A gay substitute teacher was wrongfully fired by a Roman Catholic school in North Carolina after he announced in 2014 on social media that he was going to marry his longtime partner, a federal judge has ruled.
U.S. District Judge Max Cogburn ruled Friday that Charlotte Catholic High School and the Roman Catholic Archdiocese of Charlotte violated Lonnie Billard’s federal protections against against sex discrimination under Title VII of the Civil Rights Act. Cogburn granted summary judgment to Billard and said a trial must still be held to determine appropriate relief for him.
“After all this time, I have a sense of relief and a sense of vindication. I wish I could have remained teaching all this time,” Billard said in a statement released Friday by the ACLU, which represented him in court. “Today’s decision validates that I did nothing wrong by being a gay man.”
Billard taught English and drama full time at the school for more than a decade, earning its Teacher of the Year award in 2012. He then transitioned to a role as a regular substitute teacher, typically working more than a dozen weeks per year, according to his 2017 lawsuit.
He posted about his upcoming wedding in October 2014 and was informed by an assistant principal several weeks later that he no longer had a job with the school, according to the ruling.
The defendants said that they fired Billard not because he was gay, but rather because “he engaged in ‘advocacy’ that went against the Catholic Church’s beliefs” when he publicly announced he was marrying another man, the ruling said.
But Cogburn ruled that the school’s action didn’t fit into exemptions to labor law that give religious institutions leeway to require certain employees to adhere to religious teachings, nor was the school’s action protected by constitutional rights to religious freedom.
GLAAD has launched a social media safety program with tech and media expert Jenni Olson as Program Director.
GLAAD, the world’s largest lesbian, gay, bisexual, transgender, and queer (LGBTQ) media advocacy organization, has announced Jenni Olson as the organization’s new Social Media Safety Program Director.
Olson will build and staff GLAAD’s work to grow safer spaces for LGBTQ people on social media platforms and apps as well as develop GLAAD’s public education and watchdog work to hold social media companies accountable to the LGBTQ community.
A leading voice in social media platform accountability, Olson spearheaded the organization’s recently launched inaugural Social Media Safety Index (SMSI) report. Based on feedback from an advisory council of tech leaders, real-time testing of content policies, and an expansive literature review, the 50-page evaluation puts forth the first-ever baseline of LGBTQ user safety in tech and a roadmap of recommendations for Facebook, Instagram, TikTok, Twitter, and YouTube, as well as the tech industry at large. The Social Media Safety Index was created with support from the Gill Foundation and Craig Newmark Philanthropies.
Key findings from the GLAAD Social Media Safety Index include:
-Surveying the current landscape of leading social media platforms, the entire sector is effectively unsafe for LGBTQ users.
-Of special concern is the prevalence and intensity of hate speech and harassment, which stands out as the most significant problem in urgent need of improvement.
-The problem of anti-LGBTQ hate speech and misinformation is a public health and safety issue.
Olson has worked in LGBTQ media and tech for decades and is best known as a co-founder of PlanetOut.com, the first major LGBTQ community website, created by a small team of tech pioneers in 1995. She is also an acclaimed filmmaker, LGBTQ film historian, and archivist. Amongst her many honors and achievements, she was named in 2020 to the Out Magazine Out 100 list for her contributions to LGBTQ culture and community, and in 2021 was awarded the prestigious Teddy Award by the Berlin Film Festival.
“The current unregulated, unsafe landscape of social media presents real harms to LGBTQ people,” said Olson. “GLAAD is advocating for solutions in numerous realms: online hate and harassment, AI bias, polarizing algorithms, data privacy. We’re working every day to hold platforms accountable and to secure safe online spaces for LGBTQ people.”
The SMSI and Social Media Safety Program are the latest additions to the GLAAD Media Institute. The Institute is home to GLAAD’s research and reports, including the organization’s pioneering reports on LGBTQ inclusion in television and film, as well as GLAAD’s consulting work with Hollywood, the video game industry, publishing, journalism, and global brands to ensure fair, accurate, and culture-changing LGBTQ representation.
Under Olson’s leadership, the Social Media Safety program is spotlighting new and existing safety issues facing LGBTQ users in real-time both directly to the platforms and to the press and public. Next year’s SMSI will issue grades to demonstrate which companies prioritize LGBTQ safety.
“The tech industry must realize its obligation to protect its LGBTQ users,” said GLAAD CEO & President Sarah Kate Ellis. “We know these companies can make their products safer. With Jenni’s leadership and the power of so many top figures at the intersection of tech and LGBTQ advocacy on our advisory committee, GLAAD will continue to tirelessly advocate for these solutions.”
The report, “The State of HIV Stigma 2021,” found that less than half (48 percent) of American adults say they feel knowledgeable about HIV, down from 51 percent last year.
According to the study, which was published by the LGBTQ advocacy group GLAAD and the Southern AIDS Coalition, 64 percent of adults said they’re aware that there are medications that protect against HIV, but only 42 percent knew that someone properly following an antiretroviral drug regimen can’t transmit the virus.
“Fear comes from a lack of knowing. A lack of information drives the stigma, which feeds the feeling you have to hide. It’s a vicious cycle.”
DAFINA WARD, SOUTHERN AIDS COALITION
Gilead Sciences, which funded the study, makes HIV medications like Biktarvy and Atripla and the HIV prevention pills Truvada and Descovy.
Half of respondents (50 percent) said they’d feel uncomfortable with a HIV-positive medical professional, 42 percent were uncomfortable with a hair stylist or a barber living with the virus, and a third (34 percent) said they were uncomfortable with an HIV-positive teacher.
There were some notable differences between LGBTQ and non-LGBTQ respondents: Fifty percent of straight, cisgender respondents said they wouldn’t be comfortable with a partner or spouse with HIV, for example, compared to 38 percent of lesbian, gay, bisexual, transgender and queer respondents.
“There’s a correlation there,” Southern AIDS Coalition Executive Director Dafina Ward said. “Fear comes from a lack of knowing. A lack of information drives the stigma, which feeds the feeling you have to hide. It’s a vicious cycle. People are so afraid of being found out they defer treatment.”
More than 500,000 people live with HIV in the South, according to the coalition, but the region falls behind in quality HIV care and prevention services. Sex education in the South also tends to be abstinence-only, Ward added, “so vital conversations aren’t happening” and students aren’t given comprehensive information about preventing HIV/AIDS.
According to Planned Parenthood, seven Southern states either prohibit sex educators from discussing or answering questions about LGBTQ identities and relationships “or actually require sex educators to frame LGBTQ identities and relationships negatively.” Such laws further stigmatize LGBTQ youths and leave them without the information they need to protect their sexual health, the reproductive health services organization said, putting them at greater risk for sexually transmitted diseases.
Some issues fueling HIV misinformation, like inadequate sex education, have existed since the dawn of the AIDS crisis, Ward said, but new hurdles have emerged in recent years.
“We’ve had so much advancement in treatment and people living longer, healthier lives that we’ve lost the sense of urgency,” she said. “There’s a new generation that’s not hearing about HIV — not in the media, not in schools and not from the government.”
And when they do hear about it, the message is often warped: Hip-hop star DaBaby came under criticism last month for telling fans at the Rolling Loud music festival in Miami to shine their smartphone flashlights if they “didn’t show up today with HIV/AIDS, any of them deadly sexually transmitted diseases that will make you die in two to three weeks,” and made other disparaging remarks about gay men in a viral video.
“Stories and voices of people living with HIV are not prioritized regularly to humanize the epidemic, reduce stigma around it, and illustrate how HIV is preventable.”
SARAH KATE ELLIS, GLAAD
A November 2019 survey from the pharmaceutical company Merck and the Prevention Access Campaign underscored how pervasive stigma and misinformation around HIV are among younger Americans.
More than a quarter (28 percent) of HIV-negative millennials (ages 25 to 36 at the time) said they had avoided hugging, talking to or being friends with someone with the virus, and 30 percent said they’d prefer not to interact socially at all with people with HIV.
Researchers also found that 23 percent of HIV-negative millennials admitted that they were either “not at all” or “only somewhat” informed about the virus. For HIV-negative members of Generation Z (ages 18 to 22), the figure leaped to 41 percent.
Nearly half of all HIV-negative young adults in the 2019 survey believed the virus could be transmitted by someone whose viral load is undetectable, even though the CDC has confirmed that there’s “effectively no risk” of infection if someone’s viral load is undetectable.
