After facing years of loneliness and stigma, an American man is hoping to educate people about what living with HIV means now.
The founder of the ‘Undetectable equals Untransmittable’ (U=U) campaign, Bruce Richman, is standing up for the rights of people living with HIV.
He is currently in the country for a series of keynote speaking engagements about the realities of HIV.
The U=U movement conveys that if someone living with HIV has maintained an undetectable viral load for more than six months, HIV is not passed on through sex, even if condoms or HIV medication PrEP aren’t used. An undetectable viral load is when the amount of HIV in a person’s body is no longer at detectable levels by a standard viral load test.
Richman was diagnosed with HIV about 15 years ago. When he found out about U=U in 2012, it changed his life.
“I’d been afraid of passing on HIV for so long to someone I love, so I didn’t love.”
He began talking to researchers to find out why public messages about HIV were still saying there was a risk.
“We must tell people the truth about their bodies. So there was a withholding of the information, rather than telling us and educating us properly about how to take meds and use condoms for other STIs. Right now millions of people living with HIV still think they’re infectious.”
His desire to ensure people were well informed drove him to start a campaign around U=U.
“We need to make sure they know. It’s a game changer for people living with HIV and the field. ”
He said the information “radically transforms” the social, sexual and reproductive lives of those living with HIV.
“It lifts that brutal stigma we’ve been living and dying with for decades. This is a radical challenge to the status quo, so change is happening slowly, but the greatest minds in the field are behind the message and movement.”
Richman said the knowledge “changes the field” as it made getting tested less scary.
“It will encourage more people to start treatment and stay in care, as well as expand access to treatment to keep people with HIV healthy and stop new transmissions, which brings us closer to ending the epidemic.”
He said there was also a focus on avoiding creating a new stigma in the field against people who do not have undetectable viral loads.
“Viral load does not equal value, and we’re pushing for folks to be conscious in their communications.”
He urged healthcare providers to educate themselves, and their patients, about the campaign.
“It’s important to realise that not sharing this life-changing news or exaggerating the risk and promoting anxiety with scary caveats is harming patients with HIV and impeding progress toward ending HIV.
“We’re up against decades of fear of HIV and people living with HIV, and the tendency in the field to overprotect HIV negative people at the expense of our health and human rights.”
He said the basic rules were straightforward.
“Stay on medication and in care to stay undetectable and have love, sex and babies without fear.”
Richman said countries across the world had got behind the campaign. It had being translated in to about 40 languages so far, including B=B in Turkish, H=H in Russian, and I=I in Spanish and Portuguese.
U=U is an international consensus statement, signed and supported by the New Zealand AIDS Foundation (NZAF), Body Positive, Positive Women and INA (Māori, Indigenous and South Pacific HIV/AIDS) Foundation.
NZAF executive director Dr Jason Myers said a recent survey found 68 percent of Kiwis would feel uncomfortable having a sexual relationship with someone who has HIV.
“U=U is an important message to get out. It has the real potential to change some of the stigma. There are still some people who have beliefs and attitudes about HIV that date back to the 1980s.”
The campaign would also help remove some of the fear for those living with HIV, he said.
Myers said New Zealand’s HIV transmission rates decreased last year by almost 20 percent.
In 2017 there were 197 people first diagnosed with HIV, compared with 2016 which was the worst year on record with 243 diagnoses.
“It is wonderful news. Any fall in the number of new HIV diagnoses should be celebrated, but it is also very important to note that one data point is not a trend.”
He said it was also important to note that one in five gay or bisexual men with HIV did not know they had it.
“It is really important that people get tested. We need to diagnose early and start treatment.”
The lives of around 3,500 people living with HIV in New Zealand will be positively impacted by the U=U message, NZAF said.