The federal government is seeking public input concerning whether its Medicare department should cover HIV pre-exposure prophylaxis and PrEP medication nationwide, including a new injectable drug that has been developed.
Centers for Medicare and Medicaid Services (CMS) is considering whether it will cover HIV prevention pre-exposure prophylaxis drugs (PrEP) such as Apretude, a prescription injectable given every two months to individuals at risk of contracting HIV.
As part of the analysis, CMS seeks comments from the public, particularly those that include scientific evidence.
As of 2020, Medicare coverage for PrEP varies by state or county, but the average cost of the prevention is $2276 to $2430 per year, Endpoints News reports.
For a service to qualify for national coverage, it must be rated an A or B by the U.S. Prevention Services Task Force (USPSTF). The task force gave long-acting injectable PrEP an A rating last month. Oral PrEP received an A rating in 2019.
Under the Affordable Care Act, health insurance plans and private insurers that the ACA approves are required to cover preventive services that receive an A or B rating.
According to CMS, this analysis comes at the same time as the U.S. Preventive Services Task Force updated a recommendation for prescribing PrEP with effective antiretroviral therapy to HIV-infected individuals last month and gave the proposal an A.
ViiV Healthcare, a subsidiary of GSK, formally requested a national coverage determination last February after FDA approval in December 2021. Apretude is approved for use in adults and adolescents who weigh at least 77 pounds. Initiation injections for Apretude are given one month apart, followed by two monthly injections.
Representatives for the drug manufacturer asked government regulators to issue the passing certificate quickly.
“Given that the USPSTF’s current Grade A recommendation, by its terms, broadly applies to all PrEP therapies (even if it was based on clinical evidence supporting daily oral tenofovir disoproxil fumarate-emtricitabine), it is appropriate to apply the USPSTF’s current Grade A recommendation for PrEP to APRETUDE,” wrote Andrew Zolopa, head of ViiV North America Medical Affairs, in a letter to CMS. “Finally, provider-administered PrEP is appropriate for individuals enrolled under Medicare Part B. Data show that the Medicare program covers approximately 10% of individuals who could benefit from PrEP, including primarily younger individuals who are eligible for Medicare based on disability.”
On Black HIV/AIDS Awareness Day, we must remember the myriad ways the work to end the HIV epidemic overlaps with the work for LGBTQ justice and overlaps with the work to dismantle white supremacy. One of these overlaps is laws that criminalize HIV.
HIV criminalization is when a state criminalizes otherwise legal conduct or increases the penalties for illegal conduct based on a person’s HIV status. As of 2022, there are at least 35 states with HIV criminalization laws.
Each state’s laws vary. Some require the prosecution to prove the person intended to expose others to HIV, but in most states, simply not disclosing your HIV status is enough to convict. Apart from several state reforms over the last few years, no states require evidence of actual transmission or an intent to do harm.
Following a bad breakup, Suttle’s former partner reported him to the police, stating he was unaware of Suttle’s HIV status. Under Louisiana law, it is illegal to engage in sexual activity if you know your HIV status and do not disclose it. Suttle says he disclosed his status, but it was a case of he said, he said. At court, he took a plea deal to avoid trial and the possibility of the maximum sentence. As a result, he was charged with a felony and spent six months in prison.
After his release, Suttle was placed on the state’s sex offender registry, which places a mark on his driver’s license, and he was forced to publish a photo of himself in the newspaper.
Suttle’s story is a typical example of how HIV criminalization laws are used, and how they further criminalize marginalized and BIPOC communities.
States like Louisiana have laws that are outdated, based on obsolete science and misconceptions of HIV. Many of the HIV criminalization laws were drafted in the late 1980’s at the onset of the HIV epidemic and were driven by public fear when very little was known. In some states, spitting or biting — which has little possibility of transmission — are criminalized. In other states, safe sex practices (such as condom use) are irrelevant and cannot be used as defenses.
Most laws also do not take into account the fact that undetectable equals untransmittable. Once someone reaches a point in their treatment where the amount of the virus in their body is so low that it doesn’t show up on blood tests, they are said to have reached an undetectable viral load. A person with an undetectable viral load cannot pass the virus along to anyone.
Science has progressed by leaps and bounds, making treatment of STIs more manageable and HIV no longer a death sentence. The science has moved forward, it’s time for the law to follow suit.
What’s more, these laws are a barrier to preventing the spread of HIV. HIV criminal laws stigmatize HIV, discourage individuals from knowing their status and accessing medical treatment. That’s why almost all major public health organizations — including the American Medical Association, the Centers for Disease Control and Prevention, and the Presidential Advisory Council on HIV/AIDS — all urge a public health approach over criminalization.
New York is one state poised to update its archaic HIV laws, a law that was first written in 1909 to prevent the spread of “venereal diseases” among members of the military.
With the onslaught of World War II, combatting sexually transmitted infections (STIs) became a national priority as their treatment took soldiers out of commission for months. In 1943, the New York legislature increased the penalty to a felony. In 1946 the law was rewritten again making it applicable to the general public and a misdemeanor. It remains unchanged 76 years later.
The New York state law does not make sense in the age of modern medicine.
Pending before the New York state legislature is the REPEAL STI Discrimination Act. The act will repeal the state law that criminalizes STIs and provides for the expungement of past convictions. It also creates a defense so that having an STI does not mean potential criminal charges when engaging in consensual sex.
The New York legislature should pass the REPEAL STI Discrimination Act, and other states should quickly follow suit, because we are all only as safe as the members of our community most at risk and for HIV.
Public health advocates have long known that the best way to promote everyone’s health is an approach that treats people as individuals who need care rather than vectors for disease or criminals to be punished. Decreasing stigma and increasing access to testing, treatment and support are the best ways to combat disease.
On this Black HIV/AIDS Awareness Day, let us stand in solidarity and work to repeal all HIV criminalization laws.
Jose Abrigo is Lambda Legal’s HIV Project Director and Carl Baloney Jr. is AIDS United’s vice president and chief advocacy officer.
Tennessee’s recent decision to reject over $8 million in federal funds to combat HIV was motivated, at least in part, by right-wing provocateurs stoking anti-LGBTQ sentiment, according to four sources within the state Health Department.
The move by Republican Gov. Bill Lee will hamstring, if not cripple, efforts to combat one of the country’s most poorly controlled epidemics of the virus, HIV advocates said.
The announcement followed a political crisis in Tennessee that began in September when conservative media personalities, including Matt Walsh and Ben Shapiro, launched attacks on Vanderbilt University Medical Center over its care of transgender minors, which they alleged was barbaric.
