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EQCA filling LGBTQ COVID-19 resource need, echoing early days of AIDS

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House Speaker Nancy Pelosi on Twitter May 17, delivering commencement address to Smith college

The coronavirus pandemic has upended normality and the once seemingly inevitable full equality for LGBTQ people. One year ago, on May 17, the US House of Representatives passed the historic Equality Act, legislation that would amend the Civil Rights Act of 1964 to include sexual orientation and gender identity. But Republican Senate Majority Leader Mitch McConnell refuses to bring the nondiscrimination legislation up for a vote, leaving LGBTQ equality dangling as the Trump administration meticulously strips away hard-won rights and the conservative-dominant U.S. Supreme Court is poised to rule on whether federal job protections for LGBTQ people under Title VII are constitutional.

If the Court strikes down those protections, federal employeesĀ and workers in 28 states without LGBTQ employment nondiscrimination laws ā€” Ā including essential first responders and healthcare workers ā€” could be quietly, individually, unceremoniously fired, adding to the burgeoning roster of the unemployed, which in April hit 14.7%, the highest rate since the Great Depression. What will happen to LGBTQ people in states with nondiscrimination laws?

But even if by some miracle the Equality Act makes it to the Oval Office, it may not feel the flare of President Trumpā€™s special sharpie since he opposes the legislation, despite his love affair with former Fox contributor Ric Grenell, the gay Ambassador to Germany.

House Speaker Nancy Pelosi didnā€™t let the anniversary of the Equality Act pass unnoticed, however. Last year, she wore a rainbow wristbandĀ as she orchestrated theĀ 236-173Ā bipartisan vote, invoking both the Founding Fathers and the 50th anniversary of the Stonewall riots on the House floor. This year, her passion for LGBTQ equality was laced with tempered rage.

ā€œThis year, the ongoing challenge posed by the unprecedented coronavirus pandemic reaffirms our urgent responsibility to reject the violence, bigotry and hate that weaken and divide our communities,ā€ Pelosi said, in part. ā€œFor LGBTQ individuals at home and around the world who are persecuted because of who they are or whom they love, we must speak out and demand action. Ā We cannot stay silent while the Trump Administrationā€™s callous, anti-LGBTQ agenda continues to dismantle decades of hard-won progress by stripping LGBTQ Americans of their rights and their dignity.Ā  And we cannot stand by while the Administration abandons our global leadership in the fight against anti-LGBTQ violence and discrimination.ā€

Powerful words that comfort and inspire, hang in the air, then vanish. Today, like the beginning of the AIDS crisis three decades ago, LGBTQ people are disappearing, identities erased by government neglect, the weight of bureaucracy, and the lack of action, despite good intentions.

On May 19, there were 1.56 million confirmed cases of COVID-19 in the United states, with 92,258 deaths. The government collected data on gender, age, race and ethnicity ā€“ but how many of these human beings were LGBTQ?

On the afternoon of May 19, the state of California reported a total of 81,795 cases of coronavirus, with 3,334 deaths. California has the largest LGBTQ population in the country so how many of these people are LGBTQ?

On the afternoon of May 19, the Los Angeles County Department of Public Health identified 39,573 positive cases of COVID-19, with a total of 1,913 deaths, noting that 92 percent of the people who died had underlying health conditions.

ā€œAnĀ interactive dashboardĀ is available that provides an overview on COVID-19 testing, cases and deaths along with maps and graphs showing testing, cases and death data by community poverty level, age, sex and race/ethnicity,ā€ says a Public Health press release promoting their website,Ā www.publichealth.lacounty.gov. Sexual orientation and gender identity are not included.

For LGBTQ people who survived the AIDS crisis, the pain of this erasure evokes a ā€œsafer-at-homeā€ primal scream.

