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.
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/
PrEP, PEP & HIV services at San Francisco AIDS Foundation
Schedule appointments to meet with a health care provider and benefits navigator. Visit https://www.sfaf.org/services/prep-pep/, call the clinic at 415-581-1600, or email prep@sfaf.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.
The New York Times made an impact with a front page dominated by the “incalculable loss” of 100,000 people who have tragically died of coronavirus in the US.
The grim milestone puts the US far behind every other country in the world in dealing with the pandemic, and the death toll continues to rise day by day.
“They were not simply names on a list. They were us,” the paper read on Monday (May 25). “Numbers alone cannot possibly measure the impact of the coronavirus on America.”
So instead, the entire page was filled top to bottom with death notices of victims from across the country. Names, ages, hobbies, professions, personalities and favourite sports teams were among the personal details included to convey the sheer size of the tragedy.
It was a far cry from how the same paper reported the same number of deaths 29 years ago — the only difference being that this epidemic was HIV, not coronavirus.
The New York Times did not devote a front page to the first 100,000 people who died of AIDS.
On January 25, 1991, the death toll for AIDS in the US reached the same staggering number of 100,000. But because the bulk of those deaths were gay men, their plight didn’t warrant a front page headline.
Nor was it found on the second page, or the the third. The story was shunted back to page 18, hidden below the halfway fold of the paper. No pictures, and no names.
It apparently deserved less prominence than an article about the US Postal Service’s newest stamp.
“US reports AIDS deaths now exceeds 100,000,” the tiny headline read. Below it was a story written by the Associated Press — the New York Times hadn’t bothered to write their own — its cold language characteristic of the way “the gay plague” was viewed at the time.
“The death toll from AIDS in the United States has climbed to more than 100,000, with nearly a third of the deaths occurring last year, federal health officials said today,” the article began.
“The [Federal Centre for Disease Control] said the death toll is climbing and its researchers projected that in the next three years up to 215,000 more Americans will die of AIDS.”
The number of AIDS deaths in the US would eventually exceed 700,000, each one just as much as tragedy as those lost to coronavirus, even if the world refused to acknowledge the scale of the tragedy at the time.
As the New York Times says of the coronavirus victims, “none of them were numbers”. They were friends, lovers, children, siblings, parents, every bit as human as the COVID-19 dead. And they deserved just as much respect.
GlaxoSmithKline said an injection every other month of its cabotegravir drug was shown to avert an HIV infection more effectively than Gilead’s daily Truvada pill, potentially giving its ViiV unit a foothold in HIV prevention.
The drug trial involving men who have sex with men was stopped early by an independent monitoring board after cabotegravir was found to be 69 percent more effective than the current standard of care, Truvada, the British drugmaker said on Monday.
But the market segment GSK is eyeing is about to become more competitive as cheaper generic versions of Truvada are expected to be launched in the United States in September, as the patent expires.
Gilead, for its part, hopes that Truvada users will opt against the cheaper copies and switch to its new daily pill Descovy, approved in October 2019 after it was shown to be less toxic to the kidneys and bones.
Truvada generated $2.8 billion in sales last year, both from treatment and preventing an HIV infection.
Kimberly Smith, ViiV’s head of research, said a long-acting injection was a better route of administer because users have shown to struggle with a strict routine of daily pills, heightening the infection risk.
“Individuals have to show up every eight weeks in the clinic for the injection but in-between there is not a need to take a pill daily, so you really change the equation for adherence with a long acting (drug),” Smith said.
GSK, which is trailing Gilead in the HIV treatment market, will speak to drug regulators about a possible approval of cabotegravir based on the prevention trial, a spokesman said.
Prevention “has turned into a multi-billion opportunity for Gilead but we think consensus estimates include little or nothing for GSK in this market,” UBS analysts said in a research note.
GSK has won approval in Canada for cabotegravir as one of two key ingredients in long-acting HIV treatment combination Cabenuva, whereas in the United States, the company has run into delays seeking the go-ahead for Cabenuva.
An initial readout from the trial, which started in late 2016, was previously not expected before next year.
A similar trial to test the cabotegravir injection to prevent HIV in women, is still ongoing.
Pfizer and Shionogi & Co Ltd hold small stakes in GSK’s HIV-focused ViiV Healthcare division.
GlaxoSmithKline said an injection every other month of its cabotegravir drug was shown to avert an HIV infection more effectively than Gilead’s daily Truvada pill, potentially giving its ViiV unit a foothold in HIV prevention.
The drug trial involving men who have sex with men was stopped early by an independent monitoring board after cabotegravir was found to be 69 percent more effective than the current standard of care, Truvada, the British drugmaker said on Monday.
But the market segment GSK is eyeing is about to become more competitive as cheaper generic versions of Truvada are expected to be launched in the United States in September, as the patent expires.
Gilead, for its part, hopes that Truvada users will opt against the cheaper copies and switch to its new daily pill Descovy, approved in October 2019 after it was shown to be less toxic to the kidneys and bones.
Truvada generated $2.8 billion in sales last year, both from treatment and preventing an HIV infection.
Kimberly Smith, ViiV’s head of research, said a long-acting injection was a better route of administer because users have shown to struggle with a strict routine of daily pills, heightening the infection risk.
“Individuals have to show up every eight weeks in the clinic for the injection but in-between there is not a need to take a pill daily, so you really change the equation for adherence with a long acting (drug),” Smith said.
GSK, which is trailing Gilead in the HIV treatment market, will speak to drug regulators about a possible approval of cabotegravir based on the prevention trial, a spokesman said.
Prevention “has turned into a multi-billion opportunity for Gilead but we think consensus estimates include little or nothing for GSK in this market,” UBS analysts said in a research note.
GSK has won approval in Canada for cabotegravir as one of two key ingredients in long-acting HIV treatment combination Cabenuva, whereas in the United States, the company has run into delays seeking the go-ahead for Cabenuva.
An initial readout from the trial, which started in late 2016, was previously not expected before next year.
A similar trial to test the cabotegravir injection to prevent HIV in women, is still ongoing.
Pfizer and Shionogi & Co Ltd hold small stakes in GSK’s HIV-focused ViiV Healthcare division.
A World Health Organization (WHO) official said society has “come to terms” with HIV, but he missed a glaringly obvious point.
Mike Ryan, executive director of the WHO health emergencies programme, said at a conference Wednesday (May 13) that COVID-19 may “never go away” and referred to the HIV epidemic, which took hold in the 1980s.
“[COVID 19] may become just another endemic virus in our communities and this virus may never go away,” Ryan said.
“HIV has not gone away but we’ve come to terms with the virus and we have found the therapies and we have found the prevention methods, and people don’t feel as scared as they did before, and we’re offering life to people with HIV — long, healthy lives to people with HIV.”
Ryan said he was “not comparing the two diseases” but argued that the trajectory of HIV shows that nobody can predict when the coronavirus will disappear.
While Ryan’s point is important — that a vaccine to the coronavirus may never be found — suggesting that society has “come to terms” with the virus ignores a simple fact.
Not everyone has come to terms with the virus.
The queer community still lives with the scars of the AIDS crisis which took the lives of many, and contributed to rampant homophobia and transphobia in society.
Decades after the AIDS crisis began, there is still a stigma around HIV which means that people living with the virus are subjected to stereotyping, moral judgements, social isolation and healthcare discrimination. There is also the continued misconception that it is an LGBT+ person’s virus, when in fact, anybody can acquire HIV (thought it should be noted that in America, there is a worryingly high rate of new transmissions among queer Black men).
