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HIV patients in the South face uphill battle

Poverty, lack of health care among problems

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AIDS Alabama, Kathie Hiers, gay news, Washington Blade, HIV

AIDS Alabama CEO Kathie Hiers (Washington Blade photo by Michael Key)

BIRMINGHAM, Ala. — AIDS Alabama CEO Kathie Hiers will “never forget” the day in 1985 when she and her partner were at Denny’s in her hometown of Mobile, Ala., when six of her “best gay boyfriends walked in” and said they had all tested positive for HIV.

They had gone to nearby Pensacola, Fla., to get tested because Florida offered anonymous testing, unlike Alabama.

“I was like ‘Oh my God, what is happening,’” Hiers told the Washington Blade during a July 16 interview at her Birmingham office before traveling to the 2014 International AIDS Conference in Australia. “Today one of those six guys is still alive.”

More than three decades after the Centers for Disease Control and Prevention reported the first cases of what became known as AIDS, the epidemic continues to have a disproportionate impact on the South.

The CDC in 2010 noted nearly half of all new HIV infections in the U.S. were in the South, according to a policy report from the Southern AIDS Coalition. Eight of the 10 states with the highest rates of HIV — Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Texas and Tennessee — are in the region.

The CDC notes Florida, Louisiana, Mississippi and South Carolina are among the states with the highest rates of AIDS diagnoses.

Hiers said the statistics are slightly lower in Alabama because her organization has partnered with all of the state’s HIV/AIDS service organizations and works within all of its 67 counties.

“We’ve got a pretty cohesive network,” she said. “It’s very different than the other Southern states where you go to Atlanta and there’s a good bit, but you get outside Atlanta and there’s nothing. The same in Louisiana with New Orleans and so on.”

Hiers further noted the 1917 Clinic where a number of groundbreaking discoveries around HIV/AIDS have taken place is located at the University of Alabama-Birmingham.

“We’re always very connected to clinical trials and so on,” she said. “Those two things have helped Alabama.”

The Duke Center for Health Policy and Inequalities Research in 2011 noted Mississippi had the highest number of deaths from HIV of any state. Alabama, Florida, Georgia, Louisiana, North Carolina, South Carolina and Tennessee were among the top 10.

The U.S. Census also indicates that Mississippi is the poorest state in the country, with 22.3 percent of residents living below the poverty line between 2008-2012. Louisiana and Alabama have the second and fourth highest rates of poverty in the country respectively.

Statistics also indicate that people of color are more likely to live in poverty than whites.

“Part of what happens with people who are poor is they don’t go to the doctor,” Kathryn Garner, executive director of AIDS Service Coalition, an HIV/AIDS service organization in Hattiesburg, Miss., that serves people with the virus who live in 71 of the state’s 82 counties, told the Blade during a recent telephone interview. “If you don’t go to the doctor, you don’t know you’re HIV positive until you go to the doctor when you’re really sick and then you’re AIDS-defined.”

Charlotte “Dot” Norwood, gay news, Washington Blade, HIV

Charlotte “Dot” Norwood (Washington Blade photo by Michael Key)

Charlotte “Dot” Norwood, a prevention counselor at Open Arms Healthcare Center, an HIV/AIDS clinic in Jackson, Miss., that My Brother’s Keeper, an organization based in nearby Ridgeland, Miss., that seeks to reduce health disparities among minority groups, is known affectionately as the “AIDS Lady.”

She told the Blade during a July 11 interview at the clinic that patients with the virus are often unable to get a job.

“[They] go for an interview, don’t get hired and it could be for many reasons,” she said. “Sometimes I think it’s because you know maybe they go in and the person’s first perception… masculine, things like that.”

People with HIV/AIDS fall under the Americans with Disabilities Act. It also bans all public entities and private companies that employ more than 15 people from discriminating against their employees based on their status.

No Southern state bans anti-LGBT employment discrimination. Louisiana, Tennessee and Florida include sexual orientation in their anti-hate crimes statutes, but not gender identity and expression.