“Stories and voices of people living with HIV are not prioritized regularly to humanize the epidemic, reduce stigma around it, and illustrate how HIV is preventable,” GLAAD President Sarah Kate Ellis said in a statement about “The State of HIV Stigma” study. “Their stories must be told to show how people with HIV lead long and healthy lives, and cannot sexually transmit HIV when on proper treatment.”
J. Maurice McCants-Pearsall, director of HIV and health equity at the Human Rights Campaign, an LGBTQ advocacy group, said the report “confirms that HIV stigma permeates throughout our entire society.”
“And as long as HIV is stigmatized, the more it will continue to devastate multiple marginalized communities,” he added.
Last week, the Human Rights Campaign launched the first national in-home HIV testing program, also supported by Gilead Sciences. Partnering with the health equity nonprofit Us Helping Us, the organization has pledged to ship at least 5,000 free at-home HIV testing kits over the next year, focusing on marginalized communities disproportionately affected by the virus, including Black and Latino men who have sex with men, as well as bisexual and transgender women of color.
The kits include an OraQuick oral swab, as well as condoms, lubricants, a card with testing information and a referral to providers of pre-exposure prophylaxis, or PrEP, in their area.
“These in-home self-testing kits empower people to learn their status and take control of their sexual health in the privacy of their own home, helping reduce HIV stigma and fear,” McCants-Pearsall said.
Ending the epidemic
President Joe Biden has made bold promises about fighting HIV/AIDS, starting with a campaign commitment to end the epidemic by 2025, five years earlier than President Donald Trump’s stated goal.
“Updating the nation’s comprehensive HIV/AIDS strategy will aggressively reduce new HIV cases, while increasing access to treatment and eliminating inequitable access to services and supports,” Biden wrote in a 20-page candidate HIV questionnaire submitted by a coalition of AIDS organizations.
The White House requested $670 million from Congress this year to end HIV/AIDs, an increase of more than $267 million from previous budgets. He has also pushed to expand the use of HIV-prevention medication and ensure access to HIV services by minorities.
But ending the stigma surrounding HIV/AIDS will take more than money, said DaShawn Usher, GLAAD’s associate director for communities of color.
“We have to think critically and intentionally about how we truly equip and engage everyday Americans with the facts, resources, and scientific advancements about HIV,” Usher said in a statement. “We must hold the media accountable to the 1.2 million Americans living with HIV who are not seen, represented, or discussed. Their stories matter and are beyond worthy of being told.”
An appellate court deciding Hobby Lobby violated Illinois anti-discrimination law by denying a transgender employee access to the women’s restroom could have nationwide implications, experts say.
Meggan Sommerville, a trans woman who has worked at a Hobby Lobby location in Aurora for more than 20 years, has been denied access to the store’s women’s room since transitioning at work in 2010. As a result, she has had anxiety and recurring nightmares and has been forced to limit her fluid intake, according to filings.
On Friday, the Illinois 2nd District Appellate Court upheld a lower court decision that determined the crafts chain violated the Illinois Human Rights Act both as an employer and as a place of public accommodation.
“Sommerville is female, just like the women who are permitted to use the women’s bathroom,” the three-judge panel said in its decision. “The only reason that Sommerville is barred from using the women’s bathroom is that she is a transgender woman.”
The ruling is one of first impression, meaning it presents a legal issue that has never been decided in the court’s jurisdiction.
“They stuck to the law,” Sommerville, 51, told Forbes. “This is a precedent-setting case in Illinois, because the Human Rights Act has never been tested in this way in Illinois, and actually in the country.”
Jim Bennett, director of the Illinois Department of Human Rights, said the decision underscored that trans people in the state “have strong protection from discrimination.”
“Ms. Sommerville’s experience of discrimination is certainly not unique, as too many of our transgender friends and neighbors continue to face acts of discrimination and hate,” Bennett said in a statement. “With this decision, the IDHR has been given a clear path to enforce the Commission’s orders concerning the rights of trans persons.”
Jacob Meister, who represented Sommerville, went further, telling Bloomberg Law the decision had national implications and will “start the process of courts around the country addressing the issue of bathroom access.”
Camilla Taylor, litigation director for the LGBTQ legal advocacy group Lambda Legal, agrees the ruling could have a broad impact in a variety of areas and jurisdictions.
“I think other states will generally be able cite this ruling, because of how sweeping it is,” Taylor said. “This is not limited to employment. This is the public policy of the state of Illinois. The court went out of its way to knock down every justification for treating trans people differently in public. It made it clear there’s no justification.”
While the Supreme Court’s 2020 decision in Bostock v. Clayton County, Georgia, determined discrimination based on sex includes sexual orientation and gender identity, it didn’t address access to sex-segregated facilities, services or sports teams.
“You can’t argue it’s not sex discrimination to deny someone access to a bathroom or a locker room,” Taylor said.
Not only could the ruling be used by opponents of so-called bathroom bills, she added, it could be relevant to the legal fight against legislation prohibiting transgender girls from playing on female sports teams.
“It will have big ramifications in all kinds of aspects of life — in education, in business, in gyms and sports,” Taylor said. “It’s indicative of applying nondiscrimination principles to sex-segregated areas. It makes clear that gender identity determines sex.”
Hobby Lobby could appeal the ruling to the Illinois Supreme Court and theoretically take it all the way to the U.S. Supreme Court. Attorney Whitman Brisky, who represented the company, did not immediately reply to a request for comment.
The 2021 legislative session has set a record for anti-transgender bills, according the Human Rights Campaign, an LGBTQ advocacy group: Nearly 70 measures were introduced in at least 30 states that would prohibit trans youth from participating in sports consistent with their gender identity, and at least 15 bills were introduced that would bar trans people from accessing the restrooms or locker rooms that align with their gender identity.
The judicial branch, however, has been more supportive: In addition to Bostock, the Supreme Court in June declined to review a 4th U.S. Circuit Court of Appeals decision that ruled transgender student Gavin Grimm had a constitutional right to use the boys’ restroom at his Virginia school.
The lower court ruled that policies barring transgender students from restrooms that match their gender identity violate the equal protection clause of the 14th Amendment and Title IX of the Education Amendments of 1972.
For three years, Jesse Brace avoided getting care for their seizures after they experienced discrimination at an emergency room near their home in Lawrence, Kansas, in 2017.
They said they told the staff that they are transgender and nonbinary, that their name is different from their legal name and that they use gender-neutral pronouns.
“They refused to even so much as acknowledge this information, and not only did they not use [my pronouns], but they also sent me home without treating me for what I went in for,” said Brace, 25.
When they tried to get care elsewhere after that, they said, they had similar experiences, so they avoided care entirely.
Jesse Brace. Courtesy / Jesse Brace
In 2018, they began having seizures every day, so they started living in their car outside the Amazon facility where they were an assistant operations manager, because they couldn’t drive themself to work anymore.
In November 2018, they lost their job. “I lost my car soon after and ended up on the streets in the winter,” they said. “I was having hundreds [of seizures] a day and wasn’t even leaving where I was laying.”
They were homeless, living out of their car or on the streets, for over three years.
Brace’s experience in the ER — and the impact that health care discrimination had on their life — is something many trans people face and fear when they try to get care, according to a report released Wednesday by the Center for American Progress, or CAP, a liberal think tank.
Discrimination, among other factors, prevents trans people from seeking necessary care, which leads to health disparities that can affect many other areas of their lives, the report found.
The authors outline a road map of solutions, including legislative protections for LGBTQ people and better competency training for medical providers.
“The onus should not be on individuals,” said one of the report’s authors, Sharita Gruberg, vice president of the center’s LGBTQ Research and Communications Project. “It really should be on these institutions to do the right thing, and the resources and guidance is out there.”
Forgoing routine care after trauma
CAP’s report found that nearly half of transgender people — and 68 percent of transgender people of color — reported having experienced mistreatment at the hands of a medical provider, including refusal of care and verbal or physical abuse, in the year before the survey, which took place in June 2020.
Discrimination can then prevent people from seeking future care, the survey found: 28 percent of transgender people, including 22 percent of transgender people of color, reported having postponed or not gotten necessary medical care for fear of discrimination.
Brace got another job in May 2019, but they said they weren’t able to get consistent care again until May of this year. They said doctors in the area repeatedly told them that they were unable to take on new patients. It wasn’t until Brace was referred to a doctor who has a transgender child that they were finally able to obtain a primary care physician.