Gov. Bill Lee delivers his inaugural address in the Legislative Plaza in Nashville, Tenn., on Jan. 21, 2023.John Amis / AP file
In October, the pressure wound its way to the unit that combats HIV, sexually transmitted infections and viral hepatitis at the Tennessee Health Department.
On Oct. 24, the unit’s director, Dr. Pamela Talley, told employees that because of the social media firestorm over Vanderbilt, information about the Tennessee Transgender Task Force — a volunteer team the unit established in 2018 to focus on trans health and HIV prevention — and other trans resources had been scrubbedfrom the department’s website. That is according to two staffers present, who, like two of their colleagues, spoke anonymously because they were not authorized to speak to the media.
Then, on Nov. 7, Talley told the unit that federal HIV funding from the Centers for Disease Control and Prevention for both the task force and Planned Parenthood in Tennessee would terminate at the end of the year, according to three staffers at the meeting, which took place in person and on a conference call.
“There were at least three different levels of leadership on the call,” a staffer said. “It was discussed that there had been media attention around the Vanderbilt trans health clinic, which led those reporters to learn about the trans task force, and that they were funded by [the state Health Department] HIV prevention program and that all HIV prevention contracts were being reviewed.”
People walk outside Vanderbilt University Medical Center in Nashville, Tenn., on July 16, 2013.Mark Humphrey / AP file
In mid-January, the Lee administration announced it would pull the plug not just on federal HIV-prevention funds for Planned Parenthood and the task force, which total $235,000, but on all $8.3 million from a pair of CDC grants for HIV prevention, treatment and monitoring in the state. The move shocked HIV experts and advocates.
In addition, the Lee administration, which has said it will replace the federal funds with state dollars, has pledged a shift in funding priorities that would effectively steerHIV prevention efforts away from groups at substantial risk of contracting the virus, including gay men and people who inject drugs.
“All of this is willful ignorance on the part of the state government,” said Greg Millett, the director of public policy at amfAR, The Foundation for AIDS Research. “People at risk for HIV are going to suffer because of these decisions.”
Right-wing media pile-on
A leading voice in the right’s opposition to the treatment of gender dysphoria in minors, Matt Walsh, a columnist for the conservative media outlet Daily Wire, published a series of widely read tweets on Sept. 20 targeting Vanderbilt University Medical Center’s treatment of minors at its Transgender Health Clinic. “They now castrate, sterilize, and mutilate minors as well as adults,” Walsh said.
The next day, Walsh appeared on Tucker Carlson’s Fox News show to publicize his investigation, and Ben Shapiro, a conservative commentator who co-founded Daily Wire, further amplified Walsh’s attacks on Vanderbilt on his YouTube channel and podcast, decrying the “nonsense garbage that a boy can be a girl and a girl can be a boy.”
Matt Walsh speaks about firm traditional gender roles and definitions in Phoenix on Dec. 18. 2022.John Rudoff / Sipa USA via AP file
The same day, Lee issued a statement calling for a “thorough investigation.”
“We should not allow permanent, life-altering decisions that hurt children or policies that suppress religious liberties, all for the purpose of financial gain,” he said. “We have to protect Tennessee children.”
Walsh, Shapiro, Daily Wire and Fox News did not respond to requests for comment, and the Lee administration did not respond to questions about the impact right-wing media personalities had on the state’s rejection of federal HIV funds.
Ray Holloman.Emily April Allen
A Daily Wire article published on Oct. 20, which denounced the Tennessee Transgender Task Force as an “extreme” activist group, appears to have drawn the Lee administration’s attention. The task force, according to its chair, Ray Holloman, is staffed by trans-identified volunteers and focuses on providing HIV educational resources, sharing health insurance information and connecting people to supportive health providers — including those at Vanderbilt.
The article took a victory lap, saying that the Lee administration and the state Health Department denounced the task force “in response to a Daily Wire inquiry” and that information about the task force on the department’s website was “only removed after the Daily Wire asked about it.”
Around the same time, two Health Department supervisors told staffers in private conversations that critical media coverage provoked the Lee administration to scrutinize the source of the task force’s $10,000 in annual funding — a $6.2 million CDC HIV prevention and surveillance grant — two Health Department employees said.
Also under new scrutiny after the article was published, fouremployees said, was Tennessee’s Planned Parenthood program, which received $225,000 a year from the CDC grant, largely for condom distribution.
In a Nov. 7 email that was among a collection of correspondence shared with NBC News by Ashley Coffield, the CEO of Planned Parenthood of Tennessee and Northern Mississippi, Talley informed Coffield that the Health Department’s separate arrangement to supply Planned Parenthood with about 500 HIV test kits a year would be canceled. Talley subsequently wrote to Coffield, “I want to thank you for your statewide efforts in HIV testing and reassure you that this discontinuation was not based on performance concerns.”
Ashley Coffield is the CEO of Planned Parenthood of Tennessee and Northern Mississippi.Planned Parenthood
Three days later, Coffield said, she got a call from a director at the United Way of Greater Nashville, which distributes the CDC grant funds to dozens of community-based organizations in Tennessee, including Planned Parenthood. The director, Niki Easley, said Planned Parenthood would lose its $225,000 in CDC HIV prevention grant funds at year’s end. Coffield said Easley told her that politics were behind the funding cut. “I think you should fight back,” Coffield recalled Easley’s saying.
But there was a wrinkle in the state’s plan:Because of a 2013 legal injunction, the Lee administration could not legally block HIV-related federal funds specifically for Planned Parenthood.
In the collection of emails and letters Planned Parenthood provided to NBC News, the nonprofit’s attorneys threatened to sue. In an emailed response, the Health Department’s attorney, Mary Katherine Bratton, denied having tried to disqualify the organization for the funds but said the department was “currently reviewing all” CDC grants.
Several officials at the Health Department, including Talley, Bratton and communications staffers, did not respond to requests for comment.
After it contacted Easley and several of her colleagues at the United Way of Greater Nashville, NBC News heard from a spokesperson, who said the group “is working closely with the Tennessee Department of Health to understand the changes being made to this grant funding,” adding that “the details of the changes and how our partner agencies will be affected are still developing” and that “all funding decisions are made by” the Health Department.
‘The nuclear option’
Ultimately, instead of focusing on cutting funds for Planned Parenthood and the Tennessee Transgender Task Force, the Lee administration decided to pull the plug on the entire $8.3 million in CDC grants for HIV prevention, surveillance and treatment.
