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Living with HIV from birth

Living with HIV from birth

Being born with a long-term condition is bad enough, but being born with a disease which you have to keep quiet about because of society's taboos is unimaginable to most of us. Such is the lot of the 1,200 or so children in the UK and Ireland who acquired HIV from their mothers, either in the womb or when breastfed.

Back in the day

Babies born to HIV-positive mothers did not usually survive for very long until medical research developed an innovative treatment in the 1980s. This medicine - then known as highly active antiretroviral therapy (HAART) and now just called ART - revolutionised the management of HIV-positive people.

"There was no treatment in the early days," said Dr Pat Tookey who used to manage the National Study of HIV in Pregnancy and Childhood (NSHPC). "The babies used to turn up with a symptomatic disease and die."

The introduction of HAART meant that the risk of an HIV-positive mother transmitting the virus to their unborn baby was reduced from 20-30% to under 1%. It also meant that HIV-positive babies could survive into childhood and indeed into their teens and beyond.

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Cloak of secrecy

This diverse group of young people has existed under a cloak of secrecy, their confidentiality fiercely protected by doctors.

Most are now in their late teens or early twenties and are showing no signs of being less healthy than their peers. Some are confident enough to talk about their experiences.

"I grew up very rarely telling people I was HIV-positive," said Andrew Pulsipher, who at 34 is thought to be one of the oldest perinatal HIV survivors. "Only a few family members outside of our immediate family and a couple close friends knew. This was to allow as normal a childhood as possible for me."

This created several difficulties. Children were not told their diagnosis until they understood the importance of confidentiality, which could be as late as the age of 8 or 9. Parents had to devise innovative ways of giving them medication without telling them what it was for.


Understandably, some children grew up resentful of the large number of tablets they had to take day in day out and got fed up with the side effects.

"It's like seven pills I'm supposed to take", said 21-year-old Siomara Cruz.. "If I take them in the morning, then when I get to work I'm just ready to hit the floor. But then I try at night, and I can't sleep because I'm so sick."

Others entered a period of denial where they just wanted to lead a normal life. The drugs were a constant reminder of their condition. These factors led them to stop medication when they had more autonomy over their lives.

Another complication is sexual risk taking. People born with HIV have to consider how to tell intended sexual partners that they have a sexually transmitted infection, even if they have never been sexually active before. This often comes at a time when they are losing contact with the paediatricians who have cared for them all their lives, and being transferred to adult services.

Hope for the future

Not all people born with HIV see it as a negative experience. Martha, aged 20, said that many opportunities opened up for her. "I have spoken at three international AIDS conferences, presented at three Children's HIV Association (CHIVA) conferences, met MPs, been a mentor to other young people born with HIV, and have written magazine articles for Positively UK (a peer-led support group for HIV-positive people across the UK)."

In some aspects, the future is optimistic. The NHS Infectious Diseases in Pregnancy Screening (IDPS) programme has resulted in a dramatic fall in the number of babies born with HIV. A new record low was achieved in 2012-2014, The proportion of pregnant woman passing on the virus to their babies was 0.27%, with only seven infected babies born in this period to women diagnosed with HIV.

At the same time, a child who had ART whilst a baby, followed by intermittent treatment, has been reported to be in long-term remission.

"It does raise the interesting notion that maybe treatment isn't for life," said Linda-Gail Bekker, president of the International AIDS Society. "But it's clearly a rare phenomenon."

No matter what advances are developed in the medical field in the future, the greatest change needs to come from society's attitude to HIV-positive individuals. People born with HIV mirror the same population profile as people who are HIV-negative. They do not want to be defined by their HIV status. They share the same hopes, dreams and aspirations. They want to fall in love, have a family and achieve financial security.

If society were able to view HIV positivity on a par with other long-term conditions such as diabetes and high blood pressure, this would help to remove the stigma and enable people to come forward to access the support they need and lead as normal a life as possible.

Prince Harry, launching the #FeelNoShame campaign in 2014 with singers Nicole Scherzinger and Paloma Faith, said that through education he hoped to improve awareness about the disease with a global target to end the AIDS epidemic by 2030.

"HIV needs to be treated exactly the same as any other disease," he said, "and between us hopefully we can eradicate the stigma and give these young people an opportunity to stand up."

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