“I get panic attacks just making appointments,” they said. “I have no support whatsoever. Unfortunately, all health care around here is like this. There is no support for trans people, and so most avoid seeking care.”
Dallas Ducar, a psychiatric nurse practitioner, opened Transhealth Northampton, a trans-led organization that provides health care to trans and gender diverse patients in western Massachusetts, in May. Ducar said that as a health care provider and a trans woman, she knows there’s a dearth of affirming care for trans people across the country.
The Transhealth Northampton team. Courtesy / Dallas Ducar
She said many of Transhealth’s patients have gone without medical care for long periods of time. A patient who came in a couple of months ago had abnormal vital signs and had to be quickly taken to an emergency room because they were so sick, she added.
“It’s unfortunately not uncommon to see people who have experienced such high levels of discrimination and then forgo the routine visits, then perhaps even forgo an urgent care visit, which then turns into an emergency care visit,” she said.
The CAP report said harassment and discrimination “contribute to high rates of stress,” and — along with social determinants of health — make trans people “more likely to experience poor health outcomes.”
People will read about health disparities among trans people “and just think of that as something that, horribly, is associated with just like being trans, but actually a lot of these experiences have to do with being trans in a world that is constantly oppressing you and where you’re experiencing discrimination both interpersonally but also institutionally and in these broader systems,” said one of the report’s authors, Caroline Medina, a policy analyst at CAP.
The report cites the 2019 Behavioral Risk Factor Surveillance System data collected by the Centers for Disease Control and Prevention, which found that trans people were more than twice as likely as cisgender adults to be told they had depressive disorders.
Fifty-four percent also reported poor physical health at least one day in the previous month, compared to 36 percent of cisgender respondents, according to the CDC data. Trans people also have an increased likelihood of having asthma and developing cardiovascular disease, according to the CAP report.
The Covid-19 pandemic has also aggravated the health disparities trans people face: 1 in 3 reported having had suicidal thoughts during the pandemic, and 1 in 2 reported that their access to gender-affirming health care was curtailed significantly during the pandemic.
Ducar said barriers to care, particularly gender-affirming care like hormones, is “really, really harmful, and they add to the layers of discrimination that exists within the trans community.”
“On the mental health side, we are seeing folks with really complex issues — tons and tons of trauma — that’s coming to our doorstep,” she said. “We’re just seeing a lot of not only trauma, but complex PTSD specifically. These are people that have just been consistently burdened with the symptoms of PTSD, trauma just recurring. It’s really been terrible.”
A lack of cultural competency
When trans people do try to seek health care, they can face discrimination or outright refusal of care, as CAP found. But even when they don’t experience discrimination, they are likely to see providers who don’t have the cultural competency to provide them with affirming care.
CAP’s survey last year found that 1 in 3 transgender people reported having had to teach their doctors about transgender people to get appropriate care, and 15 percent reported having been asked “invasive or unnecessary questions about being transgender” not related to their reasons for visiting.
The report cited a 2018 brief from the Kaiser Family Foundation that found that more than half of medical school curriculums lack information about unique health issues the LGBTQ community faces and don’t cover treatment beyond HIV prevention and care, “likely contributing to transgender people’s inability to access affirming care,” CAP wrote.
Alex Petrovnia, 24, a writer and scientific researcher living in central Pennsylvania, said that last fall, he had to report a primary care physician after a negative experience.
He was worried about how testosterone would affect a joint problem he was having, and he asked the doctor, who was still a medical resident, whether there was a form of physical therapy to help the problem. After a tense exchange, he said, the doctor told him, “I don’t know anything about this, because I’ve never had a patient like you.”
“I was trying to keep this interaction peaceable, and I replied with: ‘Yeah, I know. It’s really unfortunate that you’re not taught anything about trans people in medical school, and it’s just not a very well-known issue,’” he said. “And she looked me right in the eyes and she said: ‘I don’t think it’s that important. There aren’t many of you.’”
When he left, he tweeted about the visit so other trans people in the area would know not to see that doctor.
The medical practice reached out to him a few days later and asked what it could do better, Petrovnia said. When he returned to see a new, supportive primary care physician, “they told me that they sent the resident back to trans-inclusivity training and that they had instituted that for all of their residents going forward,” he said. “So that was very positive. … Being the squeaky wheel really actually made an impact and actually improved the situation theoretically for others.”
Petrovnia acknowledged that not everyone is able or willing to spark such teachable moments.
Mel Groves, 25, visited a primary care office in Montgomery, Alabama, in January when he had a cough, fever and lower body pains. When he was taken back for a full-body CT scan, he said, he had a decent conversation with the attendant who was pushing his chair. Groves said that when the procedure was over, however, the attendant’s tone changed. The attendant had apparently seen Groves’ chart and made a comment about his genitals, Groves said.
Mel Groves, a farmer from Jackson, Mississippi.Courtesy / Mel Groves
“I was taken aback,” he said. “It was shocking, to say the least.”
Groves said that he wanted to report it but that he was feeling too ill and overwhelmed, as he was working in the area temporarily. “I knew that that’s what I should have done, but at the time, I had a lot of stuff going on,” he said.
The health care system that oversees the primary care office where Groves was treated could not confirm his story, citing patient confidentiality.
‘The role falls on society’
CAP’s report outlines a number of policy recommendations that the authors said would help address health care discrimination against trans people.
One in particular is among the most pressing, the authors said: They recommend that the federal government create a rule to strengthen Section 1557 of the Affordable Care Act, which prohibits discrimination on the basis of sex and has protected trans people from discrimination in federally funded health care facilities.
“The protections in Section 1557 are so critical but are also a floor that we need to firmly establish and strengthen,” said Gruberg of CAP. She said it was great that the Department of Health and Human Services’ Office of Civil Rights had announced that it would enforceSection 1557 to cover sexual orientation and gender identity, “but we’re also very worried about what that looks like, how strong these protections are going to be and the potential for religious exemptions to undermine them.”
U.S. District Judge Reed O’Connor issued a permanent injunction last week against the nondiscrimination protections in the Affordable Care Act, ruling in favor of religious health care providers who said the rules would force them to perform abortions or provide gender-affirming treatment against their religious beliefs. While Gruberg expects the decision to be overturned, she said “that threat is still there.”
The report’s authors also recommended that Congress and state and local governments increase funding for LGBTQ community health centers, which often fill the health care gaps that trans people face.
Groves was connected with an affirming primary care physician through the Knights and Orchids Society, a grassroots organization in Selma, Alabama, led by Black trans people. He drives about 4½ hours from his home in Jackson, Mississippi, to Auburn, Alabama, when he needs care.
Although groups like the Knights and Orchids Society have provided what Groves described as “life-changing” support, he said it’s ultimately up to the medical system and society to address pervasive issues like discrimination.
“We’ve always been here,” he said. “So I think that now the role falls on society and the medical professionals to educate themselves more. If that means more fellowships, more trainings, more professional development … I feel like that is single-handedly the best thing that we can do to foster better health care for trans people, is helping people to understand how to be inclusive, and then going forward from there.”
Some LGBTQ OnlyFans creators say the changes could jeopardize one of their primary sources of income during the Covid-19 pandemic.
Many sex workers, such as Stacey Monroe, 27, have been using OnlyFans to create sexually explicit video content and photos during the pandemic because they can’t see clients in person safely.
Monroe said she left her career in health care to focus on advocating for transgender rights after she faced discrimination from multiple past employers because she’s a trans woman. “However, being an activist is really a volunteer job, so there was no pay,” she said. In 2018, sex work “helped me and my sister get through our housing crisis and so many other things. It became our form of survival.”
Stacey Monroe said OnlyFans’ policy change could jeopardize 40 to 50 percent of her income.Pedro Morales
Sex work has helped them maintain stability without facing employment discrimination. Now, Monroe said, 40 percent to 50 percent of her income comes from OnlyFans subscriptions.
“If I’m not able to see customers in person, then I do have to try to make OnlyFans content and things like that, so now I’m kind of in limbo trying to figure out what am I going to do on October 1 and trying to see if there’s a loophole or anything to work around the policy,” she said.
OnlyFans’ new policy will allow creators to continue to post nude photos as long as they are consistent with the platform’s acceptable use policy, but it will prohibit “the posting of any content containing sexually-explicit conduct,” a spokesperson said in a statement.
