The Biden administration is preparing to scrap a Trump-era rule that allows medical workers to refuse to provide services that conflict with their religious or moral beliefs, three people familiar with the deliberations told POLITICO.
A spokesperson for the Department of Health and Human Services confirmed that the policy change is underway, saying: “HHS has made clear through the unified regulatory agenda that we are in the rulemaking process.”
The move, which HHS could propose as soon as the end of this month, comes as many GOP-led states are moving to limit access to abortions and transgender care, and as progressive advocacy groups are calling on the federal government to do more to protect the rights of patients.
For years, Mandy (not her real name), a trans sex worker, used to commute two hours from Bristol to London just to access non-judgemental sexual healthcare.
“When I went to Bristol’s central clinic for a sexual health check-up, they told me they ‘don’t know how to deal with people like me,’” she tells PinkNews. “I even experienced having a student nurse brought in to look at my post-operative vagina.” This humiliating experience made her determined to find more inclusive services, but doing so was far from easy.
In Mandy’s eyes, “finding clinicians that are able to handle my trans body and my sex work was an uphill struggle”.
“I basically had to travel 100 miles just to get tested in an environment and a situation that didn’t traumatise me,” she says.
At first, she sought out sex worker-friendly clinics, like the Spittal Street Women’s Clinic in Edinburgh. These were a marked improvement, she says, but nothing compared to the care she received at CliniQ, a trans-led sexual health and wellbeing service based in London.
Services like these are still all too rare, but the last few years have seen a tiny handful of other openly trans-inclusive sexual health services crop up across the UK, many of them trans-led.
A handful of these services only have limited hours, but they still represent a vital step forward in the fight for accessible trans sexual healthcare. More importantly, they demonstrate a clear demand for such services.
The Butterfly Clinic first opened its doors back in 2018. After briefly closing throughout the pandemic, the Liverpool-based service is now open every Monday and Tuesday. “We offer a wide range of services,” a representative explains, “including vaccinations for Hepatitis A, B and HPV where appropriate. We can also initiate and manage [HIV prevention medication] PEP and PrEP.”
Clinic lead Hayley cites an appointment with a trans sex worker as a landmark moment in her decision to spearhead the Butterfly Clinic. “The patient was using sex work to fund their transition, and they spoke about the barriers they had faced,” Hayley recalls. “I asked them why they had decided to come for a sexual health screening after so many years of avoiding appointments, to which they replied: “I’ve always looked after myself from a safety and security point of view, but I had neglected my health.”
It was an epiphany of sorts for Hayley, who hadn’t previously recognised the dire need for a trans-specific service.
The Butterfly Clinic is provided by axxess sexual health, who were immediately supportive of the idea. “After being given the go-ahead, I first reached out at Liverpool Pride, which got a great response,” continues Hayley. Since then, she’s worked with local support groups and other trans-led organisations to ensure a gold standard of trans-specific care.
For trans people long accustomed to feeling let down by professionals, the feeling of being treated fairly and taken seriously can be hugely affirming.
The first time 25-year-old Harry went to 56T in London, he found himself amazed that practitioners actually knew how to help him. “My questions were mainly around whether or not the pill (which I thought must have some kind of hormone in it) would interact with my testosterone, what contraceptives would be available to me other than condoms and what would be my risks of HIV exposure as a a gay trans man,” he tells PinkNews.
Previously, Harry had broached some of these concerns with other sexual health clinicians, but he was told he would have to seek out a “specialist” – a gender clinic practitioner in other words.
But of course, gender clinics have endless waiting lists, and their practitioners aren’t specifically trained to answer sexual health questions. As a result, Harry found himself at a loss for answers.
This wasn’t the case at 56T. “I don’t have periods, so the clinic was able to offer me a pregnancy test if I was worried I might be pregnant,” he explains. “They really knew their stuff and made me feel at ease. I was told – through their trans-inclusive practice and approach – that my body wasn’t odd, unusual or strange. For the first time, professionals had answers to my questions. That felt really important.”
Perhaps unsurprisingly, given the context of these backstories, plenty of trans people have long been reluctant to seek care.
According to 2019 research published in the British Medical Journal, “trans people were less likely to have attended a sexual health clinic in the past 12 months compared to cisgender people,” and those who did were “more likely to report experiencing discrimination in a medical setting [than cisgender people]”.