On Jan. 17, Health Department officials held an 8 a.m. meeting with HIV prevention staffers and informed them of the decision to end all CDC HIV grant funding effective June 1, according to two employees who were present.
“People have been crying all week,” a staffer said in a Jan. 21 interview.
Coffield said “it felt like they were punching me in the gut” when she found out the state was abandoning the grants.
“I couldn’t believe that the governor would take the nuclear option,” she said, adding that she views the decision as the culmination of a “political vendetta against abortion rights groups and transgender people.”
Tennessee Department of Health in Nashville, Tenn.Google Maps
The rejected grants consist of the $6.2 million for HIV prevention and surveillance and $2.1 million for Shelby County, home to Memphis. The latter sum comes from a national plan focused, in part, on improving treatment and prevention of HIV in 50 local hot spots that account for about half of new HIV diagnoses nationally — a plan President Donald Trump endorsed in his 2020 State of the Union address.
Friends for Life, a nonprofit Memphis group that provides services to those living with and at risk for HIV, will lose about $500,000 a year, chief programs officer Mia Cotton said. The imminent lack of any federal grants will also render the organization’s health clinic ineligible for pharmaceutical rebates through a separate federal program that last year brought in $1.2 million to an overall operating budget of $8.5 million, Cotton said.
Molly Quinn, the executive director of OUTMemphis, Tennessee’s largest LGBTQ nonprofit group, said her organization would lose $120,000 a year, or 10% of its operating budget, compromising efforts to provide HIV testing, help clients access the HIV prevention pill, PrEP, and give financial assistance to people with the virus.
‘A fictitious epidemic’
The Lee administration says it will replace the $8.3 million in CDC grants with state funds, giving it freedom to target such resources as it sees fit.
“We think we can do that better than the strings attached with the federal dollars that came our way, and that’s why we made that decision,” Lee said Jan. 20.
Currently, the priority populations for the CDC grant for Shelby County, for example, include LGBTQ people, sex workers and those who inject drugs, are unhoused or are formerly incarcerated.
Lee’s press officer, Jade Byers, said in an email that the administration “is committed to maintaining the same level of funding, while more efficiently and effectively serving vulnerable populations, such as victims of human trafficking, mothers and children, and first responders.”
Those priorities, HIV prevention experts said, are in egregious conflict with the actual demographics of the people most at risk of the virus.
“Tennessee is preferring to fight a fictitious epidemic rather than their very real HIV epidemic,” said Millett, of amfAR. “First responders are just not at risk for HIV anywhere in the United States. Sexual trafficking is awful, but it’s not a major contributor for HIV cases in Tennessee or elsewhere.”
Women comprised 9% of HIV diagnoses in Tennessee in 2019, down from 14% in 2016, and only 1 to 6 babies were born with HIV in the state annually from 2016 to 2020.
More than half of new diagnoses in Tennessee were in men who have sex with men in 2019, according to the state Health Department’s surveillance reports. And in 2016, the CDC released a report warning that 220 of the country’s counties, including 41 in Tennessee, were at high risk of HIV and hepatitis C outbreaks among people who inject drugs (that population accounted for 5% of new Tennessee HIV diagnoses in 2019).
New U.S. HIV cases, the CDC estimates, declined by 8% from 2015 to 2019, but that masks considerable progress in some states and either stagnancy or increases in most Southern states, where the bulk of transmissions occur. Even as HIV has steadily declined in, for example, New York and California, where liberal governments have invested heavily in evidence-based HIV treatment and prevention programs, the CDC estimates that Tennessee’s transmissions increased slightly from 2017 to 2019.
While Lee announced Jan. 20 that the state would forgo the federal HIV dollars, a CDC spokesperson said Thursday that the agency had received no word from Tennessee that it intends to block the $8.3 million in grants.
The political climate has become increasingly toxic for LGBTQ people in Tennessee, advocates in the state say.
Since he took office in 2019, Lee has signed several bills that target transgender youths, including one that bars trans students from joining sports teams that align with their gender identities. And so far this year, conservative Tennessee lawmakers have filed at least 11 bills targeting LGBTQ people, including one, which Lee said he supports, that would ban gender-affirming medical care for all minors.
Nationally, lawmakersin at least 21 states have proposed bills to ban or restrict gender-affirming care for minors this year. Trump released a video Tuesday on Truth Social pledging to “stop” such care, which he described as “child sexual mutilation.”
The President’s Emergency Plan for AIDS Relief marks its 20th anniversary Saturday, marking the largest commitment by any nation to address a single disease in the world.
The initiative which was personally led and launched by former President George W. Bush in 2003, its funding has totaled more than $110 billion to date, including funding for the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund), to which the U.S. government is the largest donor.
PEPFAR is credited with saving millions of lives and helping to change the trajectory of the global HIV epidemic. The White House today released a statement by President Joe Biden marking the 20th anniversary:
“20 years ago today, President George W. Bush declared that preventing and treating HIV/AIDS was a foreign policy priority of the United States. At a time when nearly 30 million people were HIV positive, but very few were receiving life-saving medicines, the President’s Emergency Plan for AIDS Relief (PEPFAR) transformed the global AIDS response and laid a marker for America’s commitment to countries that were impacted the hardest by the AIDS epidemic. Helping lead the bipartisan effort in Congress to authorize PEPFAR is among my proudest achievements from my time in the Senate. To this day, PEPFAR remains a powerful example of America’s unmatched ability to drive progress and make life better for people around the world.
Since 2003, PEPFAR has saved more than 25 million lives and dramatically improved health outcomes in more than 55 partner countries. AIDS-related deaths have declined by 68 percent since their peak in 2004, and new HIV infections are down 42 percent. PEPFAR investments have ensured that 5.5 million babies have been born HIV-free. And two decades of investment in partner nations’ health systems played a critical role in countries’ ability to respond to other health crises such as COVID-19, Mpox, and Ebola.
Today, PEPFAR continues to support 20.1 million people around the world with HIV/AIDS treatment, and my administration is committed to continuing to lead the global HIV/AIDS response. We will build on our decades of progress to reach the Sustainable Development Goal of ending AIDS by 2030, work to eliminate the stigma and inequities that keep people from accessing care, and keep the voices of people living with HIV/AIDS at the center of our response. I look forward to working with Congress on PEPFAR’s reauthorization this year.”
PEPFAR is overseen by the U.S. Global AIDS Coordinator, who is appointed by the president, confirmed by the Senate, and reports directly to the secretary of state, as established through PEPFAR’s authorizing legislation.
PEPFAR’s original authorization established new structures and authorities, consolidating all U.S. bilateral and multilateral activities and funding for global HIV/AIDS. Several U.S. agencies, host country governments and other organizations are involved in implementation.