“In order to ensure the long-term sustainability of the platform, and to continue to host an inclusive community of creators and fans, we must evolve our content guidelines,” the statement says. “These changes are to comply with the requests of our banking partners and payout providers. We will be sharing more details in the coming days and we will actively support and guide our creators through this change in content guidelines.” https://iframe.nbcnews.com/U5CK7jN?app=1
The spokesperson declined to comment on when a nude photo could be considered sexually explicit or who would screen content and decide whether it violates the policy.
OnlyFans has provided a legal avenue for people to participate in sex work. Subscribers pay monthly or yearly fees in exchange for pornographic content or one-on-one live video chats with creators, among other content.
Transgender people are more likely than the general population to participate in sex work for a variety of reasons. As a result, many LGBTQ sex workers said the community is disproportionately — and negatively — affected by OnlyFans’ policy change.
A form of survival for trans people
In 2018, Monroe and her sister, who is also trans, were facing homelessness.
“We were sleeping in our car. We had contemplated suicide,” she said. “We just really didn’t have any options. We were going to homeless shelters, and they were telling us that we were not allowed there because we were trans and they didn’t know how to accommodate us.”
With support from their community, they were able to get back on their feet, and sex work has since helped them survive, Monroe said.
Monroe’s experiences of job discrimination and homelessness are common among trans people — including trans people who participate in sex work.
A 2015 survey found that 10.8 percent of trans respondents had participated in some form of sex work, with rates the highest among Black trans respondents (39.9 percent) and Hispanic or Latino respondents (33.2 percent). Transfeminine respondents were twice as likely to participate in the sex trade, at 13.1 percent, compared to transmasculine respondents, at 7.1 percent.
The survey found that more than two-thirds (69.3 percent) of trans sex workers reported having experienced adverse job outcomes in the traditional workforce, such as being denied jobs or promotions or being fired because of their gender identity or expression. In addition, those who lost jobs because of anti-trans bias were about 2 ½ times as likely to engage in the sex trade (19.9 percent vs. 7.7 percent of respondents who didn’t lose jobs because of anti-trans bias).
The OnlyFans log in page on a laptop in New York, on June 17, 2021.Gabby Jones / Bloomberg via Getty Images file
Monroe said sex work is a form of survival for many trans people, because it allows them to earn enough money to get safe housing.
OnlyFans has provided a safer — and legal — outlet for people to engage in sex work, especially trans people, who often face violence. At least 34 trans and gender-nonconforming people have been killed this year. Most of them were Black trans women, according to the Human Rights Campaign, and some of them were also sex workers, according to memorial posts and local reports.
Monroe said some trans people use OnlyFans to pay their bills and get health care, such as hormones, during the pandemic. As a result, the policy change could affect trans creators in many ways if it’s their primary form of income.
“A lot of us have found safety in not having to see customers in person, one, because of Covid-19, and two, because of the violence against trans people and how it’s been increasingly just getting worse and worse over the years,” she said. “It’s horrible. So we are going to be facing more safety issues, more issues with housing, medical, trying to just survive in general.”
Jeopardizing stability, safe space
Z, 27, said OnlyFans has provided them with a stable and safe source of income during the pandemic. They asked to go by their initial because they hope to get a job outside sex work in the future.
They are immunocompromised and disabled and were unable to leave their home at all before a Covid-19 vaccine was available.
They began using OnlyFans in November to sell lewd photos. They incorporated their mobility devices into shoots and described themself as openly queer. In their first month using the platform, they said, they doubled their average monthly income and were able to hire a personal care attendant to help them with their physical therapy exercises and daily activities, such as washing their hair and prepping meals.
They said the OnlyFans policy change will affect them because they don’t have an audience for the type of content that OnlyFans now says is within its terms of service, though they noted that they won’t be as affected as other creators who do more video content.
“I think that when you are specifically advertising sex worker services and then those services are no longer what you’re able to provide, nobody’s going to be there for that,” they said. “I don’t foresee getting a lot of income from people who would just want to see pictures of my smiling face every day.”
OnlyFans no longer makes up the bulk of Z’s income, but they said it does provide them with a few hundred dollars a month, which can cover their physical therapy, medication or groceries.
OnlyFans is used primarily by sex workers who sell pornographic content, but creator GothyKitten, 33, who asked to go by their username on the platform, used it to share time-lapse photos of their surgery site after they had gender-affirming surgery. They uploaded a year’s worth of images in late December.
“A couple folks have said that it really helped them with considering surgery, and everyone who asked for it said they couldn’t find any other resources as detailed,” they said. OnlyFans’ new acceptable use policy will ban “any exhibition of the anus or genitals of any person which is extreme or offensive,” and it doesn’t define “extreme” or “offensive,” leaving GothyKitten uncertain whether their content will be removed.
For now, they’ve created an account on AdmireMe.vip, a site that posted a message of support to sex workers after OnlyFans announced its policy change.https://iframe.nbcnews.com/468GgCb?app=1
For some LGBTQ OnlyFans creators, like Jack Mackenroth, 52, the platform’s new policy is disappointing but not necessarily negative. Mackenroth created an OnlyFans account to share gay pornographic content shortly after the site started in 2016.
He said that the site isn’t user friendly and that there are better platforms that were created by sex workers, like JustFor.fans, which also shared a message about OnlyFans’ policy.https://iframe.nbcnews.com/h8cOaI7?app=1
Sex workers made OnlyFans “what they are,” Mackenroth said, and now it won’t fight for the creators who helped build the site. “They seem to be fair-weather friends, and I don’t need those,” he said.
He encouraged OnlyFans creators to move their content to other platforms and diversify their sources of income.
Jack Mackenroth attends “The Imitation Game” NYC premiere on Nov. 17, 2014. Jim Spellman / WireImage – Getty Images file
LaLa Zannell, the Trans Justice Campaign manager at the American Civil Liberties Union, said being able to change platforms is a privilege not all sex workers have.
“A person who is navigating just surviving, navigating transphobia, xenophobia and homelessness doesn’t have time to create a whole new following on a new platform,” she said.
A number of websites that sex workers used, such as Backpage and Tumblr, were also shut down or changed their policies in ways that negatively affected sex workers, she said, in part because of policy changes by financial institutions that process their payments.
OnlyFans and similar sites have also faced pressure from conservative representatives and advocacy groups. Rep. Paul Gosar, R-Ariz., applauded the policy change, calling it “a remedy to child exploitation” in a tweet last week.
Gosar wrote a letter to the attorney general about a week before the site announced its policy change requesting an investigation into OnlyFans “for promoting, and profiting from, online prostitution.” The bipartisan letter was signed by more than 100 other members of Congress.
Gosar wrote on Twitter that the Justice Department had found that minors were getting through OnlyFans’ vetting process, which requires creators to have bank accounts, government IDs and face scans to ensure that their faces match the provided ID.
The Justice Department did not immediately respond to NBC News’ request for comment.https://iframe.nbcnews.com/48BjpYS?app=1
Zannell said banning pornographic content from platforms isn’t a solution, because it will just move to new platforms. But users’ constantly changing platforms isn’t, either, she said. She added that she’d like to have a sit-down with banking institutions, as well as anti-pornography and anti-sex-trafficking groups — which she said are among those pressuring banking institutions to clamp down on sites like OnlyFans — to “actually have a real conversation and carve out a real goal where all parties online can be on neutral ground, because sex work is real work.”
Tony Christon-Walker was determined to set up an HIV prevention clinic in Birmingham, Alabama, that would succeed where others have long struggled to combat the scourge of the virus among his fellow queer Black men.
The director of prevention and community partnerships at the nonprofit AIDS Alabama, he spent much of 2019 hiring a clinic staff composed of people of color. They were trained to provide the kind of affirming care that, he said, “reflects our culture,” and that would encourage local men at risk of HIV to keep coming back.
Even facing the headwinds of the Covid-19 pandemic, the fledgling clinic, which specializes in prescribing the HIV prevention pill known as PrEP, for pre-exposure prophylaxis, made steady progress in realizing his vision.
But now clinics like this that provide vital HIV prevention services to disadvantaged populations are facing a dire — and for some of these nonprofit groups, even existential — financial crisis driven by the vagaries of an arcane federal law governing prescription drug discounts.
These safety net clinics are set to lose well over $100 million in annual HIV prevention funds due in part to a recent decision by the pharmaceutical giant Gilead Sciences to cut off what has become an increasingly valuable revenue stream supporting these organizations in their grassroots efforts to prevent the virus’s spread. The consequences are expected to be most devastating to clinics in the South, due to the region’s disproportionately large uninsured population and the fact that half of HIV transmissions in the United States occur in those states.
