Positive future for the HIV-positive

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It’s been 30 years since the virus causing AIDS was discovered. In this time we
have come a long way to combat the spread of HIV and prevent deaths caused by it.
Coral Williamson looks at our achievements over this period and the next steps
needed to ensure a HIV-negative future.

Introduction

I n the 1980s a new deadly disease began to spread like wildfire. Acquired immunodeficiency syndrome (AIDS) was weakening victims worldwide, who were then claimed by rare opportunistic diseases, and medicine was powerless against this killer. In May 1983, two different medical research teams both submitted their independent discoveries of the virus which they each believed caused AIDS, to the journal Science. Both papers appeared in the same issue, Dr. Luc Montagnier’s team in France naming the offending virus lymphadenopathy-associated virus (LAV); and US-based Robert Gallo and his team calling theirs human T lymphotropic virus type III (HTLV-III). Within a year, it was shown that both teams had identified the same culprit, and in 1986 the name human immunodeficiency virus – HIV – was adopted.

Since the first cases were reported in the early 1980s, it is estimated that more than 25 million people worldwide have died of AIDS. The Health Protection Agency states that by the end of 2011, an estimated 96,000 people were living with HIV in the UK, including 22,600 who were still undiagnosed.

While those numbers seem large, the treatment of HIV has come a long way in the last 30 years, and it is no longer the death sentence it was once. Many early cases of AIDS manifested as rare strains of pneumonia and unusual cases of cancer that originally baffled doctors. Over the years, they were discovered to have been mere symptoms of the underlying lowered immunity of the patients, and a cocktail of carefully developed drugs has since extended the life expectancy of someone with HIV to decades, from the few short months it once was.

HIV-research hit a huge milestone in 2007. The Berlin Patient – also known as Timothy Ray Brown – was the first person to be reportedly functionally cured of HIV, following a blood stem cell transplant. Dr Gero Huetter, a blood cancer expert working at the University of Berlin, was treating Mr Brown’s leukemia, when he saw an opportunity to hit two birds with one stone and sought a donor with a particular genetic mutation which was resistant to HIV.

Although skepticism still remains about whether the patient was truly cured of HIV, his longevity speaks for itself. Such a method isn’t necessarily viable for most people, but its existence paid testament to the fact that treatment for HIV was reaching new heights.

Fast-track to 2013, and we have already seen a baby ‘functionally’ cured of HIV through very early treatment, an approach which was later echoed by French researchers who treated a group of patients known as the Visconti cohort and found that early treatment could control the virus without the need for drugs in between five and 15 percent of cases. This May, Danish researchers began testing a new technique using histone deacetylase (HDAC) Inhibitors to treat HIV.

Social attitudes to HIV have also begun slowly changing; once considered a disease for homosexual men or drug addicts who risked becoming infected through their lifestyle choices, statistics and research have helped people understand and accept that this is not the case. In 1999 in the UK for the first time heterosexual intercourse accounted for a greater proportion of the HIV diagnoses than men having sex with men (MSM), at around 1,500 presented cases. In 2004 the diagnoses from heterosexual intercourse were at an all-time high of just under 5,000, whereas MSM cases were almost half of that, and by the end of 2011 both had dropped to below 3,000.¹

Slowly but surely people were realising that HIV is neither as contagious as feared nor something only those with certain interests was susceptible to. Between 2011 and 2012, the Special Immunology Services (SIS) clinic at McMaster University Medical Centre registered 478 new patients, 36 percent of whom were women. That was a six percent rise from the previous year, and compared to 1996, when women accounted for just nine percent, was a big jump.

“We’ve seen a dramatic increase in HIV rates among women,” says Dawn Elston, who was a research co-ordinator at McMaster University for 12 years and worked on a cohort study with the Ontario HIV Treatment Network. “We’ve seen the epidemiology change and women are quickly catching up.”

In the UK, the numbers of men diagnosed with HIV have been higher than those of women since the 90s, and has remained so to date. The statistics by Avert, International HIV & AIDS charity, do however, show that numbers peaked for women around 2003 at around 3,250 cases, and have declined steadily since.¹ A lack of education coupled with risk-taking behaviours in younger generations could account for the spike in the UK, but reasons differ between cultures and countries.