Dr. John Nkengasong, the current coordinator was sworn in on June 13, 2022, and holds the rank of ambassador leading the Office of the Global AIDS Coordinator at the State Department.
Nobel Prize winning scientist Harold Varmus, who served as director of the National Institutes of Health from 1993-1999 and currently the Lewis Thomas University Professor of Medicine at Weill Cornell Medicine in New York, wrote in an article honoring World Aids Day 2013:
[…] “the PEPFAR story must begin with George W. Bush and his wife, Laura, and their interests in AIDS, Africa, and what Bush termed “compassionate conservatism.” According to his 2010 memoir, “Decision Points,” the two of them developed a serious interest in improving the fate of the people of Africa after reading Alex Haley’s “Roots” and visiting the Gambia in 1990. In 1998, while pondering a run for the U.S. presidency, he discussed Africa with Condoleezza Rice, his future secretary of state; she said that, if elected, working more closely with countries on that continent should be a significant part of his foreign policy. She also told him that HIV/AIDS was a central problem in Africa but that the United States was spending only $500 million per year on global AIDS, with the money spread across six federal agencies, without a clear strategy for curbing the epidemic.”
Key Facts (As provided by Kaiser Health and Family Foundation)
Although the U.S. has been involved in efforts to address the global AIDS crisis since the mid-1980s, the creation of PEPFAR in 2003 marked a significant increase in funding and attention to the epidemic.
PEPFAR is the largest commitment by any nation to address a single disease in the world; to date, its funding has totaled more than $110 billion, including funding for the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund), to which the U.S. government is the largest donor. PEPFAR is credited with saving millions of lives and helping to change the trajectory of the global HIV epidemic.
U.S. funding for PEPFAR grew from $2.2 billion in FY 2004 to $7.0 billion in FY 2022; FY 2022 funding includes $5.4 billion provided for bilateral HIV efforts and $1.6 billion for multilateral efforts ($50 million for UNAIDS and $1.56 billion for the Global Fund.)
As the COVID-19 pandemic continues to have profound effects across the world, PEPFAR has acted to respond to COVID-19 in countries that receive support in order to minimize HIV service disruptions and leverage the program’s capabilities to address COVID-19 more broadly.
Looking ahead, PEPFAR faces several issues and challenges, including how best to: address the short- and long-term impacts of COVID-19 on PEPFAR and the HIV response; accelerate progress toward epidemic control in the context of flat funding; support and strengthen community-led responses and the sustainability of HIV programs; define its role in global health security and broader health systems strengthening efforts; and continue to coordinate with other key players in the HIV ecosystem, including the Global Fund.
Key Activities and Results(As provided by Kaiser Health and Family Foundation)
PEPFAR activities focus on expanding access to HIV prevention, treatment and care interventions. These include provision of antiretroviral treatment, pre-exposure prophylaxis (PrEP), voluntary male circumcision, condoms and other commodities related to HIV services. In addition, PEPFAR has launched specific initiatives in key strategic areas. For example, in 2015, PEPFAR launched DREAMS, a public-private partnership that aims to reduce HIV infections in adolescent girls and young women.
The latest results reported by PEPFAR indicate that it has:
Supported testing services for 63.4 million people in FY 2021;
Prevented 2.8 million babies from being born with HIV, who would have otherwise been infected;
Provided care for more than 7.1 million orphans and vulnerable children;
Supported training for nearly 300,000 new health care workers; and
Supported antiretroviral treatment for 18.96 million people.
In the 15 countries implementing the DREAMS initiative, new diagnoses among adolescent girls and young women have declined with most DREAMS areas (96 percent) experiencing declines greater than 25 percent and nearly two-thirds with declines greater than 40 percent.
The achievements of the PEPFAR program have been remarkable, well-documented by outside evaluators, and hugely applauded throughout the advocacy community and the developing world. In general, milestones have been met, the program has been enlarged (for instance, to include some research on implementation of medical assistance), the roster of PEPFAR countries has grown and spending plans have not been exceeded.
AIDS/LifeCycle, the seven-day, 545-mile bike ride fundraiser traversing the golden state from San Francisco to Los Angeles, has announced a new finish line location in Santa Monica.
Co-producers the Los Angeles LGBT Center and San Francisco AIDS Foundation this week, the gFrom June 4-10, the route wheels out nearly 3,000 participants “from the Bay to the Beach” for the very first time in its almost 30-year history.
“We are excited to welcome the AIDS/LifeCycle Ride to Santa Monica. The work of the San Francisco AIDS Foundation and the Los Angeles LGBT Center made possible by the Ride advances our commitments to equity and inclusion as we support and celebrate the LGBTQIA+ community during SaMo Pride this June,” said Santa Monica Mayor Gleam Davis.
The 2023 ride will begin at the Cow Palace in the San Francisco Bay Area. Cyclists will camp in six California cities to experience the diverse landscapes. On June 10, riders will leave Ventura for LA and turn south on San Vicente Blvd, past Santa Monica Pier, to the finish line.
“Whether this is your first or your 20th AIDS/LifeCycle, this finish line will contribute to an unforgettable final day on the Ride,” said Tracy Evans, AIDS/LifeCycle’s Ride Director. “Riders and volunteer Roadies will have the Pacific Ocean as the perfect backdrop to celebrate their incredible accomplishment. What could be better than the Pacific Ocean as the final stop for an iconic California event?”
The new location offers a fresh experience for cyclists and volunteer ‘Roadies’, while also being a beachside festival for friends, family, and spectators. Photo ops, sponsor activations and interactive stations will be part of the day-long celebration.
Proceeds from AIDS/LifeCycle benefit the HIV/AIDS-related services and research of the Los Angeles LGBT Center and San Francisco AIDS Foundation. Last year’s record $17.8M will serve these LGBTQ+ nonprofits, at a time when such assistance is most needed.
There are three ways to participate in AIDS/LifeCycle and support its mission: As cyclists who must fundraise a minimum of $3,500 for their “Ticket to Ride”; as roadies who are seven-day volunteers who may or may not fundraise; and @Home Heroes who set personal fundraising and fitness goals without traveling. Roadie teams cover areas of health services, route, and camp-based teams, while helping cyclists complete their 545-mile journey.
The only HIV vaccine in a late-stage trial has failed, researchers announced Wednesday, dealing a significant blow to the effort to control the global HIV epidemic and adding to a decadeslong roster of failed attempts.