HIV, Carl Green, gay news, Washington Blade

Carl Green (Washington Blade photo by Michael Key)

Carl Green, a gay white man who has lived at Belle Reve, a residence in the Fraubourg Marigny neighborhood of New Orleans for people with HIV/AIDS since May, told the Blade during a July 14 interview that he lost his job when he told his then-manager he was living with HIV after several hospitalizations.

Green said he eventually lost his home and lived in his car until a bank repossessed it.

The New Orleans AIDS Task Force, an HIV/AIDS service organization that serves people with the virus in the Crescent City and throughout southeastern Louisiana, referred Green to Belle Reve.

“It was the universe saying you need to go back to square one and get your health together,” said Green.

Vicki Weeks, HIV, gay news, Washington Blade

Belle Reve Executive Director Vicki Weeks (Washington Blade photo by Michael Key)

People with HIV struggle to find housing, food

The Fair Housing Amendments Act of 1988 bans discrimination against people living with HIV/AIDS and other disabilities.

In spite of this federal law, a lack of housing remains an acute problem for low-income people with HIV/AIDS in the South.

Fifteen people currently live in two group homes in Belle Reve — including one called Belle Grace that Executive Director Vicki Weeks joked opened because of the “grace of God.” A third building — Belle Esprit — has four apartments for couples and families that can accommodate between seven to 10 people with children at any given time.

Belle Reve was able to renovate all three of its buildings several years ago after it received $1,189,000 in funds from Housing Opportunities for People with AIDS (HOPWA) from the New Orleans Office of Community Development, $300,000 from the U.S. Department of Housing and Urban Development, grants from the National AIDS Fund and other groups and money from the Qatari government.

“I’m happy until I can get on my own and start over again,” a Belle Reve resident of color who describes himself as “very-much gay,” but asked to remain anonymous told the Blade. He worked at Tulane Hospital in New Orleans for four years before he tested positive in May 2013. “I’m looking for another job, but I’ve been having a little problem with that because I guess I’m gay. They look at you and they judge you.”

Miss Eddie, a 58-year-old transgender woman who has lived with HIV since the 1980s, moved from the New Orleans suburb of Kenner to Belle Reve in late May after her former lover died.

“It’s a great blessing being here,” she told the Blade.

Thirty-two people with HIV/AIDS currently live at Grace House, a residence in Jackson, Miss.

AIDS Services Coalition runs two residences in Hattiesburg for people living with the virus.

Eight men live in 121 Haven House, a Victorian home built in the 1880s that serves as a transitional shelter. More than a dozen women with HIV and a family live in a second facility — 227 Place — with nine two-bedroom apartments.

AIDS Service Coalition last month bought a 16-unit apartment complex with four fourplexes.

Garner said they should be renovated by the end of the year.

“Our goal of course if someone’s able to work or able to function out in the world,” she told the Blade. “We do everything we can to get them away so they can be out in the world and do the things everything they want to do.”

The South Mississippi AIDS Task Force in Biloxi, Miss., operates a transitional housing facility for people with HIV/AIDS on the state’s Gulf Coast.

“Everyone we have in any of our shelters either have no income or have disability or a low-paying job,” said Garner. “It’s really difficult if you’re making $790 a month when a one-bedroom apartment in Hattiesburg is $550 to $600 a month. The math on that just doesn’t work and there’s not enough public housing and there’s not enough housing choice vouchers.”

AIDS Alabama has one of the largest housing programs of any HIV/AIDS service provider in the South with roughly 150 units throughout the state. The majority of these are in Birmingham, the state’s largest city.

AIDS Alabama also offers rental assistance to people living with HIV across the state through HOPWA.

“Even so we always have waiting lists,” Hiers told the Blade. “Housing is just a huge need for people with HIV.”

HIV/AIDS service providers with whom the Blade spoke in Mississippi and Alabama said access to transportation and even food can adversely affect the health of people living with the virus — especially those who live in rural areas.

Dr. Laura Beauchamps, an infectious disease practitioner at Open Arms, told the Blade as she prepared to administer pre-exposure prophylaxis (PrEP) that many people with HIV/AIDS who live in rural areas are simply unable to travel to Jackson “to get checked on a regular basis.”

