A Navy veteran is suing the US government after doctors allegedly forgot to tell him he tested positive for HIV in the 1990s.
The South Carolina man says he was unaware he was living with HIV for more than two decades after government health workers failed to inform him of his test results.Read More
A federal lawsuit explains how he was tested in November 1995 at a Department of Veterans Affairs (VA) medical centre in Columbia, South Carolina as part of routine lab work.
The veteran, named only as John Doe in the filing, was under the care of the department after being involved in a 1976 shipwreck which left him with post-traumatic stress disorder (PTSD).
However, “in clear contravention of the standard of care, Mr Doe was not informed of the positive HIV test until decades later”, the lawsuit states.ADVERTISING
In fact, it wasn’t until 2018 that the veteran says he was made aware of his status.
In 2014, a nurse practitioner at the Columbia facility had noted the 1995 test results in a memo. Mr Doe still wasn’t informed, the suit states.
He saw another VA doctor in 2015 who asked if he knew who his infectious disease doctor was. When he replied that he didn’t have one, the doctor reportedly asked the veteran if he knew whether he was living with HIV. Even still, the suit states, Mr Doe wasn’t made aware of his positive status.
Finally, in September 2018, the veteran visited an emergency room not affiliated with the department. It was here that he says he was diagnosed with HIV and AIDS, and immediately began treatment.
According to the suit, the veteran had by this time developed a number of related illnesses including an infection of his brain tissue.
“[He] needlessly suffered for decades with co-existing conditions common in HIV infected persons, including lymphadenopathy, neurotoxoplasmosis, muscle aches and joint pain,” the lawsuit says.
“Had defendants acted within the standard of care, Mr Doe would not have suffered the losses he has suffered, and will continue to suffer in the future, and more likely than not, he would not have developed AIDS.”
The veteran’s lawyer Chad McGowan said he is responding to antiretroviral therapy, but has “had essentially 25 years of wear and tear for having no treatment”.
“He feels extremely guilty about the girlfriends he’s had over the last 25 years because he didn’t know.”
The Department of Veteran Affairs told the Associated Press it “does not typically comment on pending litigation”.
HIV is treated with antiretroviral drugs which prevent the virus from replicating in the body. It’s recommended that anybody diagnosed with HIV begins treatment immediately.
According to the Terrence Higgins Trust, a person who is diagnosed and starts treatment early can expect to live as long as person without HIV.
Once the treatment has lowered the levels of the virus in a person’s blood – their viral load – they are unable to pass on HIV and the virus is no longer able to damage their immune system. This is known as being undetectable (meaning tests can no longer detect HIV in a person’s blood). Undetectable equals untransmittable.
A man in Perth, Australia, has been jailed for five years after he failed to disclose that he was living with HIV to four sexual partners – all of whom later tested positive for the virus.
The 30-year-old, who has not been named to protect the identities of his victims, told the four men that he did not have HIV before having condomless sex with them, the West Australian reports.
A court heard that the accused had actually been diagnosed with HIV in 2012.
In 2013, he told a man that he did not have HIV before having condomless sex with him. His sexual partner was later diagnosed with the virus.
In 2014, he told another man through the dating app Squirt that he did not have HIV. A year later, the two met and had condomless sex. Just weeks later, his sexual partner became ill, and he tested positive for HIV four months later.
In 2012 the accused embarked on a long-term relationship, and told his boyfriend that he did not have HIV. They started having condomless sex in 2014, but his boyfriend’s suspicions were aroused in 2015 when he found antiretroviral medication.
The boyfriend went for a HIV test and discovered that he too had the virus. They separated a year later.
Following that incident, the accused met up with a man through Tinder and had condomless sex with him after claiming that he did not have HIV. That man also tested positive.
Man who lied about HIV status ‘extraordinarily selfish’.
The offender was arrested in January 2018 and charged with unlawfully engaging in an act that was likely to endanger his victims’ life, health or safety.
In his sentencing, district court Judge Troy Sweeney said the man had been “reckless” by failing to disclose his HIV status to the four men.
The man claimed that he had struggled with his diagnosis and was afraid of being ostracised by his community, but Sweeney accused him of burying his head “in the sand”.
He told the man that he had failed in his “duty” to his fellow human beings by not telling the men that he had HIV.
“Your behaviour was so extraordinarily selfish, so utterly self-absorbed,” the judge told him.
“Apart from the illegality of what you did, it was so grossly immoral to fail to take precautions and to fail to be honest with these four men with whom you were sexually involved.”