ā€œ[E]ssentially no data is being collected in California or elsewhere about COVID-19 impacts on the LGBT community on infection rates, on hospitalization rates, on death rates ā€” that data simply isnā€™t being collected,ā€ said out State Sen. Scott Wiener on a Zoom news conference May 13 before testifying before the California Senate Health Committee on his LGBTQ data collection bill, SB 932. ā€œIt is appalling that we have the ability to collect the data and itā€™s simply ā€” itā€™s an afterthought. And that is, unfortunately, the history of the LGBTQ community where we have to fight against invisibility all the time, we have to fight to be counted.ā€

Equality California Executive Director Rick Chavez Zbur was pained to say that ā€œthe fight before us just about collecting this data reminds me more of the 1980s than I want to admit. For our community to once again be erased and ignored, to have our government look the other way as our community dies nearly four decades later, itā€™s just appalling, itā€™s unacceptable.ā€

The difference between the 1980s and now though, Zbur said, was that today the LGBTQ community has openly LGBTQ leaders and allies working to correct the dire inequality the COVID-19 pandemic has exposed.

But it doesnā€™t feel that way.

There was plenty of time to kick existing LGBTQ health and death data laws into gear, tailoring unique messages, mentioning the LGBTQ community as one of the minority groups at greater risk for infection and inviting help to test and track LGBTQ COVID-19 cases.

ā€œThis new virus represents a tremendous public health threat,ā€ Dr. Nancy Messonnier, director of the National Center for Immunization and Respiratory Diseases, told reporters on a telephonic news briefing Tuesday, Feb.25, when the Los Angeles Blade first starting covering the COVID-19 crisis.

ā€œUltimately we expect we will see community spread in this country,ā€ she said. ā€œItā€™sĀ not a question of if this will happen but when this will happenĀ and how many people in this country will have severe illnesses ā€¦.We are asking the American public to prepare for the expectation that this might be bad.ā€

At a Feb. 27 news conference, CaliforniaĀ Gov. Gavin NewsomĀ said there was no coronavirus emergency in the state but 33 people tested positive, most quarantined travelers on the Diamond Princess cruise ship, adding that following protocol, California was monitoring more than 8,4000 peopleĀ who flew from Asia to California.

Meanwhile, a woman from Solano County tested positive for COVID-19 on March 1, appearing to be the first US case for which there was no known source for the illness. But at a Newsom news conference, California Health and Human Services Secretary Mark Ghaly noted that the woman had been sick in the community well before she was hospitalized. Contact tracing revealed that two Los Rios Community College District college students, working as medical professionals, had come in contact with her and were being isolated and ā€œtreatedā€ in Sacramento County. Additionally, three UC Davis roommates were under 14-day isolation ā€œout of an abundance of cautionā€ after one showed mild symptoms,Ā according to the Los Angeles Times.

And then there was the whistleblower who revealed that HHS ā€œsent more than a dozen workers toĀ receive the first Americans evacuated from Wuhan, China, the epicenter of the coronavirus outbreak,Ā without proper training for infection control or appropriate protective gear,ā€ the Washington Post reported. ā€œThe workers did not show symptoms of infection and were notĀ tested for the virus,Ā according to lawyers for the whistleblower. Out Rep. Mark Takano was furious when those evacuees were sent to March Air Force Base in Southern California.

Three months ago, HHS, the CDC, the State of California, and LA Public Health knew there was a strong likelihood that community spread of COVID-19 would be bad but didnā€™t gear up to protect first responders, healthcare workers or the public. Nor did they extend collection of demographic data needed to track outbreaks beyond gender and age when West Hollywood, LA and California declared a health emergency.

LGBTQ people were good citizens, responsibly taking part in the greater mitigation effort when officials ordered large gatherings to be cancelledĀ  and businesses closed.

On March 11, anĀ open letter from more than 100 organizationsĀ specifying how COVID-19 could impact LGBTQ communities was distributed to the media, healthcare workers and public officials. It outlined how COVID-19 ā€œmay pose an increased risk to the LGBTQ+ populationā€ with vulnerabilities and underlying medical conditions and laid out ā€œspecific steps to minimize any disparity.ā€ For instance: 37%Ā of LGBTQ adults smoke every day compared to 27% of non-LGBTQ people; 21%Ā of LGBTQ people have asthma, compared to 14% of non-LGBTQ people.

