U.S. regulators have approved the first long-acting drug combo for HIV, monthly shots that can replace the daily pills now used to control infection with the AIDS virus.
Thursday’s approval of the two-shot combo called Cabenuva is expected to make it easier for people to stay on track with their HIV medicines and to do so with more privacy. It’s a huge change from not long ago, when patients had to take multiple pills several times a day, carefully timed around meals.
Vials of the HIV treatment Cabenuva.ViiV Healthcare via AP
“That will enhance quality of life” to need treatment just once a month, said Dr. Steven Deeks, an HIV specialist at the University of California, San Francisco, who has no ties to the drug’s makers. “People don’t want those daily reminders that they’re HIV infected.”
Cabenuva combines rilpivirine, sold as Edurant by Johnson & Johnson’s Janssen unit, and a new drug — cabotegravir, from ViiV Healthcare. They’re packaged together and given as separate shots once a month. Dosing every two months also is being tested.
The U.S. Food and Drug Administration approved Cabenuva for use in adults who have had their disease well controlled by conventional HIV medicines and who have not shown signs of viral resistance to the two drugs in Cabenuva.
The agency also approved a pill version of cabotegravir to be taken with rilpivarine for a month before switching to the shots to be sure the drugs are well tolerated.
ViiV said the shot combo would cost $5,940 for an initial, higher dose and $3,960 per month afterward. The company said that is “within the range” of what one-a-day pill combos cost now. How much a patient pays depends on insurance, income and other things.
Studies found that patients greatly preferred the shots.
“Even people who are taking one pill once a day just reported improvement in their quality of life to switch to an injection,” said Dr. Judith Currier, an HIV specialist at the University of California, Los Angeles. She consults for ViiV and wrote a commentaryaccompanying one study of the drug in the New England Journal of Medicine.
Deeks said long-acting shots also give hope of reaching groups that have a hard time sticking to treatment, including people with mental illness or substance abuse problems.
“There’s a great unmet need” that the shots may fill, he said.
Separately, ViiV plans to seek approval for cabotegravir for HIV prevention. Two recent studies found that cabotegravir shots every two months were better than daily Truvada pills for keeping uninfected people from catching the virus from an infected sex partner.
When Jeff Taylor, a longtime AIDS advocate and survivor, learned about clinical trials for the new Covid-19 vaccine in his hometown, Palm Springs, California, he leapt at the opportunity to participate.
“I always want to be the first person to try something,” he said.
But Taylor’s enthusiasm was short-lived. As soon as he told a recruiter over the phone that he was HIV-positive, Taylor was informed that he was ineligible to join.
“I argued with him, but he said: ‘I don’t make the rules. This is what our sponsor told us to do,'” Taylor, 58, said.
Taylor understood, in a sense, why they were rejecting him. As head of the HIV + Aging Research Project-Palm Springs, he had read plenty of studies that excluded people who were immunocompromised or on immune-modularity drugs.
“It’s something that happens all time,” Taylor said.
A study published this year in the Journal of Clinical Oncology found that 73 percent of over 1,090 analyzed cancer immunotherapy trials specifically excluded patients with HIV.
Not including a sample for the estimated 1.2 million HIV-positive people in the U.S. in the most significant vaccine trial in a generation seemed to him unwise. On July 18, Taylor notified a private listserv for HIV activists and researchers called IBT-Cure. Shortly thereafter, he got a response from Lynda Dee, executive director of AIDS Action Baltimore, another heavyweight in the HIV advocacy world who has been agitating for an AIDS vaccine since the 1980s.
Dee immediately recognized that someone running the trials had failed to include people with HIV. But, having long been an advocate for more inclusive medical trials, she also knew that the experiments were sprawling operations with plenty of opportunities for routine error.
“Vaccine protocols change, and there are usually 20 iterations before they actually get sent to the FDA for approval,” she said. “Someone must have stuck [the HIV exclusion] in there.”
She speculated that researchers didn’t want to include a population that they thought could compromise their results.
“Somebody must have thought: ‘Well, this is about immune systems. I don’t want to confound the data by including someone with HIV,’” she said. “They had no idea what something like that looks like and what hell they were going to get from people like us.”
Lynda Dee is an attorney and the executive director of AIDS Action Baltimore. Courtesy Lynda Dee
Alarmed by Taylor’s story, Dee put together a group of activists — including representatives from the Latino Commission on AIDS and the National Minority AIDS Council — and sent a letter to Dr. Francis Collins, director of the National Institutes of Health.
Written with a palpable urgency and more than a whiff of anger, the letter, which the activists also posted to Change.org, said the agency was shooting itself in the foot by excluding HIV-positive people from Covid-19 vaccine trials. Black and Latino residents of the U.S. had been disproportionately affected by both HIV/AIDS and Covid-19, the letter said, and now both communities were the most likely to express skepticism about the coronavirus vaccine.
The activists also pointed out that people with HIV who were responding well to antiretroviral therapy weren’t considered so “immunodeficient” that they were barred from getting other vaccines. (The Centers for Disease Control and Prevention doesn’t recommend certain live vaccines for people with HIV whose CD4 white blood cell count is below 200.)