Known as Mosaico, the trial was the product of a public-private partnership including the U.S. government and the pharmaceutical giant Janssen. It was run out of eight nations in Europe and the Americas, including the U.S., starting in 2019. Researchers enrolled nearly 3,900 men who have sex with men and transgender people, all deemed at substantial risk of HIV.
The leaders of the studydecided to discontinue the mammoth research effort after an independent data and safety monitoring board reviewed the trial’s findings and saw no evidence the vaccine lowered participants’ rate of HIV acquisition.
“It’s obviously disappointing,” Dr. Anthony Fauci, who as the long-time head of the National Institute of Allergy and Infectious Diseases (NIAID) was an integral partner in the trial, said of the vaccine’s failure. However, he said, “there are a lot of other approaches” early in the HIV-vaccine research pipeline that he finds promising.
“I don’t think that people should give up on the field of the HIV vaccine,” Fauci said.
Fauci previously said he did not want to retire from the NIAID until an HIV vaccine had been proven at least 50% effective — good enough, in his view, for a global rollout. Instead, he retired from his post at the end of last month with this dream unfulfilled.
In addition to NIAID and Janssen, which is a division of Johnson & Johnson, the trial was run by the HIV Vaccine Trials Network, which is headquartered in the Fred Hutchinson Research Center in Seattle, and the U.S. Army Medical Research and Development Command.
Mosaico’s lack of efficacy was not unexpected, experts said, because of the recent failure, announced in August 2021, of a separate clinical trial, called Imbokodo, which tested a similar vaccine among women in Africa. Between the two trials, NIAID spent $56 million, according to an agency spokesperson.
The vaccines testedin both trials used a common cold virus to deliver what are known as mosaic immunogens, which were intended to trigger a robust and protective immune response by including genetic material from a variety of HIV strains prevalent around the world, according to the National Institutes of Health. Mosaico included an additional element intended to broaden the immune response.
Participants in Mosaico, who were between ages 18 and 60, received four injections over 12 months, either of the vaccine or a placebo. The monitoring board found no significant difference in the HIV acquisition rate between the two study groups.
Fauci said that a critical limitation of the Mosaico vaccine was that it elicited what are known as non-neutralizing — as opposed to neutralizing — antibodies against HIV.
“It is becoming clear,” he said, “that vaccines that do not induce neutralizing antibodies are not effective against HIV.”
The critical problem that has bedeviled HIV vaccine research for decades, Fauci noted, is a crucial weakness that the virus already successfully exploits: The natural immune response to infection is not sufficient to thwart the virus.
“So vaccines would actually have to do better than natural infection to be effective,” he said. “That would be a very high bar.”
A decadeslong effort
In 1984, following the discovery of HIV as the cause of AIDS the previous year, President Ronald Reagan’s health secretary, Margaret Heckler, famously claimed a vaccine for the virus would be available within two years.
In the decades since, there have been nine late-stage clinical trials of HIV vaccines, including Mosaico and Imbokodo, plus one, called PrEPVacc, that is still underway in Africa. However, the vaccine in PrEPVacc is not considered to be on a direct path to licensure if it demonstrates efficacy. Only one of these vaccines has shown any efficacy — and only at a modest level, not considered robust enough for regulatory approval — in a trial conducted in Thailand between 2003 and 2006, the findings of which were published in 2009.
In the years since, a phalanx of global researchers has studied the Thai trial in hopes of developing insights to inform further HIV-vaccine development.
The yearslong effort to design the Imbokodo and Mosaico vaccines was in part grounded in an attempt to build on the modest success of the Thai trial.
“We had hoped that we would see some signal of efficacy from this vaccine,” said Dr. Susan Buchbinder, an epidemiologist at the University of California, San Francisco, who co-led the Mosaico trial. She added that, promisingly, as in the Imbokodo trial, there were no evident concerns about the vaccine’s safety.
Buchbinder said it is too early to determine the reasons behind the Mosaico vaccine’s failure. Her team will be analyzing blood samples from participants over the coming months to investigate. They will also seek to determine if there were any subgroups of participants among whom the vaccine did show any efficacy. As with the Thai trial, the hope is to channel research findings into future HIV vaccine development.
Other HIV prevention tools
Jennifer Kates, director of global health and HIV policy at Kaiser Family Foundation, said the trial’s failure is a “stark reminder of just how elusive an HIV vaccine really is and why this kind of research continues to be important.”
“Fortunately, there are a number of highly effective HIV prevention interventions already,” Kates added. “The challenge is to scale them up to reach all at risk.”
Pre-exposure prophylaxis, or PrEP, in which people at risk of HIV take antiretroviral medications in advance of potential exposure to the virus, is highly effectiveat preventing infection but remains vastly underutilized in the U.S. and around the world.
Additionally, researchpublishedin the mid-2000s showed that voluntary medical male circumcision lowers the risk of female-to-male HIV acquisition by about 60%. This led to a major effort to promote circumcision in sub-Saharan Africa, home to two-thirds of the HIV cases in the world.
In more recent years, an antiretroviral-infused vaginal ring has proven effective at lowering women’s HIV risk. Initial efforts are underway to introduce it in African nations.
And, of course, there is the old mainstay: condoms.
Globally, an estimated 38.4 million people were living with HIV in 2021, according to the Joint United Nations Programme on HIV/AIDS. Some 1.5 million people currently contract the virus annually, a figure that has more than halved since its peak in 1996.
It is at least theoretically possible, although extremely challenging, to bring HIV to heel without a vaccine. Fortunately, successfully treating HIV eliminates the risk of transmitting the virus through sex. So HIV transmission has declined in recent years in large part because of the dramatic scale-up of antiretroviral treatment of the virus, which by 2021 reached 28.7 million people.
Mosaico was particularly challenging to design ethically because of the advent of PrEP, which was first approved in the U.S. in 2012. To prove a vaccine works, researchers must recruit participants who remain at substantial risk of HIV over time. So Mosaico first offered PrEP to those seeking to enroll in the trial and only accepted as participants those who adamantly declined the preventive therapy notwithstanding their risk of HIV.
The appropriations bill for the fiscal year 2023 released by Congress on Tuesday contains an additional $100 million for the U.S. Department of Health and Human Services’ Ending the HIV Epidemic in the United States initiative.
Among other programs, the funding will strengthen efforts to increase the adoption of preexposure prophylaxis (PrEP) to reduce the risk of new HIV infections.
In a press release, the HIV+Hepatitis Policy Institute celebrated the boost from Congress but noted that more must be done — including a national PrEP program.
