Health & Wellness

Living with AIDS

Three decades since his diagnosis Andrew Jones is thriving with an undetectable viral load

Andrew Jones, 60, feels “blessed” to be able to live the idyllic life on Cat Island – enjoying taking in the natural environment while walking with his dogs on the beach, trying his hand at growing tomatoes and sweet pepper, watching Netflix and playing music when he absolutely has to be indoors. But life has not always been this carefree for Jones who has been living with AIDS for more than three decades, and is a living testament that people do not have to die from the virus.

Jones was officially diagnosed at age 31 with full-blown AIDS while living in New York. He says he did not expect to see his 35th birthday. Twenty-nine years later, he is thriving because he adheres to his medication protocols, and the virus is undetectable in his body

“It’s a different disease now. It’s survivable. It’s livable,” said Jones.

Diagnosed not with HIV, but full-blown AIDS, he believes he contracted the virus when he was in his early 20s and estimates he has had full-blown AIDS since 1981, considering it takes about eight years to develop full-blown AIDS after being infected with HIV.

“It was likely I was infected in the early to middle 80s in New York,” says the songwriter and singer who plays the guitar and was living the musician’s life at the time. “It’s likely I’ve had it about 35 years or so, but I’ve known about it 30 years.”

Jones was diagnosed with AIDS while hospitalized in New York with an infection.

He was put on zidovudine (AZT), the first anti-retroviral shown to be effective against HIV/AIDS – but it wasn’t a cure.

“It was quite toxic, and I remember being very sick and it had side effects. I [ascribe] to the theory it was kind of a bridge to better therapies and kept me alive for a while. Then they started coming out with other treatments.

“In 1998, I finally got on the first drug that was effective for me that reduced my viral loads to zero.”

Having an undetectable viral load means that there is not enough HIV in a person’s body fluids to pass HIV on during sex. The person is not infectious. And for as long as their viral load stays undetectable, their chance of passing on HIV to a sexual partner is zero.

“That was the miracle when these drugs started becoming available,” says Jones. “It was a really grim diagnosis to get a diagnosis of AIDS.”

He recalls a doctor coming into his hospital room and telling him he was at his end.

Three decades later, Jones is one of 6,025 people living with HIV/AIDS in The Bahamas as of December 2018, which equates to approximately 1.6 percent of the Bahamian population.

In the early years of his diagnosis, he recalled it being a “very scary situation” at a time when very little information was available.

“Panic, misinformation, conspiracy theories … a lot of confusion,” said Jones. “It took quite a while for effective information to come along. You would hear rumors about something someone said was effective. I tried everything.”

He remembers at one point taking beta carotene, derived from carrots that people said was effective and turning orange.

In 2020, Jones said people should not be dying from AIDS, owing to the many different medications that are effective.

“It’s a totally livable disease,” he said. “It’s good for people to realize there are success stories, considering all the tragedy.

“I lost a lot of friends.”

The Bahamas has seen a decline by almost half in new HIV/AIDS diagnoses over a seven-year span with 154 new cases recorded by the Ministry of Health in its most recent statistics released at the end of December 2018 – a decrease by 174 cases. At the end of December 2013, there were 328 cases, according to Bahamas AIDS Foundation President Lady Camille Barnett.

Barnett told The Nassau Guardian ahead of World AIDS Day on December 1, that it was wonderful to see the numbers going down, but that education continues to be needed.

Of the new HIV/AIDS cases, most of them were males – 65 percent male and 35 percent females.

Barnett also noted that of the new cases, 21 percent are between the ages of 15 and 24, a statistic Foundation and Ministry of Health officials found “interesting”.

It was also interesting to Jones.

“We have to start again with every generation,” he said. “I think people underestimate hormones and every new generation discovers sexuality anew and think they invented it; but we have to keep reiterating the message to each generation that they have to be careful and have to be tested and protect themselves. I know the AIDS Foundation works really hard to get the message out,” he said.

“It’s a different disease now,” said Jones. “It’s survivable. It’s livable, but it’s the last thing I want any kid to have to deal with.”

The mother-to-child transmission statistics show there was only one in 2018.

It’s a number that has steadily declined over the years. There was one mother-to-child transmission in 2015, out of 54 births, to HIV-positive women.

In 1995, statistics show that 30 percent of HIV-positive mothers gave birth to children that were HIV-positive.

The foundation president attributes the downward trend in positive births to the fact that it is one area that can be easily controlled. Once a female opts for prenatal care during pregnancy, and once tested, the expectant mother can be put on medications that have to be taken early in pregnancy.

Barnett heads the foundation which focuses on education and awareness, and said education continues to be key in getting out the message of HIV/AIDS prevention and living with the virus.

Jones also encourages people to know their status by getting tested, and if positive, to get on treatment and trust their doctor.

“They figured it out and can now make this a survivable chronic illness where you sometimes take as little as one pill a day, and you don’t get sick and you don’t pass it on.