Dee said she also reached out to her contacts in the U.S. government, including Carl Dieffenbach, director of the Division of AIDS at the National Institute of Allergy and Infectious Diseases. She said Dieffenbach was able to quickly begin discussions with Moderna, because the drugmaker was using government-run clinical trial networks to test its vaccine. (Pfizer didn’t rely on funding from the U.S. government’s Operation Warp Speed.)
Dieffenbach did not respond to a request for comment.
On Aug. 5, about eight days after Dee posted the letter on Change.org, Moderna changed course and announced plans to drop its exclusions. Moderna recruited 176 people living with HIV out of 30,000 participants, according to data on the FDA’s website. Of those with HIV, one who received the placebo and none who received the vaccine developed Covid-19, according to the data.https://platform.twitter.com/embed/index.html?creatorScreenName=NBCNews&dnt=false&embedId=twitter-widget-0&frame=false&hideCard=false&hideThread=false&id=1291056643464192001&lang=en&origin=https%3A%2F%2Fwww.nbcnews.com%2Ffeature%2Fnbc-out%2Finside-fight-include-hiv-positive-people-covid-19-vaccine-trials-n1252458&siteScreenName=NBCNews&theme=light&widgetsVersion=ed20a2b%3A1601588405575&width=550px
Pfizer made a similar announcement a day later and ended up enrolling a relatively small number of HIV-positive people — 120 out of 43,000 participants — in the last phase of its trials, according to information on the FDA’s website. An efficacy rate for the HIV-positive participants in Pfizer’s vaccine is not yet available.
The CDC’s website says people with HIV “may receive the vaccine” but notes that the safety data specific to this population “is not yet available.” The agency adds that people with weakened immune systems “should also be aware of the potential for reduced immune responses to the vaccine, as well as the need to continue following all current guidance to protect themselves against COVID-19.”
Even though Dee was able to exert pressure on much of the hulking bureaucracy that decides who gets injected first, she still laments that it took so long for the vaccine makers to change their rules.
“We got ’em in,” she said, “but my God, what a mistake,” she said of the initial exclusion of those with HIV.
Neither Pfizer nor Moderna responded to multiple requests for comment.
Dr. Larry Corey, a virologist who was chosen by Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, to run vaccine testing operations for Operation Warp Speed, said the pressure on Pfizer and Moderna has been immense, “similar to playing Wimbledon Center Court.”
“I think there were an overwhelming number of priorities and things to do, and it just fell off the radar,” he said.
Corey said there was never “any worry” in the advocacy world that people successfully managing their HIV infections on antiretroviral therapy would have bad responses to the Covid-19 vaccine. Other experts at the Joint U.N. Program on HIV/AIDS, the British HIV Association and Aidsmap have also said the Covid-19 vaccine should be considered safe and effective for people with HIV.
Now, Dee and others are working to amend CDC guidelines and prioritize HIV-positive people for vaccination after the elderly and essential workers, as Germany has done. Some data have emergedthat suggest that people living with HIV are also at an increased risk of severe Covid-19 (although more research is needed), and nearly half of Americans who are HIV-positive are over age 50 and thus more likely to live with co-existing conditions that can complicate the course of the illness, like diabetes or cardiovascular disease.
Dee, who watched all of her friends die of AIDS in the ’80s, said she’s ready for this next fight.
“I’m a pushy old broad, and I’ve been doing this for 33 years,” she said. “People know me, they trust me, and they’re often a little afraid of me because I’m this East Coast battle-ax, and I say what I think.”
A new pilot study funded by the Food and Drug Administration could be the first step toward lifting restrictions on blood donations by gay and bisexual men.
The program, called Assessing Donor Variability and New Concepts in Eligibility (Advance), has been launched by three of the nation’s largest blood centers — the American Red Cross, Vitalant and OneBlood.
Approximately 2,000 men who have sex with men (MSM) will be recruited at community health centers in San Francisco; Los Angeles; Memphis, Tennessee; Atlanta; Orlando, Florida; Miami; Washington, D.C.; and Baton Rouge, Louisiana. Participants must be 18 to 30, have had at least one male sex partner in the last three months and be willing to donate blood. The results could ultimately determine whether the FDA changes its blood-donor history questionnaire, asked of all potential donors to assess risk factors for infection by transfusion-transmissible diseases such as HIV and Hepatitis B.
“If the scientific evidence supports the use of the different questions, it could mean men who have sex with men who present to donate would be assessed based upon their own individual risk for HIV infection and not according to when their last sexual contact with another man occurred,” a statement on the Advance website reads.
Restrictions on certain blood donors date to the early 1980s, during the height of the AIDS epidemic in the United States, when the FDA instituted a lifetime ban on any man who had had sex with another man since 1977. That rule, intended to keep HIV out of the blood supply, was replaced in 2015 with a year-long abstinence requirement.
After the 2016 Pulse nightclub massacre in Orlando, more than 100 members of Congress — including Sens. Tammy Baldwin, D-Wis., Elizabeth Warren, D-Mass., and Bernie Sanders, I-Vt. — signed letters urging then-FDA Commissioner Dr. Robert Califf to eliminate the deferral policy.
“We can’t say some people can give blood, other people can’t based on their sexual orientation,” then-Rep. Alan Grayson, D-Fla., who represented Orlando at the time, told reporters, according to The Washington Blade.
Gay, bisexual and other men who have sex with men are the group most affected by HIV in the U.S., according to the CDC: In 2018, they accounted for 69 percent of the nearly 38,000 new HIV diagnoses across the country.
