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).
HIV transmission has dropped significantly with lockdown breaking the chain of new cases, a leading sexual health clinic has claimed.
56 Dean Street, a London-based sexual health clinic, is urging people to order free home test kits online in an effort to keep the number of new HIV cases down when the pandemic is over.
The clinic said HIV transmission has “plummeted” during coronavirus lockdown.
“Even COVID clouds have silver linings,” it wrote on its website.
“Fewer hook-ups since lockdown has resulted in a huge reduction of HIV and other STIs. The chain is broken.”
56 Dean Street says an increase in testing could help them ‘beat HIV’.
56 Dean Street said that an increase in testing now could help to “keep transmissions down and beat HIV”.
“We may never get this chance again,” the organisation continued, explaining that the coronavirus pandemic has presented a “once-in-a-generation opportunity in the fight against HIV”.
They said transmission of the virus has “dropped dramatically” in the last few weeks because “there are less people having sex in London”.
“What’s more, when someone first catches the virus, they are super infectious and more likely to pass on HIV than normal,” it continued.
“But because there aren’t many super infectious people around, this has reduced transmission even further.”
Transmission of the virus could remain low after the pandemic if testing is increased.
The clinic says if everyone gets tested during lockdown and knows their status, transmission could be kept at this low rate after the pandemic has come to a close.
Those who test positive during lockdown can start taking medication straight away, which if taken properly would make it impossible for them to pass it on to others through condomless sex.
Matthew, 30, keeps an emergency stockpile of his life-saving HIV medication at his home in Sacramento, California. He started building his stash shortly after he was diagnosed six years ago, on the recommendation of people he met through a forum for those living with HIV. Without his once-a-day pill, his viral load would increase and his general health would decline.
Now, over a month after the World Health Organization declared the coronavirus a global pandemic, Matthew hasn’t broken into his stash. But, like many of the 1.1 million HIV-positive people in the United States, he has questions about how the ongoing crisis could affect his access to medication and his chances of contracting the coronavirus, and whether his chronic immune condition could put him at a higher risk of complications due to COVID-19, the disease caused by coronavirus.
“Being positive, it puts it at the forefront of your mind,” Matthew, who requested that his last name not be used to protect his medical privacy, told NBC News. “You have to be present and aware.”
CDC’s recommendations for HIV and COVID-19
There is currently “no specific information” about the risk of COVID-19 in those living with HIV, according to the Centers for Disease Control and Prevention. However, the CDC noted that HIV-positive people who are not receiving treatment (antiretroviral therapy) or still have a weakened immune system despite treatment are at greater risk of “getting very sick,” should they contract the coronavirus. According to a 2017 CDC report, approximately half of HIV-positive Americans do not have the virus under control and would fall into this higher-risk category.
To prevent sickness, the CDC recommends HIV-positive individuals avoid exposure to the virus by using everyday preventive measureslike social distancing and frequent hand washing; maintain a healthy lifestyle by eating right, getting at least eight hours of sleep and reducing stress; and continue HIV treatment.
In addition to what’s recommended for all Americans amid the coronavirus pandemic, the CDC advises those with HIV to have at least a 30-day supply of HIV medicine and any other supplies needed for managing HIV; make sure vaccinations are up-to-date; establish a remote clinical care plan; and maintain a remote social network to stay mentally healthy.
Impact of age, comorbidities and poverty
Dr. Robbie Goldstein, an infectious disease specialist at Massachusetts General Hospital and director of its Transgender Health Program, said the coronavirus is most likely to affect the HIV-positive population through secondary conditions, such as homelessness, incarceration, old age and underlying health problems.
“What I say to my patients is, if you’re taking your medications and your CD4 count is greater than 200, for right now, we believe that it is not your immune system that is going to increase your risk of acquiring COVID,” Goldstein said. “That said, many of my patients and many patients living with HIV have other issues that they’re facing that put them at really high risk.”
One of those issues, according to Goldstein, is age. The CDC has warned that older adults “seem to be at higher risk for developing more serious complications from coronavirus,” with 8 out of 10 people reported dying from COVID-19 complications in the U.S. being 65 and older.
Individuals living with HIV are disproportionately older than the general U.S. population, according to the CDC: While approximately 35 percent of the U.S. population is over 50, nearly half of HIV-positive people are.
Beyond the physical health risks, older people living with HIV are also more likely to experience negative psychological effects as a result of the pandemic, according to Goldstein, who sees HIV-positive patients at his clinic twice a week.