This discrimination often isn’t mild, either. The statistics show that “over four-fifths of trans participants had high or very high levels of psychological distress”.
At trans-led clinics, we’re treated with the care and attention we deserve.
Harry has found himself feeling anxious about the potential quality of care he’ll receive. “I’ve had sexual health professionals say ‘I’ve seen it all, nothing can surprise me, love!’” he says. “In my experience though, that’s not the case.”
In the past, Harry has had multiple clinicians say he’s the first trans person they’ve come into contact with. He recalls: “One time, the sexual health practitioner got confused and said that her manager would have to do the consultation instead.”
Chris Higgins, a fellow clinic lead at The Butterfly Clinic, has heard plenty of these horror stories. “The first we need to address is the high likelihood that the trans patients coming to us have previously had negative experiences. Without giving anecdotes, let’s just say these patients definitely need to have their trust earned.”
Sensitivity is key. “Being able to take a sexual history from a trans patient without them feeling the exercise is voyeuristic is important,” continued Higgins. “We ask questions that are necessary for best care, not out of a sense of personal interest or curiosity.”
Crucially, these environments also don’t treat trans people as “other,” which is rarely the case elsewhere. In fact, when it comes to mainstream healthcare providers helping trans people, it’s often too much about luck. There are online resources like trans subreddits and advocacy groups like Action for Trans Health to point people in the right direction, but largely, access to good trans healthcare relies on word-of-mouth recommendations from other trans people in the know.
Trans-led clinics are looking to remedy these issues. CliniQ in particular is known for taking a holistic approach; although it’s not a gender clinic, practitioners can give advice on hormones, mental illness and point people in the direction of peer mentoring schemes. The website also contains a valuable list of external resources, which feature advice on everything from homelessness to support for LGBT+ survivors of domestic violence.
In these trans-led sexual health clinics, there’s an understanding that trans bodies often work differently to cis bodies. “For us, our genitals are sometimes a source of trauma or difficulty,” continues Mandy, “and our bodies after surgical intervention don’t always operate the same as, or look the same as, their cis counterparts.”
These differences aren’t sensationalised in trans-led clinics, nor do they lead to intrusive, potentially triggering lines of questioning. “In these spaces, you’re able to say, as a man with muscles and a beard, ‘I’ve had some discoloured, unusual discharge from my vagina’ and nobody bats an eyelid,” says Harry. “We’re treated with the care and attention we deserve.”
Funding these services is no easy feat, though. It’s no secret that grassroots organisations have long been forced to plug holes in government provision; as a result, a handful of these clinics can only operate during strict opening hours due to funding restrictions, or they’re partially reliant on donations.
According to Mandy, a potential solution is to acknowledge the overlap between trans and sex worker populations, and to work to more closely integrate their services. “The two communities are intrinsically linked, and our lives often intersect in difficult ways,” she explains. “Sometimes it’s impossible to access a trans-specific clinic in places where there’s a sex worker clinic, and vice versa. Therefore, it’s vital that these services are able to cater to our needs.”
The rise of at-home testing
At-home testing has made a huge difference, too. Last year, a UK study found that HIV testing rates had trebled amongst trans communities due to the increased accessibility of at-home tests. “That doesn’t surprise me in the slightest,” says Harry, who believes “most people – not just trans people, or people who are anxious about their bodies – will find it easier to do tests in the comfort of their own home.”
However, there’s more to good sexual healthcare than just testing –– from PrEP and birth control to informed practitioners able to answer questions about hormones, treatment and much more, there’s still a huge need for more trans-specific clinics.
These healthcare issues are often reduced to hot-button, clickbait “debates” about inclusive language by right-wing commentators, but there are actual lives at stake when it comes to conversations around healthcare access.
At-home testing and trans-led clinics may be plugging vital gaps in UK healthcare, but there’s more funding, more education and more awareness needed to ensure more trans people can access them.
“I definitely welcome at-home testing,” concludes Harry, “but it can’t be treated as a replacement for good care and trans-inclusive training.”
An estimated 58,200 transgender youth and young adults ages 13 and older in the U.S. are at risk of being denied gender-affirming medical care due to proposed and enacted state bans and policies, according to the Williams Institute at UCLA School of Law.