In April, as coronavirus lockdowns caused donations to plummet, the FDA quickly lowered the eligibility requirement for MSM to just three months.
The pandemic’s impact on available blood was swift and severe: By mid-March, the American Red Cross had canceled some 2,700 blood drives, resulting in 86,000 fewer donations. In April, donations at the New York Blood Center were down from an average of 9,500 a month to fewer than 2,000, according to New York state Sen. Brad Hoylman, who is gay and was initially rejected as a donor despite meeting the new criteria. “A regular month they host about 600 blood drives,” Hoylman told NBC News in May. “Last week, they hosted two.”
The three-month deferral also affects women who have sex with MSM, sex workers, injection drug users and those with recent tattoos or piercings.
In an April letter to the FDA, two New York Democrats, Rep. Carolyn B. Maloney, chair of the Committee on Oversight and Reform, and committee member Rep. Alexandria Ocasio-Cortez, called the change “a good first step” but urged the agency to move toward assessing potential donors by individual risk.
“A policy that fails to do this perpetuates stigma and falls short of ensuring that every person who can safely donate blood in the United States has the opportunity to do so,” they said.
The Red Cross, which had encouraged the FDA to adopt the three-month deferral model, also called it “a scientifically based interim step” toward abolishing restrictions altogether.
“Blood donation eligibility should not be determined by methods that are based upon sexual orientation,” the relief organization said.
Jay Franzone.Reubelt Photography
Jay Franzone, an LGBTQ advocate who remained abstinent for a year to donate blood in January 2017, said the Advance study is long overdue.
“Italy, Spain and other nations modernized their donor policies years ago, before the U.S. even ended its lifetime ban,” he told NBC News.
More than a dozen nations — including Argentina, Brazil, Mexico and Colombia — have adopted a risk-based questionnaire in place of a blanket policy based on sexual orientation. Earlier this month, the U.K. became the latest.
Franzone said he’s confident the Advance study will bear out what advocates like him have been saying all along: “Individual, risk-based assessment is safer for recipients of lifesaving blood.”
Jason Cianciotto, senior managing director of institutional development and strategy at New York’s Gay Men’s Health Crisis, said it’s exciting to reach this point after more than a decade of advocating for policy change.
He did have concerns about the Advance study, though, saying 2,000 individuals “is not a representative sample,” especially as no health centers in Chicago, New York, Boston or other Northeastern cities are involved.
He speculated that the pilot study, like the three-month deferral, was spurred by the pandemic.
“When we’ve lobbied the FDA in the past, their statements showed they didn’t really see an imperative” to change the current policy, Cianciotto told NBC News. “Even though we explained the ban contributed to stigma against people with HIV.”
A 2014 study by UCLA Law’s Williams Institute found that fully repealing restrictions on gay and bisexual donors could add over a half million blood units annually, increasing the available blood supply by 2 to 4 percent.
But when advocates had mentioned gay and bisexual donors could help alleviate blood shortages, Cianciotto said, the FDA has always claimed it didn’t really have any. “Of course, no one could have predicted a nationwide shortage of blood and blood products caused by a pandemic,” he added.
That the program has started under the Trump administration, which has been accused of rolling back LGBTQ rights, increases the likelihood that it was being driven by necessity, he said.
An FDA spokesperson told NBC News that the agency “remains committed to considering alternatives to time-based deferral by generating the scientific evidence that is intended to support an individual risk-assessment-based blood donor questionnaire.”
The spokesperson indicated there is no announced timeline for the study’s completion, although ABC News reported that researchers aim to present their findings by late 2021.
Cianciotto said he hopes the program is completed and implemented before the next election.
“In a Biden administration, we’ll have an advocate like we had in the Obama administration — in fact, one who actually was in the Obama administration,” he said. “But we can’t risk this becoming a campaign issue.”
Public Health England has finally confirmed where people living with HIV land on the coronavirus vaccine priority list.
On Tuesday (8 December) the UK became the first country in the world to start administering the Pfizer/BioNTech vaccine after it was approved my regulators last week.
The government has now released the order of priority in which the vaccine will be given out, and those who are HIV-positive will be in the sixth group, along with other “adults aged 18 to 65 years in an at-risk group”.
“At-risk” adults also include those undergoing chemotherapy or radiotherapy, people diagnosed with a blood cancer like leukaemia, and people with severe asthma, diabetes, heart problems or kidney disease. The group also includes those with a severe mental illness or learning disability.
The sixth risk group follows care home residents and staff, those over and 80 and health and social care workers, people over 75, people over 70 and the extremely clinically vulnerable individuals, and people over the age of 65.
Some studies have shown that those living with HIV are at an increased risk of dying from COVID-19 and, although information is conflicting, one small London study found that HIV-positive people with low CD4 cell counts were more likely to be admitted to hospital with COVID-19 than other people with HIV, according to HIV and AIDS charity NAM/ aidsmap.
NAM/aidsmap executive director Matthew Hodson told PinkNews: “Although there is little evidence that people living with HIV are more likely to acquire COVID, there may be a slightly increased risk of dying from COVID-19.
“People who are not virally suppressed on treatment for HIV are likely to be at greater risk. COVID has underlined the importance of prompt HIV diagnosis and treatment access.