The imminent funding loss threatens to substantially compromise an ambitious plan the federal government launched last year to end the nation’s HIV epidemic by 2030. People of color will likely bear the brunt of the impact — at a time when the public health sector is striving to mitigate racial disparities, not see them worsen.
“This will shut us down,” said Christon-Walker, of how Gilead’s policy change will affect AIDS Alabama’s PrEP clinic. Losing the funds, he said, will “destroy our program and totally inhibit our ability to see uninsured clients, which make up the bulk of our business.”
Dependence on a ‘patchwork solution’
The financial morass centers around a 1992 federal drug pricing law called 340B. The law grants clinics that care for a disproportionate number of uninsured and low-income individuals the right to purchase pharmaceuticals at steep discounts through their in-house or contracted pharmacies. Public and private insurers typically reimburse 340B-designated clinics’ pharmacies at a dollar amount close to a prescribed drug’s list price; and in a unique setup that Gilead recently decided to end, citing ballooning costs, the California-based company has long engaged in a similar reimbursement process when providing free antiretrovirals for HIV treatment or prevention to uninsured people. Such transactions yield surplus cash — known as the “340B spread” — that these organizations spend on their services.
For expensive brand-name drugs, the 340B spread can be quite a substantial sum. By contrast, when these clinics prescribe a cheaper generic medication, the difference between the price they pay and the price at which they are reimbursed is often relatively minimal; so the prescription generates little revenue.
The Food and Drug Administration approved Gilead’s antiretroviral Truvada for use as HIV prevention in 2012. David Paul Morris / Bloomberg via Getty Images
Consequently, even as the Biden administration seeks to drive downthe cost of pharmaceuticals, the little-publicized 340B pricing law conversely — and perversely — causes many health care facilities serving low-income individuals to depend on drug prices for all kinds of health conditions remaining high to support their bottom lines.
Tim Horn, director of health care access at the HIV advocacy group NASTAD, said the 340B funding system is a “patchwork solution” to the woeful lack of investment in the nation’s medical and public health safety net, and one that amounts to “a house of cards.”
Because of the high price of antiretrovirals used to treat and prevent HIV, the 340B spread funnels hundreds of millions of dollars annually into HIV-focused safety net clinics that serve the low-income, uninsured and nonwhite populations that are disproportionately impacted by the virus. The additional funds allow these clinics to provide extra services, such as transportation assistance or case management.
In the coming years, high-quality HIV treatment regimens will increasingly go off patent. This is good news for the nation’s overall health care bill, and state Medicaid budgets in particular. But as cheaper generic antiretrovirals enter the market, safety net clinics treating people with HIV will sustain a progressive and potentially devastating loss of their 340B revenue.
Currently, however, the most pressing 340B-related financial concern in the national HIV arena revolves around revenue tied to the historically pricey PrEP.
The Food and Drug Administration approved Gilead’s antiretroviral Truvada for use as HIV prevention in 2012. PrEP’s popularity has soaredin recent years, and the Centers for Disease Control and Prevention recently estimated that about 285,000 people — overwhelmingly white gay and bisexual men — were taking it by 2019. The federal agency credits PrEP with helping drive the modest 8 percent decrease, from 37,800 to 34,800 cases, in estimated annual HIV transmissions in the U.S. between 2015 and 2019.
But PrEP’s use has remained disappointingly limited among Black and Latino men who have sex with men, who comprised a respective 25 percent and 21 percent of the 36,800 new HIV diagnoses in 2019, according to the CDC. These are disparities that 340B clinics have worked hard, and are uniquely positioned, to address.
Daniel O’Day, CEO of Gilead Sciences, testifies during a hearing on why Truvada is so expensive, on May, 16, 2019 in Washington.Bill O’Leary / The Washington Post via Getty Images
In recent years, the activist group PrEP4All has campaigned against Truvada’s high price, which Gilead has raised from $1,160 per month in 2012 to $1,842 today. The activists have claimed that Truvada’s cost has been the predominant factor limiting PrEP access in the nation — a claim echoed by Dr. Rochelle Walensky, now the CDC director, during a May 2019 congressional hearing held over Gilead’s high list price for PrEP.
And yet, PrEP is widely covered by insurance, with federal guidelines requiring that almost all private plans, as well as state Medicaid programs expanded under the Affordable Care Act, cover it with no cost-sharing. Gilead also providesfree PrEP to uninsured people.
Moreover, the high price of Truvada, and now also Descovy — an updated version of Truvada that the FDA approved as the second available form of PrEP in 2019 — has actually been a financial godsend to the 340B clinics that serve the very populations among whom HIV transmission is the highest.
According to Horn, the 340B spread for a single prescription for Truvada or Descovy amounts to about $1,200 to $1,600 monthly, or $14,400 to $19,200 annually. Clinics have been able to use this windfall to subsidize for their uninsured PrEP patients the quarterly clinic visits and laboratory tests that are required to maintain the prescription and that are not covered by Gilead’s patient assistance program.
Such funds have also been channeled into paying 340B clinics’ facility and technology costs and to pay for patient navigators, safe sex counselors, outreach workers, condoms, advertising, patient transportation, sexually transmitted infection screening and treatment, and opioid use disorder treatment. And in some cases, this money covers other medications for uninsured people, including the initial few months of HIV treatment before the federal Ryan White HIV/AIDS Program kicks in and picks up the tab.
Now, much of the 340B spread tied to PrEP is poised to vanish, potentially hobbling the services that help keep the HIV epidemic in check. Many uninsured people are expected to lose access to PrEP because of an inability to pay for their clinic visits and lab tests.
“It’s going to put a lot of our programs in serious harm’s way at best,” Jim Pickett, senior director of prevention advocacy and gay men’s health at AIDS Foundation Chicago said. “Some of them will be decimated and destroyed.”
Laboratory technician Brady Robles draws blood from a patient at the Kind Clinic in Austin, Texas. Kind Clinic
HIV advocates worry that this funding crisis will only exacerbate the racial disparities that have long characterized the nation’s epidemic.
“HIV has a disproportionate impact on Black and brown communities, especially here in Texas. I really fear that we will have more Black and Latinx people acquiring HIV if other funding sources aren’t in place,” Christopher Hamilton, CEO of Texas Health Action, an HIV- and LGBTQ-focused nonprofit health care provider, said as he echoed a concern shared among his colleagues across the country.
A ‘peculiar’ and ‘unsustainable’ system
After Gilead announced in early April that it would change its patient assistance program reimbursement policy starting in October, an outcry followed, prompting the companyto move the cut-off to January 2022.
Also in April, multiple generic versions of Truvada entered the market for the first time. Some have a list price as low as $30 per month, posing a major threat to Gilead’s highly profitable PrEP sales.
This price plunge heralds a second oncoming financial crisis for 340B organizations. Insurers are already starting to push people with PrEP prescriptions off of Descovy or the brand-name Truvada and onto the cheap generic drug. Should this shift persist, 340B revenue tied to insured people receiving PrEP will steadily deplete.
In recent years, the activist group PrEP4All has campaigned against Truvada’s high price, which Gilead has raised from $1,160 per month in 2012 to $1,842 today. BSIP / Universal Images Group via Getty
Determining how much money is at stake with the 340B spread tied to PrEP — even Gilead says it does not know the true sum — largely requires querying each clinic individually. The Health Resources and Services Administration recently ascertained from 195 health centerssplitting a $54 million HIV-prevention grant from the agency that in 2020, these clinics prescribed PrEP to 63,000 people — up from 20,000 the previous year. According to the agency, which had no comment for this article, 96 percent of these centers participate in the 340B program. And while it is unknown what percentage of these PrEP recipients are uninsured, overall about a quarter of HRSA-funded health centers’ patients lack health insurance.
NBC News asked nearly 120 HIV prevention-focused 340B clinics for their PrEP-patient figures. The vast majority were unresponsive or refused to share their data. Many said they were wary of alienating Gilead, given the clinics’ further dependency on charitable grants from the company, which is the dominant manufacturer of HIV-treatment pharmaceuticals.
Nevertheless, NBC News was able to tally that at the very least, some 7,000 uninsured 340B clinic patients nationwide are receiving free PrEP from Gilead’s patient assistance program monthly. This modest figure alone translates to a pending minimum loss in 340B-spread revenue to such clinics of $100 million annually starting in January. Given the low response rate to queries — data on roughly 3,000 of these patients came from publicly available information concerning California, and the remainder came from just 24 clinics elsewhere — and given the implication of the HRSA figures, the true dollar figure is likely considerably higher.
