HIV 'progress is stalling' says Royal Free doctor who consulted on It's A Sin

Prof Margaret Johnson, the Royal Free's first HIV specialist, helped advise the makers of Channel 4's It's A Sin

Prof Margaret Johnson, the Royal Free's first HIV specialist, helped advise the makers of Channel 4's It's A Sin - Credit: Royal Free NHS / PA / Channel 4

When the Royal Free's Prof Margaret Johnson became the hospitals first dedicated HIV consultant in the late 1980s, she was blazing a trail not just locally but across the country as doctors struggled to understand the lethal disease.

Prof Johnson is still passionate about pushing for better treatment for HIV and decreasing the stigma around it.

She advised the director behind the Channel 4 drama It's A Sin about what the height of the crisis around the disease was like in the 1980s and 1990s. 

And with Covid-19 highlighting the power of vaccine technology, she is hopeful there could be renewed impetus in the search for a HIV vaccine.

"My memories of that time are of a lot of very young sick people," she told the Ham&High. "10% of patients in the clinic at the Royal Free died every year. There have been such dramatic changes since then, but HIV must not be forgotten – 38 million people are living with HIV worldwide, seven million are unaware of it. 15 million are not suppressed. In 2019, there were 1.7 million new HIV infections diagnosed. Progress is stalling."

At the Royal Free the contaminated blood scandal had seen haemophiliacs infected with HIV, and this meant that in the early years of the disease, the hospital had more positive patients than in most. 

Prof Johnson was appointed to develop what HIV treatment would look like in a time when knowledge of how the disease worked - and how it would progress - was scarce. She said her aim was to create offer "holistic" care for people who were severely, and to do so in a way which wasn't hidden away. 

It's A Sin won huge acclaim for its candid portrayal of the HIV crisis

It's A Sin won huge acclaim for its candid portrayal of the HIV crisis - Credit: PA / Channel 4

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"It was such a hugely tough time for patients," she said. "There was a culture of silence and fear and that definitely led to more deaths." 

Asked why she thinks progress in HIV care is stalling, Prof Johnson said: "I would say it's because lack of resources and changing priorities. Most of those infections are in low income countries where those pressures are still huge."

Prof Johnson said the progress made in HIV care over three decades had been dramatic. 

"Patients who are diagnosed and on anti-retroviral treatment can have an almost normal life expectancy. If I look at a 25-year-old diagnosed with HIV, their life expectancy is probably nearer to 80. If I look at someone diagnosed in say 1985, life expectancy was 34 or 35. 

"It's all down to diagnosing early and getting patients on to treatment. The exciting thing about getting patients onto treatment is that if they're undetectable they're untransmittable.

"In the early days you would be seeing patients with opportunistic infections often unable to work, unable to tell their families about their diagnosis. There are a lot of patients living with PTSD (post-traumatic stress disorder), either simply from having been very unwell themselves and facing death, or from witnessing others in that situation."

The doctor said she felt deeply about helping people who were diagnosed with HIV in the early days. 

"What I feel very passionately about is patients with HIV long term, those who are maybe ill because of the consequences of having been positive for such a long time or often due to the drugs used in the early days, that they get wraparound care," she said. 

"They want their care in one place, and so the role of a HIV doctor has evolved to be that of a general practitioner in many ways."

Prof Johnson had a particularly interest in women with HIV, which she said was a less visible group at the start of the HIV crisis.

"The needs of women with HIV are slightly different," she said. "Sexual health for women has different needs around contraception and, for example, around the need for regular cervical screening. Cancer of the cervix is much more common for those with HIV." 

But Prof Johnson said: "We are a long way from a cure or a vaccine, but perhaps some of the vaccine science at the moment might help the quest for a HIV cure."

As for It's a Sin, Prof Johnson said a mainstream programme about the horror of HIV was vital. 

"I think it's really important. HIV is in a way a hidden epidemic still. It became something not particularly something newsworthy. And it's still a massive problem. More than 100,000 people are still living with HIV in the UK." 

Prof Johnson is giving a talk about her career and consulting on It's A Sin as part of the Royal Free Charity's RFC Presents YouTube series on Monday April 26. The Royal Free Charity has helped raise more than £2.5m during the pandemic to support staff.