“These are people who watched as all of their young friends died around them” during the AIDS crisis, he said, “and they are once again watching as young people around this country die.”
“We also have to remember that these folks who are now in their 60s and 70s and in some cases in their 80s … are living a life with very few other people around them,” Goldstein said. “They don’t have the same family structure that many other people in their 70s and 80s have. They don’t have kids and friends and partners and parents who can help support them through this.”
People of any age who have “serious underlying medical conditions might be at higher risk for severe illness from COVID-19,” according to the CDC. In its guidance, the CDC specifically mentions chronic lung disease, asthma, serious heart conditions, diabetes, liver disease and severe obesity, among other conditions.
While HIV-positive people who start their medication soon after contracting the virus have about the same life expectancy as the general U.S. population, people with long-lasting infection are still more likely to experience additional health problems later in life, according to Stephen Helmke, a geriatric cardiology researcher at Columbia University who has been living with HIV for 34 years.
For example, HIV-positive people are at least 1.5 times more at risk for heart disease and stroke than the general population, according to the American Heart Association. Helmke said this is often a result of the chronic inflammation HIV causes, specifically for people who began their treatment with less effective drugs. Additionally, those living with HIV are more likely to suffer from liver damage, often because of their medication, and are more at risk for additional infections, like hepatitis and tuberculosis.
After recovering from a mild case of COVID-19, Helmke, 56, said he now has a deeper awareness of how dangerous the virus can be for those who have serious underlying conditions, including untreated HIV.
“There are deaths that are directly able to be tied to lung function, and then there’s folks whose lungs are still at the level of functionality, but their heart is not able to deal with the loss of optimal oxygenation,” Helmke said.
Dr. Revery Barnes, a physician specializing in HIV for Los Angeles County, said her main focus for her HIV patients, many of whom are homeless or in poverty, has been ensuring they have access to their medication, as well as food and housing.
While HIV drugs have remained in stock in the United States thus far, Barnes said she is navigating other barriers, like the skyrocketingunemployment rate, that might prevent her patients from accessing and taking their medicine.
“Poverty has been a huge pandemic going on for a long time,” Barnes said. “When you actually get down to the barriers to people taking their medications, so much of it has to do with the fact that they’re spending all of their time trying to find money, or trying to find housing.”
HIV also disproportionately affects incarcerated populations, which have infection rates three to five times higher than the general population, according to a 2013 report from the National Minority AIDS Council. According to the report, “as many as half” of all HIV-positive inmates released from correctional facilities each year have no home to return to.
Goldstein, the physician from Massachusetts, added that factors like homelessness and incarceration have an inherent physical risk when it comes to suppressing a contagious disease like COVID-19.
“The thing that is unique about all of those people … is the fact that they live in high density settings,” Goldstein said. “It’s really easy to social distance when you live alone in an apartment in New York City. It’s very hard to social distance when you live in a shelter in Boston.”
Surviving a pandemic
Two federal assistance programs for people living with HIV — the Ryan White HIV/AIDS Program and Housing Opportunities for Persons With AIDS — will see millions in additional funding from the$2 trillion stimulus package that was signed into law on March 27.
Jeremiah Johnson, the HIV project director for Treatment Action Group, an HIV/AIDS advocacy organization, called the funds, which total $155 million, “incredibly welcome,” but he said it is crucial for advocates to keep track of how that money is ultimately used and ensure that it’s enough to help those living with HIV weather this storm.
“I think it’s incumbent on us to really start to sit down and do the math as a community,” he said. “We have a lot of landscaping to do in order to understand if this is even close to what we need to take care of these very vulnerable communities.”
Amid this latest public health crisis, Johnson also stressed the importance of keeping focused on the “ultimate end goal of trying to reign in HIV as an epidemic.”
Echoing the CDC’s guidance, Goldstein said it’s important for those living with HIV to establish a strong virtual support network to combat loneliness as they self-isolate during the mitigation phase of the pandemic. Barnes stressed the importance of keeping up with one’s health status — in terms of HIV and beyond.
“Because you know, somebody who’s diabetic and doesn’t know it is also immune compromised,” Barnes said.
Johnson, a longtime HIV activist who has lived with the virus for over a decade, said he sees a silver lining for people living with HIV and other chronic conditions, who are accustomed to navigating health care obstacles.
“I’m incredibly resilient, and I think that that applies to many people living with HIV,” he said. “We’re actually better prepared than a lot of people to deal with this current reality.”