His sentence was backdated to July 2019 and he will be eligible for parole after serving three years.
Today, people who live with HIV can have an undetectable viral load when taking effective medication – meaning they cannot pass the virus on through condomless sex.
However, when the viral load is not controlled through antiretroviral medication, it can be passed on through sex.
Puerto Rico Resident Commissioner Jenniffer González Colón and former U.S. Rep. Ileana Ros-Lehtinen (R-Fla.) on Monday stressed the fight against HIV/AIDS remains a bipartisan issue.
“This is a health issue,” said González during a Zoom call that AIDS United organized. “This is not about a certain group of the community. This is not about a specific gender. This is about health care. This is about health.”
González is a Republican non-voting member of the U.S. House of Representatives who is a member of Puerto Rico’s pro-statehood New Progressive Party. California Congresswoman Barbara Lee, who chairs the Congressional HIV/AIDS Caucus, late last year named González co-chair of the group.
González on Monday said more than 40,000 people in Puerto Rico live with HIV. She also noted she and Lee in March introduced a bill that would repeal laws that criminalize people with HIV/AIDS and discriminate against them.
“This is something that goes across party lines,” she said. “This is something that affects everybody … we should be doing something about it.”
Ros-Lehtinen, who was born in Cuba, in 1989 became the first Latina woman elected to Congress. She represented portions of South Florida in the House until her retirement in 2019.
Ros-Lehtinen co-chaired the Congressional HIV/AIDS Caucus until Lee named González as her successor.
“Jenniffer understands the issue,” said Ros-Lehtinen on the call, referring to González.
Ros-Lehtinen acknowledged the HIV/AIDS pandemic has “heavily impacted” South Florida.
González herself announced hours after she participated in the AIDS United call that she had tested positive for coronavirus.
Ros-Lehtinen noted she and Lee had vastly different positions on a variety of issues, but “on this subject and on many other subjects, there are no party labels.”
“You have the disease, there’s no discrimination,” said Ros-Lehtinen.
González agreed.
“I believe in equality,” she said. “I’m living in Puerto Rico where 3.2 million Americans are disenfranchised. They cannot vote for president. They cannot vote for their senators. They don’t have equal representation in Congress. I can’t be selecting how equality is going to be defined or what issues are equal or what not.”
“Equality is equality,” added González. “Health care is equality and in that sense I should be representing my island and all the people, including the people with HIV.”
The AIDS United call coincided with the first day of the Republican National Convention.
President Trump in his 2019 State of the Union address vowed to end the HIV/AIDS epidemic within a decade. Advocates with whom the Blade spoke at the time expressed skepticism and noted, among other things, Trump in 2017 abruptly fired all members of the Presidential Advisory Council on HIV/AIDS without explanation.
The Trump administration’s record on LGBTQ rights issues has been sharply criticized. Outgoing Puerto Rico Gov. Wanda Vázquez Garced, who is a member of González’s party, has also faced intense criticism from activists in the U.S. commonwealth and elsewhere over her administration’s LGBTQ rights record.
Ros-Lehtinen on the call noted former Vice President Biden, like Trump, has also pledged to end the HIV epidemic.
“This is a human issue,” said Ros-Lehtinen. “It’s not a Republican problem or a Democratic problem. We’ve got to come together to solve it.”
AIDS United President Jesse Milan, Jr., who has lived with HIV for 38 years, agreed.
“Ending this epidemic is clearly a bipartisan issue,” he said.
HIV/AIDS service providers in Florida say the coronavirus pandemic has further exacerbated health care and economic disparities that many of their clients face.
Tatiana Williams is the co-founder and executive director of Transinclusive Group, a Fort Lauderdale-based organization that serves transgender people in South Florida. Williams is also the co-chair of South Florida FLUX, which advises AIDS Healthcare Foundation on trans-specific issues.
Williams on Aug. 11 told the Washington Blade during a telephone interview from Fort Lauderdale the pandemic “just really highlighted some of the challenges that are happening within the transgender community.”
“A lot of our clients were already dealing with unemployment, dealing with a lack of access to health care, dealing with a lot of these issues,” she said.
Williams said her organization’s Transinclusive Emergency Crisis Fund has been able to provide clients emergency housing and a host of other services that include help paying utility bills and medications.
“You had a lot of our clients working in these nightclubs that were closed down, so a lot of them immediately went into a position of survival mode and not having access to a lot of things,” she said. “With COVID, it just turned their lives upside down.”
