Sen. Ron Johnson (R-Wis.) complained about the new coronavirus variant making global headlines by comparing it to what he called the “overhyped” AIDS crisis while appearing on a Fox News host’s podcast Wednesday.
Wednesday was World AIDS Day. Without a wisp of tact, Johnson likened the way Dr. Anthony Fauci has issued warnings about the omnicron variant of COVID-19 to the way Fauci warned about the threat of AIDS.
“Fauci did the exact same thing with AIDS. He overhyped it,” Johnson told “Fox and Friends” co-host Brian Kilmeade.
oe Biden has promised tackle LGBT+ health inequality in his World AIDS Day message, proving once again that he’s a very different president to Donald Trump.
Ahead of World AIDS Day (1 December), the president issued a proclamationin which he said his administration was “focused on addressing health inequities and inequalities and ensuring that the voices of people with HIVare at the centre of our work to end the HIV epidemic globally”.
Biden “honoured and remembered” the “36 million people, including 700,000 Americans” that have been lost since the start of the AIDS crisis, and noted the impact of COVID-19 on access to HIV-related healthcare.
He said: “The pandemic has… interrupted HIV research and highlighted the work that still remains to achieve equitable access to HIV prevention, care, and treatment in every community — particularly for communities of colour, adolescent girls and young women, and the LGBTQI+ community.”
Biden pointed to his work so far to tackle HIV, including reopening the White House Office of National AIDS Policy that was shut down by Trump, and said that his administration would this week be “releasing an updated National HIV/AIDS Strategy to decrease health inequities in new diagnoses and improve access to comprehensive, evidence-based HIV-prevention tools”.
He added: “Ending the HIV epidemic is within our reach, and we are committed to finishing this work.
“On World AIDS Day, we rededicate ourselves to building on the progress of the last 4 decades; upholding and advancing human rights; supporting research, science, and data-driven solutions; expanding access to housing, education, and economic empowerment; and fighting stigma and discrimination.
“No one living with HIV should suffer the undeserved guilt and prejudice that too many continue to experience.”
In contrast to Joe Biden, Donald Trump never in four years mentioned LGBT+ people on World AIDS Day
Joe Biden’s World AIDS Day proclamation was in stark contrast with Donald Trump’s, with the former president failing to mention LGBT+ people four years in a row.
Trump, who during his time in office dismissed all members of the President’s Advisory Council on HIV/AIDS, mentioned in his final proclamation last year that issued in “this deadly disease disproportionately affects racial and ethnic minorities”, but entirely failed to mention the impact on gay and bisexual men, who make up 69 per cent of all HIV diagnoses in the US.
The LGBT+ community also made up the overwhelming majority of victims of the AIDS crisis.
People living with HIV could be at long last “liberated” from a “burdensome” daily pill regimen, as a new long-lasting injectable is approved for use in Britain.
In news dubbed “brilliant” by a leading HIV activist, the NHS has been given the go-ahead to roll out injections taken every two months to manage the virus.
Currently, people living with HIV are offered antiretroviral medicines that must be taken every day to suppress the virus – usually one to four daily pills. Effective treatment reduces a person’s viral load – the amount of virus in their blood – to an undetectable level.
When the virus is undetectable, it cannot be transmitted, and a person with HIV can live a long, healthy life.
The new treatment approved by England and Wales’ National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium on Thursday (18 November) is a combination of two jabs taken every two months.
Around 13,000 people will be eligible in England, NICE estimated.
HIV jabs will do away with the ’emotional burden’ of daily pills, says leading activist
Many people struggle to take the tablets they need to keep HIV at bay, Matthew Hodson, executive director of HIV outreach charity NAM aidsmap, told PinkNews. The stigma around HIV can discourage people, while others may simply forget.
“Taking daily pills becomes an emotional burden,” Hodson said, “a constant reminder that their health is at risk without medication.
“For some, who are unable to be open about their need for HIV treatment, it can create considerable obstacles to necessary adherence required for HIV medication to be effective.
“For many, a switch to injections just six times a year will be a liberation.”
HIV works by slipping into the human genome and tricking the machinery of white blood cells into making copies of HIV. As white blood cells are the body’s natural defenders, this weakens people’s immune systems.
The two injectables, cabotegravir and rilpivirine, work by suppressing how many HIV particles are in the blood, their viral load. It makes the viral load so low that the virus cannot be detected or even transmitted between people.
The jabs are just as effective as currently available oral drugs, clinical trial results have shown.
Both medicines have been licensed by the Medicines and Healthcare products Regulatory Agency, which carries out safety checks on drugs that pass clinical trials.
Now that they have been recommended by NICE draft guidance , they can receive crucial funding from local health authorities.
“It is important that HIV treatment continues to adapt and innovate to ensure that as many people as possible can benefit,” Hodson added.
“Effective treatment means we can now enjoy the same life expectancy as those without the virus and we can no longer pass HIV on during sex; getting treatment to all people with HIV in a way that supports our circumstances holds the key to ending this epidemic.”
Hodson said he hopes such innovation can be brought to pre-exposure prophylaxis, or PrEP, the drug which when taken correctly prevents people from acquiring HIV.
“Many of the barriers to effective PrEP use are down to the need for daily pills – or the two-one-one on-demand strategy for cis men who can plan their sexual activity,” he explained.
“Injectables, implants and even very long-lasting pills are all in the pipeline, and these could have a huge impact on our ability to prevent HIV.”
The report, “The State of HIV Stigma 2021,” found that less than half (48 percent) of American adults say they feel knowledgeable about HIV, down from 51 percent last year.
According to the study, which was published by the LGBTQ advocacy group GLAAD and the Southern AIDS Coalition, 64 percent of adults said they’re aware that there are medications that protect against HIV, but only 42 percent knew that someone properly following an antiretroviral drug regimen can’t transmit the virus.