ā€œ[W]e need to make sure the most vulnerable among us are not forgotten. Our smoking rates alone make us extremely vulnerable and our access to care barriers only make a bad situation worse.ā€ noted Dr. Scout, the Deputy Director for the National LGBT Cancer Network, ā€œThis letter outlines simple steps to ensure no population is further stigmatized by a virus.ā€

The LGBTQ community responded. ā€œThe situation with COVID-19 is changing quickly. I donā€™t know whether we will be closed for a few days, a few weeks or even longer. Until our public health officials can assure us that it is safe, we will remain closed,ā€ David Cooley wrote in a March 16 Facebook post announcing he was shutting down The Abbey in West Hollywood. ā€œI am saddened that it has come to this. If staying open caused the pandemic to spread more quickly, I would be inconsolable. I know this crisis will pass. When it does, we will all celebrate together.ā€

Meanwhile, Trump began a pattern of lies and magical thinking. ā€œItā€™s going to disappear,ā€ Trump assured the world on March 17, having previously declared the coronavirus was ā€œwell under controlā€ in this country.

The LGBTQ nonprofit safety net started to fray, but they bucked up to behave responsibly, as well. The LA LGBT Center said they were starting tele-health contacts, protecting seniors, homeless youth and staff from COVID-19; Project Angel Food issued a dire call for volunteers and the TransLatin@ Coalition closed but still provided food and sought shelter for clients.

Accustomed to equality in Southern California, LGBTQ people felt part of the larger community response. In a March 16 phone interview, LA Mayor Eric GarcettiĀ recalled the communityā€™s historic experience with the AIDS crisis.

ā€œThis community has been through tougher days than this and the most important thing is to not only be resilient but to be calm,ā€ Garcetti told the LA Blade. ā€œThe LGBTQ community ā€” which has seen what spread can do to a community and how devastating it can be ā€” can really be the leaders of influencing in our workplaces, with our families and with others.ā€

The LGBTQ and HIV/AIDS communities did their part. TheĀ Los Angeles County Commission on HIVĀ  released an Interim Guidance for healthcare providers and persons living with HIV and underscoring the statewide and local ā€œSafer At Homeā€ orders. And nonprofit leaders such Jeffrey King, founder and executive director ofĀ In The Meantime Men,Ā found ways to address issues no one else was discussing.

ā€œThe coronavirus has us all making major adjustments in our lives,ā€Ā King said in a video posted on his Facebook page. ā€œI want to encourage you to stay connected, and to consider your risk. Many of us are still engaging in sex. Our sex clubs and gay-specific social venues are closing now. Our social dating apps, however, are in full effect. Again ā€“ I want you to consider your risk and to act responsibly.ā€

But LGBTQ people started disappearing and dying, including icons such as playwright Terrence McNally.

Then, towards the end of March came the surge. Frontline community clinics and health centers thatĀ faced a shortageĀ of test kits and medical supplies pleaded for help. Jim Mangia, Chief Executive of St. Johnā€™s Well Child and Family Center, one of the few LA-area clinics that serve transgender clients of color, told reporters on a March 24 conference call that the situation was dire. The week before, 879 patients ā€œwere required to be placed in triage tents to isolate them from other patients,ā€Ā the LA Times reported. No data on how many clients were transgender.

ā€œPublic health officials across California report that the number of COVID-19 patients in intensive care units (ICU) doubled overnight. As of 2 pm. Saturday, the state now has 4,643 confirmed cases and 101 deaths, a spokesperson for the California Department of Public Health (CDPH) told the Los Angeles Blade Saturday afternoon, adding that approximately 89,600 tests had been conducted as of March 27,ā€ the LA Blade reported. Newsom was bracing for a possible torrent of new infections with testing increasingly becoming an issue.

ā€œThereā€™s as much as ten times as many cases of coronavirus infection than is being reported,ā€ a medical worker at the Cedars-Sinai Medical CenterĀ told the Blade. ā€œI think that the death count is very likely much higher, because the criteria for testing is so strict. So, we donā€™t really know the actual infection rate or mortality rate is currently.ā€

But no one was talking to the LGBTQ community. Finally, attorney and West Hollywood City Councilmember John Duran started posting daily updates on his personal Facebook page ā€” including one with a frank discussion about having sex in a pandemic.

On April 4, the LA Blade posted a number of essential LGBTQ services, including The Trevor ProjectĀ which said its crisis contact volume spiked at nearly twice normal volume, especially as COVID-19 forced LGBTQ young people to return to or remain in unsupportive or abusive environments. (The Trevor Projectā€™s TrevorLifeline 24/7 can be reached at 1-866-488-7386, via chat atĀ TheTrevorProject.org/Help or by texting 678-678.)