“They just don’t take care of themselves and they keep on spreading [the virus,]” she said as Norwood listened. “It is just very sad to see. In other states it’s not the same because they have a better transportation situation or ways to get them to the clinics and continue [with their treatment.]”

Garner told the Blade one of her organization’s clients who lives in a shelter in Columbus, Miss., travels to the state capital, which is nearly two hours away, to receive health care and HIV treatments. AIDS Service Coalition also provides her with support network, even though its offices are a 4-hour drive away from where she currently lives.

“She calls once a month and we visit,” said Garner. “We do what we can do.”

Hiers said the majority of AIDS Alabama’s clients in the Birmingham metropolitan area do not own cars. The agency has three vans that “run full time” to bring clients to their appointments and other commitments, but Hiers said “it’s not enough.”

Hiers described the city’s public transportation system as “pitiful,” noting an AIDS Alabama client who takes a 5:30 a.m. bus from his home to get to his job at 9:30 a.m. was almost fired because he was late.

Up to 170 families each month receive food assistance from Open Arms.

Norwood noted the food pantry in the back of the clinic that her son helps stock with donations was “a little bare” because the next delivery had yet to arrive from a local food bank. She told the Blade she personally delivers food to her clients who are hungry and are unable to travel to the clinic.

“I’ll step out of pocket and go get them myself, or take food,” said Norwood. “Sometimes I have my people who haven’t ate in a few days and they’ll call one of my guys. And my guys will call me and say ‘hey Dot, honey can you help me Dot?’ Oh yeah, that’s not even to be asked.”

Lack of education, stigma spread virus

Timothy Thompson, HIV, gay news, Washington Blade

Timothy Thompson (Washington Blade photo by Michael Key)

Anti-HIV stigma also remains a serious problem for those living with the virus in the South.

Timothy Thompson, a peer educator with the New Orleans AIDS Task Force, told the Blade over dinner in the French Quarter on July 13 that many people who are disproportionately at risk for HIV in the city do not get tested because of the stigma attached to the virus.

“One of the biggest things is that there is the idea if I go and I test positive I’ll be alienized from my people, from my family or the people that I hang out with or things that I’m able to do I won’t be able to do anymore,” he said. “There is a level of truth to that because of the ongoing problems that are faced because of the ignorance that is around the disease itself.”

Thompson said people with HIV/AIDS with whom he has worked in New Orleans have told him that people did not want to have someone who is positive eat in their home because they think the virus spreads through saliva.

“They’re not aware of the different things that really transmit the disease as well as the different things that you can do to make sure that the people you are around that are affected about it still feel like they are normal human beings,” said Thompson. “You’re aware that this does not transmit this way and most people aren’t aware and they tend to offend people by their lack of education.”

The Blade heard similar stories from service providers and LGBT rights activists in Mississippi.

“We have folks — and this is 2014 — who are being asked in their family homes to eat off of paper plates,” said Garner.

Antwan Matthews, a gay man of color from Meridian, Miss., living with HIV, officially learned his status on April 24, 2013, the day before his 20th birthday.

He told the Blade during a July 11 interview at Open Arms where he will begin to receive care next month that his mother told him that his father, who is a Pentecostal minister, took out a life insurance policy on him after he found out he was positive.

“He’s almost gambling with my life,” said Matthews. “He’s just waiting for me to die or something.”

Matthews said his mother was initially supportive of him, but he said she pointed out his HIV status after they argued about his sister wanting to move out of the house once she had turned 18.

“She texts me and said ‘you wouldn’t listen, so look at you, you’re living with HIV now so you don’t have anything to say to me,’” said Matthews. “I was like OK. It kind of bothered me because you just don’t expect that to be said from your mom or your parents and stuff like that.”

The Belle Reve resident who asked to remain anonymous told the Blade he initially did not want to “introduce” his family in Lafayette, La., to “my HIV” because he thought they were not “going to accept it.”

“They did,” he said. “So I came here just to get myself together, for myself. So I came here and now they accept everything.”

