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Living with HIV for 17 years and coping

Positive man and girlfriend still hoping to have children

BY NAZMA MULLER
Sunday Observer writer
editorial@jamaicaobserver.com

Sunday, December 03, 2017

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THE first thing John does when he opens his eyes in the morning is to thank God for life.

“I always did — even before I was diagnosed with HIV,” says the 35-year-old. The St Ann native is even more grateful now, though, because last year around this time he was in hospital.

“I was down, real down. I thought I was gone. I actually gave up on myself. My doctor gave up on me.” He couldn't find any medication to give John who was very thin due to chronic diarrhoea. He was eating, but nothing would stay in his system.

His great-aunt came to visit him one day and he told her that the doctor had given up on him. “She just smiled at me and said, 'John, when people are going to die I myself can see it in them. I don't really see death in your eyes.' And she asked me to pray. As soon as she left I prayed for an hour then I went to sleep.”

Usually the diarrhoea would set in around 11:00 pm. That night, when it was around 11:00 pm, John waited with dread, but no diarrhoea. All night he kept expecting the diarrhoea to strike, but nothing happened. In the morning he woke up and still, nothing. “I get up and I said, 'Thank you, Jesus'.”

When the doctor came that morning and asked if he had had diarrhoea, John told him no and that he wanted to go home. He had been at the hospital almost a month by then. The doctor asked him if he was sure about that. “I told him yes. I didn't want to spend Christmas in the hospital.”

He asked John to stay another day to see what happened. The next morning, still no diarrhoea. “So he signed the discharge form and I left and went home… struggling, struggling, struggling — till I'm back again. Even stronger than before.”

His faith and those words of support from his great-aunt were what brought him back from the brink. “You see, my auntie just gimme that strength,” he nodded.

His case worker at Jamaica Aids Support for Life (JASL) programme is another role model who encouraged him a lot and prayed with him. An aunt living abroad and his mother and her church family also prayed for him. “That build up me confidence and give me strength,” John said. “So right now, me living with HIV and no fear. It nuh really matter what people say. I know I was not careless.”

He was diagnosed when he was 18 years old and had just started having sex. He met a girl, and being na´ve and ignorant about sexually transmitted diseases and HIV, he had sex with her without a condom. She subsequently died from AIDS.

“I've had pneumonia four or five times and God bring me back,” John mused. “So I have no fear of people mouth anymore. I'm just trying to live my life, take care of myself, eat my good food, live my normal life same way.”

He doesn't know how news of his HIV status got out — he suspects someone at the hospital might have leaked what should have been confidential information. From the way people talk, dropping words and snide remarks, he knows that they know he has the condition. “Even last week one of my co-workers said something about my relationship. My girlfriend is positive too. He said something about how me deh deh wid some AIDS gal. Me feel a way, yes, but those things don't really matter me anymore. One time I was afraid of camera and talking to people. Now me nuh care. I'm living alright! Even my aunt at my house don't discriminate against me. We eat from the same plate and use the same glass. Recently I used a glass and I rinsed it out and she said, 'So why yuh a rinse it out? Yuh nuh feel say me can get some germs from yuh cup — and you and me a live in here.' It jes' brim me heart eenuh.”

His aunt is a woman who reads a lot, he says, and she knows that she can't catch HIV from using the same utensils. She has attended literacy sessions at JASL, where they educated the loved ones of those living with HIV so that they can offer support and understand the disease.

When he was younger, he says, he was foolish, changing girlfriends every three months. Now he is more caring, more understanding. He used to get angry if he knew a man was gay. “I would want to cuss him or tell him something. But being in this programme has taught me a lot. The training has helped me to understand gender and people. Discrimination — me try not to listen to it most of the time.”

Women say that discrimination affects them more, he contends, “but we feel it same way and it's the same discrimination we face.” Education about sex and sexually transmitted diseases needs to be made even more widely available, he believes, not just in schools, but in the churches, organisations, companies, everywhere in Jamaica, so that everyone has the knowledge it takes to protect themselves.

He got together with his girlfriend, Candy, after they attended a seminar at JASL.