“Fear comes from a lack of knowing. A lack of information drives the stigma, which feeds the feeling you have to hide. It’s a vicious cycle.”
DAFINA WARD, SOUTHERN AIDS COALITION
Gilead Sciences, which funded the study, makes HIV medications like Biktarvy and Atripla and the HIV prevention pills Truvada and Descovy.
Half of respondents (50 percent) said they’d feel uncomfortable with a HIV-positive medical professional, 42 percent were uncomfortable with a hair stylist or a barber living with the virus, and a third (34 percent) said they were uncomfortable with an HIV-positive teacher.
There were some notable differences between LGBTQ and non-LGBTQ respondents: Fifty percent of straight, cisgender respondents said they wouldn’t be comfortable with a partner or spouse with HIV, for example, compared to 38 percent of lesbian, gay, bisexual, transgender and queer respondents.
“There’s a correlation there,” Southern AIDS Coalition Executive Director Dafina Ward said. “Fear comes from a lack of knowing. A lack of information drives the stigma, which feeds the feeling you have to hide. It’s a vicious cycle. People are so afraid of being found out they defer treatment.”
More than 500,000 people live with HIV in the South, according to the coalition, but the region falls behind in quality HIV care and prevention services. Sex education in the South also tends to be abstinence-only, Ward added, “so vital conversations aren’t happening” and students aren’t given comprehensive information about preventing HIV/AIDS.
According to Planned Parenthood, seven Southern states either prohibit sex educators from discussing or answering questions about LGBTQ identities and relationships “or actually require sex educators to frame LGBTQ identities and relationships negatively.” Such laws further stigmatize LGBTQ youths and leave them without the information they need to protect their sexual health, the reproductive health services organization said, putting them at greater risk for sexually transmitted diseases.
Some issues fueling HIV misinformation, like inadequate sex education, have existed since the dawn of the AIDS crisis, Ward said, but new hurdles have emerged in recent years.
“We’ve had so much advancement in treatment and people living longer, healthier lives that we’ve lost the sense of urgency,” she said. “There’s a new generation that’s not hearing about HIV — not in the media, not in schools and not from the government.”
And when they do hear about it, the message is often warped: Hip-hop star DaBaby came under criticism last month for telling fans at the Rolling Loud music festival in Miami to shine their smartphone flashlights if they “didn’t show up today with HIV/AIDS, any of them deadly sexually transmitted diseases that will make you die in two to three weeks,” and made other disparaging remarks about gay men in a viral video.
“Stories and voices of people living with HIV are not prioritized regularly to humanize the epidemic, reduce stigma around it, and illustrate how HIV is preventable.”
SARAH KATE ELLIS, GLAAD
A November 2019 survey from the pharmaceutical company Merck and the Prevention Access Campaign underscored how pervasive stigma and misinformation around HIV are among younger Americans.
More than a quarter (28 percent) of HIV-negative millennials (ages 25 to 36 at the time) said they had avoided hugging, talking to or being friends with someone with the virus, and 30 percent said they’d prefer not to interact socially at all with people with HIV.
Researchers also found that 23 percent of HIV-negative millennials admitted that they were either “not at all” or “only somewhat” informed about the virus. For HIV-negative members of Generation Z (ages 18 to 22), the figure leaped to 41 percent.
Nearly half of all HIV-negative young adults in the 2019 survey believed the virus could be transmitted by someone whose viral load is undetectable, even though the CDC has confirmed that there’s “effectively no risk” of infection if someone’s viral load is undetectable.
“Stories and voices of people living with HIV are not prioritized regularly to humanize the epidemic, reduce stigma around it, and illustrate how HIV is preventable,” GLAAD President Sarah Kate Ellis said in a statement about “The State of HIV Stigma” study. “Their stories must be told to show how people with HIV lead long and healthy lives, and cannot sexually transmit HIV when on proper treatment.”
J. Maurice McCants-Pearsall, director of HIV and health equity at the Human Rights Campaign, an LGBTQ advocacy group, said the report “confirms that HIV stigma permeates throughout our entire society.”
“And as long as HIV is stigmatized, the more it will continue to devastate multiple marginalized communities,” he added.
Last week, the Human Rights Campaign launched the first national in-home HIV testing program, also supported by Gilead Sciences. Partnering with the health equity nonprofit Us Helping Us, the organization has pledged to ship at least 5,000 free at-home HIV testing kits over the next year, focusing on marginalized communities disproportionately affected by the virus, including Black and Latino men who have sex with men, as well as bisexual and transgender women of color.
The kits include an OraQuick oral swab, as well as condoms, lubricants, a card with testing information and a referral to providers of pre-exposure prophylaxis, or PrEP, in their area.
“These in-home self-testing kits empower people to learn their status and take control of their sexual health in the privacy of their own home, helping reduce HIV stigma and fear,” McCants-Pearsall said.
Ending the epidemic
President Joe Biden has made bold promises about fighting HIV/AIDS, starting with a campaign commitment to end the epidemic by 2025, five years earlier than President Donald Trump’s stated goal.
“Updating the nation’s comprehensive HIV/AIDS strategy will aggressively reduce new HIV cases, while increasing access to treatment and eliminating inequitable access to services and supports,” Biden wrote in a 20-page candidate HIV questionnaire submitted by a coalition of AIDS organizations.
The White House requested $670 million from Congress this year to end HIV/AIDs, an increase of more than $267 million from previous budgets. He has also pushed to expand the use of HIV-prevention medication and ensure access to HIV services by minorities.
But ending the stigma surrounding HIV/AIDS will take more than money, said DaShawn Usher, GLAAD’s associate director for communities of color.
“We have to think critically and intentionally about how we truly equip and engage everyday Americans with the facts, resources, and scientific advancements about HIV,” Usher said in a statement. “We must hold the media accountable to the 1.2 million Americans living with HIV who are not seen, represented, or discussed. Their stories matter and are beyond worthy of being told.”