Katrina disrupted HIV care, damaged facilities

Vicki Weeks, HIV, gay news, Washington Blade

Belle Reve Executive Director Vicki Weeks (Washington Blade photo by Michael Key)

Weeks said eight of 12 people who were living at Belle Reve when Hurricane Katrina approached New Orleans in 2005 could not evacuate on their own because they — or their relatives — did not have access to transportation.

She and three other Belle Reve staffers used private vehicles to evacuate their residents to a campground in Alexandria, La., a city roughly 200 miles northwest of New Orleans.

The trip that normally takes less than four hours took 16 hours because of massive traffic jams.

Weeks, her residents and staff spent nearly three weeks at the campground before an HIV/AIDS service organization in Anniston, Ala., offered them housing and a place to work.

They remained in Alabama for seven months before returning to New Orleans.

“The city did not have an evacuation plan for people with no vehicles, and that’s why so many people stayed,” said Weeks, who lives in the Gentilly Terrace neighborhood of New Orleans that Katrina inundated with six feet of water. “That’s why they had so many people here because there was no transportation out of this city other than your own vehicle or a vehicle of a relative. We tried to get our residents to go with relatives or with churches, but we still have eight out of 12 that had no way to get out of town.”

Katrina damaged the roof of AIDS Service Coalition’s shelter.

Garner told the Blade a man living with HIV from New Orleans approached her after she arrived to survey the damage and said he only had two days worth of his antiretrovirals.

“That story replicated itself,” she said. “Basically what we did for several months was triage.”

Garner added an additional problem that people living with HIV/AIDS from other states who fled to Mississippi after Katrina is the state’s Medicaid program offered less generous benefits than they had been accustomed.

“If they were getting psychotropic medicines or if they were getting pain medicines or fill in the blank, they came to Mississippi and that wasn’t covered,” she said.

Service providers criticize governors for not expanding Medicaid

 

Alabama State Capitol, HIV, gay news, Washington Blade

76 percent of those who are on the Alabama AIDS Drug Assistance Program would become eligible for Medicaid if Gov. Robert Bentley and the Republican-controlled Legislature expanded it, according to AIDS Alabama CEO Kathie Hiers. (Washington Blade photo by Michael Key)

A Gallup survey noted Texas had the highest rate of uninsured residents, with 27 percent of people without health insurance. Arkansas, Mississippi, Florida and Louisiana, Georgia and North Carolina were among the other states with the highest rates of uninsured residents.

Texas Gov. Rick Perry, Mississippi Gov. Phil Bryant, Florida Gov. Rick Scott, Louisiana Gov. Bobby Jindal, Georgia Gov. Nathan Deal and North Carolina Gov. Pat McCrory have all refused to expand their state’s Medicaid programs under the Affordable Care Act.

Hiers told the Blade the majority of the 13,000 Alabamians living with HIV are “extremely poor,” yet the state’s Medicaid program requires potential recipients to be disabled and have a monthly income of 13 percent of poverty level. She said this figure works out to around $111 a month.

Hiers added 76 percent of those who are on the Alabama AIDS Drug Assistance Program would become eligible for Medicaid if Gov. Robert Bentley and the Republican-controlled Legislature expanded it.

“I get so frustrated at our Southern states who need the health care the most not expanding Medicaid here,” said Hiers. “It’s just colossally stupid. We’re turning down billions and billions in health care for Alabamians and Southerners just because of the ideological differences between the parties. And I think that’s just wrong.”

Advocates and HIV/AIDS service providers with whom the Blade spoke in Mississippi, Louisiana and Alabama all said the vast majority of their funding comes from the federal government and private grants.

Eighty-five percent of AIDS Alabama’s annual budget of $7.9 million comes from federal sources, with HUD providing the majority of this money. The organization also receives financial support from the Ford Foundation, the Elton John Foundation, the Tide Foundation and other foundations.

HOPWA funds comprise 80 percent of Belle Reve’s $1 million annual budget.

“If we lose that there’s nothing else that we can do to keep the doors open,” Weeks told the Blade. “We have got to prepare for that.”

The Mississippi Department of Health runs a free STD clinic in Jackson where Beauchamps also works.

She told the Blade that she and her colleagues are able to find “a lot of people” there who are positive.