“The increases will help expand HIV programs in the targeted jurisdictions most impacted by HIV,” said Carl Schmid, the group’s executive director. However, “given that Congress again has not fully funded the initiative and has not provided dedicated funding for a national PrEP program, ending HIV by 2030 will be in serious jeopardy.”
President Joe Biden has proposed a $9.8 billion 10-year national PrEP program, which is widely considered a crucial step in addressing the gaps in access to the HIV prevention drugs among, particularly, Black and Latino gay men and Black women.
HHS’s Ending the HIV Epidemic in the United States program, launched in 2019 under President Donald Trump, aims to bring the number of new HIV infections down 90 per cent by 2030 through investing in key strategies for prevention and treatment.
The initiative is coordinated with several other federal agencies: The Centers for Disease Control and Prevention, the Health Resources and Services Administration, the Indian Health Service, the National Institutes of Health, and the Office of the HHS Assistant Secretary for Health and Substance Abuse and Mental Health Services Administration.
The HIV+Hepatitis Policy Institute’s press release notes Tuesday’s appropriations bill will be the final spending package passed with House Speaker Nancy Pelosi (D-Calif.) serving as Democratic leader.
Pelosi, in her first speech as a congresswoman in 1987, said to her colleagues that “now we must take leadership of course in the crisis of AIDS.”
“The speaker’s work on this issue continued through her time in leadership, including her passage of foreign aid packages, the Affordable Care Act, and funding for the HHS’s Ending the HIV Epidemic in the United States program,” said the HIV+Hepatitis Policy Institute press release.
Want to be part of ending new HIV transmissions this decade? Here’s what you need to know.
Over the last decade, the fight against HIV has been transformed by medical breakthroughs.
England is on track to end new transmissions by 2030, with the HIV prevention medication PrEP, alongside more traditional methods of prevention (HIV testing, condoms, and U=U), proving to “accelerate the downtrend in new HIV infections in recent years”, according to Robbie Currie, lead commissioner of London’s HIV prevention program branded: Do It London.
Jo, 27, from Hackney, has been taking the once-daily pill for two years. It works by preventing the HIV virus from replicating in the body.
“PrEP has totally changed my relationship towards sex,” they say. “Before, sex was always tinged with a slight uncertainty and fear in the aftermath, but since I’ve been taking it, I’ve been able to let go.”
People can enjoy great sex while protecting themselves from HIV. (Stock image via Getty)
PrEP (pre-exposure prophylaxis) is one of four proven methods which, when combined, can stop the spread of HIV. The other three are using condoms, regular HIV testing, and treatment upon diagnosis of HIV to achieve an “undetectable” status.
If people who have HIV have been taking effective HIV treatment and their viral load has been undetectable for 6 months or more, it means they cannot pass the virus on through sex. This is called undetectable=untransmittable (U=U).
Across London, people are combining these four methods to have great, safe sex while helping to stop the spread of HIV.
Benjamin, 32, from Bermondsey, has just become a PrEP user in the last month. Beforehand, he visited his local sexual health clinic every three months to get tested for sexually transmitted infections, including HIV, and he’ll continue to do so now.
PrEP is a daily pill that protects from HIV. (Getty)
“Before I used PrEP, I was pretty diligent about using condoms and getting tested,” he says. “PrEP doesn’t protect against all STIs, so I’ve still been using condoms most of the time and I’m still going to get tested every three months.” (Taking regular HIV tests is a requirement for PrEP).
Phil, 34, from Haringey, was diagnosed with HIV in 2018. He takes one pill every day and is “undetectable”, so he can’t pass the virus on to any sexual partners.
“One thing I was so happy to learn is that if you’re diagnosed with HIV, like me, and you get access to treatment early, then you can live a long life,” he says. “And you can still feel good about yourself and have great sex.”
HIV myths busted
Thanks to PrEP, improved access to testing and other medical advancements, London and England as a whole are on track to end new HIV transmissions by 2030 – something which would have once seemed inconceivable.
But there are still challenges ahead to reach the goal. Currie says that misconceptions around HIV are still an issue and HIV related stigma is still present.
“People aren’t aware of how much treatment and prevention options have advanced,” he says. “And one of the biggest misconceptions is that someone with HIV can still pass it on if they are on effective treatment, which we know isn’t true.”
People with HIV can live long, healthy, happy lives on effective treatment. (Stock image via Getty)
Another misconception, Currie says, is that people on HIV treatment have drastically different health outcomes in later life.
“If you have HIV and receive treatment early, there is no reason why you won’t have a normal lifespan,” he says.
Something else people aren’t always aware of is that, if you have unprotected sex and you aren’t on PrEP, there is medication that can be taken for 72 hours afterwards.
PEP (post-exposure prophylaxis) is a short course of HIV medicines taken very soon after a possible exposure to the virus, to prevent it from taking hold in your body.
The best place to get PEP is a sexual health or HIV clinic, but if you need PEP over the weekend or outside of office hours, when clinics will often be closed, it’s available at accident and emergency departments.
Condoms are one of the four proven methods of preventing HIV. (Getty)
In an ideal world, PrEP and condoms would prevent such a situation from arising. But sex doesn’t always pan out that way. “Now that we have PrEP, what we’re trying to do is shift the dial a bit,” Currie explains. “So if you’re at a period in your life where you may be more exposed to HIV, then we really want you to be on PrEP.”
The good news is that we now have the tools to eliminate HIV, because there are prevention and treatment medications that are effective.
“Our latest Do It London campaign called ‘Be sure, know the four’ seeks to raise the awareness and uptake of the methods of HIV prevention to those most at risk.” Currie says. “The campaign is funded by all of London’s local authorities who remain committed to ending new HIV diagnoses by 2030.”
If you were diagnosed with HIV in the first fifteen years of the AIDS pandemic, your doctor might as well have handed you the diagnosis with one hand and with the other a death certificate, just waiting for the appropriate date to be filled in. Having HIV was an almost certain death sentence. Those of us who were diagnosed as HIV-positive in those years were told to “get your affairs in order,” meaning, “prepare to die.”
Many of us did exactly that: we quit work, lived on SSDI payments, settled debts if we could, alerted our friends, and learned to live with the constant expectation that we could meet an ugly, painful death at any time. Very few of us were able to “keep hope alive.”
That long-awaited hope arrived in 1996 with the advent of HAART (Highly Active Anti-Retroviral Treatment), the first efficacious treatment for HIV. Suddenly, the possibility of “living with HIV,” instead of “dying of AIDS,” became a reality for those of us with access to HAART. We rejoiced — we were going to survive the virus that had taken so many of our friends, lovers, and family from us! We tore up those proffered death certificates — we were going to live!