“Some of the vaccines, such as the Oxford and Pfizer vaccines, specifically recruited people living with HIV, although the full results of these studies have not yet been released.
“On a personal level, as someone who has been living with HIV for 22 years, I will not hesitate to get vaccinated.”
Vaccine misinformation has been spreading like wildfire on social media, and this is no different when it comes to the safety of the coronavirus vaccine for people with HIV.
NHS HIV consultant Dr Rageshri Dhairyawan wrote on Twitter: “A WhatsApp message is circulating saying that people living with HIV should not accept the vaccine, as it is a way for the government to kill them, as they are too expensive to look after on the NHS. THIS IS NOT TRUE. It’s vital we discuss people’s fears!”
She added: “Made sure to recommend COVID-19 vaccines to all of my patients in clinic today. A lot of concerns, so it was great to discuss and address them.
“Interestingly, some people said it was reassuring to hear I was going to get one, as it made them feel more confident about them.”
The United States is the only major economy on the planet where health care is a for-profit industry instead of a free public service; it’s also the only place where the government allows health care not just to be run as an industry, but allows that industry to be run as a cartel. What this means in practice is that pharmacology — the study and development of pharmaceuticals — has become more a branch of industry than of science, and it is therefore controlled by lobbying interests rather than either science or the public good.
The only better example of this than the infamous price gouging of insulin in America is how the drug companies have a captive audience for their many still-patented products not only in HIV-positive Americans but also in the nation’s millions of LGBT people who are encouraged to take the sole HIV-prevention drug, Truvada, to avoid HIV infection.
Last year, for the first time, it was announced that a generic version of Truvada — the pill used since 2004 to fight HIV infection and since 2012 as pre-exposure prophylaxis (PrEP) for HIV — would finally be available in the U.S. Generic versions are already sold elsewhere in the world and, usually, when drugs go generic in America, it’s an open field, which dramatically lowers prices.
Truvada’s patent holder, Gilead, however, granted rights to produce a generic U.S. alternative to just one company — the Israeli firm Teva — for a six-month period, as the result of a settlement. Truvada currently costs American users roughly $1,700 a month; Teva’s generic, which debuted in October, is marketed for around $1,455 per month.
Gilead’s all-but-proprietary access to sell Truvada is the equivalent of Hershey’s controlling who has access to chocolate milk.
Of course, few people pay the full price of a medicine out-of-pocket. Insurance, for those who have it, helps lower out-of-pocket costs in many cases, though private insurers aren’t required to do so until 2021. Gilead provides some patients a coupon for $7,200 worth of purchasing assistance per year, with no monthly limit (which means some months it might be free and others it might be full price). Teva’s patient discounts are also $7,200 per year, but they’re limited to $600 per month — knocking its monthly cost down to around $855. Unfortunately, California and Massachusetts both forbid the use of pharmacological coupons that made Truvada somewhat accessible if a generic alternative exists; patients who relied on those discounts must now apply for access to other programs or pay out of pocket for the medications they couldn’t afford.
Meanwhile, generic versions of Truvada — Ricovir, Tavin-EM, or Tenof-EM — elsewhere in the world cost $210 to $720 per year.
Ironically, Gilead put little of its own money into the research that developed Truvada, which is a combination of two medicines, tenofovir disoproxil and emtricitabine (though the company says otherwise). The former input was, in fairness, developed as an oral medication by Gilead (heavily based on a drug first developed by a Czech scientist, after a collaboration with scientists at the University of California-San Francisco showed it was effective in treating HIV), but its patent expired in 2018.
Emtricitabine, the second drug in Truvada and its generic equivalents, was developed at Emory University with NIH grants; Emory then entered into an agreement with a company Gilead eventually acquired to give it control of the drug in exchange for a sliver of the profits. (Until Teva’s generic debuted, Gilead owned 100 percent of the Truvada market in the U.S, pulling in roughly $3 billion a year.)
But the basic research, animal trials and human trials for the combination of the two as preventative drug were all publicly financed by the National Institutes of Health and the Centers for Disease Control and Prevention. The 1980 Bayh-Dole Act, though, allows private grabs of public science; the government can claw patents back under certain circumstances, but Sen. Birch Bayh, D-Ind., and Robert Dole, R-Kan., argued in 2002 that pricing was deliberately not conceived as one such circumstance .
The federal government has the ability to compel broad generic production of Truvada virtually overnight and has refused to act on it.
So the only Truvada-related patent Gilead now owns — until September 2021 — is for emtricitabine; its all-but-proprietary access to sell Truvada is the equivalent of Hershey’s controlling who has access to chocolate milk.
It doesn’t have to be this way, as advocacy groups like PrEP4All have been arguing for years. Empowered with the intellectual property equivalent of eminent domain, the federal government has the ability to compel broad generic production of Truvada virtually overnight and has refused to act on its ability — whether in the Obama administration or the Trump administration. (There are few indications that the Biden administration will be any different.)
The problem with patents thus persists because toxic agents in soulless systems have created a ruthless market for its ostensible solutions.
Unaffected politicians and policymakers — including lobbyists and Big Pharma C-suite cynics — instead cast unsustainable, unaffordable drug prices as a result of tough decisions, difficult circumstances or unavoidable economic realities. But they are wholly avoidable. Such anguish is not a necessary evil of market forces or political gridlock; every other industrialized nation manages to recognize how unnecessary profit-driven health care is.