Beauchamps nevertheless stressed the state does not extend enough resources to her and other HIV/AIDS service providers to fight the epidemic.

“We need more grants,” said Beauchamps. “We need more support to do more testing and then to reach out in communities that don’t have a way to come all the way down to the metro area.”

Weeks criticized Louisiana lawmakers and Jindal for cutting state education and health care funding.

She noted the closest mental health clinic to Belle Reve is in Hammond, a city about an hour northwest of New Orleans, because Jindal closed the facility that had been in the Crescent City.

“All I can say is that we’re not happy with some of the issues or some of the things that our governor, Bobby Jindal, has done,” said Weeks. “We all get upset when he cuts funding for education or health care, but the state’s budget is in state law that they can’t touch any of this other stuff. That only leaves education and health care. So whoever set our government up did a very poor job.”

’I’m doing a 100 percent better’

Antwan Matthews, HIV, gay news, Washington Blade

Antwan Matthews (Washington Blade photo by Michael Key)

In spite of the steep challenges, people living with HIV/AIDS and those who support them remain optimistic.

Matthews has begun speaking with teenage boys about the virus. He is also fighting to include HIV/AIDS in school curricula.

“They need to be taught,” he told the Blade. “It’s just like anything else: English, history, math, anything else that they learn. They should learn about this.”

Green has once again began taking antiretrovirals after a three year lapse.

He also had surgery last month to remove a cancerous tumor from his rectum.

“I’m doing a 100 percent better,” said Green. “It’s like I’m getting back in touch with me and getting my priorities back together. I just don’t think I would have still been on this earth. I really don’t.”

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4 Comments

4 Comments

  1. Steve Gactivista

    August 8, 2014 at 1:37 pm

    Great article. I am so ashamed of how we treat people in our own country. I wish I had millions of dollars to help build homes for all HIV people on the hard edges of life.

  2. El Dorado

    August 8, 2014 at 10:09 pm

    The American South sounds a lot like Russia is for gays except that at least here we have freedom of speech and association per our constitution which allows us to fight for our rights and hate crimes laws that at least offer us some protections against bashing!

    Goes to show how naïve it is for gay Americans to think that being gay doesn’t matter anymore in this country. Younger gays living in larger more liberal cities really are living in a bubble reality. It’s a lot better than it was thirty years ago in general, but still far from where we want to be.

  3. Ray Hill

    August 14, 2014 at 7:54 pm

    I am a GLBTQ/HIV&AIDS activist in Houston, Texas We started organizing around AIDS related issues in 1980 with the formation of the Kaposi's Sarcoma Committee (now AIDS Foundation, Houston) before the terms AIDS and HIV were chosen. Montrose Clinic (organized 1978) is now Legacy Health Services with six locations in places where at risk populations live and by carefully usin available public funds and advising clients as to social services available we are doing a remarkable job addressing the needs. Montrose Center (originally Montrose Counseling Center) picks up what Legacy doesn't cover but we are not worried about overlap because the need for services is too important to quarrel about. What is needed in other "Southern" places is bold and imaginative local leadership.

  4. Marian Panayotov

    August 29, 2014 at 6:20 pm

    i am Marian from USA, Am really happy that i was cured of HIV with the herbal medicine of Dr Ariba, i have been suffering from this disease for the past 3 years without solution until i came across the email of this doctors who have cured so many people with his herbal medicine, i also chose to give him a chance to help me, he told me what to do and i kindly did it, and he gave me his herbal medicine and direct me on how to use, i also follows his direction for use and he ask me to go for a check up after 2 Days and which i did, to my greatest surprise My result came out as negative, Am really happy that there is someone like this DR who is ready to help anytime any day. to all the readers and viewers that is doubting this testimony stop doubting it and contact this Dr and see if he will not actually help you. i am not stupid if you want to confirm you can reach me on my phone number +12017544996. he is really a great man contact him now. [email protected] [email protected]

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Top 10 Blade news stories by web traffic

COVID breakthroughs, Equality Act, and anti-trans attacks

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Elliot Page created excitement by posting his first photo in swim trunks back in May.