Tony Christon-Walker was determined to set up an HIV prevention clinic in Birmingham, Alabama, that would succeed where others have long struggled to combat the scourge of the virus among his fellow queer Black men.
The director of prevention and community partnerships at the nonprofit AIDS Alabama, he spent much of 2019 hiring a clinic staff composed of people of color. They were trained to provide the kind of affirming care that, he said, “reflects our culture,” and that would encourage local men at risk of HIV to keep coming back.
Even facing the headwinds of the Covid-19 pandemic, the fledgling clinic, which specializes in prescribing the HIV prevention pill known as PrEP, for pre-exposure prophylaxis, made steady progress in realizing his vision.
But now clinics like this that provide vital HIV prevention services to disadvantaged populations are facing a dire — and for some of these nonprofit groups, even existential — financial crisis driven by the vagaries of an arcane federal law governing prescription drug discounts.
These safety net clinics are set to lose well over $100 million in annual HIV prevention funds due in part to a recent decision by the pharmaceutical giant Gilead Sciences to cut off what has become an increasingly valuable revenue stream supporting these organizations in their grassroots efforts to prevent the virus’s spread. The consequences are expected to be most devastating to clinics in the South, due to the region’s disproportionately large uninsured population and the fact that half of HIV transmissions in the United States occur in those states.
The imminent funding loss threatens to substantially compromise an ambitious plan the federal government launched last year to end the nation’s HIV epidemic by 2030. People of color will likely bear the brunt of the impact — at a time when the public health sector is striving to mitigate racial disparities, not see them worsen.
“This will shut us down,” said Christon-Walker, of how Gilead’s policy change will affect AIDS Alabama’s PrEP clinic. Losing the funds, he said, will “destroy our program and totally inhibit our ability to see uninsured clients, which make up the bulk of our business.”
Dependence on a ‘patchwork solution’
The financial morass centers around a 1992 federal drug pricing law called 340B. The law grants clinics that care for a disproportionate number of uninsured and low-income individuals the right to purchase pharmaceuticals at steep discounts through their in-house or contracted pharmacies. Public and private insurers typically reimburse 340B-designated clinics’ pharmacies at a dollar amount close to a prescribed drug’s list price; and in a unique setup that Gilead recently decided to end, citing ballooning costs, the California-based company has long engaged in a similar reimbursement process when providing free antiretrovirals for HIV treatment or prevention to uninsured people. Such transactions yield surplus cash — known as the “340B spread” — that these organizations spend on their services.
For expensive brand-name drugs, the 340B spread can be quite a substantial sum. By contrast, when these clinics prescribe a cheaper generic medication, the difference between the price they pay and the price at which they are reimbursed is often relatively minimal; so the prescription generates little revenue.
The Food and Drug Administration approved Gilead’s antiretroviral Truvada for use as HIV prevention in 2012. David Paul Morris / Bloomberg via Getty Images
Consequently, even as the Biden administration seeks to drive downthe cost of pharmaceuticals, the little-publicized 340B pricing law conversely — and perversely — causes many health care facilities serving low-income individuals to depend on drug prices for all kinds of health conditions remaining high to support their bottom lines.
Tim Horn, director of health care access at the HIV advocacy group NASTAD, said the 340B funding system is a “patchwork solution” to the woeful lack of investment in the nation’s medical and public health safety net, and one that amounts to “a house of cards.”
Because of the high price of antiretrovirals used to treat and prevent HIV, the 340B spread funnels hundreds of millions of dollars annually into HIV-focused safety net clinics that serve the low-income, uninsured and nonwhite populations that are disproportionately impacted by the virus. The additional funds allow these clinics to provide extra services, such as transportation assistance or case management.
In the coming years, high-quality HIV treatment regimens will increasingly go off patent. This is good news for the nation’s overall health care bill, and state Medicaid budgets in particular. But as cheaper generic antiretrovirals enter the market, safety net clinics treating people with HIV will sustain a progressive and potentially devastating loss of their 340B revenue.
Currently, however, the most pressing 340B-related financial concern in the national HIV arena revolves around revenue tied to the historically pricey PrEP.
The Food and Drug Administration approved Gilead’s antiretroviral Truvada for use as HIV prevention in 2012. PrEP’s popularity has soaredin recent years, and the Centers for Disease Control and Prevention recently estimated that about 285,000 people — overwhelmingly white gay and bisexual men — were taking it by 2019. The federal agency credits PrEP with helping drive the modest 8 percent decrease, from 37,800 to 34,800 cases, in estimated annual HIV transmissions in the U.S. between 2015 and 2019.
But PrEP’s use has remained disappointingly limited among Black and Latino men who have sex with men, who comprised a respective 25 percent and 21 percent of the 36,800 new HIV diagnoses in 2019, according to the CDC. These are disparities that 340B clinics have worked hard, and are uniquely positioned, to address.
Daniel O’Day, CEO of Gilead Sciences, testifies during a hearing on why Truvada is so expensive, on May, 16, 2019 in Washington.Bill O’Leary / The Washington Post via Getty Images
In recent years, the activist group PrEP4All has campaigned against Truvada’s high price, which Gilead has raised from $1,160 per month in 2012 to $1,842 today. The activists have claimed that Truvada’s cost has been the predominant factor limiting PrEP access in the nation — a claim echoed by Dr. Rochelle Walensky, now the CDC director, during a May 2019 congressional hearing held over Gilead’s high list price for PrEP.
And yet, PrEP is widely covered by insurance, with federal guidelines requiring that almost all private plans, as well as state Medicaid programs expanded under the Affordable Care Act, cover it with no cost-sharing. Gilead also providesfree PrEP to uninsured people.
