With medication and technology, science is increasingly improving the lives of people living with HIV and reducing new infections.
On August 8, 2018, a day before Women’s Day in South Africa, 23-year-old Saidy Brown observed six years of being on antiretroviral (ARV) treatment.
We meet Brown in her hotel room in Benoni in the East Rand in the South African Province of Gauteng.
She sits still, reflecting on her life after a long and busy day. She has just returned from a group meeting with other young HIV activists.
Her t-shirt is unapologetic and as loud as her activism. “HIV POSITIVE #TEST & TREAT,” it reads. In the dim light of her room, she recollects her dark journey to becoming an HIV activist.
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Brown was diagnosed with HIV at birth. However, she only found out she had it at the age of 14.
Brown grew up in a small town called Itsoseng in the North West Province of South Africa. In June 2009, while attending a youth day event, Brown and some of her friends decided to get tested for free.
The eager teen received some pre-counselling from one of the nurses.
“I remember getting into that room and the lady asked me two questions, ‘what would you do if you find out that you are HIV negative’?”
“I would continue living,” Brown said.
“What will you do if you find out you are HIV positive?”
“I would go out there and educate people living with HIV,” she said to the nurse.
Brown tested positive. Her whole life changed in the space of five minutes.
“After she told me, the first thing I said was ‘how? I didn’t do anything, I am only 14’.”
While her friends were discussing their results, Brown broke the news to them. They were all surprised.
Saidy Brown’s t-shirt is unapologetic and as loud as her activism. “HIV POSITIVE #TEST & TREAT,” it reads. Picture: Karen Mwendera
“I then told them ‘no, I’m kidding, I am negative’.”
Brown was ashamed and could not confide in anyone.
“I really wanted to go home and cry. Like, I didn’t even know where I got it from,” Brown says.
She was afraid of what her family, friends and community would think of her. For months, she kept it to herself. But the secret about her health was too overwhelming.
Later that year, Brown joined a drama club. They rehearsed for a play to be staged on World AIDS Day, on December 1. She played the daughter of a woman who was HIV positive.
Little did her peers know that Brown was actually telling her real life story. A few days later, conversations with Brown’s drama teacher got her to divulge her secret.
She later gathered up the courage to confide in her aunt. Her aunt then revealed that Brown’s late parents had indeed been HIV positive.
“I was angry at my aunt for not having tested me earlier on, I was angry at my parents for having died before me knowing, I was angry at God, I was just angry at everyone,” she says.
She turned to writing to cope. The first piece she wrote was titled An Open Letter To HIV.
“I will always remember this line because I paused there and I cried so much. There is a line where I said, ‘because of you I feel less pretty’.”
This marked the beginning of her activism. She shared the letter on social media and it reached thousands.
For 14 years, Brown had lived a healthy life with the disease without any treatment. Brown disclosed her status to close friends and received huge support.
It was only when she turned 18 that her health began to deteriorate. Hesitant to start treatment, Brown thought about the rumors she heard about the side-effects of ARV.
When she went for blood tests, she was told her CD4 count had dropped. According to experts, when the CD4 count drops below 200, a person is diagnosed with Acquired Immunodeficiency Syndrome (AIDS).
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“I think that was when reality started kicking in that ‘you need to be on treatment’,” she says.
In 2012, she finally started ARV treatment. Since then, Brown has been living a healthy life
She uses her experience to encourage others living with HIV and to break the stigma. In June 2017, she recited An Open Letter To HIV at the eighth South African AIDS Conference addressing HIV/AIDS and gender-based violence.
She held governments and societies accountable.
The same year, she received the Red Ribbon Foundation Youth for Change HIV/AIDS Activist Award.
In 2018, she was recognized as one of the Mail & Guardian 200 Young South Africans, for her work as an activist.
Brown considers herself an “HIVictor” and reaches thousands on her social media platform spreading awareness about the disease.
“There is life after an HIV diagnosis,” Brown shared with her followers on Twitter.
HIV-Undetectable
Today, Brown is HIV-undetectable.
She has been virally suppressed for two years now.
According to a report by UNAIDS in 2018, being undetectable means that the virus is un-transmittable.
This means that people who are HIV positive with an undetectable viral load cannot transmit HIV sexually.
This was proven in 2017.
Dr Sindisiwe van Zyl is a clinician and general practitioner with a special interest in HIV and women’s health.
She also uses her social media to spread awareness on the disease.
“The aim of ARV treatment is to achieve an undetectable or suppressed viral load. What is the viral load? It is the number of HIV copies in the blood. HIV uses CD4 cells to make copies of itself. If one is taking ARV treatment, the efficacy of the treatment is proven by an undetectable viral load. You’re still living with HIV, but you’re taking the treatment so well that the virus cannot make copies of itself,” she tells FORBES AFRICA.