The most bitter pill in all of human health is the one we prescribe the least: the truth, without a spoonful of sugar. And the truth is that we are fighting late-stage, metastasized cowardice here, a societal immunodeficiency in which we are unable to defend people over profits, or dignity over dollars. Sadly, as far as we’ve come in our understanding of immunology — a knowledge built almost entirely on the bones and blood of the world’s 32.7 million AIDS deaths and 75.7 million HIV infections — such cowardice is wholly incurable because it is more dictum than dysfunction.
As Americans and the world have witnessed the planet’s greatest economy suffer some of the planet’s poorest Covid-19 health care, it is increasingly clear to everyone that government has all the legal and political power it needs to improve the lives of millions with a snap of its fingers, but none of the willpower. When America’s founders committed — and condemned — us to a government ruled by values of life, liberty and the pursuit of happiness, they unfortunately allowed no checks or balances against how much happiness the powerful can find in their fellow Americans’ misery.
Dr. Anthony Fauci’s effort to educate the public on the coronavirus pandemic has earned him scores of admirers, but his work on the global HIV/AIDS crisis saw him cheered on Tuesday by one star-studded fan — Elton John.
“What a wonderful and fitting way to mark World AIDS Day, by honoring one of the biggest champions in the history of the AIDS epidemic,” John said in remarks at the US Global Leadership Coalition’s virtual tribute celebration, where Fauci was presented with the organization’s Lifetime Achievement Award.
“There are very few people on this planet who have dedicated themselves to a lifetime of service to save millions of lives like Dr. Fauci,” said the global music superstar, who founded an eponymous foundation that works to combat HIV/AIDS and its stigma.
Nearly two decades after Bruce Bozzi Jr. lost his first love to AIDS, he revisited their love story in a social media post shared with tens of thousands of strangers.
“On a super hot day in July, we decided to meet on the corner of 14th Street and 5th Avenue,” Bozzi, 54, a restaurateur, wrote in the caption, paired with photos of a striking man in his 20s. “Tommy stood there with his jet black hair, his eyes brilliant with shades of green and blue and that smile you can see in this photograph. Being gay back then was hard, exciting and complicated.”
“Tommy, I think of you every time I stand on 14th & 5th no matter what season it is in New York and much more than that. I guess it’s not the amount of time but the quality that is so important,” Bozzi’s message said. “No matter, we were robbed of you too early! Tommy Grella, January 18, 1963 to June 24, 1992. You never forget your first loves, now do you?”https://www.instagram.com/p/B9nII1-ptNY/embed/captioned/?cr=1&v=8&wp=1116&rd=https%3A%2F%2Fwww.nbcnews.com&rp=%2Ffeature%2Fnbc-out%2Femotional-instagram-memorial-aids-victims-stories-reach-new-generation-n1249436#%7B%22ci%22%3A0%2C%22os%22%3A881%2C%22ls%22%3A858%2C%22le%22%3A878%7D
Bozzi is among thousands of people who have shared memories of loved ones on The AIDS Memorial Instagram account. While remembering those lost to AIDS is often relegated to World AIDS Day on Dec. 1, this social memorial honors them year-round. Every post on the Instagram page tells a heartfelt — and often heartbreaking — story of someone who was taken too soon as a result of the disease, which has claimed more than 32 million lives since the start of the epidemic.
Preserving a hidden history
The AIDS Memorial — created by Stuart, who is based in Scotland and asked that his full name not be published to protect his privacy — has shared more than 7,000 stories and amassed over 150,000 followers since it debuted in April 2017. The posts use images of those who have been lost instead of quilt squares or statistics to put faces to the epidemic.
Stuart said he gets submissions from around the world, although the majority (75 percent to 80 percent) are from the United States. He speculated that Americans are “more open, more forthcoming” about sharing personal stories. Regular submissions also come from England, Australia, Canada and Brazil.
Ron Sese, a volunteer for The AIDS Memorial, said preserving history was among the memorial’s inspirations.
“If the history books won’t write about us, how do we tell our stories? How do we share our stories? How does the next generation learn about the generation that came before them?” he asked.
As the account’s submissions and followers grew, Sese said, “we started to see a community build.”
“We started to see someone submitting a post about a sick father, a dear friend, and people who knew that person would then reach out in the comment section,” he said. “There would be a reunion of sorts, and that value is hard to come by — especially in a social media age.”
Sese said part of the beauty of The AIDS Memorial is that it’s bringing a rich and important history to younger people exactly where they are: social media.
“There is an entire group of people who don’t know life before the internet — they’ve never known a life without a timeline,” he said. “If this is where people are sourcing information and this is where people are learning day to day … then this is where we need to meet them and present them that information.”
‘The saddest I ever felt’
Most of those who submit images and share stories, like Bozzi, are loved ones of those lost to AIDS. Some share paragraphs, while others post just a few words.
On Nov. 21, which was Transgender Day of Remembrance, Marie Jose shared the story of her Uncle Boris, who died in 1996 at age 30. Jose was just 7 when Boris, an Ecuadorian immigrant who lived in Queens, New York, died of AIDS-related complications.