As of March 18, 2022, 15 states have restricted access to gender-affirming care or are currently considering laws that would do so. These bills jeopardize access to care for 54,000 transgender youth ages 13-17—nearly one-third of the estimated 150,000 transgender youth in the U.S. More than 4,000 young adults ages 18 to 20 in Alabama, North Carolina, and Oklahoma would also be at risk of losing access to gender-affirming care under proposed bills that would apply to young people over the age of 18.
The bills carry severe penalties for health care providers, and sometimes families, who provide or seek out gender-affirming care for minors. About half of the bills prohibit insurance companies from offering coverage or restrict the use of state funds for gender-affirming care.
In February 2022, the governor of Texas issued an order restricting access to gender-affirming medical care for transgender youth, classifying it as “child abuse” and directing the state’s Department of Family and Protective Services to investigate any reported instances of health care providers or parents who provide or seek out gender-affirming care for children. The order impacts as many as 13,800 transgender youth in the state.
Gender-affirming medical care includes the use of hormones to delay puberty and to promote physical development that is consistent with a child’s gender identity. It is recommended for transgender youth by the American Academy of Pediatrics and the Endocrine Society.
“A growing body of research shows that gender-affirming care improves mental health and overall well-being of transgender people, including youth,” said lead author Kerith J. Conron, the Blachford-Cooper Distinguished Scholar and Research Director at the Williams Institute. “Efforts that support transgender youth in living according to their gender identity are associated with better mental health.”
Prior research from the Williams Institute found that the risk of past-year suicide attempts was lower among transgender people who wanted and received gender-affirming medical care.
The Bisexual Resource Center (BRC), America’s oldest national bisexual organization, will celebrate the 9th annual Bisexual+ Health Awareness Month (#BiHealthMonth) social media campaign throughout March 2022.
#BiHealthMonth, founded and led annually by the BRC, raises awareness about the bisexual+ (bi, pansexual, fluid, queer, etc.) community’s social, economic and health disparities; advocates for resources; and inspires actions to improve bi+ people’s well-being.
This year’s #BiHealthMonth theme is “Connection.” This theme has been chosen to highlight the importance of connecting bisexual+ people to each other, to supportive communities and to health care resources that are affirming of their identities.
While there are many different ways that bi+ people can connect, the goal of connection is to build safe, inclusive spaces — in-person and online, locally and globally — for bi+ people to share their experiences and create meaningful relationships. When bi+ people are connected, it greatly improves their physical, mental and social health, particularly for bi+ people living in historically oppressed, marginalized or isolated communities.
“This year’s #BiHealthMonth is all about connection,” said Belle Haggett Silverman, president of the Bisexual Resource Center. “How are we connected as people? As communities? As a movement? We know that, while connection comes in many forms, it is always crucial for people to thrive individually and collectively. When we create spaces for bi+ people to come together and support each other, we can build a healthier, happier bi+ community and improve health outcomes for bi+ people worldwide.”
Throughout the month of March, the BRC will partner with a diverse array of leading organizations, including #StillBisexual, AIDS United, Athlete Ally, the Battered Women’s Justice Project, BiArtsFestival, Bisexual Queer Alliance Chicago, Bi Women Boston, Fandom Forward, Fenway Health, Howard Brown Health, Human Rights Campaign, LGBT Center of Wisconsin, Los Angeles Bi Task Force, Magic City Acceptance Center, Mini Productions, Milwaukee LGBT Community Center, NARAL, North Shore Pride, the NYC LGBT Center, PFLAG National, the National LGBTQ Task Force, SAGE, SpeakOUT Boston, Step Up For Mental Health, TAIMI, the Visibility Impact Fund and others to feature engaging and informative content, events, research, resources and actions. The BRC invites individuals, organizations, media outlets, companies and anyone interested to participate all month long by posting online using #BiHealthMonth, hosting local community events, donating to the Bisexual Resource Center and more.
Some #BiHealthMonth highlights this year include a screening of the short film “Treacle,” hosted by April Kelley; panels on bi+ health featuring conversations with BRC board members Gabby Blonder, Andrea Holland, and River McMican; new, original content from bi+ advocates, including Robyn Ochs; and a full calendar of BRC-hosted online events including a Bisexual Social and Support Group (BLiSS) meeting (March 2), a Bi+ Crafternoon (March 6); and an in-person Bi/Pan Guyz+ Social Night (March 23).
The Bisexual Resource Center works to connect the bi+ community and help its members thrive through resources, support, and celebration. Through this work, we envision an empowered, visible and inclusive global community for bi+ people. Visit www.biresource.org for more information.