Moreover, the high price of Truvada, and now also Descovy — an updated version of Truvada that the FDA approved as the second available form of PrEP in 2019 — has actually been a financial godsend to the 340B clinics that serve the very populations among whom HIV transmission is the highest.
According to Horn, the 340B spread for a single prescription for Truvada or Descovy amounts to about $1,200 to $1,600 monthly, or $14,400 to $19,200 annually. Clinics have been able to use this windfall to subsidize for their uninsured PrEP patients the quarterly clinic visits and laboratory tests that are required to maintain the prescription and that are not covered by Gilead’s patient assistance program.
Such funds have also been channeled into paying 340B clinics’ facility and technology costs and to pay for patient navigators, safe sex counselors, outreach workers, condoms, advertising, patient transportation, sexually transmitted infection screening and treatment, and opioid use disorder treatment. And in some cases, this money covers other medications for uninsured people, including the initial few months of HIV treatment before the federal Ryan White HIV/AIDS Program kicks in and picks up the tab.
Now, much of the 340B spread tied to PrEP is poised to vanish, potentially hobbling the services that help keep the HIV epidemic in check. Many uninsured people are expected to lose access to PrEP because of an inability to pay for their clinic visits and lab tests.
“It’s going to put a lot of our programs in serious harm’s way at best,” Jim Pickett, senior director of prevention advocacy and gay men’s health at AIDS Foundation Chicago said. “Some of them will be decimated and destroyed.”
Laboratory technician Brady Robles draws blood from a patient at the Kind Clinic in Austin, Texas. Kind Clinic
HIV advocates worry that this funding crisis will only exacerbate the racial disparities that have long characterized the nation’s epidemic.
“HIV has a disproportionate impact on Black and brown communities, especially here in Texas. I really fear that we will have more Black and Latinx people acquiring HIV if other funding sources aren’t in place,” Christopher Hamilton, CEO of Texas Health Action, an HIV- and LGBTQ-focused nonprofit health care provider, said as he echoed a concern shared among his colleagues across the country.
A ‘peculiar’ and ‘unsustainable’ system
After Gilead announced in early April that it would change its patient assistance program reimbursement policy starting in October, an outcry followed, prompting the companyto move the cut-off to January 2022.
Also in April, multiple generic versions of Truvada entered the market for the first time. Some have a list price as low as $30 per month, posing a major threat to Gilead’s highly profitable PrEP sales.
This price plunge heralds a second oncoming financial crisis for 340B organizations. Insurers are already starting to push people with PrEP prescriptions off of Descovy or the brand-name Truvada and onto the cheap generic drug. Should this shift persist, 340B revenue tied to insured people receiving PrEP will steadily deplete.
In recent years, the activist group PrEP4All has campaigned against Truvada’s high price, which Gilead has raised from $1,160 per month in 2012 to $1,842 today. BSIP / Universal Images Group via Getty
Determining how much money is at stake with the 340B spread tied to PrEP — even Gilead says it does not know the true sum — largely requires querying each clinic individually. The Health Resources and Services Administration recently ascertained from 195 health centerssplitting a $54 million HIV-prevention grant from the agency that in 2020, these clinics prescribed PrEP to 63,000 people — up from 20,000 the previous year. According to the agency, which had no comment for this article, 96 percent of these centers participate in the 340B program. And while it is unknown what percentage of these PrEP recipients are uninsured, overall about a quarter of HRSA-funded health centers’ patients lack health insurance.
NBC News asked nearly 120 HIV prevention-focused 340B clinics for their PrEP-patient figures. The vast majority were unresponsive or refused to share their data. Many said they were wary of alienating Gilead, given the clinics’ further dependency on charitable grants from the company, which is the dominant manufacturer of HIV-treatment pharmaceuticals.
Nevertheless, NBC News was able to tally that at the very least, some 7,000 uninsured 340B clinic patients nationwide are receiving free PrEP from Gilead’s patient assistance program monthly. This modest figure alone translates to a pending minimum loss in 340B-spread revenue to such clinics of $100 million annually starting in January. Given the low response rate to queries — data on roughly 3,000 of these patients came from publicly available information concerning California, and the remainder came from just 24 clinics elsewhere — and given the implication of the HRSA figures, the true dollar figure is likely considerably higher.
“It is peculiar that all of these organizations have been able to get all this funding for receiving a free drug,” said Carl Schmid, executive director at HIV + Hepatitis Policy Institute in Washington, D.C. “But that’s the system that we have been living with, and people have been counting on that for years.”
During an April 8 call between HIV advocates and Gilead to discuss the impending financial changes, Eric Leue, vice president of prevention services at the HIV-prevention clinic Friends for Life in Memphis, Tennessee, was clearly distraught as he pleaded with company representatives to reconsider their change in policy. Noting that Memphis has one of the nation’s highest HIV diagnosis rates, Leue said, Gilead’s “unconscionable”impending reimbursement cutwill force his clinic to close, and that overall, it “will set this county and our population back by at least another decade.”
Coy Stout, vice president of market access strategy at Gilead, explained in an interview that the company never intended to establish the 340B revenue stream in question. In 2004, eight years before PrEP was even approved, Gilead made a fateful decision regarding the administration of its patient assistance program. Instead of having a single contracted mail-order pharmacy send free antiretrovirals to uninsured people directly, as pharma companies typically do, Gilead decided it would reimburse the nation’s pharmacies for purchasing the company’s HIV antiretrovirals and hepatitis B antivirals. According to Stout, the intention was to make filling prescriptions convenient for uninsured patients.
Gilead did not expect pharmacies to purchase substantial quantities of the company’s antiretrovirals at 340B discount prices, because the Ryan White HIV/AIDS Program covers HIV treatment for the uninsured and underinsured.
But the U.S. government would establish no such safety net program to pay for PrEP.