Williams said problems with Florida’s unemployment system delayed payments to many Transinclusive Group clients who lost their jobs because of the pandemic. Williams told the Blade they “were behind” once they began to receive unemployment checks, and this delay created “gaps” in their medications.
“A lot of health care providers weren’t working at full capacity,” she said. “A lot of them weren’t even returning calls, so a lot of the clients, especially HIV-positive clients, hadn’t received care, so we had to go into the telemedicine mode and we were linking people back to care.”
Other HIV/AIDS service organizations in Florida have made similar adjustments in response to the pandemic.
Arianna Lint is a Peruvian woman with HIV who founded Arianna’s Center, a Wilton Manors-based organization that serves trans women with HIV.
She told the Blade on Aug. 3 during an interview at her office the pandemic has made her organization’s work “more difficult because we have (had) to invest more time” with teaching clients how to use technology to access health care. Lint said Arianna’s Center has also had to visit clients at their homes.
Stephen Fallon, co-founder and director of Latino Salud, another Wilton Manors-based organization that serves LGBTQ Latinos with HIV, during a July 23 Zoom call with other HIV/AIDS service providers that AIDS Healthcare Foundation organized said the majority of health care providers in his area remained open “to some extent” during the lockdown imposed when the pandemic began. Fallon said testing agencies were closed during this period.
“We were getting deluged with all the folks who needed testing services who couldn’t go anywhere,” he said.
Latino Salud is an HIV/AIDS service organization in Wilton Manors, Fla., that serves gay Latino men. (Washington Blade photo by Yariel Valdés González)
Scott Pridgen is executive director of AH Monroe, an organization that serves people with HIV/AIDS in the Florida Keys.
AH Monroe has offices in Key West, Marathon, Tavernier and Key Largo.
Pridgen on Aug. 12 told the Blade during a telephone interview from Key West the pandemic has forced his organization to operate its offices virtually, “which is new because a lot of our case management, especially our older population that is living with HIV have other co-morbidities that require more of a physical, hands-on type of care versus doing it virtually.”
“We’ve had to take that into consideration,” said Pridgen.
The pandemic began during the height of the Keys’ tourism season, which Pridgen said is “when people make their money to carry them through during the slow season.”
Pridgen told the Blade that AH Monroe has been able to provide short-term mortgage, rent and utility assistance through grants from the CARES Act, the Housing Opportunities for Persons with AIDS (HOPWA) program and the U.S. Department of Housing and Urban Development’s Office of HIV Housing.
“The biggest need due to COVID-19 in Monroe County is housing, paying rent for someone or mortgages,” said Pridgen.
Pridgen added Keys residents “who’ve never asked for anything, ever, ever, (are) in line at the food bank or you’re handing them a bag of groceries.”
AIDS Healthcare Foundation Regional Director Dawn Averill is based in Pensacola, but works throughout Florida and the Deep South. Averill on the July 23 Zoom call echoed Pridgen’s observations about the pandemic’s impact.
“We’re actually seeing a lot of fear,” said Averill, referring to people with HIV/AIDS. “They’re fearful to go to the grocery store. They’re fearful to come to the office, to get their blood drawn, to see their families.”
Averill also noted “significant health disparities” in rural and urban areas that factor into health outcomes for people with HIV/AIDS.
State Rep. Carlos Guillermo Smith, who represents portions of Orlando in the Florida House of Representatives, on Aug. 14 noted to the Blade during a telephone interview that HIV rates in Florida are higher among trans people, people of color, undocumented immigrants and other vulnerable groups. Smith said efforts to curb the coronavirus’ spread have had a disproportionate impact on these populations.
“Quarantines and other COVID-related restrictions are also pushing people with HIV who are already vulnerable into isolation away from friends, chosen family,” he added.
South Florida remains state’s coronavirus epicenter
The Florida Department of Health on Tuesday said there have been 579,932 confirmed coronavirus cases in the state. Statistics also indicate the pandemic has killed 9,758 people in Florida.
Miami-Dade and Broward Counties remain the pandemic’s epicenter in Florida, with 25 and 12 percent of the state’s total cases respectively. Statistics indicate the coronavirus has killed 2,126 people in Miami-Dade County and 1,025 people in Broward County.
The Florida Department of Health reported 15,300 new coronavirus cases on July 12, compared to 3,838 new cases on Monday. A press release notes the rate of positive tests in the state on Tuesday were below 10 percent for the sixth consecutive days.