That was also the day the LA Blade finally got through during Newsomā€™s regular news conferences and asked if the newly announced website (covid19supplies.ca.gov) met the specific health and economic needs of LGBTQ Californians, especially those living with HIV and LGBTQI+ residents solely dependent on the gig economy.

ā€œYeah, from across the spectrum from addressing homeless youth ā€” particularly in LA County. So, the answer is ā€˜yesā€™ ā€” from an LGBTQ perspective but also from a geographical perspective. And from an age perspective as it relates to finding more federal resources for housing opportunities for LGBTQ youth and adults. Look, I come from San Francisco, 5th generation, itā€™s a point of deep pride when we talk in terms of cultural competency, neighborhood by neighborhood,ā€ Newsom said. ā€œThe history of the HIV epidemic searing the consciousness of our health care delivery focus ā€” again a bottom-up focus, and yeah, of course that extended to Dr. Fauci, who is very familiar to the folks in San Francisco and within the LGBTQ community as being one of our heroes decades ago, in terms of how he met that moment and he spoke truth in that moment. So, the answer is absolutely ā€˜yesā€™ ā€” point of pride for me as a former mayor of San Francisco, whoā€™s deeply attached to the needs and desires and aspirations and the health of our LGBTQ community.ā€

ā€œWe are always grateful for Governor Newsomā€™s leadership, but perhaps never more than during this public health crisis. Governor Newsom has been a lifelong pro-equality champion and we know he and his team are prioritizing our LGBTQ+ community ā€” and the diverse communities to which we belong ā€” and will identify and implement specific solutions to meet the unique challenges we face,ā€ Equality Californiaā€™s Zbur wrote in an email to the LA Blade. ā€œWe look forward to working closely with the governor in the coming weeks and months to provide health and healing for LGBTQ+ and all Californians.ā€

But while public acknowledgements were appreciated, they were brief and unsustained. LA County and LA City news conferences never even mentioned the LGBTQ community when other minority groups or issues about access to care were highlighted. The LA Blade called out the disparities on April 14 noting that for all the attention of a slew of populations at high risk for contagion, LGBTQs were not included, nor was data being collected.

The LA Blade was not alone. On April 21, GLMA Health Professionals Advancing LGBTQ Equality issued a second open letter signed by more than 170 organizationsĀ calling for action ā€œto protect LGBTQ patients from discrimination and to include sexual orientation and gender identity in data collection efforts related to the pandemic,ā€ as well as the economic harm to LGBTQ communities.

By May 12, Newsom told the LA Blade that he and Dr. Sonia Angell were working with Sen. Wiener on the data collection bill ā€“ but he did not commit to signing an emergency executive order to demand that local providers and county health departments start collecting LGBTQ data that is being lost with every passing minute.

ā€œI donā€™t think that there are any disagreements that this needs to happen,ā€ Wiener said during the Zoom news conference. ā€œObviously, the Governor and current Public Health are drinking water from a fire hose right now, and so we will continue to work with them to make sure that this happens and that itā€™s prioritized.ā€

However, Wiener added, ā€œI would love for the Governor to issue an executive order immediately,ā€ using the language in the bill.

And what of the most marginalized of the marginalized? Despite California officially a sanctuary state, the Disaster Relief Assistance for Immigrants (DRAI) program is not accessible for transgender, gender-nonconforming, and Intersex (TGI) people, many of whom are people of color, who have difficulty meeting criteria, according to Bamby Salcedo, founder of TransLatin@ Coalition.

ā€œAll organizations distributing money under DRAI are non-LGBTQ specific, which further impacts LGBTQ people, particularly TGI people, from accessing these funds. Communities such as sex workers, houseless people, those who have been recently released from immigration detention who do not have any type of documentation, and all others that live at the intersections of identifying as TGI will experience significant difficulties in accessing DRAI funds,ā€ Salcedo said in a May 19 press release.

Despite decades of seeming progress, thousands of votes to advance democracy, millions contributed to fundraisers and political campaigns ā€” LGBTQ people are once again fending for themselves and taking care of each other.