Candy is 32. She found out she has HIV positive after she took sick and was admitted into the hospital two years ago. She went back and forth for three months as the doctors ran tests. At first they believed she had a lung infection. She was on drips because everything she ate she vomited. Her hands were swollen from the needles for the drips and injections. Finally, the diagnosis was in. When her mother came to visit her she said, “Mom, I'm an abomination.” But her mother said, “No, you're not. Things do happen to people. You don't know how you contract it so don't say that about yourself.”

She went home and told the family. “When I go home, I think they would reject me, but when I got home they welcomed me, all of them.” She eventually found JASL and they have educated her about the condition and helped her to start planning for the future. She attends business management classes with the aim of opening her own ice cream shop at her home.

Her message to others living with HIV: “You shouldn't be depressed because there is life after HIV. Because if you don't believe in yourself, you won't have life. It's better you have this than cancer, because cancer takes you down quickly. There is a treatment for this sickness. You have to be open-minded, get understanding from someone and respect yourself. And tell others that they can help you and help you to cope with it.”

It used to bother her that she had HIV, but when she wakes in the morning she thanks God for sparing her life. She is grateful to be with someone who is also HIV positive. “It's better that you be with someone who also has the sickness so they can understand and give you encouragement.”

Candy has a 17-year-old son who helps her take the medication. When she used to throw up he would encourage her to keep trying to take her medication. “He's been there for me,” she smiled.

John and Candy would like to have children one day, and it is now possible for them to do so without passing on the virus to their kids. On Friday, World AIDS Day, six other Caribbean countries joined Cuba in being validated for having eliminated mother-to-child transmission of HIV and syphilis. Jamaica was not among them. However, it is possible that within the next two to three years the country will achieve the milestone. Jamaica must be certified as having met the regional goal of having a transmission rate of less than two per cent for two consecutive years.

Cuba became the first country to be validated for having successfully eliminated mother-to-child transmission of HIV and syphilis in 2015. According to the World Health Organization, eliminating mother-to-child transmission of HIV and syphilis is key to the effort to combat sexually transmitted infections and to end AIDS by the year 2030.

An estimated 310,000 people are living with HIV in the Caribbean region. Last year, for the first time, more than half of them were accessing antiretroviral therapy.

The United Nations has set 90-90-90 treatment targets which are essential to ending the AIDS epidemic. The goal is to have 90 per cent of people living with HIV knowing their status, 90 per cent of diagnosed people on treatment, and 90 per cent of people on treatment with an undetectable viral load by 2020.

Jamaica is doing well in terms of the first 90 — at the end of 2016 the country stood at 88 per cent. The other two 90s really relates to people who are not in care and not on treatment. The issue of stigma — whether internal or external — and discrimination continue to impact whether or not people remain in care.

The third 90 relates to viral suppression and medication adherence, which is a challenge for Jamaica because culturally this is not a pill-taking nation. About 60 per cent of those who are on treatment are virally suppressed. Men who have sex with men comprise the highest rate of new infections. They and sex workers still have to deal with issues of discrimination in their communities.

Married women or people who believe that they have one partner are even more at risk than those who are deliberately engaging in casual sex with multiple partners because the former don't use condoms, while the latter do.

UNAIDS Latin America and Caribbean Regional Support Team Director Dr CÚsar N˙˝ez has stated that between 2010 and 2016, the number of AIDS-related deaths in the region fell by 28 per cent. Late diagnosis remains a challenge in several Caribbean countries, particularly for men. For the region as a whole, one in five people diagnosed with HIV is not accessing treatment. And, in 2016, one-third of those on treatment were not virally suppressed (33 per cent).

“The issue of prevention also requires our urgent attention,” he said. “Over the last six years there has been no decline in the rate of new HIV infections in the Caribbean. We know that we cannot just treat our way to the end of AIDS. In order to close the chapter on this epidemic we must also dramatically stem the tide of new infections.”

This involves implementing combination prevention packages with a range of measures tailored to local epidemics. But key to this is finding out which groups are most at risk in the respective countries — and this could be youth, men who have sex with men, women who believe themselves to be in monogamous relationships, men who feel too macho for condoms or HIV tests, transgender people, drug users, men in prison, among others. Identifying at-risk groups is critical to the fight.


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