While the One Male Condom is not markedly different from the hundreds of other condoms on the market, it is the first that will be allowed to use the “safe and effective use” label for reducing sexually transmitted infections during anal sex. It is also approved for use as a contraceptive and as a means to reduce STIs during vaginal intercourse.
“This landmark shift demonstrates that when researchers, advocates, and companies come together, we can create a lasting impact in public health efforts,” Davin Wedel, president and founder of Boston-based Global Protection Corp, maker of the One Male Condom, said in a statement. “There have been over 300 condoms approved for use with vaginal sex data, and never before has a condom been approved based on anal sex data.”
Courtney Lias, director of the FDA’s Office of GastroRenal, ObGyn, General Hospital and Urology Devices, noted that the risk of STI transmission during anal intercourse is “significantly higher” than during vaginal intercourse.
“The FDA’s authorization of a condom that is specifically indicated, evaluated and labeled for anal intercourse may improve the likelihood of condom use during anal intercourse,” Lias said in a statement. “Furthermore, this authorization helps us accomplish our priority to advance health equity through the development of safe and effective products that meet the needs of diverse populations.”
Anal sex poses the highest risk for contracting HIV, with the risk of HIV transmission from receptive anal sex about 18 times higher than receptive vaginal sex. Gay and bisexual men accounted for 69 percent of the 36,801 new HIV/AIDS diagnoses in the U.S. in 2019, according to the Centers for Disease Control and Prevention. Queer men of color were overrepresented within this group, with Black men representing 37 percent, Latino men representing 32 percent and white men representing 25 percent of these new diagnoses, according to the CDC.
One Male Condoms are available in standard, thin and fitted versions, and the fitted version is available in 54 different sizes.
A clinical trial of 252 men who have sex with men and 252 men who have sex with women found the One Male Condom has a failure rate of 0.68 percent for anal sex and 1.89 percent for vaginal sex, according to the FDA, which defined condom failure as condom slippage or breakage.
Dr. Will DeWitt, clinical director of anal health at the Callen-Lorde Community Health Center in New York City, said the newly approved condoms could be a helpful tool for HIV/AIDS prevention.
“The hope would be that people would be more willing to use condoms for anal sex and to have that direct encouragement would increase the rates of people using them,” DeWitt said. “Condoms still remain an important tool for people who don’t want to or can’t use PrEP.”
PrEP, or pre-exposure prophylaxis, is typically taken in the form of a daily pill to prevent HIV/AIDS in people who are not diagnosed with the virus. Last year, the FDA also approved an injectable PrEP shot that can be given every two months.
DeWitt did, however, add that he is worried the One Male Condom name and marketing could alienate those who engage in anal sex but do not identify as male.
“Anal sex really does belong to everyone,” DeWitt said. “Even if it’s the perspective of who has to wear the condom, it’s not just male bodies and male identified folks who need to use it.”
While health experts have long encouraged the use of condoms for STI prevention through anal sex, DeWitt said FDA’s official approval is long overdue.
“Here we are in 2022, and we are only now getting condoms approved for anal sex,” DeWitt said, noting that it’s been more than three decades since the start of the HIV crisis. “It’s a little frustrating that it’s taken this long to have this kind of official endorsement.
A trans teen died by suicide while waiting to access mental health care and a first appointment at a gender identity clinic, with a coroner warning that future deaths are possible unless action is taken.
Daniel France, a 17-year-old teenager from Cambridgeshire, killed himself during the first coronavirus lockdown in April 2020 while taking medication to treat depression.
He was trans, and had been referred to an NHS gender clinic – but, like thousands of others, faced several years of waiting before he would be called for his first appointment.
France, described as “extremely kind” and someone who had “many friends” by a local LGBT+ group, also had a history of suicide attempts, said coroner Philip Barlow.
In a report to “prevent future deaths” following an inquest into France’s suicide, Barlow told local agencies to address the delays in accessing mental health services for young adults, and noted concerns around the waiting times for NHS gender clinics.
“Danny was a vulnerable teenager,” Barlow wrote in his coroners report, adding that two separate safeguarding referrals to Cambridgeshire County Council about France had been “incorrectly” closed.
According to the report, France sought counselling from the NHS’ Improving Access to Psychological Therapies (IAPT) programme, but was deemed too high risk. When he was assessed by Cambridge’s First Response Service, which supports people experiencing a mental health crisis, it was decided he did not ‘require urgent intervention’. He had been referred to adult mental health services, having previously been under a young person’s service, but was still awaiting assessment.