“It is peculiar that all of these organizations have been able to get all this funding for receiving a free drug,” said Carl Schmid, executive director at HIV + Hepatitis Policy Institute in Washington, D.C. “But that’s the system that we have been living with, and people have been counting on that for years.”
During an April 8 call between HIV advocates and Gilead to discuss the impending financial changes, Eric Leue, vice president of prevention services at the HIV-prevention clinic Friends for Life in Memphis, Tennessee, was clearly distraught as he pleaded with company representatives to reconsider their change in policy. Noting that Memphis has one of the nation’s highest HIV diagnosis rates, Leue said, Gilead’s “unconscionable”impending reimbursement cutwill force his clinic to close, and that overall, it “will set this county and our population back by at least another decade.”
Coy Stout, vice president of market access strategy at Gilead, explained in an interview that the company never intended to establish the 340B revenue stream in question. In 2004, eight years before PrEP was even approved, Gilead made a fateful decision regarding the administration of its patient assistance program. Instead of having a single contracted mail-order pharmacy send free antiretrovirals to uninsured people directly, as pharma companies typically do, Gilead decided it would reimburse the nation’s pharmacies for purchasing the company’s HIV antiretrovirals and hepatitis B antivirals. According to Stout, the intention was to make filling prescriptions convenient for uninsured patients.
Gilead did not expect pharmacies to purchase substantial quantities of the company’s antiretrovirals at 340B discount prices, because the Ryan White HIV/AIDS Program covers HIV treatment for the uninsured and underinsured.
But the U.S. government would establish no such safety net program to pay for PrEP.
So particularly in the 13 states that have not expanded Medicaid, which are concentrated in the South, there are now substantial — and ever growing — numbers of uninsured people receiving free PrEP from Gilead’s patient assistance program through 340B clinics.https://iframe.nbcnews.com/V9XOgMB?app=1
As for insured people receiving PrEP at 340B clinics, responses from the 24 clinics pointed to some 2,850 such individuals receiving brand-name Truvada and 5,900 receiving Descovy. These figures, which experts believe represent vast underestimates of actual national totals, translate to at least $125 million in annual 340B revenue that stands to diminish given insurers’ efforts to push patients onto cheap generic versions.
To put the cumulative pending loss of 340B-spread funds into context, the federal government funded the “Ending the HIV Epidemic” plan by increasing the HIV-related budget by $267 million in 2020 and by $405 million in 2021. The Biden administration’s 2022 budget request has sought to raise this additional outlay to $670 million.
HIV policy advocates like Schmid have been pushing Congress, the Health Resources and Services Administration and the CDC for increased funding to address the lost revenue tied to PrEP’s 340B spread. The CDC traditionally forbids clinics from spending agency grant money to pay for the lab tests and clinic visits for uninsured people on PrEP. However, it does allow Ending the HIV Epidemic-related grants to cover such costs.
From Gilead’s perspective, its patient assistance program is well over budget and, according to Stout, is “unsustainable.” He further stressed that the company is not able simply to turn around and donate the lost 340B spread to the impacted clinics. Under federal tax law, charitable contributions on Gilead’s part cannot be directly geared around their own commercial products.
“It makes good business sense for Gilead to change the policy,”NASTAD’s Tim Horn said, “but it’s just very, very unfortunate timing.”
Since 1996, Carl W. Dieffenbach, who holds a Ph.D. in biophysics from John Hopkins University, has served as director of the Division of AIDS at the National Institute of Allergies and Infectious Diseases, which is an arm of the U.S. National Institutes of Health or NIH.
In a June 10 interview with the Washington Blade, Dieffenbach gave an update on the extensive, ongoing research into the development of an HIV/AIDS vaccine that he has helped to coordinate for many years, including current human trials for a prospective AIDS vaccine taking place in the U.S., South America, and Africa.
One thing he feels passionate about is a development not widely reported in the media reports about the successful development of the COVID-19 vaccine. According to Dieffenbach, the extensive research into an AIDS vaccine in recent and past years, while not yet successful in yielding an effective AIDS vaccine, helped lay the groundwork for the rapid development of the different versions of a COVID vaccine.
“Because my division runs the largest clinical trials program in the word, we jumped in with both feet to help with coronavirus disease for both vaccines and drugs and things like that,” he said. “And the platforms that were used – the way they are making the coronavirus vaccines – the RNA vaccines with Moderna – were first piloted by NIH and Moderna to try to make an HIV vaccine,” Dieffenbach says.
“So, in many ways, the work for the past 25 years that we’ve done in HIV vaccines sped the development of coronavirus vaccines,” he told the Blade. “And now it’s time to take what we’ve learned from coronavirus and take it back to HIV and start afresh or continue with what we have and build upon from what we have learned.”
Dieffenbach says one reason the development of a COVID vaccine came about before an AIDS vaccine, despite more than 20 years of AIDS vaccine research, is that the HIV virus is far more complex than the coronavirus, especially its ability to infect and remain embedded in the infected person for life.
“Back in 2007 we had the first hint that an AIDS vaccine might be possible with a study called RV144,” Dieffenbach says. “We spent 10 years trying to replicate that, and we just completed that study – a study called HVTN702. And it showed no efficacy,” he said, meaning it did not work.
“So that was a big disappointment to us,” he says “But in the meantime, we had pushed forward with the J&J [Johnson and Johnson pharmaceutical company] vaccine and are pretty far along. We’ll see what happens. We should know in the next several months whether the N26 version of an AIDS vaccine, and HIV vaccine works or not,” he says. “We’re very close to an answer.”
Washington Blade: Where do things stand in the development of an HIV/AIDS vaccine in light of Dr. Fauci’s statement a few weeks ago that the development of a COVID-19 vaccine could provide a boost to developing an AIDS vaccine?
Carl Dieffenbach: Sure. So, maybe I can start by introducing myself to you as a way of putting this into a context.
So, I’m the director of the Division of AIDS, which is the largest funder of HIV research in the world. And I report directly to Dr. Fauci. So, I’m responsible for all AIDS, all the time. And that is my passion and purpose in life. Part of that is working toward a safe, effective, and durable HIV vaccine, which has been one of the two most challenging questions left in science today. The other is a cure. They are connected in some ways.
So, with that as background, when coronavirus disease came along – because my division runs the largest clinical trials program in the world – we jumped in with both feet to help with coronavirus disease for both vaccines and drugs and things like that. And the platforms that were used – the way they are making the coronavirus vaccines – the RNA vaccines with Moderna were first piloted by NIH and Moderna to try to make an HIV vaccine. So, we’ve being working on that platform with Moderna for several years.
The leadership at Pfizer used to be part of a group at Penn, where we were also working with them. The J&J vaccine – we currently have in two Phase III clinical trials for HIV, one in sub-Saharan Africa, specifically in young women and the other one in the Americas in men who have sex with men and transgender individuals. Both of those Phase IIIs are moving along. The women’s study is fully enrolled. The men’s study was hit hard by COVID, but we worked through and will be fully enrolled by September.
One other vaccine just to talk about is the Oxford vaccine, the AstraZeneca vaccine. That is also using a platform at Oxford University, which has been used for HIV. So, in many ways, the work for the past 25 years that we’ve done in HIV vaccines sped the development of coronavirus vaccines. And now it’s time to take what we’ve learned from coronavirus and take it back to HIV and start afresh or continue with what we have and build upon from where we have learned.
Blade: That’s very interesting. But can we assume, then, from the clinical trials that have taken place for an HIV vaccine that they did not succeed in providing the immunity needed for an effective vaccine?
Dieffenbach: So, that’s exactly the problem we have. Back in 2007 we had the first hint that an AIDS vaccine might be possible with a study called RV144. We spent 10 years trying to replicate that, and we just completed that study – a study called HVTN702. And it showed no efficacy. So, that was a big disappointment to us. But in the meantime, we had pushed forward with the J&J vaccine and are pretty far along. We’ll see what happens. We should know in the next several months whether the N26 version of an AIDS vaccine, and HIV vaccine works or not. We’re very close to an answer.
Blade: So, the human trials are ongoing.
Dieffenbach: Oh, again – the study in young women in sub-Sahara Africa is fully enrolled. The men’s study will be fully enrolled in September. So, we have fought through the coronavirus epidemic to maintain, to nurse these trials along to make sure with the $100 million or so we’ve invested, that we didn’t want them to go down the drain literally because we lost too many people for follow-up. So, this was a herculean effort that has gone on all the time trying to do the vaccine studies for coronavirus disease, which we were also incredibly successful in.