So particularly in the 13 states that have not expanded Medicaid, which are concentrated in the South, there are now substantial — and ever growing — numbers of uninsured people receiving free PrEP from Gilead’s patient assistance program through 340B clinics.https://iframe.nbcnews.com/V9XOgMB?app=1
As for insured people receiving PrEP at 340B clinics, responses from the 24 clinics pointed to some 2,850 such individuals receiving brand-name Truvada and 5,900 receiving Descovy. These figures, which experts believe represent vast underestimates of actual national totals, translate to at least $125 million in annual 340B revenue that stands to diminish given insurers’ efforts to push patients onto cheap generic versions.
To put the cumulative pending loss of 340B-spread funds into context, the federal government funded the “Ending the HIV Epidemic” plan by increasing the HIV-related budget by $267 million in 2020 and by $405 million in 2021. The Biden administration’s 2022 budget request has sought to raise this additional outlay to $670 million.
HIV policy advocates like Schmid have been pushing Congress, the Health Resources and Services Administration and the CDC for increased funding to address the lost revenue tied to PrEP’s 340B spread. The CDC traditionally forbids clinics from spending agency grant money to pay for the lab tests and clinic visits for uninsured people on PrEP. However, it does allow Ending the HIV Epidemic-related grants to cover such costs.
From Gilead’s perspective, its patient assistance program is well over budget and, according to Stout, is “unsustainable.” He further stressed that the company is not able simply to turn around and donate the lost 340B spread to the impacted clinics. Under federal tax law, charitable contributions on Gilead’s part cannot be directly geared around their own commercial products.
“It makes good business sense for Gilead to change the policy,”NASTAD’s Tim Horn said, “but it’s just very, very unfortunate timing.”
Sometimes, Noel Arce has trouble remembering his dads.
Not his biological parents — he never met them: His birth mother gave him up as an infant, and he never knew who his birth father was.
But in 1988, he and his brother, Joey, were taken in by Louis Arce and Steven Koceja, a gay couple from Manhattan. Louis was a social worker, and Joey, 2, and Noel, about 10 months old, were in the foster care system.
The boys had been surrendered at New York City’s Metropolitan Hospital. “Our mother and dad were heroin addicts, and they couldn’t really care for us,” Noel said.
During the week, the brothers and Angel, an HIV-positive 3-year-old, lived with Louis and Steven in their Manhattan apartment, and on weekends, they went to the couple’s house in the scenic town of Rosendale, New York, about two hours north.
“It felt very normal, my childhood,” Noel said. “Like the world operated with moms and dads, and two dads and two moms.”
Noel was always free to be himself growing up — to play with Barbie dolls and dress up in frilly costumes. His dads loved to make home movies; in one, Joey and Angel are playing with Tonka trucks and Noel is picking flowers.
“I was very feminine. I’d always participate in girly things, and my dads embraced that in me,” he said. “That really helped me in my development as a child,”
As he got older, Noel realized that was a unique experience.
“I hear people’s stories of coming out and being rejected, being thrown out. That experience for most gay men is a very hard one,” he said. “I’m very blessed to not have had that.”
Louis Arce with his children Joey, Angel and Noel.Courtesy Noel Arce
The time they had together was special, but it was all too brief. Joey and Noel’s adoptions were finalized in 1993. On June 18, 1994, Steven, 32, died of AIDS-related complications. Five days later, Louis, 47, succumbed to the disease.
Noel was just 7 at the time.
Now 33, he says some of the memories of his time with Louis and Steven are fuzzy. He compares them to a train leaving the station, getting smaller and smaller as it pulls away.
Some moments, though, are crystal clear.
“When I look at some of the photos I have, I can remember the day the picture was taken,” he said. “When I see the bedroom, I can remember being there, I remember certain smells — what was cooking that day. And I remember all the Barbies I had.”
One memory in particular stands out: Noel had just turned 6, and, as usual, the family was making a video. “It was like a horror movie, but, you know, silly,” he said. “I dressed up as a witch, and my brother was, like, a devil. And my dad was videoing it, and we were all having so much fun.”
As an adult, he says, he’s better at holding onto the memories. “But I don’t remember the end. I don’t remember them being sick. I don’t remember visiting them in the hospital.”
When Louis and Steven knew their time was running out, they recorded special videos for the boys.
Steven J. Koceja.Courtesy Noel Arce
“There’s a video of them talking to us — explaining how much they loved us,” Noel said. “And there’s videos Louis made for each of us individually. In the video for me, he says, ‘Noel, I know you’re gay.’ And he gives me his thoughts and advice about facing life. I’m so lucky to have that.”
He watched that video for the first time a year after his dads died and, unsurprisingly, didn’t really understand it. About two years ago, he watched it again.
“It was the first time I had an emotional reaction — where I cried,” he said of watching the video.
After Louis and Steven died, Louis’ brother Robert and his wife, Tina, took in the three boys.
When Louis and Steven started to get sick, they had asked Robert and Tina to become the boys’ guardians and started transitioning care.
“Sometimes we’d come over for longer visits,” Tina said. “Other times it would just be the kids and us. We talked to them about what was going to happen, but how do you prepare a child for that?”
She and Louis had known each other since they were kids themselves. “He always, always wanted children,” she said. But, he was an HIV-positive man at a time when treatment options were minimal to nonexistent.
“I said to him, ‘Why would you do this to these kids — taking them in, knowing you have a death sentence, that you’ll disappear on them?” And he said, “Who would know better than me what they’ll face?”
Bringing the boys into the family “changed our whole dynamic forever,” she said. “I was done raising kids by that point, and then there I am, taking these” children in.
But she got much out of the experience, too, she’s quick to add, “maybe even more than the kids.”
“I became involved in AIDS care. I traveled. I met people I never thought I would. I fought for them,” she said. “The man upstairs knew what he was doing bringing us together. It was amazing how my life turned around. If it wasn’t for our family, I don’t know what I’d do.”