Each year our staff gathers in late December to review the highest trafficked stories of the year and there’s more than a little bit of competitive spirit as we review the results. Here are the top 10 stories by web traffic at  HYPERLINK “http://washingtonblade.com”washingtonblade.com for 2021.

#10: Mark Glaze, gun reform advocate, dies at 51

The sad, tragic story of Glaze’s death captivated readers in November. 

#9: COVID breakthrough infections strike summer tourists visiting Provincetown

This one went viral in July after a COVID outbreak was blamed on gay tourists.

#8: Thank you, Kordell Stewart, for thoughtful response to ‘the rumor’

This opinion piece thanked the former NFL quarterback for writing a personal essay addressing gay rumors. 

#7: Elliot Page tweets; trans bb’s first swim trunks #transjoy #transisbeautiful

The actor created excitement by posting his first photo in swim trunks back in May.

#6: Romney declares opposition to LGBTQ Equality Act

Mitt Romney disappointed activists with his announcement; the Equality Act passed the House but never saw a vote in the Senate.

#5: White House warns state legislatures that passing anti-trans bills is illegal

The year 2021 saw a disturbing trend of GOP-led legislatures attacking trans people.

#4: Lincoln Project’s avowed ignorance of Weaver texts undercut by leaked communications

The Lincoln Project’s leaders, amid a scandal of co-founder John Weaver soliciting sexual favors from young men, have asserted they were unaware of his indiscretions until the Blade obtained electronic communications that called that claim into question.

#3: FOX 5’s McCoy suspended over offensive Tweet

Blake McCoy tweeted that obese people shouldn’t get priority for the COVID vaccine. 

#2: Transgender USAF veteran trapped in Taliban takeover of Kabul

Among the Americans trapped in the suburban areas of Kabul under Taliban control was a transgender government contractor for the U.S. State Department and former U.S. Air Force Sergeant. She was later safely evacuated.

#1: Amid coup chaos, Trump quietly erases LGBTQ protections in adoption, health services

And our most popular story of 2021 was about the Trump administration nixing regulations barring federal grantees in the Department of Health & Human Services from discriminating against LGBTQ people, including in adoption services.

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CDC still falling short on LGBTQ data collection for COVID patients: expert

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COVID-19 vaccine, gay news, Washington Blade
The CDC is still not issuing guidance to states on LGBTQ data collection among COVID patients.

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.”

Cahill, in an email to the Blade after the initial publication of this article, clarified CDC has indicated guidance on LGBTQ data collection for COVID patients may come in the near future.

“HHS leaders told us this fall that CDC is working on an initiative to expand SOGI data collection,” Cahill said. “We are hopeful that we will see guidance early in 2022. Key people at CDC, including Director Walensky, understand the importance of SOGI data collection given their long history of working on HIV prevention.”

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.

Although the federal government has remained intransigent in taking action, Cahill said the situation has improved among states and counted five states — California, Pennsylvania, Rhode Island, Nevada and Oregon — in addition to D.C. as among those that have elected to collect data on sexual orientation and gender identity of COVID patients.

However, Cahill said even those data collection efforts are falling short because those jurisdictions have merely been public about collecting the data, but haven’t reported back anything yet.

“Only California has reported data publicly, and the data that they’re reporting is really just the completeness of the data,” Cahill said. “They’re not reporting the data itself…And they’re also just asking people who tests positive. So, if somebody says positive COVID in California, a contact tracer follows up with that individual and asks them a battery of questions, and among the questions that are asked are SOGI questions.”

As a result of these efforts, Cahill said, California has data on the LGBTQ status of COVID patients, but the data is overwhelmingly more complete for the gender identity of these patients rather than their sexual orientation. As of May 2021, California reported that they had sexual orientation data for 9.5 percent of individuals who had died from COVID and 16 percent of people who tested positive, but for gender identity, the data were 99.5 percent.

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Equality Act, contorted as a danger by anti-LGBTQ forces, is all but dead

No political willpower to force vote or reach a compromise

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Despite having President Biden in the White House and Democratic majorities in both chambers of Congress, efforts to update federal civil rights laws to strengthen the prohibition on discrimination against LGBTQ people by passing the Equality Act are all but dead as opponents of the measure have contorted it beyond recognition.