Republican Gov. Ron DeSantis nevertheless continues to face widespread criticism over his response to the coronavirus. Many of the HIV/AIDS service providers with whom the Blade spoke noted he has not imposed a statewide mask order and moved too quickly to reopen Florida.
“He’s shown time and time again that he is a politician over everything,” Equality Florida HIV Advocacy Coordinator Alejandro Acosta told the Blade on Aug. 14 during a telephone interview from Wilton Manors. “He makes health care decisions based on his politics and his personal beliefs and that is not conductive for a good public health outcome.”
A coronavirus advisory along Interstate 95 near Melbourne, Fla., on Aug. 4, 2020. (Washington Blade photo by Michael K. Lavers)
Smith, who is also Equality Florida’s Central Florida Outreach Coordinator, told the Blade he welcomed DeSantis’ decision in March to lock down nursing homes and other long-term care facilities in order to curb the pandemic’s spread. Smith was nevertheless critical of the governor’s overall response.
“We’re the world’s epicenter of the pandemic and we still don’t even have a statewide mask order, which costs us nothing,” Smith told the Blade.
Smith also expressed concern over the Department of Health’s decision to reassign employees who worked on HIV and STI-related issues to fight the coronavirus.
The Department of Health on Tuesday declined to make anyone available to the Blade for an interview about efforts to protect vulnerable Floridians with HIV/AIDS during the pandemic.
“COVID-19 requires an unprecedented response at both the state and local level,” said the Department of Health in an email.
The Department of Health has yet to respond to a follow-up email about Smith’s concerns.
“We have an HIV workforce in Florida,” Smith told the Blade. “As a direct result of COVID-19, we’re just kind of seeing this trend of diversion of scientific and public attention away from HIV in Florida. That’s what has me concerned.”
“We could come out of the other end of this pandemic and realize that we have another public health crisis on our hands,” he added. “It’s a recipe for disaster if we don’t focus and if we don’t veer course when it comes to staying committed to HIV prevention.”
American Gene Technologies, a Rockville, Md.-based gene and cell therapy company, announced on Aug. 11 that it has received approval from the U.S. Food and Drug Administration to begin its first human clinical trial for a unique cell altering treatment that it believes will enable the immune system of people who are HIV positive to permanently eliminate HIV from their body.
“AGT developed a new treatment to repair immune system damage done by HIV and allow natural responses to control the virus,” the company says in a statement announcing the approval for its clinical trial. “From its research, AGT believes a cure is attainable and is now taking the significant step of testing in humans.”
The statement says AGT is conducting its Phase 1 clinical trials at sites in the Baltimore-D.C. area. It says the Washington Health Institute in Northeast D.C., Georgetown University, and the University of Maryland’s Institute of Human Virology in Baltimore will be the three sites for the trials.
According to the statement, the Phase 1 trial will investigate the safety and efficacy of a product the company calls AGT 103-T, “a genetically modified cell product made from a person’s own cells.” It says the product and treatment should work to remove HIV infected cells from the body and “decrease or eliminate the need for lifelong antiretroviral treatment.”
In an online virtual news conference held on Aug. 12, AGT Chief Executive Officer Jeff Galvin explained that the clinical trial involves a multi-step process of extracting blood from an HIV-positive person whose HIV is fully under control through anti-retroviral medication and immediately subjecting the blood to a process of Leukapheresis, which separates a type of white blood cells known as T-cells.
Galvin said the T-cell samples extracted through that process will be sent to a lab, where they will be genetically altered in a process developed by AGT. He said AGT believes the genetically altered T-cells will make them resistant to HIV infection and enable them to do what HIV has prevented human T-cells from doing during the course of the 40-year plus HIV epidemic – to neutralize the virus and prevent it from harming the human body.
Once the gene altering process is completed and an initial waiting period is used to allow the altered cells to multiply in the lab, the cells will be “reinfused” into the body of the person participating in the trial and from whom the original collection of T-cells was obtained, Galvin said.
AGT has said in earlier statements that individuals participating in the clinical trial will initially continue to take their regularly prescribed anti-retroviral medication while testing of their blood continues to determine whether the newly infused T-cells are killing or neutralizing HIV to a degree that will no longer make the anti-HIV medication necessary.
C. David Pauza, AGT’s chief science officer and the company’s lead researcher in the development of the genetically altered, HIV resistant T-cells, stated at the news conference that under FDA protocol, the process must be shown to be safe and not have significant side effects on the first person to undergo the procedure before the procedure is performed on the second person to participate in the clinical trial.
