Positively Female: HIV isn't just a man's disease

Thirty years ago, in 1981, â┚¬Å”gay cancerâ┚¬Â was diagnosed as HIV/AIDS. Since then, millions upon millions of people have been diagnosed with the disease and the 1980s and early 1990s saw circles of friends and communities decimated as funerals became weekly rituals.

The disease became known as a â┚¬Å”gay man's diseaseâ┚¬Â or a disease shared among drug users. For 20 years, Maria Mejia silently battled her conditionâ┚¬â€and no one suspected the young Colombian native was infected, much less even at risk.

â┚¬Å”When someone thinks of a positive female, they think prostitute, drug dealer or that they are promiscuous,â┚¬Â Mejia says by phone from her Miami home. â┚¬Å”I'm fighting that stigma, that's why I'm showing my face out there.â┚¬Â

Mejia, who has been with her girlfriend for four years now, decided late in 2010 to come out of the HIV closet to show a new face in the fight for HIV/AIDS funding and medical research. The 38-year-old says she was diagnosed with HIV when she was 18, but she believes she actually contracted it when she was 16 and had unprotected sex with her ex-boyfriend. She believes he contracted it from his drug use.

She didn't even show symptoms of infection and she took a routine blood test when she joined the Job Corps in Kentucky.

â┚¬Å”The doctor didn't prepare me like they do now,â┚¬Â she remembers. â┚¬Å”He just said, â┚¬ËœYou have AIDS.'

The reaction
In 1981, a diagnosis of AIDS was a death sentence. Patients knew that death was inevitable and that no drugs were available to allow a normal life.

â┚¬Å”Twenty-five or 30 years ago, the news of a positive diagnosis was devastating to people,â┚¬Â says Elisa Icaza-Webb, a nurse practitioner in St. Petersburg who has been at the forefront of the HIV/AIDS crisis for 25 years. â┚¬Å”Everywhere you looked, AIDS was there. It was in the news and people were dying like flies. It was awful.â┚¬Â

It was a little better in the early 1990s, when Mejia was diagnosed, but not much.

â┚¬Å”I didn't seek treatment of any kind,â┚¬Â Mejia says. â┚¬Å”I didn't want to take pills and I didn't want my world to revolve around this disease.â┚¬Â

In fact, Mejia didn't seek treatment for a decade after her diagnosis. But she finally got to the point that she had no choice. Her T-cell count dropped below 40, meaning she was more than HIV-positive, she had AIDS.

â┚¬Å”For 10 years I did what I thought everyone was supposed to doâ┚¬â€eating healthy and exercising,â┚¬Â she says. â┚¬Å”But HIV broke down my immune system and I needed medicationâ┚¬â€there was no longer a choice.â┚¬Â

Fortunately medication has come a long way and the cocktails available are suitable for both men and women.
The only differences, according to Icaza-Webb, are based on the age of the woman and her fertility.

â┚¬Å”If a woman is of child bearing age and she wants to have a child, there are certain medications we avoid because of fetal side effects,â┚¬Â she says. â┚¬Å”But if a woman has her tubes tied or cannot have children for any other reason, we can use some of those same medications we use on men.â┚¬Â

Since beginning her medical regimen, Mejia has regained her health and appears as a fully healthy woman. She and her partner, who is negative, have launched a campaign to share Mejia's story because too many people don't believe women can get infected with HIV.

â┚¬Å”'You look good and you're not a gay man,' is heard by all of my female HIV patients,â┚¬Â says Icaza-Webb. â┚¬Å”There is not one of my HIV-positive women who will say its different than that. Their friends immediately think about drug use when they learn about a woman's diagnosis. But it can infect anyone.â┚¬Â

For Mejia, sharing her HIV status became paramount in early 2011 when she watched her partner's sister die of a brain tumor. She said she couldn't understand why someone can say they have cancer, but not HIV.

â┚¬Å”With cancer, you die or you're in remission,â┚¬Â Mejia says. â┚¬Å”With HIV, you have no breaks. You have it forever and it's always there, day and night. That's what I always try to convey to everyone I come across.

A life sentence
HIV infection rates are back on the rise in Floridaâ┚¬â€mostly among young gay men and young African-American women between the ages of 18-26. The reasons for the increased infections can be linked to less education on the topic or the news that the disease is manageable by specific medications.