Noel, who lives with Robert and Tina in Suffolk County, New York, said he and Joey, who lives nearby, are still very close. Sadly, he doesn’t know what became of Angel, whom he said developed serious emotional problems in adolescence and had to be taken out of the family.
“I don’t know if he’s alive,” he said. “Back then, AIDS was a death sentence. But with the way medication is today, I hope he’s OK — and that he’s happy.”
Noel’s mother was HIV-positive when she was pregnant, and he tested positive for the virus at birth. Eventually, though, he developed his own antibodies and was determined to be HIV-negative.
In April, Noel shared a photo of Joey, Angel, Louis, Steven and himself on the AIDS Memorial Instagram, a page dedicated to sharing stories of those lost to the pandemic.
“We weren’t with Louis and Steven very long before they passed,” he wrote in the accompanying caption. “They never got a chance to see the men we are today but they cared for us very much and gave us a life that we wouldn’t have known otherwise. It’s incredible even now, after all these years, I can still feel what it felt like to be loved that much.”https://iframe.nbcnews.com/VhRU9be?app=1
The black and white image included in the Instagram post was from an early ‘90s photo shoot for “Living Proof: Courage in the Face of AIDS”, a collection of portraits published in 1996 by photographer Carolyn Jones of people from all walks of life living with HIV/AIDS.
“I remember the family well,” Jones said of the shoot. “There were not that many families photographed for “Living Proof,” so they are easy to remember. Those three little boys were priceless together. It felt as though they had all somehow miraculously found one another, and there was a lot of love wrapped up in that photo.”
Noel’s post has received hundreds of comments and more than 15,000 likes.
He doesn’t remember how he first came across the AIDS Memorial Instagram account, which NBC News reported on in December for World AIDS Day.
“I think a friend of mine followed that account, and it got recommended to me,” he said. “But when I saw it, I was like, ‘Wow, all these people are telling their stories.’ And I just kind of felt compelled to tell my story, too.”
The response was tremendous, Noel said, adding that it has been particularly meaningful to see comments from people who hadn’t been directly affected by the AIDS devastation of the 1980s and ‘90s.
“I guess I thought that AIDS was a conversation people weren’t having anymore. That no one cared,” he said. “With young people today, they think, ‘Oh, we have medications, we have Truvada, and [HIV] isn’t something to really worry about, right?’ My fear is that it’ll completely be forgotten. But the page keeps it alive. It makes people remember our history and the people who fought for what we have now … And who even died in the process.”
Noel doesn’t know much about how Louis and Steven were able to take in HIV-positive boys in the late ‘80s. “I do know that they fought for us quite a bit,” he said. “I can only imagine how hard it was at that time.”
He has shared other family photos of his dads, his brothers and himself on social media. It’s comforting, he said, but it also churns up immense feelings of loss.
“God really handed me the courage to look at those pictures again,” Noel said. “It had been years — there’s a lot of pain attached to them. But it was a great childhood, it was. I look back now, and I’m like, ‘Wow, I was so lucky.’”
For the past 13 years, Noel has worked in drag, as Violet Storm, playing clubs in Manhattan and out on Long Island. The pandemic put a pause on gigs, but more recently he’s been able to perform again.
Noel Arce during a drag performance as Violet Storm.Courtesy Noel Arce
Knowing his dads were gay, Noel often wonders what they would think of his drag. “Not whether they’d approve of it, because of course they would,” he said. “But, would they think I’m funny? That I’m pretty? Would they like my show?”
He has a lot of questions about his dads that can’t really be answered.
“Like, how did they meet? I want to know the whole love story — I want to hear about those crazy feelings you have when you first meet someone,” he said. “What bars did they go to? Did they have a favorite drag queen? What kind of homophobia did they face back then?”
Tina has been a fount of information about his dads, “but this isn’t really stuff she can tell me.”
He recalled doing a show at the historic Stonewall Inn and wondering if Louis and Steven had gone there back in the ‘80s and ‘90s.
“Every time I do a show, I think, ‘Were my dads here? Did they like this bar? Who did they see perform?’ Sometimes I cry when I think about it,” Noel said. “But they give me a lot of courage, too. Before I go on, I get really, really nervous. And there’s a moment where I have to go on, and I think, ‘I’m just going to back out. I’ll leave. I just can’t do this.’ My heart is racing, I’m so nervous, and then I think of my dads, and I’m like, ‘Just do it. Just let it happen.’”
Noel Arce.Courtesy Noel Arce
While Noel still has a lot of unanswered questions about his dads, he has learned a bit more because of the AIDS Memorial Instagram: Writer and artist Timothy Dean Lee, who follows the page and frequently comments on posts, knew Louis and Steven back in the day.
“When I read Noel’s tribute it was overwhelming,” Lee told NBC News via email. “It gave me answers to what had happened to Louis and Steven — and to the boys. I couldn’t stop crying.”
Lee had met Louis in the 1980s as a graduate student at New York University, where he was studying art therapy and child psychology. He’d often find himself in New York Family Court, where Louis was working as a social worker.
He’d also see Louis at meetings of the AIDS Coalition to Unleash Power, or ACT UP, and protests — and, on occasion, bump into Steven and Louis at the Paradise Garage “dancing the night away.”
“I remember when Louis told me that they were going through the process of adopting the boys,” Lee said. “I knew that adopting for a straight couple was challenging enough, but for a gay couple the challenges were all-consuming. But that certainly didn’t stop Louis and Steven.”
Being a social worker, Lee said, Louis knew the “ins and outs” of the system.
“He was driven. He knew the three boys needed a stable home and love, and he and Steven were more than willing to embrace them as part of their family.”
The last time Lee remembered seeing Louis was about 1990 on the street in the West Village.
“I asked him if he and Steven ever were able to adopt the boys,” he said. “He explained they were still officially foster parents, but they were determined to adopt all three.”