The coroner noted that France “was repeatedly assessed as not meeting the criteria for urgent intervention” and that the “waiting list for psychological therapy was likely to be over a year from point of first presentation”.
The inquest also heard “evidence about the considerable delay in obtaining appointments for the Gender Identity Clinic, and about the shortage of availability for psychological therapies such as CBT”.
Barlow warned: “In my opinion there is a risk that future deaths could occur unless action is taken.”
A copy of Barlow’s coroners report has been sent to NHS England and the secretary of state for health, Sajid Javid “for information purposes only”. The local council and NHS trust have been given 56 days to respond to Barlow’s concerns on mental health care provision
The Kite Trust, a local charity that runs support groups for young LGBT+ people that France attended, warned about the “hostile society” that trans people, and especially young trans people, currently face in the UK.
“What Danny faced, and what trans people of all ages continue to face, is a society that is hostile to our very existence,” said Pip Gardner, chief executive of The Kite Trust, in an emailed statement. “Using the wrong name or pronouns for a trans person, is not just a spelling mistake – it causes emotional harm and breaks down trust.”
They continued: “The responsibility must be on those with statutory duties and in positions to safeguard young people’s welfare, especially crisis services, to take immediate action to ensure that other trans young people like Danny can access the care they are entitled to, without having to endure such harms.”
A study has found that COVID-19 vaccine rates in the United States are higher among gay and lesbian adults than in heterosexual adults.
The Centre for Disease Control and Prevention (CDC) found that lesbians and gay men aged 18 and older reported higher levels of vaccine coverage (85.4 per cent) than their straight counterpoints (76.3 per cent).
It was found that bisexual (76.3 per cent) and transgender adults (75.7 per cent) had similar COVID-19 vaccine rates to heterosexual people.
The study authors explained that the data could help to “increase vaccination coverage”.
The authors said: “Understanding COVID-19 vaccination coverage and confidence among LGBT+ populations, and identifying the conditions under which disparities exist, can help tailor local efforts to increase vaccination coverage.
“Adding sexual orientation and gender identity to national data collection systems would be a major step toward monitoring disparities and developing a better-informed public health strategy to achieve health equity for the LGBT+ population.”
According to CDC researchers, people within the LGBT+ community “have higher prevalences of health conditions associated with severe COVID-19 illness compared with non-LGBT populations”, for example obesity, smoking, and asthma.
A previous study explained: “Because of their sexual orientation, sexual minority persons experience stigmatisation and discrimination that can increase vulnerabilities to illness…
“Persons who are members of both sexual minority and racial/ethnic minority groups might therefore experience a convergence of distinct social, economic, and environmental disadvantages that increase chronic disease disparities and the risk for adverse COVID-19–related outcomes.”
Sia Sehgal, a student at a private international school outside Mumbai, raised 200,000 rupees (£1,933) for the Maharashtra District AIDS Control Society (MDACS) to buy COVID-19 vaccines.
MDACS administered 120 first doses to trans people during a free vaccination drive in July last year.
Varshabhai Dhokalia, a trans woman, told the Hindustan Times after receiving the free vaccine: “We are always being mocked. While I was standing in the queue for the shot, people were staring and laughing at me. Someone even passed a comment that the vaccination was only for males and females.
“This discourages us from going to these centres for vaccination.”
Sehgal raised the money for the 120 first COVID-19 vaccine doses in two weeks, and planned to raise more funds so that the people who had their first vaccine could have their second.
More than 1 in 4 LGBTQ youth have experienced homelessness or housing instability at some point in their lives, a new report from The Trevor Project shows, including nearly half of Native/Indigenous LGBTQ youth and nearly 40 percent of transgender and nonbinary youth.
Thirty-five percent of LGBTQ youth who are homeless and 28 percent who have experienced housing instability also reported a suicide attempt in the last year, compared to 10 percent of LGBTQ youth who are not housing insecure. Homeless LGBTQ youth are also two to four times more likely to report depression, anxiety, self-harm, suicidal thoughts and suicide attempts.
These findings, said Jonah DeChants, one of the authors of the study and a research scientist for The Trevor Project — an LGBTQ youth crisis intervention and suicide prevention organization — “paint a pretty serious picture about the need to provide better mental health services for folks who are experiencing housing instability.”