â┚¬Å”Everyone says that HIV is chronic,â┚¬Â says Mejia. â┚¬Å”I tell them, it's not a death sentence any more, but it is a life sentence. There is a lot to do.â┚¬Â

Finding the right medications is important, of course, and Icaza-Webb is thankful for the advancements made during her career. But many patients don't see the big picture when they learn of their status.

â┚¬Å”Every aspect of your life changes,â┚¬Â she says. â┚¬Å”Social, economicâ┚¬â€there are a lot of taboos and stigma still. It's slowly getting better, but it is still there.â┚¬Â

A positive diagnosis may not be a death sentence, but it can still be traumatic for a patient. Mejia, who has several blogs on the subject of HIV, says that there are times when she has to encourage people to liveâ┚¬â€but she has to focus on prevention too.

â┚¬Å”It's a tricky balance,â┚¬Â she says. â┚¬Å”I try to give someone who just found out he or she is positive the hope to continue. I convince them they can continue to live a fairly normal life. I give them hope. But I have to focus on prevention too. Medications are harsh but you can live with it. But it's an avoidable situation.â┚¬Â

The search for a cure
When the AIDS crisis first began, Icaza-Webb told her patients and friends that she would not see a cure for the disease in her lifetime. Thirty years laterâ┚¬â€and with medications unimaginable three decades ago readily availableâ┚¬â€her position has not changed.

â┚¬Å”We have excellent medications now to control HIV,â┚¬Â she says. â┚¬Å”But none of them will kill HIV. I don't think we're close to a cure because it's a complicated process. Many try herbal remedies from other continents, transfusions, blood exchanges. But I cannot tell you that I've seen any significant research that is close to finding a cure.â┚¬Â

Recently, a man in Germany was actually cured of the disease, but the circumstances surrounding that case were extreme, Icaza-Webb points out. In that case, the patient received a stem cell transplant as a means to battle leukemia. However, the extreme conditions of that procedure are not readily available to the rest of the world.

â┚¬Å”It is not something that is readily available or that has been proven to work 100%,â┚¬Â Icaza-Webb says. â┚¬Å”I still do not believe a cure will happen in my lifetime, and I have a long time to live.â┚¬Â

A vaccine for the disease, however, could happen in a decade or more, she says.

â┚¬Å”We have found vaccinations for other diseases we thought we never would,â┚¬Â Icaza-Webb says. â┚¬Å”This is a completely different area than finding a cure. Look at polio. I cannot tell you when the official last case of polio was reported. Every child in the world is vaccinated for that.â┚¬Â

And that's how HIV may be eradicatedâ┚¬â€through vaccinations, she says.

â┚¬Å”Once you have massive vaccinations over multiple generations, you see the virus is unable to infect new hosts. The lifecycle is halted, and that may be the way we rid the world of HIV. But that's a long way off.â┚¬Â

Finding trust
Mejia and her partner, Lisa, are careful. Lisa is educated about HIV and Mejia takes precautions to ensure she doesn't infect her.

â┚¬Å”I disclosed my status to her before we were a couple,â┚¬Â Mejia says. â┚¬Å”I'm more than willing to share information with her and I consider myself an HIV educator. I want people to come ask me questions and the four years I've been with her we've talked about the precautions.â┚¬Â

Mejia says she doesn't share toys with her partner and even if her partner has a slight sore in her mouth, she won't engage in oral sex.

â┚¬Å”We're very careful and she gets tested regularly,â┚¬Â Mejia says. â┚¬Å”Everything has been fine. It's not always easy to be so careful but when you see what I go through, she realizes the importance to be safe. Too many people in relationships with positive people say, â┚¬ËœI don't care, I love you.'

â┚¬Å”No! If you love them, then you also need to love yourself.â┚¬Â

Mejia and Lisa are lucky. Finding trust isn't easy, and Icaza-Webb believes trust is something that should not be taken lightly.

â┚¬Å”People lie about little things like about how much money they make or where they live,â┚¬Â she says. â┚¬Å”You don't think they'll lie about their HIV status too?

Mejia agrees and knows that not everyone is as forthcoming with their status as she is.

â┚¬Å”This is controllable and we now how to do that,â┚¬Â Mejia says. â┚¬Å”We just have to have to use that power to stop the spread and control it.â┚¬Â

For more information on Mejia, visit her blog.