Elsewhere in the world, the numbers of HIV-positive women are still increasing for a variety of reasons including lack of available education and information, a difficulty for women to demand the use of protection from men in some cultures, a higher susceptibility to the virus through heterosexual intercourse in women than men, and violence against women.

Luckily the advances in HIV medicine mean that both men and women can not only be treated for HIV, but women do not have to give up their dreams of living a full life or having a family. “HIV is relatively well managed today. Women with HIV are now actually considering motherhood,” says Elston.

Dr Andrew Lingen-Stallard qualified as a midwife in 1988, and has just completed his PhD in Midwifery, in which he focused on the experiences of women who are diagnosed as HIV-positive during pregnancy. He was also appointed by the Health Protection Agency in November to the United Kingdom Advisory Panel for Healthcare Workers Infected with Bloodborne Viruses, including HIV, in recognition of his expertise in the area.

“I haven’t had an infected baby for a long time,” he says. “You get them because patients either come to you too late, or they weren’t diagnosed. But the majority don’t get infected babies; they take the tablets. We test all women; they have to opt-out if they don’t want to be tested. We tell them, ‘We are testing for HIV, you know what HIV is. It could come back positive; if it does, don’t worry, it’s treatable.’

“What we need to get across is: You’re not going to die. Your chances of having an infected baby are very, very slight, because the treatment really suppresses the virus, and that’s triple therapy,”explains Dr Lingen-Stallard, referring to highly active antiretroviral treatment (HAART).

“Those three drugs make a big difference. It suppresses the virus, it stops it in its tracks in effect, and it stops it replicating. By doing that, people become non-infectious in lots of ways. Their baby’s inside them for nine months, and they don’t get an infected baby.”

With such success in medicine which can halt the spread of the virus between sexual partners and between mother and baby, why hasn’t HIV been eradicated? The limited availability of treatment in developing areas is certainly a reason, but one which is always under scrutiny and pressure to change from HIV and AIDS charities and organisations. However a silent handicap to ending the transmission of AIDS, which usually escapes attention, is stigma.

Lingen-Stallard recalls interviews he conducted with HIV positive pregnant women as part of his PhD research, and the stigma they faced. “It was very disempowering,” he said. “A lot of them were rejected by their partners and family. We did an in-depth interview of 13 women who’d been infected, and it was quite distressing for them, but in the end, they became very resilient.”

Throughout the world, the stigma associated with HIV is alarmingly common, but its manifestations do differ. It ranges from being considered weak, and therefore a ‘burden’ on society in some areas of Tanzania, to being ostracised from your community and rejected by your family, to being labelled promiscuous, an IV drug user or a sex worker in more Westernised areas where these are common ways for women to acquire the virus. Preliminary results from International Planned Parenthood Federation presented by Avert, showed that: “Seventeen percent of respondents living with HIV in the UK had been denied healthcare and verbal harassment or assault had been experienced by 21 percent of respondents.”¹

A HIV-positive woman from London spoke to Avert and described a complete change of attitude towards her from her NHS dentist, who, after finding out about her status, told her she must be the last appointment of the day, had covered over the chair and the light in his office and was wearing three pairs of gloves when treating her.²

Discrimination and abuse have an indirect hindering effect on the battle against HIV, as it undermines the effectiveness of even the most ground-breaking treatments by strongly discouraging people to get tested and begin a course of anti-retroviral treatment (ART), for fear of their status being found out by others. A systematic review by Katz et al presented at the 8^th International Conference on HIV Treatment and Prevention Adherence in June 2013, showed that within the 40 quantitative studies analysed, 60 percent showed that stigma worsened ART.³

This disinclination to participate in treatment is even more problematic in pregnant women, who are then at risk of passing the infection onto their baby. A blog for PLOS written by guest authors Søndergaard et al, describe that the fear of being stigmatised prevents a large number of women from getting themselves tested or attending prevention of mother-to-child transmission (PMTCT) services in some areas of Africa where intervention is desperately needed but the prevalence and severity of stigma is very high.⁴

A literature review of over 150 studies, authored by Janet Turan of the University of Alabama at Birmingham, and Laura Nyblade of RTI International and the Health Policy Project, also found strong evidence that HIV stigma discourages the use of life-saving treatments and programmes by pregnant women for fear of their status being made known to their communities.⁵

A spokesperson for Avert, Caitlin Mahon, said: “Stigma not only makes it more difficult for people trying to come to terms with HIV and manage their illness on a personal level, but it also interferes with attempts to fight the AIDS epidemic as a whole. On a national level, the stigma associated with HIV can deter governments from taking fast, effective action against the epidemic.