We soon realized, however, that surviving the pandemic, living with HIV, would bring its own problems. Those of us who couldn’t work and lived on SSDI were trapped in poverty; and the outrageously expensive medications we took, while saving our lives, caused innumerable new medical problems: chronic fatigue, accelerated ageing, loss of bone density, liver diseases and failure, a propensity for various cancers, enhanced risk of cardiovascular diseases, and myriad comorbidities. Further, in the pre-U=U days, we lived in fear of transmitting the virus to others. And surviving did nothing to lessen the stigma we faced for being HIV-positive, often within our own communities, causing an epidemic of isolation, loneliness, despair, and depression.
Human beings are meant for more than just “surviving,” we are meant to thrive. But how does one thrive while living with a still-debilitating, stigmatized virus? To find out how some have thrived, and not merely survived, I talked with three long-term survivors, friends from a Thursday night writing group, about their growth from surviving to thriving.
Harley, a San Francisco resident, was thirty-four when he acquired HIV; at seventy-six, he has lived with HIV for forty-two years. Like many of us, Harley said he reacted to his diagnosis with “shock and sadness, fear and depression, isolation and hopelessness, desperation and confusion. I was relieved to finally know my serostatus, but it caused distractions at work and negative projections of my profession, social life, love life, family relations, and fear of the future.” After a period of depression and self-mourning, Harley was determined to take care of himself. “I made a commitment to myself that I would not only survive, but strive to thrive.”
That commitment led Harley to a very proactive approach to living with HIV. He connected with other HIV-positive friends; read all the current information about HIV; attended community meetings led by doctors; joined support groups at San Francisco AIDS Foundation, the Shanti Project, and the Stop AIDS Project; joined an HIV-positive yoga class; quit smoking cigarettes and drinking alcohol; and began a healthy natural diet. Of course he continued to encounter barriers to thriving—economic challenges; job stress; the continuous loss of friends, neighbors, co-workers and community members. He credits “yoga, acupuncture, meditation, dharma talks, humor, comedy, dancing, hiking, and swimming” with helping him stay healthy enough to thrive.
Harley said, “service became a new medicine for me. I volunteered at San Francisco AIDS Foundation’s telephone Hotline when it first started at old drafty building on Valencia Street. I also trained at Shanti and became a ‘buddy.’ I spoke at local schools as an AIDS educator and became active with AIDS political activist groups like Project Inform and ACT-UP.” Significantly, he changed professions and started work full-time at an HIV medical clinic. These days, he said, he now deals with “normal geriatric issues rather than HIV fears.”
Rebecca Dennison was diagnosed with HIV in 1990, although she is certain she acquired the virus in 1983 and lived with it for seven years before her diagnosis. “I was devastated. In June 1990, HIV was considered a death sentence. I thought I had only months to live. I was about to start law school when I found out. I decided not to go. Partly because I didn’t think I’d live long enough to finish.” In those days before the ACA, and before the Ryan White Care Act passed, Rebecca continued to work in order to retain her health insurance. “To me, being uninsured meant you were going to die even sooner than you would otherwise. So having insurance was as big an economic issue as having an income.” With the support of her workplace, she continued to work until she could get covered through her husband’s insurance. Despite the support of dear friends and her husband Daniel, “I felt alone and alienated. People were kind but they really couldn’t understand what it was like to be me. I felt like I was living in a 4th dimension where we all saw the same world but experienced it differently. For a while, I felt really angry at HIV-negative people for the privilege of being able to walk away if they wanted. And then I felt ashamed of being angry because I knew it wasn’t fair to be mad at people for being healthy.”
At first, after her diagnosis, Rebecca was afraid to make plans beyond one year. She had planned to become an immigration lawyer specializing in asylum law. When that plan collapsed, “I didn’t know what to do with myself. But AIDS activists, friends, and family all encouraged me to follow my heart and get involved in AIDS activism–and I did.” She threw herself into fighting for herself and others. “I joined ACT UP Golden Gate, went to all the Project Inform town meetings, started going to conferences, and then started WORLD, an organization by, for, and about HIV-positive women (because they were missing in most of those places). Through that work I got to be friends with women from all over the world, especially after I helped start the ICW (International Community of Women Living with HIV/AIDS).
“Of course, coming to love all those people also meant losing hundreds of people as well. That part was tough. It was tragic to see people die in what should have been the prime of their life. And the cumulative grief of hundreds of people dying while most of the world really didn’t give a damn… that wore me down.” She paused her HIV work in 2003 and went off to raise her daughters. After a while, “I just missed it too much. Various histories of AIDS started coming out and the vast majority left women out completely, which really bothered me. So I started writing, got into therapy, and eventually started reconnecting with other long-term survivors. One of the silver linings of COVID was that we were forced to learn how to meet by Zoom. Suddenly, that opened all kinds of doors. I’m in two weekly writing groups with long-term survivors, which I wouldn’t have joined if I’d had to cross the Bay Bridge to attend—and I’m loving it. The writing always provides a way in to connect with more depth than we might if we were just making small talk.”
Activist, writer, and long-term survivor Harry Breaux learned he was HIV-positive in 1984. Harry had contributed blood samples to a CDC clinical study of hepatitis. The samples from 1979 were negative for HIV, but samples he gave in 1981 were positive for HIV. Thus, he deduces that he contracted the virus in 1980, at age thirty-five; he celebrated his seventy-seventh birthday in March 2022.
“Initially, I was not surprised when I was called in and given the results of the HIV antibody test,” he told me. “After having so actively participated in the sexual freedoms of the 1970s, I knew that I probably had been exposed and probably had contracted the virus. As a slow progressor, my physical life changed very little, but my mental and emotional life was devastated. As long as I felt ‘healthy,’ I continued to live a ‘normal’ life on the outside, but mentally and emotionally, I lived with the knowledge that every little change in my physical condition, every sniffle, every pimple, every cough prophesied the beginning of my march toward death. It just never came for 15 years. Then when I did approach death in 1996 [diagnosed with AIDS], the ‘cocktail’ came along to save me.”
Harry Breaux (Photo: SFAF)
Like the majority of us long-term survivors, Harry faced barriers to thriving. “Finding supportive and stable housing and sufficient financial assistance to care for myself. Finding social support from others who understand my situation or the situation of those in similar circumstances. Finding medical services sensitive to my unique physical condition of being HIV-positive and aging.” He credits San Francisco AIDS Foundation, Openhouse, PRC, the Shanti Project, and other organizations with providing rent and food subsidies as well as opportunities to connect with other HIV-positive survivors. “When I first noticed that I was driven by a different sexual impulse and believed I was the only one, that I was flawed, I felt alone and lonely. Being HIV-positive and surviving so many friends left me feeling old, alone, and lonely. But finding the HIV Community and its strength has allowed me to look at my life as one of thriving through the experience of surviving. No longer alone and lonely as a person with HIV, I now recognize thriving as a viable present and future.”