On May 18, Equality California launched a consumer-friendlyĀ websiteĀ andĀ help lineĀ ā€œto connect LGBTQ+ Californians impacted by the COVID-19 (Coronavirus) crisis with LGBTQ+ friendly resources and support services,ā€ says an EQCA press release. The civil rights organization is also working to expand the website ā€œto include comprehensive directories of service providers in each of the stateā€™s 53 counties and launch a series of free webinars for people facing unemployment or lost wages.ā€

ā€œThe COVID-19 LGBTQ+ Help Center and Help Line are roadmaps for members of our community to find the support they need from providers who know and care about LGBTQ+ people,ā€Ā says Zbur. ā€œWeā€™re in this together. Whether you need to get tested, file for unemployment or a loan, find a foodbank or talk to a mental health professional, weā€™re here to help. Go to the website, call the phone number or send us an email and weā€™ll get you to the right place.ā€

The Equality California website, funded by grants from the AT&T Foundation and Sempra Energy Foundation, outlines how LGBTQ+ peopleĀ ā€œface higher rates of comorbiditiesĀ such as HIV and cancer, areĀ more likely to use tobacco products, areĀ less likely to have health insuranceĀ andĀ less likely to access careĀ when they are sick out of fear of discrimination,ā€ are overrepresented in the industries hit hardestĀ by the economic downturn, with elders whoĀ already facedĀ isolation before the COVID crisis.

The goal of the Help Center and Help Line is to help LGBTQ+ people navigate the social safety net to find resources they need.

Ā LGBTQ people might be dis-counted by governmental agencies but as in the early days of AIDS, LGBTQ people are starting to take care of each other. What the future looks like for the otherwise invisible devastated community remains to be seen.

LGBTQ+ Californians facing healthcare, financial, social challenges are encouraged to visitĀ covid19.eqca.orgĀ or call (323) 448-0126 for assistance.

 

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AIDS and HIV

Young gay Latinos see rising share of new HIV cases, leading to call for targeted funding

Fernando Hermida diagnosed four months after asking for asylum

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Fernando Hermida drives to Orlando, Fla., to attend a medical appointment for HIV care on May 27, 2024. (Associated Press photo by Laura Bargfeld)

Four months after seeking asylum in the U.S., Fernando Hermida began coughing and feeling tired. He thought it was a cold. Then sores appeared in his groin and he would soak his bed with sweat. He took a test.

On New Yearā€™s Day 2022, at age 31, Hermida learned he had HIV.

ā€œI thought I was going to die,ā€ he said, recalling how a chill washed over him as he reviewed his results. He struggled to navigate a new, convoluted health care system. Through an HIV organization he found online, he received a list of medical providers to call in D.C., where he was at the time, but they didnā€™t return his calls for weeks. Hermida, who speaks only Spanish, didnā€™t know where to turn.

By the time of Hermidaā€™s diagnosis, the U.S. Department of Health and Human Services was about three years into a federal initiative to end the nationā€™s HIV epidemic by pumping hundreds of millions of dollars annually into certain states, counties, and U.S. territories with the highest infection rates. The goal was to reach the estimated 1.2 million people living with HIV, including some who donā€™t know they have the disease.

Overall, estimated new HIV infection rates declined 23 percent from 2012 to 2022. But a KFF Health News-Associated Press analysis found the rate has not fallen for Latinos as much as it has for other racial and ethnic groups.

While African Americans continue to have the highest HIV rates in the U.S. overall, Latinos made up the largest share of new HIV diagnoses and infections among gay and bisexual men in 2022, per the most recent data available, compared with other racial and ethnic groups. Latinos, who make up about 19 percent of the U.S. population, accounted for about 33 percent of new HIV infections, according to the Centers for Disease Control and Prevention.

The analysis found Latinos are experiencing a disproportionate number of new infections and diagnoses across the U.S., with diagnosis rates highest in the Southeast. Public health officials in Mecklenburg County, North Carolina, and Shelby County, Tennessee, where data shows diagnosis rates have gone up among Latinos, told KFF Health News and the AP that they either donā€™t have specific plans to address HIV in this population or that plans are still in the works. Even in well-resourced places like San Francisco, HIV diagnosis rates grew among Latinos in the last few years while falling among other racial and ethnic groups despite the countyā€™s goals to reduce infections among Latinos.

