How is the US doing in its battle to end the HIV epidemic? It’s heading in the right direction but at a slower-than-desired pace, according to a major report issued by the CDC at the end of May. Its conclusion could be summed up in one line: “Hopeful signs of progress in HIV prevention, but gains remain uneven.”
The encouraging news is that HIV infections fell 8% from 2015 to 2019. This is partly due to a big increase in the number of gay men taking PrEP and more HIV-positive people being diagnosed and put on to treatment.
However, to put that in perspective, in the United Kingdom, HIV infections fell by 29% between 2014 and 2018 – and that was before PrEP being made available on its national health service.
In other areas, progress in the U.S. remains slow. Black Americans and Hispanic/Latino Americans remain eight times and four times as likely to be HIV positive than white Americans.
The incidence of HIV dropped for those under 24 and over 45 but remained stable for those between those ages. Clearly, much work remains to be done.
On the campaign trail in 2020, Joe Biden vowed to better President Trump’s aim of ending the HIV epidemic by 2030, saying he wanted to bring it to an end by 2025. In March, Queerty asked several HIV experts whether they thought that was realistic.
Most said it was possible but would take a Herculean amount of effort. Carl Schmid, Executive Director of the HIV + Hepatitis Policy Institute in Washington DC, is less hesitant about dismissing such campaign talk.
“ was unrealistic then and it’s unrealistic now,” he states bluntly during a Zoom call. “Sticking to the original 2030 plan is still … that would be a major achievement and it’s going to be very difficult.
“We’ve had Covid, too, since then. But that’s not the only factor. It’s just going to take a long time to find the people, get them into care, keep them on care and treatment and also to ramp up PrEP, but I have to say, we’re on the right path.”
Schmid is gay. He lives in Washington DC with his husband, Alejandro Barrera. He’s been working in the field of HIV for the past 20 years. This includes as a member of the Presidential Advisory Council on HIV/AIDS from 2007-09 and chairing its Domestic Subcommittee. He spent 16 years as a senior figure within the AIDS Institute and was co-chair of the Presidential Advisory Council on HIV/AIDS under President Trump.
Schmid highlights promising signs among the latest CDC report, including an increase in the number of HIV-positive people in the US who are now undetectable (up from 60% to 66%). This means they cannot pass the virus on to others. He also says the falling number of young people acquiring HIV is a significant step in the right direction.
“I do think the younger generation knows more [and] hears more about HIV, and particularly PrEP. I think a couple of years ago, fewer younger people were aware of PrEP, and now more and more are.”
What’s without a doubt is that more money is needed to help continue the battle: particularly when it comes to tackling health inequalities.
This year, Biden received praise for earmarking $670 million towards ending HIV within his fiscal budget.
Schmid points out that President Trump wanted Congress to approve a budget last year of $761million to help bring HIV in the US to an end. Congress rejected it.
“Biden’s numbers for this year don’t even meet what Trump proposed last year. We need the continued funding to make sure we reach those goals. So … we’ll see.”
Although Trump wanted to spend more money, many would argue as to whether that equates with him doing more to end HIV. Advocates in the field – including Democrat lawmakers – were highly critical of Trump’s budget plans to cut billions of dollars from programs such as Medicaid, food stamps, and Medicare.
Biden’s plan, on the other hand, includes a $46 million increase for the Ryan White CARE Act, which helps low-income and uninsured people access HIV medications, and a $20 million boost for the Housing Opportunities for Persons with HIV/AIDS (HOPWA).
Schmid knows that tackling inequality will be a major hurdle in bringing HIV under control.
“We need to make sure that more of the funding is targeted at these communities who are impacted,” he says. “It is not just an HIV problem. It is a race and equity problem, and I have to say, that is something that’s a priority for President Biden and his administration. In fact, one of his first executive orders was to direct government agencies to look at those issues and how they can be improved.”
Schmid says the reasons for those inequalities are multifold and cover everything from sex education to health providers.
“Why is PrEP lower in certain communities?’ Schmid asks aloud. “Well, maybe those doctors, who may be Black and Latino, are not offering PrEP. They don’t discuss PrEP.”
Schmid says that when providers discuss HIV testing and PrEP, they should be treating everyone the same.
“Here in the United States, we have routine HIV testing. It should be color blind. It should be everything blind. Everyone should be offered it and we’re missing a lot of cases because doctors are not offering it. So it’s a workforce issue as well.”
If there’s one silver lining to the Covid pandemic, it’s helped health providers explore new ways of delivering healthcare. Some of these may help when it comes to HIV. There’s already been talk of the Moderna coronavirus jab being used to help develop a vaccine for HIV.
Schmid also points to the way members of the public have been prompted into self-testing. Because of this, they may be more willing to order mailing HIV kits or make use of tele-PrEP services.
“Certain states, you can get PrEP without a doctor’s prescription for the first 30-60 days. Three states have already passed that,” says Schmid, highlighting another innovation that might help if rolled out nationally. He also thinks the introduction of long-acting treatments – HIV medications and PrEP (both of which are undergoing trials or pending FDA approval) – will also help.
“Persistence adherence are problems both with treatment and PrEP. Particularly for PrEP.
“When you have HIV, you’re living with an infectious disease and so you’re conscious about it and conscious of how it impacts other people and your own health, and so there’s a stronger desire, perhaps, [to take the medication]. But for PrEP, you’re taking a drug to prevent a potential infectious disease, and if you have to take it every single day … we’re seeing a lack of persistence.”
He believes a long-acting form of PrEP, such as an injection once every two months, would be a “game-changer”.
June marks the 40th anniversary of the first cases of AIDS being reported by the CDC. Schmid, who was born in 1960, says he started to hear about HIV in his 20s, and “lost a lot of friends, lovers and over that time.”
He says it is amazing how things have changed for the better, and how it is now possible to live a normal lifespan with HIV. However, he acknowledges that “people still die”, and one thing that remains is the stigma.
Schmid praises Billy Porter who recently revealed he was living with HIV: Information he’d kept secret for 14 years. “He is a well-known celebrity. He exudes confidence, but inside, couldn’t share this very important [information] … It just shows there’s still so much stigma and shame.”
“Lots of friends of mine didn’t tell their family members,” he remembers. “They were ashamed. They didn’t tell their friends that they were living with HIV. There was so much stigma and shame back then, but there’s still so much stigma and shame. I think it’s less, with people talking about PrEP these days, but a lot of people I know are still not talking about their HIV status.”