It came as no surprise to the researchers that LGBTQ youth of color and trans and nonbinary youth are disproportionately affected by homelessness and mental health issues.
“When you start adding homophobia, plus racism or transphobia, plus anti-Indigenous racism,” DeChants said, “then we again start to see that young people who are experiencing multiple forms of marginalization and oppression — those are the folks who tend to be pushed out of housing supports and experiencing homelessness.”
Experts say the pandemic has also exacerbated housing and mental health concerns. Last year more than 80 percent of LGBTQ youth reported that the pandemic has worsened their housing situations, according to The Trevor Project’s 2021 National Survey on LGBTQ Youth Mental Health.
“Nothing repairs the damage that is typically done by being rejected by your family, your community, the culture at large,” Bill Torres, director of drop-in support services at the Ali Forney Center in New York, one of the largest LGBTQ youth homeless shelters in the U.S., said. “In regards to the impact of how Covid is affecting everyone, it just increased those issues tenfold.”
Kate Barnhart, the executive director of New Alternatives, a drop-in crisis center for homeless LGBTQ youth and people living with HIV in New York, said the hopelessness of the pandemic is driving some suicides among clients.
“We’re seeing people who’ve gotten disconnected from their medical and their mental health services,” Barnhart said. “Telehealth is fine if you’re middle class, but if you don’t have a device, or you don’t have Wi-Fi or you’re in an eight-man room at the shelter, and you don’t have the privacy to talk to your psychiatrist … that doesn’t work that well.”
Researchers note that the passage of LGBTQ nondiscrimination protections and LGBTQ competent housing programs can help close the gaps in care.
Elisa Crespo, the executive director of the New Pride Agenda, an LGBTQ advocacy group, advised that increased access to employment and permanent housing can also help LGBTQ young adults who are experiencing homelessness.
“That means putting funding behind the implementation and education process of the policies that may already exist — so that not only young people understand their rights and protections, but housing providers understand as well,” Crespo said.
The UK has seen a sharp rise in an “extremely drug-resistant” strain of the STI shigella among gay and bisexual men, according to a government report.
Although not well-known, a shigella infection, from a bacterium that causes dysentery, can be very serious.
Shigella is transmitted through the accidental ingestion of faecal matter containing the bacteria, such as by licking skin, condoms, toys or fingers that have been contaminated during rimming, fisting, or giving oral sex after anal sex. Even a tiny amount can cause infection.
The infection affects the gut, and can cause severe and long-lasting diarrhoea, stomach cramps and a fever. Because of its symptoms, it is sometimes mistaken for food poisoning.
The symptoms of shigella usually subside within a week, but in some cases hospitalisation is required to administer intravenous antibiotics. Rarely, shigella can spread to the blood and become life-threatening.
On Thursday (27 January), the UK Health Security Agency (UKHSA) reported that cases have been on the rise among gay and bisexual men,
In the last four months, the agency has recorded 47 cases of the STI, while in the 17-month period between April 2020 and August 2021, there were just 16 cases.
The UKHSA said that “recent cases show resistance to antibiotics is increasing”.
Dr Gauri Godbole, a consultant medical microbiologist at UKHSA, said in a statement: “Practising good hygiene after sex is really important to keep you and your partners safe. Avoid oral sex immediately after anal sex, change condoms between anal or oral sex and wash your hands with soap after sexual contact.”
She said it was vital that men who have sex with men speak to a GP or sexual health clinic if they experience symptoms so they can be tested for shigella, which is usually done via a stool sample.
“Men with shigella may have been exposed to other STIs including HIV, so a sexual health screen at a clinic or ordering tests online is recommended,” Godbole continued.
“If you have been diagnosed with shigella, give yourself time to recover. Keep hydrated and get lots of rest.
“Don’t have sex until seven days after your last symptom and avoid spas, swimming, jacuzzis, hot tubs and sharing towels as well as preparing food for other people until a week after symptoms stop.”
Despite requests since the start of the COVID pandemic for the U.S. government to enhance data collection for patients who are LGBTQ, the Centers for Disease Control & Prevention is still falling short on issuing nationwide guidance to states on the issue, a leading expert health on the issue told the Blade.
With a renewed focus on COVID infections reaching new heights just before the start of the holidays amid the emergence of Omicron, the absence of any LGBTQ data collection — now across both the Trump and Biden administrations — remains a sore point for health experts who say that information could be used for public outreach.