“Louis pulled out his wallet and showed a picture of the kids, saying ‘Yep, Tim, that’s my family.’”
In 2014, Deondre Moore, who was 19 at the time, decided to get an HIV test while he and his friends were at a nightclub in Houston.
Moore wanted his friends to get tested, “so I knew that the best way to do so was to lead by example and do my test first,” he said. He was tested earlier that year, and had recently been in what he thought was a monogamous relationship with a man he was in love with, so he wasn’t worried about the results.
“They tested me for HIV, I knew it would come back negative,” he said. “Went to the back, ready to hear my results, and he said, ‘Your test came back positive.’”
Moore said he “made up a whole scenario” in his head about why he thought the test result was wrong. But just over a week later, a doctor at the student health clinic at Sam Houston State University, where he was a freshman, confirmed the result.
“The doctor walked in, and very quickly got it out of the way. And he said, ‘Mr. Moore, I’m sorry to tell you, but our test confirmed that you do have HIV,’” he recalled. “What I heard the doctor say was, ‘Yeah, you are going to die.’”
Now 26, Moore takes just one pill a day — an antiretroviral treatment that makes the virus undetectable and untransmittable to others. It’s not a cure, but it means that, unlike a few decades ago, people like Moore can live long, healthy lives.
Treatment for HIV has come a long way since June 1981, when the Centers for Disease Control and Prevention published its first scientific report describing the disease now known as AIDS in its Morbidity and Mortality Weekly Report. But advocates say there’s still more work to be done. Stigma surrounding HIV is persistent, and the virus disproportionately affects gay and bisexual men of color, particularly Black men, due to inequality in a variety of areas.
Advocates want to see better health education in schools, better access to health care and, ultimately, an end to the epidemic.
A lack of education — and more HIV cases among young people
Moore’s mother, Kathleen Wingate, said that she didn’t personally know anyone who was living with HIV prior to her son’s diagnosis, so she didn’t know anything about it. Going to his doctor’s appointments with him helped a lot, she said.
The doctor explained to her that she couldn’t contract HIV from hugging her son, kissing him or sharing food and drinks with him.
“And I always thought, ‘Oh, if he touches me … If somebody touches you, you’re going to get it.’ I’ve heard that,” Wingate said. But the doctor told her that if Moore took one pill every day for the rest of his life, he could live to 90 or 100 years old.
Misinformation and stigma persist in part because of poor sex education across the country, said J. Maurice McCants-Pearsall, director of HIV and health equity at Human Rights Campaign.
He noted that young people ages 13 to 24 are overrepresented in new HIV diagnoses, with the age group making up 21 percent of the category in 2018, according to the CDC. Young gay and bisexual men account for 83 percent of all new diagnoses in the age group, and young Black gay and bisexual men make up 42 percent of new diagnoses among young queer men.
“And then we have to ask the question, well, why is that?” McCants-Pearsall said. “Well, there’s a direct correlation with a lack of sexual health education and HIV in young folks between the ages of 13 and 24. That’s undeniable.”
He said HIV’s impact on Black and brown people is also due to social determinants of health, which he said aren’t being addressed for communities of color. “It’s not just enough to give someone a blue magical pill and say, ‘Oh, this is going to prevent you from contracting HIV,’” he said. “No, we have to have comprehensive health care for folks, then address all their needs from mental health to behavioral health services, to increased access to medical treatment and/or prevention services … equal access to educational, employment opportunities, housing.”
Legislation also plays a role. Thirty-seven states criminalize exposing someone to HIV, according to the CDC. McCants-Pearsall said 11 states have laws that make it a felony to spit or bite someone if you have HIV, “even though we know the science tells us that it is not possible to transmit HIV through saliva.”
Twenty-five states also criminalize one or more behaviors that pose low risks for HIV transmission, he said. The penalties for violating these laws can include prison time: 18 impose sentences of up to 10 years, seven states impose sentences of 11 to 20 years, and five states impose a sentence of 20 years “and this is not based off of behavior motivated by intent to harm,” McCants-Pearsall said.
“This is based off of you not disclosing your status or merely the perceived exposure to HIV, and that’s ridiculous, totally ridiculous,” he said.
Ending the epidemic
Thom Kam, 65, was diagnosed with HIV in 1992. He used all natural and alternative therapies to boost his immune system until 1996, when he was hospitalized and officially had AIDS. At that time, the result of a six-month study showed that a combination of three drugs was effective at containing HIV.
“And I did that regimen eight hours every day around the clock on an empty stomach for three years, which was 4,000 plus doses without missing a single one,” he said. “But I knew how lucky I was. I knew how lucky I was to actually be able to do that … really grateful. And so I did and embraced it for myself and for all the other guys who hadn’t had the opportunity.”
In the ‘80s and the ‘90s, he said, he never thought it would get to this point, when one pill a day can make HIV undetectable. “I didn’t know if we could or not,” Kam said. “It was one big dark tunnel, and there was no light at the end.”
Treatments have improved, but Moore said HIV has been around for 40 years, and there’s no cure or vaccine. He added that about a year and a half into the Covid-19 pandemic, however, multiple vaccines exist.
“I think it just speaks to who’s mostly affected, and who was mostly affected then,” he said. Because the HIV epidemic disproportionately affected queer men, and Black and brown people, “no one cared, no one listened,” he said.
But that is not a view that Dr. Anthony Fauci, the nation’s top infectious diseases expert, shared.
Fauci, director of the National Institute of Allergy and Infectious Diseases, who was a leading researcher during the AIDS epidemic in the 1980s, said the fact that there’s a Covid-19 vaccine and no HIV vaccine is “a scientific issue” and “has nothing to do with effort.”
“We have spent literally billions of dollars on an HIV vaccine. No doubt,” he told NBC News in response to a question in May. What makes a vaccine successful is when the body makes an adequate immune response to a pathogen to clear it and prevent the person from being infected with the same pathogen again.