Political willpower is lacking to find a compromise that would be acceptable to enough Republican senators to end a filibuster on the bill — a tall order in any event — nor is there the willpower to force a vote on the Equality Act as opponents stoke fears about transgender kids in sports and not even unanimity in the Democratic caucus in favor of the bill is present, stakeholders who spoke to the Blade on condition of anonymity said.

In fact, there are no imminent plans to hold a vote on the legislation even though Pride month is days away, which would be an opportune time for Congress to demonstrate solidarity with the LGBTQ community by holding a vote on the legislation.

If the Equality Act were to come up for a Senate vote in the next month, it would not have the support to pass. Continued assurances that bipartisan talks are continuing on the legislation have yielded no evidence of additional support, let alone the 10 Republicans needed to end a filibuster.

“I haven’t really heard an update either way, which is usually not good,” one Democratic insider said. “My understanding is that our side was entrenched in a no-compromise mindset and with [Sen. Joe] Manchin saying he didn’t like the bill, it doomed it this Congress. And the bullying of hundreds of trans athletes derailed our message and our arguments of why it was broadly needed.”

The only thing keeping the final nail from being hammered into the Equality Act’s coffin is the unwillingness of its supporters to admit defeat. Other stakeholders who spoke to the Blade continued to assert bipartisan talks are ongoing, strongly pushing back on any conclusion the legislation is dead.

Alphonso David, president of the Human Rights Campaign, said the Equality Act is “alive and well,” citing widespread public support he said includes “the majority of Democrats, Republicans and independents and a growing number of communities across the country engaging and mobilizing every day in support of the legislation.”

“They understand the urgent need to pass this bill and stand up for LGBTQ people across our country,” David added. “As we engage with elected officials, we have confidence that Congress will listen to the voices of their constituents and continue fighting for the Equality Act through the lengthy legislative process.  We will also continue our unprecedented campaign to grow the already-high public support for a popular bill that will save lives and make our country fairer and more equal for all. We will not stop until the Equality Act is passed.”

Sen. Jeff Merkley (D-Ore.), chief sponsor of the Equality Act in the Senate, also signaled through a spokesperson work continues on the legislation, refusing to give up on expectations the legislation would soon become law.

“Sen. Merkley and his staff are in active discussions with colleagues on both sides of the aisle to try to get this done,” McLennan said. “We definitely see it as a key priority that we expect to become law.”

A spokesperson Senate Majority Leader Charles Schumer (D-N.Y.), who had promised to force a vote on the Equality Act in the Senate on the day the U.S. House approved it earlier this year, pointed to a March 25 “Dear Colleague” letter in which he identified the Equality Act as one of several bills he’d bring up for a vote.

Despite any assurances, the hold up on the bill is apparent. Although the U.S. House approved the legislation earlier this year, the Senate Judiciary Committee hasn’t even reported out the bill yet to the floor in the aftermath of the first-ever Senate hearing on the bill in March. A Senate Judiciary Committee Democratic aide, however, disputed that inaction as evidence the Equality Act is dead in its tracks: “Bipartisan efforts on a path forward are ongoing.”

Democrats are quick to blame Republicans for inaction on the Equality Act, but with Manchin withholding his support for the legislation they can’t even count on the entirety of their caucus to vote “yes” if it came to the floor. Progressives continue to advocate an end to the filibuster to advance legislation Biden has promised as part of his agenda, but even if they were to overcome headwinds and dismantle the institution needing 60 votes to advance legislation, the Equality Act would likely not have majority support to win approval in the Senate with a 50-50 party split.

The office of Manchin, who has previously said he couldn’t support the Equality Act over concerns about public schools having to implement the transgender protections applying to sports and bathrooms, hasn’t responded to multiple requests this year from the Blade on the legislation and didn’t respond to a request to comment for this article.

Meanwhile, Sen. Susan Collins (R-Maine), who declined to co-sponsor the Equality Act this year after having signed onto the legislation in the previous Congress, insisted through a spokesperson talks are still happening across the aisle despite the appearances the legislation is dead.