Pauza said he, Galvin and the AGT team consider the FDA’s approval of the clinical trial an important development brought about by years of research and laboratory testing.
“This is momentous news that we have FDA approval to launch Phase 1 and conduct our first human trials,” he said in a statement. “We are beyond excited to reach this milestone. This brings us closer to our goal of transforming lives with genetic medicines,” he said.
“Based on our successful commercial-scale product manufacturing runs and features of the product observed in our labs, this therapy has a high potential to be effective,” Pauza said.
Galvin told the news conference that the current cost for the complete process of extracting cells from an HIV infected person, genetically altering the cells, and reinfusing the HIV resistant T-cells back into the person’s body is about $200,000. But he said he’s optimistic that the cost of the procedure will go down dramatically as it is used more frequently in coming years. Among other things, he said that the extraction of the T-cells and the genetic alternation process can be done through machines in an automated process that can lower costs.
FDA spokesperson Monique Richards told the Washington Blade the FDA is prohibited by law and regulation from commenting on or acknowledging the existence of an “investigational new drug” application, known as an IND, or whether a clinical trial is taking place.
“The FDA supports the safe clinical development of these products and we are committed to continuing to work collaboratively with industry and the medical and scientific communities to provide the information and guidance needed to help foster the advancement of these promising therapies,” Richards said in an email on Friday.
Dr. Anthony Fauci on Friday said it remains unclear whether people with HIV are more vulnerable to the coronavirus.
“The story is not yet completely out in individuals with HIV,” he said during a panel that took place on the final day of the 2020 International AIDS Conference. “Those with HIV that’s not controlled in the sense of controlled viremia as opposed to those with good control. That knowledge store is still evolving.”
Fauci in his presentation also said there is a “significant issue” in the U.S. “with a disproportionate disparity or serious illness among our minority population” with Black people, Latinos and Native Americans most impacted. Dr. Deborah Birx, the coordinator of the White House’s coronavirus task force, echoed Fauci in her own remarks during the panel.
“This is like HIV and that there are specific vulnerable groups, either by race, ethnicity or their relationship in poverty,” she said.
Both Birx and Fauci said hypertension, diabetes and obesity are among the underlying health issues that make people more vulnerable to coronavirus.
Dr. Sarah Henn, chief medical officer at Whitman-Walker Health in D.C., told the Washington Blade in March that older people with underlying medical conditions and those who have chronic illnesses are most vulnerable to the pandemic. Immigration Equality and other advocacy groups have also said U.S. Immigration and Customs Enforcement detainees with HIV are also at risk.
“When I think of people who are at increased risk or high risk for coronavirus I think of people who are significantly immunosuppressed,” Henn told the Blade. “I think of people who are going through cancer chemotherapy, people who are immunosuppressed with medications with a history of organ transplants, and people with a very low CD4 count and uncontrolled HIV and AIDS.”
Fauci: U.S. in midst of ‘very serious problem’
The International AIDS Conference was to have taken place this week in San Francisco and Oakland, Calif., but it happened virtually because of the coronavirus pandemic.
Johns Hopkins University of Medicine’s Coronavirus Resource Center notes there are more than 3.2 million confirmed coronavirus cases in the U.S. Their statistics also indicate the pandemic has killed 134,729 people in this country.
The New York Times reported there were 68,241 new coronavirus cases reported in the U.S. on Friday.
Birx noted four states — Arizona, California, Florida and Texas — account for 50 percent of new coronavirus cases in the country. She also said positive test rates in Houston and Phoenix are higher than 20 percent.
“In the United States we have increased number of cases over the … particularly past three weeks,” said Birx. “We have not seen this result in increased mortality but that is expected as the disease continues to spread in some of our large metro areas where co-morbidities exist.”
Fauci also said upwards of 45 percent of people with confirmed coronavirus cases are asymptomatic.
“There is transmission by asymptomatic and pre-symptomatic individuals to unaffected individuals, which clearly complicates greatly attempts at contract tracing and isolation,” he said.
The Trump administration’s response to the pandemic has been widely criticized, but Birx stressed the U.S. has “worked hard to expand testing.” Birx also said efforts to combat the virus in this country remain largely focused on the state and local level.
Florida Gov. Ron DeSantis, a Republican who is a close Trump ally, is among the governors who continue to face sharp criticism over their response to the pandemic.
“The United States is a state-by-state, county-by-county and that’s the way we’ve made our response, very much looking at a very granular level and then working with the governors and the mayors to have a very specific and tailored response for each of these areas,” said Birx.