“This is my uncle Boris who was the best dressed, most fun and irreverent person I knew growing up. I wish I’d gotten more time with [her],” Jose wrote in the caption, along with a slideshow of images showing Boris donning attire spanning the gender spectrum. “Boris had a magic to [her] that continues to cast spells.”https://www.instagram.com/p/CH3mvSrj62O/embed/captioned/?cr=1&v=8&wp=1116&rd=https%3A%2F%2Fwww.nbcnews.com&rp=%2Ffeature%2Fnbc-out%2Femotional-instagram-memorial-aids-victims-stories-reach-new-generation-n1249436#%7B%22ci%22%3A1%2C%22os%22%3A883%2C%22ls%22%3A858%2C%22le%22%3A878%7D
“Boris had the best, loudest laugh that sounded like a Times Square 90s bruja,” Jose said, using a Spanish word for “witch.” “Boris also went by Exotica, [her] performer name and [she] used to wear nipple tassels and the most snatched outfits. She dressed for the gawds.” (While Jose used male pronouns to refer to her uncle in the post and noted that her uncle used male pronouns while he was alive, she requested that female pronouns be used in this article.)
At the end of the caption, Jose recalled the day of Boris’ funeral and how it “rained a monsoon.”
“I still remember [her] queer childhood friends from the block, 3 of them, holding hands around [her] tombstone, crying. They were the last ones to leave,” she wrote. “I remember feeling the saddest I ever felt in my whole little life, watching them thro the car window, they were standing through the storming rain and saying goodbye to no doubt, another chosen family member lost to AIDS.”
‘Lying there in my “deathbed”‘
While most of the AIDS Memorial posts are about loss, some are about survival and perseverance. Texas native Aaron Holloway’s post, shared on Oct. 11, National Coming Out Day, is one such example.
“I was diagnosed with end-stage renal failure. The nephrologist proclaimed that my kidneys were ‘gone’ and I would never urinate again,” Holloway wrote, adding that he was just a college senior at the time. “Afterwards, I was simultaneously diagnosed with AIDS by another physician in the presence of my mom and thereby outed. I will never forget what the physician said to me, ‘Wake up! It’s AIDS. Are you surprised?'”https://www.instagram.com/p/CGNxwEyDhh8/embed/captioned/?cr=1&v=8&wp=1116&rd=https%3A%2F%2Fwww.nbcnews.com&rp=%2Ffeature%2Fnbc-out%2Femotional-instagram-memorial-aids-victims-stories-reach-new-generation-n1249436#%7B%22ci%22%3A2%2C%22os%22%3A885%2C%22ls%22%3A858%2C%22le%22%3A878%7D
“I never told my mom I was gay and she did not know,” Holloway said. “Lying there in my ‘deathbed,’ I believed my mom would abandon me. She did not.”
Holloway said that after he was given just a month to live in March 2008, his kidneys “miraculously” regained function. Not only did Holloway finish his bachelor’s degree — cum laude, no less — but he also went on to get a master’s degree.
‘Afraid to be forgotten’
Most of the stories shared on The AIDS Memorial are those of LGBTQ people, as men who have sex with men and transgender women are disproportionately affected by HIV and AIDS. That having been said, the memorial includes many stories about non-LGBTQ people, too.
“It reminds you that this isn’t something that just impacts gay men,” Sese said.
One such person is Debbie, a West Virginia woman whose daughter, Renee Taylor, shared a memorial post on Aug. 5, the 17th anniversary of Debbie’s death.https://www.instagram.com/p/CDhZvbEjJTv/embed/captioned/?cr=1&v=8&wp=1116&rd=https%3A%2F%2Fwww.nbcnews.com&rp=%2Ffeature%2Fnbc-out%2Femotional-instagram-memorial-aids-victims-stories-reach-new-generation-n1249436#%7B%22ci%22%3A3%2C%22os%22%3A1268%2C%22ls%22%3A858%2C%22le%22%3A878%7D
With COVID-19 cases continuing to spike around the world, most events for World AIDS Day on Dec. 1 have been moved to virtual formats to continue bringing awareness to the AIDS epidemic.
The World AIDS Day organization has scheduled a virtual panel discussion for 9 a.m. on Tuesday with professionals in the field of HIV prevention and treatment to share how communities can reduce the stigma and impact of the disease. On the panel will be Assistant Professor at the University of Florida Richelle Joe, Community Liaison for Janssen Scientific Affairs Samuel Quintero, and Adam Troy, prevention manager at an Orlando-based nonprofit, Hope and Help.
CAMP Rehoboth is slated to hold one of the only in-person events in the region with a World AIDS Day Candlelight Vigil and Service of Remembrance and Hope in Rehoboth Beach.
“This event has been a December tradition in Rehoboth Beach since the mid-1990s and no way is COVID going to stop us from remembering this important day,” the organization said in a statement on its website.
The vigil will start at 7 p.m. and attendees can participate in the candlelight drive-up vigil to watch from the safety of their cars. The service and reading of the names will be held under the outdoor portico at Epworth Methodist Church on Holland Glade Road in Rehoboth. The entire event will also be live streamed on CAMP Rehoboth’s Facebook page. If participants would like to add a name to be read during the service, the organization asks that they call them at 302-227-5620.
Several chapters of Delta Sigma Theta are banding together to host a “Rock the Ribbon” virtual panel presentation on Tuesday to commemorate World AIDS Day. Those who wish to attend can register for the 6:30 p.m. event online.