“There continues to be bipartisan support for passing a law that protects the civil rights of Americans, regardless of their sexual orientation or gender identity,” said Annie Clark, a Collins spokesperson. “The Equality Act was a starting point for negotiations, and in its current form, it cannot pass. That’s why there are ongoing discussions among senators and stakeholders about a path forward.”

Let’s face it: Anti-LGBTQ forces have railroaded the debate by making the Equality Act about an end to women’s sports by allowing transgender athletes and danger to women in sex-segregated places like bathrooms and prisons. That doesn’t even get into resolving the issue on drawing the line between civil rights for LGBTQ people and religious freedom, which continues to be litigated in the courts as the U.S. Supreme Court is expected any day now to issue a ruling in Fulton v. City of Philadelphia to determine if foster care agencies can reject same-sex couples over religious objections.

For transgender Americans, who continue to report discrimination and violence at high rates, the absence of the Equality Act may be most keenly felt.

Mara Keisling, outgoing executive director of the National Center for Transgender Equality, disputed any notion the Equality Act is dead and insisted the legislation is “very much alive.”

“We remain optimistic despite misinformation from the opposition,” Keisling said. “NCTE and our movement partners are still working fruitfully on the Equality Act with senators. In fact, we are gaining momentum with all the field organizing we’re doing, like phone banking constituents to call their senators. Legislating takes time. Nothing ever gets through Congress quickly. We expect to see a vote during this Congress, and we are hopeful we can win.”

But one Democratic source said calls to members of Congress against the Equality Act, apparently coordinated by groups like the Heritage Foundation, have has outnumbered calls in favor of it by a substantial margin, with a particular emphasis on Manchin.

No stories are present in the media about same-sex couples being kicked out of a restaurant for holding hands or transgender people for using the restroom consistent with their gender identity, which would be perfectly legal in 25 states thanks to the patchwork of civil rights laws throughout the United States and inadequate protections under federal law.

Tyler Deaton, senior adviser for the American Unity Fund, which has bolstered the Republican-led Fairness for All Act as an alternative to the Equality Act, said he continues to believe the votes are present for a compromise form of the bill.

“I know for a fact there is a supermajority level of support in the Senate for a version of the Equality Act that is fully protective of both LGBTQ civil rights and religious freedom,” Deaton said. “There is interest on both sides of the aisle in getting something done this Congress.”

Deaton, however, didn’t respond to a follow-up inquiry on what evidence exists of agreeing on this compromise.

Biden has already missed the goal he campaigned on in the 2020 election to sign the Equality Act into law within his first 100 days in office. Although Biden renewed his call to pass the legislation in his speech to Congress last month, as things stand now that appears to be a goal he won’t realize for the remainder of this Congress.

Nor has the Biden administration made the Equality Act an issue for top officials within the administration as it pushes for an infrastructure package as a top priority. One Democratic insider said Louisa Terrell, legislative affairs director for the White House, delegated work on the Equality Act to a deputy as opposed to handling it herself.

To be sure, Biden has demonstrated support for the LGBTQ community through executive action at an unprecedented rate, signing an executive order on day one ordering federal agencies to implement the U.S. Supreme Court’s decision last year in Bostock v. Clayton County to the fullest extent possible and dismantling former President Trump’s transgender military ban. Biden also made historic LGBTQ appointments with the confirmation of Transportation Secretary Pete Buttigieg and Rachel Levine as assistant secretary of health.

A White House spokesperson insisted Biden’s team across the board remains committed to the Equality Act, pointing to his remarks to Congress.

“President Biden has urged Congress to get the Equality Act to his desk so he can sign it into law and provide long overdue civil rights protections to LGBTQ+ Americans, and he remains committed to seeing this legislation passed as quickly as possible,” the spokesperson said. “The White House and its entire legislative team remains in ongoing and close coordination with organizations, leaders, members of Congress, including the Equality Caucus, and staff to ensure we are working across the aisle to push the Equality Act forward.”

But at least in the near-term, that progress will fall short of fulfilling the promise of updating federal civil rights law with the Equality Act, which will mean LGBTQ people won’t be able to rely on those protections when faced with discrimination based on sexual orientation or gender identity.

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