Blade: Can we assume all of the people participating in the studies were HIV negative?
Dieffenbach: Yes, they’re HIV negative. They are people who are at risk. And also, in South America, for example, the major countries we’re in are Peru and Brazil. And they’ve had a strong research culture with us, going back more than a decade. For example, both of those countries played big roles in our studies of pre-exposure prophylaxis. A study called I-PREX that demonstrated that in men who have sex with men that [a PrEP drug] works well to prevent HIV acquisition in seronegative men who have sex with men.
So, we’ve been there. This is a really good setup for the countries, for the citizens that are in those countries that want to avail themselves to the research that has benefited everybody.
Blade: Among those who are participating in these ongoing AIDS vaccine trials, can we assume they cannot be taking the PrEP anti-retroviral drugs that have been shown to be highly effective in preventing HIV infection?
Dieffenbach: So, what we’ve done is we – everything is by conversation. So, when somebody who is interested in the study comes in, we talk to them. What is your chief interest in being in this study? And a lot of people want to be in the study because then they can access PrEP. They want to make it easier to get a hold of pre-exposure prophylaxis. They feel that is the best way that they can protect themselves.
So, in that situation, what we do is we take those people and link them to PrEP services where they can easily get PrEP in their community. So, first it’s taking care of those people. Then there are people who really have no interest in PrEP. And we actually counsel them every time they come in for a study. Are you sure you don’t want to access PrEP? And those are the people we then say, if you’re not interested in PrEP, what do you think about participating in a vaccine trial?
Because they’re the ones who have the most freedom of thought. They don’t have an opinion about the vaccine or about PrEP. So, those are the people we’ve been focusing on and enrolling. So, we’ve been very careful to make sure that if people wanted PrEP they not only have access, but they didn’t feel like somehow having to trade something in order to get it. The freedom to join a study should be a free choice. And it shouldn’t be a coercive thing to get PrEP. So, we just took that off the table and said if you’re truly interested in PrEP we can get you PrEP and make sure that was available.
Blade: So, in that case, if they choose PrEP they would not be in the vaccine trial?
Dieffenbach: You know, it’s interesting that you ask it in that way. Because you have relationships with your community, many of the investigators have reported that people will say, you know I tried PrEP and it wasn’t for me. It made me gaseous. It upset my stomach. I wasn’t myself. I tried it. I couldn’t make it work for me. I want to stop PrEP. Am I still eligible for the [vaccine] study? And the answer is of course. Many people are very happy on PrEP and they come in for visits occasionally and say this is working for me and just have the relationship with the doctors there, so it works. So, again, it’s about maintaining contact with your communities.
Blade: Can you tell a little about what happens next after people become part of an HIV vaccine trial. Do you have to keep in touch with these people, and do they have to get an HIV test periodically?
Dieffenbach: Exactly. So, the vaccine consists of a series of injections. It’s a mixture of vector systems that delivers a series of encoded HIV genes that are specifically designed to induce very broad immunity. There’s a whole computer-based process to design those components of the vaccine to make sure that it has sequence similarities with all the different versions of HIV circulating in the globe. And then at the end there is a protein boost. And we carry this out.
So, about every three to four months people come in. They get a shot. They fill out questionnaires. They give a blood sample. And they’re tested for HIV and are given a boost or a placebo. And they stay in touch with the clinic. They come in and out of the clinic. And the retention is quite high in these situations because people really like having the attention of the clinic available to them. It’s part of the community.
Blade: So, they go to a clinic for all of this?
Dieffenbach: It’s a research clinic. It’s not like a state-run health clinic. It’s a research clinic. Clinic is just a term for where people are seen.
Blade: Are any of these AIDS vaccine trials that are going on taking place in the United States?
Dieffenbach: Yes. So, the study is called Mosaico. And it’s HVTN706. And we have sites throughout the United States as well as South America. But that study is limited to men who have sex with men – the one in the United States.
Blade: Is it broader than just men who have sex with men in other countries?
Dieffenbach: No, so we decided to really focus on specific at-risk populations. So, in the Americas we chose to focus on men who have sex with men and transgender individuals. And sub-Saharan Africa we focused on young women because that is the target of the study population. So, 705 is all women in sub-Saharan Africa. And in the Americas in North and South America it is all men who have sex with men and transgender individuals.
Blade: Can we assume that the researchers that are doing these studies have a sensitivity of LGBTQ people? Is there still an issue where people worry about being outed as being gay or transgender?
Dieffenbach: So, many of the sites that we work with have been part of our system for over 20 years. And so, they are trusted members of the LGBTQ community within their cities and states. And ‘states’ is a literal term where it’s a state in Colombia or Peru or Brazil. And so, it is part of the fabric of the gay community in these places. Just like in San Francisco the San Francisco health clinic and the DCF clinics are part and parcel of everything the community does there.
And so, the lead physician in San Francisco is Susan Buchbinder. She has been a leader in health in this population for over 25 years or actually closer to 30 years at this point. We’re all getting old. Do you know that? So, we have been at this a very long time. And really have tried to build structures that are durable and therefore are reliable to the community. And that’s where we go back to the same groups time after time.
Blade: Have the locations of the vaccine testing sites been released publicly?
Dieffenbach: Yes, all of that is publicly available on clinicaltrials.gov. If you go into clinicaltrials.gov and search HVTN705 or HVTN706 you will get a version of the protocol, all the times it’s been modified, where we are – the protocol. All of that is public knowledge and available to you. HVTN705 is the women’s study. HVTN706 is the men’s study.
Blade: Is there a timeframe for when these latest vaccine studies might be completed?
Dieffenbach: I think within the next several months. We will get an answer out of the women’s study and then the men’s study is probably a year away. We were slowed a little bit because of COVID. We actually had to pause enrollment for several months. But we’re back on track.
Blade: Isn’t there a parallel research effort for an HIV/AIDS cure?
Dieffenbach: Yes, we have a very large program in cure research. It is a lot earlier in the discovery process and so it’s still very ‘researchy.’ And we have a very large program called the Martin Delany Collaboratories for Cure Research. Martin Delany was an activist who really pushed NIH in so many wonderful ways to really take the need for a cure seriously. His argument was a cure is the next logical step after effective anti-retroviral therapy. You cannot stop with one pill once a day. You’ve got to keep going. And he was pretty persistent. And unfortunately, he died several years go and we just thought the best way to honor him, and his memory was to name a program after him.
Like most LGBTQ families, my partner and I didn’t become parents in the most conventional way.
In fact, for most of my life, I never considered having kids! But when my partner and I got a call asking if we’d be willing to take immediate guardianship of our niece and nephew, we agreed to do everything in our power to create a loving home for these two children.
After years of visits from social workers, inquiries from investigators trips to the courthouse, and mountains of paperwork and fees, we had the privilege of becoming a forever family through legal adoption.
If you are considering adoption, here are 7 things you should know from my personal experience:
Adoption is a story of joy…
None of us will ever forget the day that our adoption was finalized. To know that we could truthfully tell these amazing children that we would always–ALWAYS–be their parents. It was a day of pure relief.
But in addition to those big milestones – Adoption Day, kindergarten graduation, first performance as a Russian dancer in The Nutcracker – it’s really the little things that bring the most joy. The simple moments are what get to me the most. When they reach for your hand because they’re scared (and you get to tell them it’s okay to be scared). When they learn a new fact and share it with you (did you know that elephants use mud to cool themselves down). When they ask a hard question that you don’t *totally* know the answer to (how DOES an apple seed know how to grow into a tree?!).
Those opportunities to see your children grow into whole, complete humans with their own thoughts, ideas, and passions. That’s joy.
And finally, one of my absolute favorite things about being a parent is having the opportunity to share LGBTQ culture with them. Helping them build an enduring appreciation of drag. Feeling the freedom of getting to pick your own family, your own community, even your own name. All of the powerful, beautiful parts of our community– we get to pass those on to our children.
…and also one of loss
There is no way to get around the fact that your adopted children get to be in your lives because they do not get to be in the lives of their biological parents. While many adopted children will grow up to have no desire to know their biological parents, some feel a profound sense of loss or abandonment that they could not be raised by their biological parents, no matter how wonderful and caring their adoptive parents are.