He applauds the Bahamian infectious diseases medical community from Dr. Perry Gomez to Dr. Nikkiah Forbes, who he said he’s a huge fan of.

“I didn’t expect to see 35. When I was diagnosed, I was 31. And I see what’s going on now with COVID and I hope people realize we have a good health team and that they did a great job with HIV/AIDS. We had a world-class health team that has worked for decades. I remember the days when the nurses and doctors were stigmatized because they were dealing with the patients. They persevered through all of the misinformation and disinformation,” said Jones.


Stigma

While he had to learn to live with HIV/AIDs in the days of rampant stigmatization as people learned about the virus, he said stigmatization still exists today, but he deals with it differently than when he was diagnosed.

He said it helped when he learned to “open up” about his diagnosis.

“The big thing for me in dealing with stigma is being open. Once I was talking about it and being proactive, it really didn’t matter what people thought anymore. I think the stigma … a lot of it comes from having a terrible secret you can’t share with anybody. What also helped was getting involved with groups and being able to share, and it wasn’t a burden anymore.”

While he was in New York and Boston, he says he availed himself of social organizations that helped him process.

“Do not try to keep it entirely to yourself. Try to find someone you can share it with, because it will be harder to bear.

The stigma is really counterproductive because I think it was very strange the AIDS epidemic started and was associated with homophobia and people who were marginalized. It was really brutal to live through that. Those were the days when there would be a child who would  be completely innocent being born with it, or through hemophilia, … that was really brutal. It took people a long time to care, so it was really scary.”

He recalled hearing reports coming out of The Bahamas of people getting tested and lists being sent around trying to ruin people’s lives.

“It got too heavily weighted, so it got hard for the health professionals to find the people who needed the help and the people who needed the help to access it. The stigma is still going on, and I’m willing to talk to anybody who is newly diagnosed and wanting to talk to somebody. I understand that these days it’s not a death sentence which it was thought to be in the early days. And that in itself was really hard to bear. It took a lot to keep a door open to the possibility of life. And I don’t want people who are getting infected now, or tested now, to think it’s a death sentence.”

Today, Jones said he doesn’t think about HIV/AIDS and the stigma attached to it too much.


Support

In getting to his mindset of today, he said it also helped that he had a supportive family who traveled to New York to bring him home. His concern at the time was of them becoming infected.

“I came home sick in a wheelchair. I had lost a lot of weight and was weak, and not expected to survive. And at the time, I didn’t feel comfortable with people in The Bahamas knowing I was positive. I was afraid of my friends finding out.”

He remembers there being a lot of “ignorance” surrounding the virus upon his return.

“It was called the gay disease. It wasn’t how I was infected. I’m not gay,” said Jones. He said he has always been heterosexual, but because the disease was considered a “gay disease” he said he had a hard time.

In The Bahamas today, there are three high-risk groups – young people, sex workers, and men who have sex with men.

When Jones returned home, he said everything changed with the new medications that came out and the fact that he “released the stigma” by talking about his AIDS diagnosis.

He also got involved with organizations like the Bahamas AIDS Foundation, doing education and outreach.

“I said I would talk to anybody because I was concerned people were infected and living with HIV who didn’t know it and didn’t know the new medications were a game changer. Now I live on Cat Island down a dirt road in a house I built myself. Until the new medications came out, I was afraid to live more than a taxi road from a hospital. Now I get my medications on the mail boat, due to COVID.”

Despite the Ministry of Health’s success in fighting HIV/AIDS, Barnett said people have become too lax because they think there’s a cure, when there isn’t. She said people need to come to the realization that changing behavior patterns is important.

A concept introduced by the UN’s (United Nations) program on HIV/AIDS in 2013, focuses on a 90-90-90 set of goals. The idea is that by the end of 2020 – 90 percent of people who are infected will be diagnosed, 90 percent of people who are diagnoses will be on antiretroviral treatment, and 90 percent of those who receive antiretrovirals will be virally suppressed.

By 2030, the aim is 95-95-95.

World AIDS Day was recognized globally on December 1 under the theme “Global Solidarity. Shared Responsibility” – a theme which the AIDS Foundation president said is on the mark because everyone has to get involved.

“It’s not just The Bahamas, everywhere in the world is experiencing the same concern. We have to come together to fight this disease and share responsibility in terms of protecting ourselves, our partners, and not discriminating against HIV-positive people,” said Barnett.

The first case of HIV diagnosed in The Bahamas was in 1983, two years after the first case was described in the United States in 1981.

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Shavaughn Moss

Shavaughn Moss joined The Nassau Guardian as a sports reporter in 1989. She was later promoted to sports editor. Shavaughn covered every major athletic championship from the CARIFTA to Central American and Caribbean Championships through to World Championships and Olympics. Shavaughn was appointed as the Lifestyles Editor a few years later.

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