Youth Stop AIDS — a U.K.-based nonprofit — has scheduled a screening of “After 82: The Untold Story of the AIDS Crisis in the UK,” a documentary focusing on personal stories of the AIDS crisis in the UK. The film features interviews with actor Jonathan Blake who lived with AIDS for more than 30 years. The screening is scheduled for Nov. 29 starting at 12:30 p.m. EST.
AIDS Delaware will stage a free, virtual panel discussion on Dec. 5 with panelists who are currently living with HIV/AIDS and can speak on how the virus has impacted their lives. The panel, which starts at 1 p.m., will feature activist and author Tez Anderson, activist and motivational speaker Hydeia Broadbent, and Emmy Award-winning author Marvelyn Brown.
Anderson coined the term AIDS Survivor Syndrome—ASS—to describe the effects of living with HIV/AIDS in the long term. He also founded Let’s Kick ASS, a San Francisco-based group designed to empower long-term HIV survivors and help them connect with one another. He also coined the term AIDS Survivor Syndrome to describe the effects of living with HIV/AIDS in the long term.
Broadbent was diagnosed with AIDS at age three and now spends her time raising awareness of the virus by promoting safe-sex practices. She became a public speaker at age six and over the next thirty years, she’s appeared in the New York Times, People, the Oprah Show, and Teen People. Ebony Magazine named Broadbent one of the most influential African Americans in 2008 and 2011.
Brown has spoken at hundreds of colleges, universities, and conferences around the world to spread her story of contracting HIV when she was 19. She’s been featured on CNN’s Black America, Frontline’s Endgame, and America’s Next Top Model. In 2007, she won an Emmy Award for Outstanding National Public Service Announcement.
I was diagnosed with HIV just shy of my 30th birthday. That day, everything changed. I was apprehensive about my prognosis, my treatment plan, and my ability to live a normal life.
Fortunately, medical advances have turned HIV from a certain death sentence into a manageable condition. Still, like all Americans who depend on complex medications to stay healthy, I worry about high drug prices, and this concern has only intensified amid the COVID-19 pandemic. Especially since some of the proposed “solutions” to high drug prices would put patients’ health at risk.
Just recently, the Trump administration announced that it would allow states to import prescription medications from Canada with the aim of saving money for consumers. Doing so, though, could expose millions of Americans to counterfeit drugs, while achieving little in the way of savings.
I’ve seen firsthand how importation schemes can put patients at risk.
Shortly after learning I was HIV-positive, I ordered my anti-retroviral drugs from an online Canadian pharmacy. For two months, I received medications via mail without ever wondering where they were sourced or whether they contained the active ingredients I needed to keep me alive.
Then my doctor intervened. She told me that drugs purchased through online storefronts are often adulterated or counterfeit—in fact, the global trade in fake medicines is a $30 billion-a-year business. Unknowingly, I had been rolling the dice with my health.
There are two types of counterfeit drugs. The first contains potentially deadly substances— everything from arsenic to antifreeze. The second contains few, if any, active ingredients. Though pills in the latter category don’t contain actual poisons, they can be deadly. Anti-retroviral drugs have to be taken exactly as prescribed; missing even a few doses can allow the virus to reemerge.
There is no mechanism in place to regulate the quality of drugs imported by American patients. A senior official at Health Canada explicitly told the U.S. surgeon general that her agency “does not assure that products being sold to U.S. citizens are safe, effective, and of high quality.” The FDA, meanwhile, plainly states that it “cannot ensure the safety and effectiveness of drugs that it has not approved.”
Moreover, drugs purportedly from Canada could come from anywhere. A 2017 study by the National Association of Boards of Pharmacy found that three quarters of online pharmacies claiming to sell Canadian drugs actually sourced their products from places like India, Singapore, and Hong Kong, all major suppliers of counterfeits. Back in 2005, the FDA reported that only 15 percent of imported drugs marketed as Canadian actually originated in Canada. The other 85 percent came from “27 countries around the globe,” meaning that many likely didn’t go through rigorous quality control.
It’s relatively easy to get hoodwinked by online pharmacies that promise quality drugs at bargain prices. CanadaDrugs.com, for instance, started out in 2001 as a seemingly reputable online pharmacy. But soon it turned to distributors outside of Canada to secure medicines. In 2018, a U.S. court prosecuted and fined the company for selling fake cancer drugs to American doctors.
Counterfeiters have shown they are willing to prey on people living with all kinds of diseases, including HIV. In 2011, a British regulatory agency discovered that two fake HIV medications had infiltrated the market and were circulating among patients.
Opening the door to drug imports would allow that kind of thing to happen here, putting us all at risk. And it’s not even certain that legalizing importation would cut costs. The FDA acknowledges that it is “unable to estimate the cost savings” from President Trump’s new plan. Former FDA Commissioner Scott Gottlieb wrote that “when importation of foreign drugs is done under a regulated scheme, it really wouldn’t save money.”
Right now, Americans are anxious enough about our health. Let’s not add drug imports to our list of things to worry about.
Brandon M. Macsata has been living with HIV since 2002, and serves as CEO of the ADAP Advocacy Association, an organization that promotes the AIDS Drug Assistance Program and works to improve access to care.