“That completely is different for HIV, because for reasons we still can’t explain, the body does not make a good immune response against HIV,” he said. “And that’s the reason why we never see clearance of the virus from the body of someone who’s been infected spontaneously.”
As advocates work to end the epidemic or wait for a cure, they continue to fight misconceptions. Among the most common is that HIV is a death sentence, and it is not, McCants-Pearsall said. Another is that if a person is HIV positive, it means “they did something wrong.”
“No one did anything wrong,” he said. “We have free choice. I can love who I want to love, how I want to love them, whenever I want to love them. There’s no shame in that. I did nothing wrong.”
Survivor’s guilt and trauma from surviving the early days of the AIDS epidemic are oftentimes cited as the reasons why HIV long-term survivors experience depression and other mental health symptoms. Now, the experience of living through a second devastating pandemic–COVID-19–is compounding the anxiety, sense of loss, and social isolation faced by some long-term survivors.
“COVID-19 has really brought up a lot of memories of friends dying from AIDS,” said Vince Crisostomo, a long-term survivor and director of aging services at San Francisco AIDS Foundation. “The images of hospitals being overrun–they’re similar to the images we saw in the early years of the AIDS epidemic. The scale of how many people have died is really scary. You just think, ‘Will I make it? Will I survive?”
Activists are calling for additional support to address the evolving mental health care needs of a growing population aging with HIV. This need is specifically called out in the San Francisco Principles, a call for resources and treatment specifically addressing the unmet needs of long-term survivors published by a group of activists including Crisostomo, and a 2021 San Francisco budget request to fund mental health care services for long-term survivors.
The budget request, for $300,000, would fund mental health coordination efforts in order to decrease barriers to accessing culturally competent mental health services.
“We have suffered through isolation and loneliness, the expense of medications and health care visits, declining physical health, untreated substance use and mental health problems, and the damage done to us by early HIV medications. We have been virtually forgotten, shoved to the sidelines by AIDS researchers and service providers, and by physicians who have not been trained to treat the unique problems of surviving with HIV,” said long-time survivor and activist Hank Trout, in an article describing the Principles.
“Many long-term survivors who lived through the early years of AIDS didn’t know whether they were going to live this long,” said Angel Vazquez, health educator with aging services. “Now they’re still here–but have lost relationships, friends, and families. They need to be able to regain a sense of resilience in order to integrate again into the community after COVID-19.”
“You have to keep in mind that people who have been living with HIV for many years also often experience comorbidities from HIV or the early HIV drugs,” said Dusty Araujo, manager of aging services at SFAF. “These additional health problems can really affect someone’s mental health when experiencing yet another pandemic. Especially if they’re more isolated because of COVID-19 and don’t have strong support from family or other loved ones nearby.”
“COVID-19 has affected so many people, from the disabled, to the working class, to people who all of a sudden have found themselves job insecure,” said Michael Rouppet, an activist and long-term HIV survivor. “Everything devolved into chaos. I think COVID-19 really took the mask off and showed how vulnerable we really are–especially for people who are at risk of losing their housing and being evicted. Housing really is healthcare, and it is a component of mental health. Even though we have an eviction moratorium at the moment, what happens once rent becomes due? These issues are all inter-related. Many long-term survivors are experiencing the overlapping effects of COVID-19, housing insecurity, isolation, substance use, and mental health issues.”
Rouppet said that this is one reason why the San Francisco Principles specifically call out the need for on-demand, reasonably-priced (or free) access to mental health care for long-term survivors.
“There’s so much unmet need right now,” said Rouppet. “A lot of people are in crisis. We’re just not meeting the need, and we’re not moving quickly enough to meet the needs of an aging population of people living with HIV. Here I am in my 50s, and I’m looking 20 years ahead to how many of us will still be here that will need these types of services.”
A component of holistic care includes connection to community–one focus of the Elizabeth Taylor 50-Plus Network and aging services at SFAF. Although the group is not specifically a therapy or mental health group, services focus on building the resilience of the aging community.
“Our focus is really on socializing and making sure that people have a positive community they can connect with,” said Crisostomo. “Being happy with your life–because of your social connections–is so important to aging, and living longer. You have to stay connected and get involved, so you don’t become isolated.”
“When people are going through mental health issues and crisis, they might turn to drugs and alcohol,” said Rouppet. “But we need harm reduction resources, to lessen the risk of overdose. We need ways for people to get community support. The opposite of isolation is connection. And that has to be instrumental in getting people back connected to the community.”
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.
“[2025] 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.
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 issomething 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 everythingblind. 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.”
Posed by models (Photo: Shutterstock)
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.”
The British government on Monday (14 June) eased blood donation rules for gay, bisexual and queer men – yet activists warn harmful restrictions remain.
Blood donation rules in England, Scotland and Wales have long screened out donors if they are a man who has had oral or anal sex with another man.
This is because male donors were asked to disclose whether they have had sex with another man during checks.
But coming into effect on World Blood Donor Day and following recommendations from a health committee, British blood services will now assess donor eligibility on a person-by-person basis instead of applying a blanket restriction.
So, rather than just men, all people regardless of gender and sexuality will be asked the same questions on recent sexual activity, if any.
This means anyone who has had the same sexual partner for the last three months will be eligible, allowing more LGBT+ folk than ever before to donate blood, platelets and plasma.
It’s a long-sought for shift in policy quickly hailed as “historic” by top LGBT+ advocates, but sexual health groups warned that the blood donation process is still riddled by “barriers”.
“Patient safety is at the heart of everything we do,” said the blood service’s chief nurse for blood donation Ella Poppitt.
“This change is about switching around how we assess the risk of exposure to a sexual infection, so it is more tailored to the individual.
“We screen all donations for evidence of significant infections, which goes hand-in-hand with donor selection to maintain the safety of blood sent to hospitals.”