Fauci, like Birx, acknowledged the pandemic is far from under control in the U.S.
“My own country, the United States … is in the middle right now, even as we speak, of a very serious problem,” said Fauci.
If you’re one of the more than 44 million people who have become recently unemployed thanks to the COVID-19 pandemic, you may be worried about what that might mean for your access to health care, HIV care, or PrEP.
“We have seen a lot of people in our PrEP program or who receive our HIV services–in addition to new clients who have recently lost their health insurance–who come in wondering how to afford their medications,” said Reina Hernandez, PrEP benefits and HIV linkage manager.
“Income from unemployment benefits might put you above the Medi-Cal threshold, meaning that you won’t be able to access full-scope Medi-Cal coverage. And then you’re left choosing whether to use your unemployment benefits to buy insurance or on other necessities like food and rent,” they said.
The good news is that there are a variety of free programs that can help people afford HIV and PrEP treatment and care even if they don’t have insurance, said Hernandez. Gilead’s medication assistance program covers PrEP and the HIV medications made by the company. ADAP, California’s AIDS Drug Assistance Program, can help cover medications, out-of-pocket lab and medical visit costs, in addition to insurance premiums. (You can find a full list of PrEP affordability programs at PleasePrEPMe.org.)
It can be difficult to figure out which programs you qualify for, and how to apply and use benefits, which is where benefits navigators can help.
“Call us, email us, leave us a voicemail, or come in to see us in person. We’ll make sure that you get onto some kind of assistance program, regardless of your immigration status,” said Hernandez. “Even if you’re just visiting the U.S. temporarily, or are living here long-term without residency, we can help.”
If you live outside the San Francisco Bay Area, and are interested in seeing a local benefits navigator, contact any local community health centers or AIDS service organizations in your area to find out if that service is offered. You can also use the PleasePrEPMe.org search tool, filtering results by “accepts uninsured.” If you call a PrEP or health care provider, ask if they have benefits managers, case managers, or social workers who can help you find and apply for assistance programs.
“What this epidemic has demonstrated is that we can’t rely on employer-provided health insurance,” said Hernandez. “COVID-19 has shown us the shortcomings of our current systems–health care in addition to financial, political and social. Since employment isn’t guaranteed, health insurance tied to employment just isn’t sustainable. We need to move to systems like single-payer universal health care, where regardless of your employment you have coverage.”
Resources
Please PrEP Me
Find a PrEP provider, chat with a service navigator, and find useful information about how to pay for PrEP. https://www.pleaseprepme.org/
Although AIDS conferences have previously tackled the issue of racial disparities in HIV, conversations often stop with data and urgent calls to reach “key populations” or “those most at risk for HIV,” coded language oftentimes referring to Black, brown, Latinx and Indigenous people of color in the U.S.
Now, conversations about racism and racial justice in the wake of the murders of George Floyd, Breonna Taylor, Tony McDade, and others are permeating the largest international conference on HIV and AIDS–AIDS 2020–held virtually the week of July 6, 2020. Researchers, practitioners, and activists are discussing systemic bias in public health and our medical systems, and are providing ideas on how to incorporate anti-racist frameworks into the HIV response. Here’s some of what’s been shared.
In a presentation titled “Breathing is a human right” (Bridging Session 1), Darius Rucker, from Williams and Associates, shared his experience as a Black queer man living with HIV in order to name the racist policies and procedures that continue to place Black queer people at a disadvantage in HIV care and prevention.
“It took eight months between my [HIV] diagnosis and linkage to medication,” said Rucker. “In April 2011, my diagnosis was given to me. Months later, I was still not on medications, and was sick. December 2011, still no meds, sick, dying, AIDS. I didn’t have a doctor, a case manager, or support. I needed someone to walk with me. What could have been different? Access to equitable healthcare, and better conversations about healthcare. Racism, homophobia, stigma and HIV still continue.”
Wearing a Black Lives Matter shirt, Gregorio Millet, from amfAR, gave a comprehensive overview of some of the nuanced ways that historical legacies, policies, and other societal structures aggravate disparities experienced by Black Americans (Prime Session 1) in HIV and now COVID-19. He pointed to systemic biases which dictate who gets access to new technology, such as COVID-19 testing.
Slide: Gregorio Millet, amfAR
“COVID-19 testing centers are less likely to take place or to be located in African American or Latino communities. And we saw the exact same thing, unfortunately, with HIV, when antiretroviral therapy became available. We saw the disparity in mortality rates actually increased between African Americans and whites during the time when ART became available. And that’s because African Americans had less access to antiretroviral therapy and thus were more likely to die,” said Millet.
