death sentence

As far as Iris Rivera knew, the clock was ticking.

The doctors said she had maybe five years to live — if she was lucky — and if there was anything that Rivera knew with almost absolute certainty, it was that luck was a complete stranger.

At the time, she was living in a homeless shelter and raising three children virtually on her own. She was married to a drug user, and though her English wasn’t great, she said she understood what the doctors were telling her.

She had tested positive for HIV.

Five years.

“It blew my mind,” she said. “I thought I was going to die. I asked God to help me because of my children. I wanted to see them grow up.”

Back in 1988, when she learned of her condition, five more years of life was a reasonable expectation. But that wasn’t good enough for her children, particularly the baby who was then almost three years old and may have been infected during childbirth.

Though she prayed to God, doctors banked on science, and slowly, miracles occurred.

For one of the first times in her life, Rivera started hearing good news.

Her youngest child tested negative. And, more important, she made it past the five-year mark. And then six years. After the seventh, she stopped counting.

“I had to decide whether I wanted to live or die,” she said. “ I chose to live. HIV lives with me. I don’t live with it. I’m in charge here.”

Rivera’s story underscores one of the more remarkable periods in modern day medical history — HIV is no longer a death sentence.

Dr. Valerie Stone, the director of the Women’s HIV/AIDS Program at Massachusetts General Hospital, is all too familiar with HIV and AIDS. For the last 20 years, she has specialized in infectious diseases, starting as a fellow at Boston University Medical Center. She was fresh out of Yale Medical School at the time, and was deeply disturbed at the disparate impact HIV/AIDS was having on minority communities.

Dr. Stone readily admits that medical advances have come a long way, but are still short in producing a vaccine. “But there has been a real turnaround,” Dr. Stone says. “The treatments now are fabulous.”

And that is the real story — HIV is treatable.

As retroviruses go, HIV is a particularly nasty one.

Unable to survive on its own, the virus invades the body’s white blood cells and targets the helper T or CD4 cells that are responsible for fending off viruses, bacteria and fungi. HIV multiplies very quickly and overwhelms the helper T cells, leaving the body susceptible to certain types of cancers and opportunistic diseases — infections, such as pneumonia — that a normally functioning immune system could easily overcome. If left unchecked, HIV can eventually result in full-blown acquired immunodeficiency syndrome or AIDS.

HIV can lie silent for many years — up to ten or more — before the infected person begins to show symptoms. The initial infection with HIV is relatively innocuous and may seem more like the flu – fever, headache, sore throat, swollen lymph nodes. Like many other life-threatening diseases, HIV/AIDS requires a test to determine its presence. Without proper testing, most don’t know they have it, and unknowingly can spread it to unsuspecting partners. The Centers for Disease Control and Prevention (CDC) estimate that 25 percent of those living with HIV are unaware of their infection.

Such was the case with Rivera.

Five years before she was actually tested, she had an appointment with her gynecologist. She had chills, fatigue, and a cold “that wouldn’t go away.” Her doctor suspected HIV at the time, but Rivera refused to take the test.

After the appointment, Rivera said she talked with her husband about the possibility that she or he might have HIV or worse.

His response was typical. Even though he was an intravenous drug user, she said he claimed to use his own needles and never shared them.

Rivera’s husband went on to explain that he was “too healthy” to have that disease. The implication was clear. He was not gay.

“He told me that he was a 190-pound muscular man,” she said, “and that there was no way that he could have AIDS.”

He further told her to look at herself and that she looked very healthy.

In hindsight, Rivera concedes that she was in denial. It wasn’t until five years later, while living in a homeless shelter, that she developed the nerve to get tested.

The shelter had sponsored a workshop on HIV, and as she listened, she said “my heart started beating faster.” Knowing that she could possibly have HIV, she got tested at Martha Eliot Health Center in Jamaica Plain.

The initial treatments were horrid. Her regimen of AZT pills caused most of her hair to fall out. She also developed thrush, a fungus that attacked her esophagus and trachea and left white lesions on her tongue and throat. Under normal circumstances, her body’s immune system would have been able to defend itself. With HIV, she couldn’t.

“It was awful,” she said. “I wouldn’t wish that on my enemy.”

She now takes only three medications once a day, and so far so good. For the most part, she has overcome the stigma, stereotyping and depression. She still has her moments, but she is happy to be alive and living, volunteering a lot of her time with the AIDS Action Committee. Her husband was finally diagnosed with AIDS. After a two-year bout, he died in 1993.

So widespread is the epidemic of HIV that last year CDC revised its recommendations for testing for HIV to include adults, adolescents, and pregnant women in health care settings. The revised recommendations were meant to expand testing to low-risk people in addition to those considered high-risk.

The good news is that medications have been developed that can help keep HIV at bay, preventing the onset of symptoms or progression to AIDS. Highly active antiretroviral therapy, or HAART, was introduced in 1995. HAART is a combination of antiretroviral medications that attack HIV on several fronts to prevent the virus from reproducing by interfering with it at different stages of its lifecycle. The drugs slow the progression of the disease and allow people infected to live longer.

In its infancy, HIV was considered a white gay male disease, but time has changed that description. Incidence of the virus has increased in blacks, females, and heterosexuals at an alarming rate. Nationally, blacks constitute more than half of HIV/AIDS cases, and women account for 26 percent. The incidence among heterosexuals is one of the fastest growing categories of HIV-positive people due largely to intravenous drug and unprotected sex with HIV-positive partners.

In Boston, the typical HIV/AIDS case is a black male between the ages of 40 and 49. The incidence is lowest among Asians and those under the age of 20 and above 50. The death rates from HIV diseases in Massachusetts show a marked disparity by race. Black males are hardest hit. The death rate from HIV diseases in black men is twice that of black females, seven times that of white males and 18 times that of white females.

Dr. Stone says that one of remaining hurdles is still overcoming the stigma. Unlike other chronic diseases, such as cancer or strokes, where it’s considered a test of courage to survive or beat it, living with HIV/AIDS has little public sympathy. “Even with all of the successful treatments and longer life spans,” Dr. Stone says, “people still feel ashamed to admit that they have HIV because of this persistent stigma. Hence, they often keep it a secret. Yet, one of the worst things that we can do is remain silent.”

Iris Rivera contracted HIV from her husband, who used intravenous drugs. She said she had to live for her three children, and fought to overcome the depression, stigma, and stereotyping associated with HIV. Rivera has survived almost 20 years since her diagnosis. She now works with the AIDS Action Committee of Massachusetts as well as other community groups in an effort to educate the public about HIV.

Valerie E. Stone, M.D., MPH
Director, Women’s HIV/AIDS Program
Massachusetts General Hospital

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