It’s vitally important for adoptive parents to accept this pain in their children, to sit with it, to be empathetic, and to not take it as a personal rebuke to your parenting. Make sure that your kids have professional support throughout their childhood, and give lots of opportunities for them to share their feelings with you in a safe way.
Make sure that you have support as well, so you can process through the many feelings you may have– feelings of grief that you aren’t their biological parent or that you couldn’t have biological children. Feelings of anger towards their first family and what harmful experiences your children may have experienced while under their care. Feelings of love toward their first family for allowing you to raise their biological children.
Many complicated swirls of emotion may come up as you go on this journey, and you’ll need a place to put them all.
Parenting is not for the faint of heart
Your kid might not like you. You might not like your kid (all the time). Your kid might have severe emotional trauma. Your kid might do this annoying thing where he lies on the couch for two hours flipping a pillow over his head while the rest of you are doing dishes and vacuuming the floor and cleaning the tub.
When you become a parent, no matter how it happens, you’re not just signing up for the giggles and the tickles and the cooing sighs of a sleeping newborn. You’re also signing up for screaming babies and poopsplosions. And, after that, defiant teenagers who scream “I hate you!” and slam their door so hard the handle breaks and they have a panic attack because they can’t open their door anymore and they feel trapped. You’re signing up for their first heartbreak. For helping them deal with bullies… or BEING the bully. You’re signing up for a world of stupid, unsolicited advice and your own parents saying, “We never did that when you were a kid and you turned out fine!!!”
Despite what Instagram may tell you, parenting is not all fun and games. You’re going to mess up. You’re going to lose your temper. You’re going to yell at the lady in the supermarket who asks, “Are they REAL siblings?”
There are millions of ways to be a perfectly adequate parent. Don’t compare yourself to other parents. Be honest with your kids. Know that it’s hard for *everyone*, even the perfect families on social media.
There is no rush to start your family
When we became parents overnight in our mid-twenties, we had no idea what challenges were ahead of us. We were almost completely unprepared and had to make it all up as we went.
So any time a young LGBTQ person stands up at one of my talks and tells me that I’ve inspired them to start a family, and asks if I have advice for them, I always say the same thing: “WAIT!” Usually, the audience laughs, so I have to tell them that I am not joking.
People will tell you that you’re never really ready for parenthood. And while that’s true, there are times in life when you will be more ready! Parenting is already hard enough. Work to get your systems in place before making the leap: do your best to get your finances in order, make sure your housing is stable, and if you have a partner or partners, make sure they’re the people who truly want by your side for the next 18 years.
And above all, take the time to work on yourself and your own insecurities. If you didn’t have an ideal childhood, seek support and healing to process through it effectively so you don’t end up overcorrecting or taking your hurt out on your children. Whatever you wish your parents had worked on before they had you– you have a chance to work on those things for yourself.
Creativity, flexibility, and humility are essential
When our children first came to live with us, the eldest was nonverbal. There’s a whole section in my book in which I talk about the elaborate method I had to create so I could communicate with him – he wasn’t able to speak or share his opinions using words at all. We all had to be really creative to find solutions for their unique challenges. Many parents, especially adoptive parents, have to do the same. Build parenting solutions that work for the kids you HAVE, not the kids you wish you had.
It really does take a village
From kid supplies to legal help, our community was always there for us in ways we would never have expected. Don’t be afraid to ask for help, to invite people into your lives, to build an extended family around your actual family. Remember that most straight people have biological family around them! Grandparents help with babysitting so they can do date night, aunts and uncles help with school pick-ups so they can work late, and cousins are around for playdates and family dinners. LGBTQ people might not have that built-in support network, so we have to build it for ourselves.
Your “village” can come from outside your community as well. In fact, you can find allies anywhere – bosses may be willing to give you time off for court dates (even if that’s not covered in your PTO plan), lawyers may give you a discount on their legal fees, daycares may cut you some slack on registration costs. People want to help you form your family. Let them.
Also – sometimes you and your partner won’t see eye-to-eye. Joining a Facebook community of other parents raising their partner’s nieces and nephews (yes – there are groups this niche!) helped me keep my sanity while adjusting to the new situation. You can access vital resources and emotional support throughout your adoption journey by finding support groups for trans parents, for LGBTQ parents, for parents raising kids in open adoptions, or for whatever your specific situation is.
Love makes a family
I’ll never forget the day that we brought the kids to court for their official adoption day. Our close friends filled the courtroom and the judge, a bit taken aback by the crowd, asked, “Well who do we have here?” Our daughter Hailey, who was five at the time and didn’t understand court decorum, exclaimed, “It’s our Love Family!”
Even at that early age, she already knew that biology doesn’t dictate familial relationships. She will always be surrounded by a constellation of people who love her, support her, and will go to the ends of the earth to make sure she has what she needs to thrive in this world.
Whether your family is you and your collection of houseplants, or three parents and a gaggle of foster children – what makes a family is love.
Trystan Reese, author of How We Do Family: From Adoption to Trans Pregnancy, What We Learned about Love and LGBTQ Parenthood, launched into the public eye as “the pregnant man” in 2017 when the story of his family’s unique journey gained international media attention. He was invited to give closing performances for The Moth Mainstage in Portland, Albuquerque, and Brooklyn; a video of the Brooklyn event has garnered over 2.5 million views. As interest in his family’s story grew, Trystan partnered with many major media outlets, including CNN, NBC, People, and Buzzfeed.
Trystan is an established thought leader, educator, and speaker, focusing on diversity, equity, and inclusion. He is a professionally trained anti-racism facilitator and has been organizing with the trans community for nearly two decades. The founder of his own consulting firm, Collaborate Consulting, Trystan provides customized training solutions for individuals, organizations, and communities that are interested in social justice. He is married to his partner Biff and they live in Portland, Oregon with their three kids: Lucas, Hailey, and Leo. They are very happy.
Pope Francis invited a group of transpeople to the Vatican to be vaccinated against COVID-19 at Easter, it has been revealed.
The pontiff welcomed 50 people to the Vatican on 3 April to receive their first dose of a COVID-19 vaccine, and they returned later that month to receive their second dose, Cardinal Konrad Krajewski confirmed to theNational Catholic Reporter.
Trans people from a parish in Torvaianica were among those who travelled to the Vatican to receive vaccines after Krajewski reached out to local priest Fr Andrea Conocchia, who has been ministering to the local trans community for some time.
Others who were vaccinated as part of the initiative included volunteers, immigrants, refugees, struggling families and single parents.
Juan Carlos Cruz – a survivor of clerical sex abuse who was recently appointed to the Pontifical Commission for the Protection of Minors – told RNS that Vatican officials called Pope Francis for guidance when two buses from Torvaianica arrived as part of the vaccine initiative.
Absolutely vaccinate them!” Pope Francis said, according to Cruz. He claimed the pope went on to instruct officials to “ask for their names, ask for anything they need, but do not ask them about their sex.”
According to Conocchia, his trans parishioners reacted with “emotion” when they arrived at the Vatican to be vaccinated against COVID-19. Some of them are undocumented, meaning they are not eligible to receive vaccines under Italy’s health service.
Conocchia added: “They were moved to tears and felt remembered, having experienced once again and in a tangible way the closeness and tenderness of the pope’s charity.”
This is not the first time Pope Francis has expressed support for Italy’s trans community. In May 2020, as the world was rocked by the coronavirus pandemic, he donated funds to a group of trans sex workers who were struggling as a result of the pandemic’s economic fallout.
It was reported at the time that up to 20 trans women approached Fr Conocchia for help after their work was eradicated by COVID-19. Conocchia helped as many women as he could, but ultimately was unable to offer assistance to them all.
He subsequently wrote to Pope Francis appealing for help for his parish’s embattled trans community, and the pontiff gave the go-ahead for papal almoner Krajewski to sent money to the trans sex workers.
Catholic teaching remains firmly opposed to LGBT+ acceptance
LGBT+ Catholics will watch Pope Francis’s most recent charitable efforts with interest. The Catholic Church has historically been firmly opposed to any acceptance of queer people’s identities, and it still holds firm on its teaching that homosexuality is intrinsically disordered.
Furthermore, there was dismay among queer Catholics in 2019 when the Vatican issued a document that firmly rejected the existence of trans identities, claiming gender fluidity posed a threat to traditional family structures.
There was some hope that the Catholic Church would change its approach to LGBT+ people after Pope Francis became leader in 2013 – however, the Vatican has instead recommitted to its anti-LGBT+ policies and teachings.