Access to pre-exposure prophylaxis (PrEP) is also an issue for many Black Americans.
People in the South, particularly people who are Black, experience the highest rates of HIV infection in the U.S., yet have the lowest rates of pre-exposure prophylaxis (PrEP) uptake, shared Jodie Guest, from Emory University (Oral Abstract Session C08). The “PrEP to need” ratio–the number of PrEP users divided by the number of people diagnosed with HIV–is highest in the West (over 25) and lowest in the South (less than 10), pointing to the stark need for increased PrEP access in the South among people of color. In addition to access issues experienced by people in the South, Guest pointed to startling low rates of PrEP awareness (11% in one study), and concluded by emphasizing that PrEP scale up must be equitable.
In San Francisco, Jonathan Volk shared continuum of care data from the Kaiser Permanente PrEP program, which found that African American clients were less likely to receive a PrEP prescription, less likely to begin PrEP, and more likely to discontinue PrEP (Oral Abstract Session C08).
“Given the pervasive effects of systemic racism and anti-blackness in our country, it is imperative that we implement an anti-racist approach to PrEP,” said Albert Liu, MD, MPH from San Francisco Department of Public Health, in a session about creating “person-centered” PrEP programs and reducing barriers to PrEP access and retention (Bridging Session 06).
Liu explained that, according to Ibram Kendi’s “How to be an Antiracist,” ideas and policies are either racist or anti-racist, and racist policies are the cause of racial inequities. This includes health inequities, such as those in HIV incidence and PrEP uptake, which means it’s critical for providers and those in power to upend and revise existing systems. Pointing to a “PrEP equity index” developed by Myers and colleagues, Liu said that PrEP use must increase by up to 300% in Black men who have sex with men (MSM) and 230% in Latino MSM to achieve equity with white MSM in New York City.”
Slide: Albert Liu, San Francisco Department of Public Health
“It’s critical that we examine all steps of the PrEP continuum to ensure PrEP delivery is anti-racist,” said Liu.
“Your HIV organization or health department probably has a racist history–all of ours do,” said Felipe Flores, from San Francisco AIDS Foundation (Satellite Session On-Demand). “Building bridges with BIPOC [Black, Indigenous, and people of color] organizations, offering resources and services to these community partners, begins to heal some of the failings that we have inherited or created.”
Flores said it is critical to dedicate time, appointments, and resources to communities that “we have collectively failed,” and to be “loud and unrelenting about it.”
“What holidays does your organization get time off for? What events does your outreach team go to? What languages are your materials in? Who is pictured on flyers? Integrate a racial justice framework into everything you do,” said Flores.
Carmarion Anderson, from Human Rights Campaign, shared her perspective as a Black trans woman working in HIV advocacy to drive home the importance of understanding of intersectionality in order to connect with (not “target”) people of color living with or at risk for HIV (Symposium SS21).
“You have to understand what barriers we face. Before you offer me an HIV test, before you offer me a biomedical intervention like PrEP, you have to understand the trauma I have gone through,” she said. “Some of these things [rejection, poverty, depression] influence how we show up as you are trying to aid us and implement the work of your organization.”
As Anderson spoke about advocacy, she gave an important recommendation for organizations who work with Black and trans communities.
“As a Black trans woman, I can speak up for who I am. And if I can speak up for myself, I can also sit at your table of decision. You understand what I’m saying. That means you can employ me, in order to have my voice, my narrative and my community working with you,” she said.
Carmen Logie, from University of Toronto, also used an intersectionality framework to present the experiences of Black, Caribbean, African and Indigenous women living with HIV in Canada (Bridging Session 12). Women of color are overrepresented in the number of HIV infections that happen among women in Canada, said Logie, and oftentimes experience the intersectional stigmas related to race, gender, HIV status and sex work.
“Ths intersecting stigma matters,” said Logie. “Racism, HIV stigma and gender discrimination are associated with ART [antiretroviral therapy] adherence issues, depression, and injection drug use. It shapes mental health. We need intersectional stigma interventions, and we need them now. We need them to be trauma-informed, and have a harm reduction approach.”
Monica McLemore, from University of California, San Francisco, shared her personal experience being born prematurely to a Black mother as she spoke about health inequities faced by Black Americans and the importance of movements like Black Lives Matter to HIV prevention and care (Symposium SS21).