“The viral load blood test tells us when undetectable levels have been reached and it takes 12 to 24 weeks to achieve this,” Van Zyl says.
Three significant studies were done between 2007 and 2016 on sexual transmission of HIV among thousands of couples.
According to UNAIDS: “In those studies, there was not a single case of sexual transmission of HIV from a virally-suppressed person living with HIV to their HIV-negative partner.”
“For many people living with HIV, the news that they can no longer transmit HIV sexually is life-changing. In addition to being able to choose to have sex without a condom, many people living with HIV who are virally suppressed feel liberated from the stigma associated with living with the virus,” UNAIDS says.
However, the stigma still does exist.
A 28-year-old millennial, who requested not be named, tells FORBES AFRICA that she had never heard of what it means to ‘undetectable’.
When asked if she would be willing to have sexual relations with someone who was HIV positive but their viral load was undetectable, she says she is unsure.
“I would but I would be worried because mistakes happen. What if medical practitioners thought it was undetectable but they made a mistake and now my life is at risk,” she asks.
She is not alone in thinking this way.
From a quick social media search, it is evident many users are not well-informed about what an undetectable viral load means.
Some social media users who disclosed to be living with HIV said that even their own doctors had not informed them about what it meant to be ‘HIV undetectable’.
Through hashtags such as #UequalsU and #UndetectableEqualsUntransmittable, awareness around being ‘HIV undetectable’ has spread globally, giving freedom to many HIV positive people to share their status.
“[These are] the hashtags of the century, in my opinion! What does #UequalsU mean? If the viral load is undetectable, then one cannot transmit HIV!” Van Zyl says.
It is such activism that has contributed to the strides in HIV research.
A doctor from the Wits Donald Gordon Medical Centre in Johannesburg agrees.
“I think that’s what makes the HIV space unique. Those activists are crucial… When patients talk, they talk as if they don’t have a voice, but with the activists, they have a voice and they are taken seriously and I think that has also been one of the big drivers,” Dr June Fabian, a nephrologist and clinical researcher at the medical center, tells FORBES AFRICA.
Transplanting to save a life
Two years ago, doctors from the transplant unit at the Wits Donald Gordon Medical Centre performed what is believed to be the world’s first HIV positive liver transplant.
Currently, the center is the only transplant program doing transplants from one living person to another in southern Africa.
The liver of a mother living with HIV was transplanted into her critically-ill HIV negative child.
After the transplant, the child was monitored and the doctors were not able to find HIV within the child’s system.
The child had been on a waiting list for more than 180 days and was frequently admitted for life-threatening complications of end-stage liver disease.
Professor Jean Botha led the procedure.
He was approached by the child’s mother to consider using her as her baby’s donor.
“We have had a case where we proposed the idea but the mom said, ‘I cannot live thinking that I’ll give HIV to my child’, and she said ‘no’, and the baby died,” Fabian, who was a part of the team, says.
It was a very complex situation.
They reviewed the implications of the transplant, consulted with other experts and then spoke to the ethics committee at the University of the Witwatersrand (Wits).
“They came back and said, ‘if you are weighing up this child dying versus giving the child HIV then do it because, obviously, you want to prevent the child from dying’,” Fabian explains.
With the go-ahead, the team proceeded with the operations and assumed that the child would have the virus after the procedure.
But their assumptions were wrong.
“After the transplantation, we saw a seroconversion event. What that means is that the child became HIV positive,” Professor Caroline Tiemessen from the Wits School of Pathology and Centre for HIV and STIs, National Institute for Communicable Diseases, said in a report.
Soon after, they observed that the virus was no longer detectable. They then monitored the child’s antibodies and tested the viral load, however, she said it has remained undetectable since.
They have since not been able to trace the virus within the cells of the child.
“The liver is an immune organ so it’s the liver’s job to kill bugs… so I think in a way we might have struck it lucky with the liver. I don’t know if we can say what happened here is going to happen with a heart, a kidney or a lung,” Fabian says.
Despite not being able to detect the virus, the child was placed under ARV treatment.
Fabian says the only way to know for sure that there is no HIV in the child is if they completely stop treatment.
However, it would be a risk.
In 2017, a similar case was announced where a nine-year-old South African who had been diagnosed with HIV at a month old, received treatment, and then maintained remission after suppressing the virus for almost nine years without the treatment since 2008.
It has been more than a year since the liver transplant took place and both the mother and child are recovering well.
According to Fabian, they plan to continue doing more tests.
HIV Positive: The New Living Donor Pool?
At a time when South Africa is experiencing a shortage of organ donors, this may be a solution to the problem if people living with HIV may be able to donate organs.
In the early 2000s, Fabian’s work dealt with organ transplants and HIV before ARVs were created.
“We started seeing the disease untreated, and there was a lot of kidney disease so that was what sparked my interest and I started a study in the clinic with patients with HIV and kidney disease,” she says.