When Dr. Anthony Fauci, one of the most visible members of the White House Coronavirus Task Force, learned about the impact the virus could have on patients with underlying medical conditions, among his concerns was the health of a man he had grown to love and admire while battling a prior public health crisis.
“As soon as Covid-19 came, I immediately thought about my dear friend Larry,” Fauci, 79, said of the longtime AIDS activist and gay rights titan Larry Kramer.
When the coronavirus swept through New York City earlier this year, Kramer, who resided in Manhattan, was 84, HIV-positive and the recipient of a liver transplant. If he were to contract the novel virus, his odds of suffering a severe case of Covid-19 would have been high. But while the outbreak gave the two old friends reason to reflect on the early days of the AIDS epidemic — where they were both on the front lines — and discuss the current global health crisis, it was not Covid-19 that claimed the life of the outspoken activist in May, but pneumonia.
In the months following Kramer’s death, Fauci recalled some of their final conversations and the legacy of a man with whom he had a “complicated relationship,” though “at its foundation there was a great deal of affection.”
Kramer — who in 1982 co-founded the Gay Men’s Health Crisis, once the largest supplier of resources to AIDS patients across the country, and then in 1987 founded the grassroots activist group AIDS Coalition to Unleash Power (ACT UP) — never turned down a fight against federal officials tasked with overseeing public health policy. One of these officials was Fauci, who in 1984, as the AIDS crisis rose to prominence, became the director of the National Institute of Allergy and Infectious Diseases, a position he still holds today.
Kramer would regularly lambaste Fauci during the early years of the AIDS crisis in public statements, saying he was too inexperienced to lead the national institute. He also accused Fauci of ignoring the outbreak, similar to how former President Ronald Reagan had done so throughout much of his first term in office, when he refused to even acknowledge the existence of the then-novel virus.
In a 1988 open letter that called Fauci a “murderer,” Kramer wrote: “Your refusal to hear the screams of AIDS activists early in the crisis resulted in the deaths of thousands of queers.”
But many AIDS activists would later hail Fauci as a powerful mediator between them and the international scientific community. He has been credited by both advocates and scientists alike with increasing the amount of patients with access to experimental treatments for HIV and AIDS by amending the way the government conducts clinical drug trials.
“One important legacy from the HIV epidemic is how the FDA, clinical research and science were transformed by the urgency and activism of groups like ACT UP,” said Dr. Adrienne Shapiro, an infectious disease specialist at the University of Washington who is part of a national study exploring the impact Covid-19 has on those living with HIV.
Shapiro said much of the research she is now conducting would not have been possible without AIDS activists like Kramer and the initiatives led by Fauci throughout his career.
“Here we are leveraging this incredibly well-characterized, well-resourced cohort study that has been set up for 15 years, with people who have been followed for years and years, to ask questions about Covid. Data collection processes were already in place,” she said. “We didn’t have to reinvent the wheel.”
In both public health crises, Fauci has worked under presidents who were slower than he was to sound the alarm about the viral outbreaks. Whereas Reagan was accused of outright ignoring the AIDS crisis, President Donald Trump has been accused of “downplaying” the coronavirus pandemic so as not to cause widespread concern.
While Kramer was one of Fauci’s loudest critics during the early days of the AIDS crisis, Fauci said the late activist was one of his strongest defenders during the early days of the Covid-19 outbreak.
“He became kind of protective,” Fauci said, recalling that Kramer was livid when he heard the immunologist faced death threats and incendiary attacks over his calls for Americans to wear masks and follow social distancing measures during the initial months of the coronavirus pandemic.
“Larry wrote me this email, and he was really indignant,” Fauci said. “He would say, ‘These a——- are not treating you very well.’”
Fauci said there was a notable irony in their final conversations.
“Here was a guy who would not hesitate for a moment to criticize me,” he said, “but he didn’t want anybody else unjustifiably criticizing me.”
He recalled how Kramer would send him notes complaining about how his response to the pandemic was being criticized by some in the media.
“You’re killing yourself during this outbreak,” Kramer wrote, according to Fauci. “What a bunch of jerks.”
When the two discussed the pandemic on the phone, Fauci said it felt as if Kramer “really was like my old friend being protective of me.”
But the leading immunologist’s reputation was the last thing on his mind when he spoke to his once-toughest critic after learning what the pandemic was capable of inflicting on those with pre-existing health conditions.
“I have always been very concerned about Larry,” Fauci said, adding that he called Kramer as Covid-19 cases began to soar in the U.S., to ensure his safety: “I got on the phone with him, and I said, ‘Larry, you’re not going to like this, but here’s what you’ve got that’s a problem: You’re 80-something-years old, you have HIV and you have a liver transplant.”
Like millions of other Americans, Fauci was trapped in a battle of words, trying to convince his friend to focus on what he felt was the biggest issue at hand.
“I told him, ‘I know you like to be up and about, but you’ve really got to hunker down until this thing blows over,’” he remembered telling him. “I joked about it. You know, I’m not so young myself. I said, ‘We old guys, Larry, us old has-beens, we’ve got to take care of ourselves.’”
Now, four months after Kramer’s passing, Fauci said the activist’s legacy and indefatigable tenacity live on. Whether it’s the coronavirus or another novel virus that sweeps the nation, the country’s top doctor said he will always be guided by the spirit — and the unending criticism — of his “dear friend.”