“In New Jersey, where I was born, infant mortality was double the rate for mothers of color compared to white mothers. I am lucky and grateful to be alive.” said McLemore. “Now, we have to deal with two two pandemics at once: the novel coronavirus, and racism. We can do better, and we have to.”
McLemore urged the HIV community to consider, and incorporate, the principles of Black Lives Matter and the movement for Black lives into the HIV response. “If we place our asks in terms of a human rights frame, the health of everyone can, and will, and should improve.”
In a presentation about including community in the plan to end HIV (Symposium SS21), Venton Jones-Hill, from Southern Black Policy Advocacy Network advocated for meaningful participation of Black communities in HIV policy. “We need to strengthen the capacity of Balck communities and leaders in the U.S. South to engage in health policy deliberations to improve policy, programs and research,” said Jones-Hill. “Community has to be in the middle of the conversation.”
“Now, after the death of George Floyd and many others, you see this complete shift in sensibility where a majority of white Americans, Black Americans, Latino Americans, and Asians support the Black Lives Matter movement,” said Millet. “And one of the things that was really one of the happiest things that I see lately was in my own neighborhood, two blocks from where I grew up in Brooklyn, there was a rally for thousands of people in support of trans Black women’s lives–saying their lives mattered as well. We need to make sure that communities are at the center of the response and at the center of providing solutions for some of these health crises.”
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Visit AIDS2020.org for information about the conference. Presentations and materials from the conference will be made available to the general public at the end of July, 2020 through the conference website.
In a recently published report in JAIDS, Willi McFarland, MD, PhD and colleagues describe HIV seroconversion trends among trans women in San Francisco from 2017 – 2019 collected in the TransNational Study. Young trans women (aged 18 – 24) had a significantly higher HIV incidence, as did Latinx trans women and trans women of color.
“Perhaps the most disheartening finding is the elevated HIV incidence among young trans women,” the authors said. “The nearly four-fold higher incidence among transgender youth predicts a continuing high burden of infection for years to come.”
“San Francisco is a small city with a lot of services for trans folks,” said Erin Wilson, DrPh, MPH, who reported some results from the study at IAS 2019. “This substantial transmission continues despite unparalleled access to gender-affirming medical procedures and social services.”
The TransNational Study enrolled a total of 415 HIV-negative trans women, with 377 completing the 18-month study. Over the course of the study, participants received HIV testing, referrals to PrEP, and referrals to HIV care (for those who tested positive during the study). There were eight seroconversions that occurred over the course of the study, for an overall incidence rate of 1.3 per 100 person years (py).
The trans women who seroconverted were significantly more likely to be young, identify as Latinx or a trans woman of color, have a history of incarceration, and be without health insurance.
Young trans women ages 18 – 24 had an HIV incidence rate significantly higher than trans women who were older (3.7 per 100 py versus 1.2 per 100 py). Latinx trans women (2.6 per 100 py) and trans women of color (2.2 per 100 py) had significantly higher incidence rates than white trans women. Trans women who had been incarcerated (2.3 per 100 py) and those without health insurance (5.8 per 100 py) also experienced higher HIV incidence rates.
“Structural factors disproportionately affecting trans women of color are also tied to poor HIV care outcomes and suboptimal access to HIV prevention use,” the authors said. “Such risks are exacerbated in our city, which has wide disparities in wealth, housing and employment opportunities.”
Erin Wilson, DrPH, MPH shares research conducted with trans women in San Francisco, and explains why simply providing accessible gender-affirming services and HIV prevention and care isn’t enough to offset the inequities, discrimination and disadvantages that trans women may experience.
Resources for trans women in San Francisco:
STRIDE: Transgender Hormone Therapy Program at St. James Infirmary
You can access a variety of gender-affirming care options including hormone prescriptions, hormone level checks, and hormone injection assistance, in addition to peer support through our TransLife social support program.
Transgender Clinic of Tom Waddell Health Center
In addition to gender-affirming care, you can access multidisciplinary primary care for all medical issues (not just issues related to gender), and mental health and social services. Call the voicemail line at 415-355-7588 for info about services during COVID-19.
Transgender Health at San Francisco Community Health Center
Access gender-affirming interventions, including hormone therapy, surgery, facial hair removal, interventions for the modification of speech and communication, and behavioral adaptations such as genital tucking or packing, or chest binding. Trans Thrive is currently suspended during COVID-19, but essential health services are being provided essential services to trans and gender non-conforming community members.