“In the UK, more than two-thirds of people in a nation-wide survey felt there was a lot of stigma around HIV and one in three people living with HIV said they had experienced discrimination based on their status. What seems to be the problem here is a lack of knowledge about HIV and how it is transmitted.”

Lingen-Stallard is confident that one step towards alleviating discrimination is making people aware of the facts: “The health message that we need to get across is that HIV is a blood-borne disease; it is treatable. Your baby won’t get infected if you take your tablets. Your chances of infecting other people once you’re on medication are extremely low. Get tested. And challenge stigma – we need to really push that home. Stigma really stops people, they become isolated, they don’t go to their support groups, their churches. Their social contact goes down. They have low self-worth or depression.”

Fortunately in the UK, even with the difficulties of battling both HIV and stigma simultaneously, women getting themselves tested has come along leaps and bounds, and as a result, very few UK babies become infected in-utero. Genevieve Edwards, a spokesperson for the Terrence Higgins Trust HIV/AIDS charity, told the BBC: “[The functionally cured baby] is an interesting case, but I don’t think it has implications for the antenatal screening programme in the UK, because it already takes steps to ensure that 98 to 99 percent of babies born to HIV-positive mothers are born without HIV.” Edwards does add, however, that this potential cure may be of interest where a mother is diagnosed with HIV during labour.

Deborah Jack, the chief executive of the National AIDS Trust, is also enthusiastic about the progress towards a cure, calling it “exciting times,” but stresses that the key is prompt treatment. “This just underlines the importance of people being tested and diagnosed early. Currently half of people living with HIV in the UK are diagnosed late – indicating that they are likely to have been infected for five years.”

Speaking about what the future holds for HIV, especially considering this year’s advancements, Lingen-Stallard is remarkably upbeat: “I have great optimism for the future. We’ve already made great advances; there are cases that are coming forward saying people have cleared it. The immune system is a wonderful thing, and I think it’s something in the future we’ll be able to manipulate. I think we will be able to eradicate the virus, but it will take some further work.”

In the last 30 years research medical teams have been able to halt the virus’ progression with drugs, functionally cure a grown man and a newborn baby girl of the virus, understand the manner in which the virus is transmitted, support patients and educate people throughout the world.

There are still hundreds of researchers working to eradicate the epidemic, minimise the virus’ deleterious effects and find a full cure. Unfortunately it may be 30 more years of research or more until we are rid of this infection, but reaching the next big milestone – battling the social stigma of a positive diagnosis – is something which need not take as long and should be a priority for healthcare professionals working with HIV-positive patients.

Author

Coral Williamson, freelance journalist, Bristol, UK.

References

1. Avert, International HIV & AIDS charity, 2012. UK HIV and AIDS Statistics Key Figures. [online] Available at: www.avert.org/uk-statistics.htm [Accessed 17 June, 2013].
2. Avert, International HIV & AIDS charity, 2012. HIV & AIDS Stigma and Discrimination. [online] Available at: www.avert.org/hiv-aids-stigma.htm [Accessed 17 June, 2013].
3. Katz, T.,  Ryu, A., Onuegbu, A., Psaros, C., Weiser, S., Bangsberg, D. and Tsai, A. 2013. Presented at 8th International Conference on HIV Treatment and Prevention Adherence, June 2-4, 2013, Miami. [online] Available at: www.iapac.org/AdherenceConference/presentations/ADH8_OA225.pdf [Accessed 21 June, 2013]
4. Søndergaard, D., Hald, S. and Lazarus, J., 2010. PLOS blogs: Mother-to-child HIV transmission – stigma barrier to progress. [online] Available at: www.blogs.plos.org/speakingofmedicine/2010/05/20/mother-to-child-hiv-transmission-stigma-barrier-to-progress/ [Accessed on 21 June, 2013]
5. Turan, J., Nyblade, L., 2013. HIV-related Stigma as a Barrier to Achievement of Global PMTCT and Maternal Health Goals: A Review of the Evidence. AIDS and Behavior. [online] Abstract only. Available at: www.link.springer.com/article/10.1007%2Fs10461-013-0446-8. [Accessed: 21 June, 2013]

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