I asked all three of these survivors what “thriving” means to them as opposed to “surviving.” The three of them gave me similar, almost identical definitions. Here’s Harry’s definition:
“Thriving to me means being able to function as a ‘normal’ human being; being able to experience joy and sadness and peace along with love and compassion; being able to take care of my own personal needs. being mentally alert and creative; being able to contribute to the society around me; being able to maintain my independence; being able to experience the ‘normal’ ageing of my body appropriate to my age; being able to assist others.
“Surviving to me means just being able to breathe, move, eat, and shit.”
As members of the AIDS Generation, we long-term survivors have a deep well of knowledge and experience to share with the newly diagnosed. Unsurprisingly, when asked for advice to the newly diagnosed, all three stressed the same things: know that HIV is no longer fatal if you stick to your medications and take care of your health; educate yourself about the virus, its effects, and how to combat them; learn the history of the pandemic; know that you are not alone, flawed or damaged by this virus, but you are challenged to maintain your hope and tenacity in its unyielding face; know the science, listen to the professionals, and seek to find your own way through; release any sense of shame you may have for being positive; maintain your social life by connecting with other HIV-positive people; volunteer in your community; never hesitate to ask for emotional or financial support from the resources that are available; remain hopeful.
Rebecca offered the most eloquent advice I can think of:
“Pursue your passions. People who feel happy take joy in the happiness of others. People who feel loved want others to feel loved. People who are inquisitive and curious inspire curiosity in others. If you can find a way to lend your time and talent to making the world a better place, all the better. I have seen how having a sense of purpose helps people who are struggling get out of bed in the morning. There’s no ‘right’ way to do this. You do you. Make your art. Write your poetry. Draft awesome legislation. March in the streets. Teach a child to read. Feed someone who’s hungry. Save a redwood tree. Rescue puppies. Grow tomatoes. Smile at the bus driver. Be kind to the checker at the grocery store. Whatever experiences you’ve had up until this point make you a truly unique individual with skills and insights and interests unlike anyone else’s on the planet. If you have a degree, great. But if you don’t, you’re still an expert in lots of things. Don’t overlook the fact that everyone has value and has something to contribute.”
I’ll give Harley the last word: “Trust in your future. Keep Hope Alive.”
Did you know that you could be discriminated against by insurance companies for taking PrEP?
I didn’t.
Recently, I have been searching for long-term disability insurance options while living in California. Long-term disability insurance could offer some peace of mind if some tragic, unforeseeable event left me unable to work. I chatted with an insurance broker, who scanned providers nationwide, and reported back to me that because I took PrEP daily, most insurers wouldn’t allow me to participate in their program. Drugs prescribed for PrEP such as Truvada, Descovy, and Apretude are on a list of “unaccepted” medications.
I received what she said matter of factly. I only heard the information at that moment. I didn’t really process it. It was only later that evening, that the news settled in and it truly struck me–what the actual fuck?!
An insurance policy that excludes people taking PrEP is rooted in misinformation and stigma, and actually has counterproductive outcomes.
We should be encouraging communities, especially those at high-risk, to take PrEP. PrEP reduces the risk of getting HIV from sex by about 99% when taken as prescribed, therein offering the promise of finally managing and ending the spread of this virus when combined with access to screening services.
While only 3% of the 1.2 million people for whom PrEP is recommended were prescribed it in 2015, that number rose to 25% in 2020, demonstrating the notable gains achieved. But what’s stopping this number from reaching 100%? I believe it’s interactions like those between this insurance broker and myself that contribute to the hardship that people still face for trying to protect their health.
California’s first openly gay Insurance Commissioner, Ricardo Lara, has decidedly taken on insurance companies to protect those seeking access to PrEP services. An investigation by the Department of Insurance examined life, disability income and long-term care insurance companies and discovered evidence that “some insurers had denied or limited coverage, restricted products available through accelerated underwriting, placed conditions on coverage, or charged higher rates to users of pre-exposure prophylaxis, or PrEP, medication.”
Accordingly, The Department of Insurance issued a notice reminding insurers a person’s history of PrEP use cannot be used as a justification to deny life, disability or long-term care insurance coverage or charge higher premiums for that coverage under California’s The Equal Insurance HIV Act, which becomes enforceable starting January 1, 2023.
But insurers don’t have to wait until then to do away with discriminatory practices. That’s why I texted the insurance broker and asked her if she could be an ally for queer people and remind the underwriters she’s in communication with that this should not be allowed and, at least in California, won’t be allowed soon. She didn’t respond, but I hope she’s thoughtfully considering my message.
The impact of this law especially brings me comfort as a Black, gay man, because I’ve seen how HIV and AIDS have disproportionately impacted my community. Tools for combating this virus should not be made any more challenging to access than they already are. Some estimates show that 1 in 2 gay black men may contract HIV in their lifetimes. Anything we can do to provide relief to our already-hurting community is welcomed.
Apart from institutional forces such as the archaic, discriminatory insurance policies that create stigma around PrEP use, there are also social ones. Some folks who take PrEP are called “Truvada whores.” There is a perception that because they’re taking the medication they must be very sexually active, and unfortunately both everyday folks and even the medical community themselves aren’t immune to this perception.
In actuality people who take PrEP are a part of the solution for stopping the spread of HIV. But, they may feel like they’re doing something wrong or that they have to hide thanks to this stigma. No one should feel like they’re being punished because they’re trying to take control of their health.
Terrance Wilder was diagnosed with HIV at the age of 20, and now works with San Francisco AIDS Foundation to help others gain access to PrEP. He’s deeply concerned about making sure access to PrEP is available to people who need it the most.
“If a person doesn’t have a stable place to live or consider themselves homeless, PrEP most likely will not be as much of a priority for them although they may be putting themselves at risk daily,” Wilder said. He’s also seen how transportation can be a barrier as some folks may can’t make it to their appointments or to pick up their medications, and mental health disparities can be barriers for folks in many ways.
Laws are just one tool to affect change in our society. How we treat each other and support each other on the individual level creates an environment that moves our society towards addressing health access and equity as well. One of the most dangerous things we can do for society is to allow being uninformed to create additional harm onto communities needing our help the most.