Sean Cahill, director of Health Policy Research at the Boston-based Fenway Institute, said Wednesday major federal entities and hospitals have been collecting data on whether patients identify as LGBTQ for years — such as the National Health & Nutrition Examination Survey, which has been collecting sexual orientation data since the 1990s — but the CDC hasn’t duplicated that effort for COVID even though the pandemic has been underway for two years.
“It’s not like this is a new idea,” Cahill said. “But for some reason, the pandemic hit, and all of a sudden, we realize how little systematic data we were collecting in our health system. And it’s a real problem because we’re two years into the pandemic almost, and we still don’t know how it’s affecting this vulnerable population that experiences health disparities in other areas.”
The Blade was among the first outlets to report on the lack of efforts by the states to collect data on whether a COVID patient identifies as LGBTQ, reporting in April 2020 on the absence of data even in places with influential LGBTQ communities. The CDC hasn’t responded to the Blade’s requests for nearly two years on why it doesn’t instruct states to collect this data, nor did it respond this week to a request for comment on this article.
Cahill, who has published articles in the American Journal of Public Health on the importance of LGBTQ data collection and reporting in COVID-19 testing, care, and vaccination — said he’s been making the case to the CDC to issue guidance to states on whether COVID patients identify as LGBTQ since June 2020.
Among those efforts, he said, were to include two comments he delivered to the Biden COVID-19 Health Equity Task Force in spring 2021, a letter a coalition of groups sent to the Association of State & Territorial Health Officers asking for states to collect and report SOGI in COVID in December 2020 as well as letters to HHS leadership and congressional leadership in spring and summer 2020 asking for them to take steps to encourage or require SOGI data collection in COVID.
Asked what CDC officials had to say in response when he brought this issue to their attention, Cahill said, “They listen, but they don’t really tell me anything.”
“We’ve been making that case, and to date, as of December 22, 2021, they have not issued guidance, they have not changed the case report form. I hope that they’re in the process of doing that, and maybe we’ll be pleasantly surprised in January, and they’ll come up with something…I really hope that’s true, but right now they’re not doing anything to promote SOGI data collection and reporting in surveillance data.”
In other issues related to LGBTQ data collection, there has been a history of states resisting federal mandates. The Trump administration, for example, rescinded guidance calling on states to collect information on whether foster youth identified as LGBTQ after complaints from states on the Obama-era process, much to the consternation of LGBTQ advocates who said the data was helpful.
The White House COVID-19 Health Equity Task Force has at least recognized the potential for enhancing LGBTQ data collection efforts. Last month, it published an implementation plan, calling for “an equity-centered approach to data collection, including sufficient funding to collect data for groups that are often left out of data collection (e.g….LGBTQIA+ people).”
The plan also calls for “fund[ing] activities to improve data collection…including tracking COVID-19 related outcomes for people of color and other underserved populations,” and specifically calls for the collection of LGBTQ data.
The importance of collecting LGBTQ data, Cahill said, is based on its potential use in public outreach, including efforts to recognize disparities in health population and to create messaging for outreach, including for populations that may be reluctant to take the vaccine.
“If we see a disparity, we can say: Why is that?” Cahill said. “We could do focus groups of the population — try to understand and then what kind of messages would reassure you and make you feel comfortable getting a vaccine, and we could push those messages out through public education campaigns led by state local health departments led by the federal government.”
The LGBTQ data, Cahill said, could be broken down further to determine if racial and ethnic disparities exist within the LGBTQ population, or whether LGBTQ people are likely to suffer from the disease in certain regions, such as the South.
“We have data showing that lesbian or bisexual women, and transgender people are less likely to be in preventive regular routine care for their health,” Cahill said. “And so if that’s true, there’s a good chance that they’re less likely to know where to get a vaccine, to have a medical professional they trust to talk to about it today.”
Among the leaders who are supportive, Cahill said, is Rachel Levine, assistant secretary for health and the first openly transgender person confirmed by the U.S. Senate for a presidential appointment. Cahill said he raised the issue with her along with other officials at the Department of Health & Human Services three times in the last year.
In her previous role as Pennsylvania secretary of health, Levine led the way and made her state the first in the nation to set up an LGBTQ data collection system for COVID patients.
“So she definitely gets it, and I know she’s supportive of it, but we really need the CDC to act,” Cahill said.