The study’s authors found that transgender and nonbinary youth often lack access to critical support systems to educate them about safer sex practices. The research team conducted three-day focus groups with 30 young people ages 13 to 24 and found that respondents widely lacked “affirmative and culturally competent” resources to understand their sexual health needs.
These resources ranged from a lack of LGBTQ-inclusive sexual education courses to parents who did not affirm the respondent’s gender identity when discussing topics related to sexual and romantic intimacy.
“Youth really need adults to be there for them, to meet their needs, and to be open and respectful of them,” the lead author, Holly Fontenot, a professor at the Boston College School of Nursing, told NBC News. “If youth had adult caregivers, teachers or health care providers that could provide that affirmation, they feel supported and then they might have better overall health outcomes.”
Written by researchers from the Fenway Institute, the University of Chicago, the Centers for Disease Control and Prevention and Boston College, the study notes that trans and nonbinary youth are less likely than their peers to engage in safe sex practices. According to researchers, this group is more “likely than cisgender youth to report first sexual intercourse before age 13 years, intercourse with four or more partners, drinking alcohol or using drugs before intercourse, and not using a condom at last intercourse.”
Fontenot said the research found that one of the roots of these disparities is a widespread feeling among trans and nonbinary youth that they are “isolated and left out of the conversation” about sexual health in classrooms and at home. One participant in the study admitted that they “really don’t know what counts as sex,” because the definition they had been given from parents and educators “is very heteronormative” and “doesn’t apply to LGBT people.”
“When they do ask for help, youth might feel stigmatized, diminished or have negative experiences with the adults in their lives instead of ones that affirm who they are and tell them that they’re loved and supported,” Fontenot said.
Others said they had no one to turn to — even in their own peer group — for advice that’s inclusive of their gender identities. “I don’t really get any support, but I would like support in knowing that it’s OK to question who you want to have sex with, and it’s OK to explore your body,” one member of the focus group is quoted as saying.
The lack of a support network left many of the trans and nonbinary young people surveyed without the basic skills to discuss intimacy and consent with their sexual and romantic partners. The majority of respondents described open communication with potential partners as “challenging,” and many said they struggled “with self-advocacy, particularly when negotiating sexual preferences with cisgender partners.”
“Participants noted that sex requires more communication when experiencing gender dysphoria, and inability to negotiate safe behaviors might lead to feeling ‘abused or taken advantage of,’” the study noted.
Fontenot said these responses show that it’s “really important” for adults to model healthy relationships for trans and nonbinary youth.
“If you’re already feeling different and afraid, then you’re really not going be able to advocate for yourself in terms of safer sex behaviors,” she said. “It goes to that affirmation and support for youth. If they feel they have inherent self-worth and that they’re a member of society that’s loved and respected just like any other person, then they’ll carry that into whatever romantic relationship they may form in the future.”
Sean Cahill, a co-author of the study and the director of health policy research at the Fenway Institute, an LGBTQ-focused research center, said these lessons apply not only to parents and teachers but also health care providers who work with trans and nonbinary young people.
“For example, school nurses can support youth in school but also work with community partners to develop educational resource lists for youth and their parents and guardians,” he said in a statement.
Fontenot said the study suggests several ways in which all adults can be better advocates for trans and nonbinary youth, whether in a professional or personal capacity. For instance, young people who participated in the focus groups expressed a desire for more “coaching and guidance around healthy communication,” and Fontenot encouraged parents to turn to LGBTQ advocacy organizations or resources geared toward LGBTQ youth if they aren’t sure how to have those conversations.
However, Fontenot acknowledged that the availability of “competent sexual health resources that are really medically informed and accurate” remains scarce online, which can be a major barrier to access in rural areas. Only 27 states and Washington, D.C., mandate both sex education and HIV education, according to the Guttmacher Institute, a sexual health research and policy nonprofit.
Five states — Texas, Oklahoma, Mississippi, Louisiana and Alabama — still have “no promo homo” laws on the books, which prohibit sex education and health teachers from discussing LGBTQ people in a positive light, if at all. (South Carolina, Arizona and Utah only recently had such laws repealed or struck down.)
“That’s an area that needs great improvement because I don’t think our country’s in a place where schools across the nation are going to be delivering inclusive sex education,” Fontenot said of LGBTQ-inclusive online sex ed resources. “We have to think about alternative venues to deliver comprehensive sex education that’s inclusive of multiple identities.”