However, HIV patients back then were excluded from transplantation.
“We were basically throwing away organs from HIV-positive donors because we weren’t using them,” she says.
With a shortage of organ donors, Fabian says they lost 25 children on the waiting list.
According to an article by theSouthAfrican.com, there are around 4,300 people waiting for organ donations in South Africa in need of new livers, kidneys, lungs or hearts.
“The inclusion of HIV-infected people as living donors created the new living donor pool,” say experts from the Wits Donald Gordon Medical Centre.
This means that people like Brown who have been living with an undetectable viral load could be eligible as donors after tests have been done.
As for whether or not HIV-positive patients could potentially become blood donors, more work needs to be done in that field.
At the moment, Fabian does not think it is possible.
“I don’t know if you would put someone on life-long antiretroviral for a blood transfusion. I don’t think the benefit outweighs the risk when you can source blood from non-infected donors and the person isn’t going to die if they don’t get the transfusion,” Fabian says.
The evolution of ARVs
The first ARV treatment trial happened in the 1990s and in 2004, South Africa first rolled out its ARV program to people living with HIV.
ARV treatment has gone from taking several tablets a day to one pill daily.
Now, patients, particularly in South Africa, can receive free treatment.
According to a report on HIV and AIDS financing by the South African Health Review, South Africa has the largest number of persons living with HIV and on ARV-treatment in the world, with this figure scaling up by approximately 400,000 persons per annum.
UNAIDS estimates there are 20% of people on ARV therapy globally.
HIV-related deaths have been decreasing as the number of people receiving ARVs is growing.
In 2008, the death rate was about 220,000 to 260,000 in South Africa.
In 2016, estimates between 96,000 to 140,000 of AIDS-related deaths in the country were reported.
“I think what is underappreciated is how much people’s lives have changed with ARVs and with access to ARVs and how much the science and the funding with ARVs has driven it from being a very complicated regimen to one tablet a day,” Fabian says.
And now, access to obtaining ARVs has become easier and they are getting smaller.
“The tablet is getting smaller and smaller, which is great for storage, great for carrying, makes it cheaper, it’s also easier to swallow,” says Professor Francois Venter, the Deputy Executive Director at the Wits Reproductive Health and HIV Institute.
Last year, South Africa saw the introduction of an ATM which uses electronic and robotic technology to dispense medication.
This allows patients to collect medication without having to queue at hospitals.
On the continent, clinical trials of injectable ARV drugs are currently underway.
This is part of a large-scale trial that will be conducted in six other countries –Kenya, Malawi, Botswana, Zimbabwe, Uganda and Swaziland.
According to a news report in The East African, the aim of the study is to introduce an injection once every two months.
“They are starting to work on a new implant. It is very early days but it is very, very exciting. So instead of taking your ARVs you just get an implant every year,” Venter says.
“ARVs are looking more and more like hormonal contraception … It is like having several choices.”
He predicts that they will become available in the next five to 10 years.
Other new developments include the HIV vaccine trial (please read more on pages 44-47).
As HIV research grows rapidly, Fabian says that other chronic disease studies can gain from its developments.
“If you look at how we manage TB [tuberculosis], there is very little progress that has been anywhere as rapid as HIV, in terms of making treatment accessible and simple for people,” Fabian says.
Venter agrees: “The funny thing is people with HIV are now living longer than the general population in certain spaces.”
A study in the United States found this to be true.
In 2014, an estimated 45% of those HIV-infected were older than 50, amounting to 428,724 people, while 27% were older than 55 and 6% were 65 and older, according to the Centers for Disease Control and Prevention.
However, more work still needs to be done in this regard.
Venter says that technology has significantly aided HIV research.
“There are new ways to measure HIV which are getting more available and the price is coming down,” he says.
“There are also new ways for testing for HIV which are very exciting.”
“Because the cost of antiretrovirals has gone down so dramatically, HIV is actually relatively cheap to treat, compared to diabetes,” he says.
“It also keeps people away from the medical system which is very expensive,” he adds.
Despite the great strides taken to improve HIV treatment, a cure is still nowhere to be found.
“I think we are getting closer [to a cure] with vaccines,” Fabian says, hopeful.
Venter, on the other hand, believes we are still far from discovering a cure.
“I am not particularly hopeful because I think the scientific challenges of it are so hard that I am not sure it is going to be possible, but I hope I am wrong,” Venter says.
He says that there have been large amounts of money diverted to looking for a cure and that we are learning more about the immune system.
“Even if we may not find a cure, we are going to learn a lot about vaccines and the complexity of the human body,” he says.
For now, the importance of spreading awareness is still essential. Activists like Brown and Van Zyl can attest to that.
The world has gone from a deadly epidemic, to undetectable victories and vaccines in three decades.
We are witnesses to history in the making. Where will you be when a cure is found?
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