ā€œHIV disparities are not inevitable,ā€ Robyn Neblett Fanfair, director of the CDCā€™s Division of HIV Prevention, said in a statement. She noted the systemic, cultural, and economic inequities ā€” such as racism, language differences, and medical mistrust.

And though the CDC provides some funds for minority groups, Latino health policy advocates want HHS to declare a public health emergency in hopes of directing more money to Latino communities, saying current efforts arenā€™t enough.

ā€œOur invisibility is no longer tolerable,ā€ said Vincent Guilamo-Ramos, co-chair of the Presidential Advisory Council on HIV/AIDS.

Lost without an interpreter

Hermida suspects he contracted the virus while he was in an open relationship with a male partner before he came to the U.S. In late January 2022, months after his symptoms started, he went to a clinic in New York City that a friend had helped him find to finally get treatment for HIV.

Too sick to care for himself alone, Hermida eventually moved to Charlotte to be closer to family and in hopes of receiving more consistent health care. He enrolled in an Amity Medical Group clinic that receives funding from the Ryan White HIV/AIDS Program, a federal safety-net plan that serves over half of those in the nation diagnosed with HIV, regardless of their citizenship status.

His HIV became undetectable after he was connected with case managers. But over time, communication with the clinic grew less frequent, he said, and he didnā€™t get regular interpretation help during visits with his English-speaking doctor. An Amity Medical Group representative confirmed Hermida was a client but didnā€™t answer questions about his experience at the clinic.

Hermida said he had a hard time filling out paperwork to stay enrolled in the Ryan White program, and when his eligibility expired in September 2023, he couldnā€™t get his medication.

He left the clinic and enrolled in a health plan through the Affordable Care Act marketplace. But Hermida didnā€™t realize the insurer required him to pay for a share of his HIV treatment.

In January, the Lyft driver received a $1,275 bill for his antiretroviral ā€” the equivalent of 120 rides, he said. He paid the bill with a coupon he found online. In April, he got a second bill he couldnā€™t afford.

For two weeks, he stopped taking the medication that keeps the virus undetectable and intransmissible.

ā€œEstoy que colapso,ā€ he said. Iā€™m falling apart. ā€œTengo que vivir para pagar la medicaciĆ³n.ā€ I have to live to pay for my medication.

One way to prevent HIV is preexposure prophylaxis, or PrEP, which is regularly taken to reduce the risk of getting HIV through sex or intravenous drug use. It was approved by the federal government in 2012 but the uptake has not been even across racial and ethnic groups: CDC data show much lower rates of PrEP coverage among Latinos than among white Americans.

Epidemiologists say high PrEP use and consistent access to treatment are necessary to build community-level resistance.

Carlos Saldana, an infectious disease specialist and former medical adviser for Georgiaā€™s health department, helped identify five clusters of rapid HIV transmission involving about 40 gay Latinos and men who have sex with men from February 2021 to June 2022. Many people in the cluster told researchers they had not taken PrEP and struggled to understand the health care system.

They experienced other barriers, too, Saldana said, including lack of transportation and fear of deportation if they sought treatment.

Latino health policy advocates want the federal government to redistribute funding for HIV prevention, including testing and access to PrEP. Of the nearly $30 billion in federal money that went toward things like HIV health care services, treatment, and prevention in 2022, only 4% went to prevention, according to a KFF analysis.

They suggest more money could help reach Latino communities through efforts like faith-based outreach at churches, testing at clubs on Latin nights, and training bilingual HIV testers.

Latino rates going up

Congress has appropriated $2.3 billion over five years to the Ending the HIV Epidemic initiative, and jurisdictions that get the money are to invest 25 percent of it in community-based organizations. But the initiative lacks requirements to target any particular groups, including Latinos, leaving it up to the cities, counties, and states to come up with specific strategies.

In 34 of the 57 areas getting the money, cases are going the wrong way: Diagnosis rates among Latinos increased from 2019 to 2022 while declining for other racial and ethnic groups, the KFF Health News-AP analysis found.

Starting Aug. 1, state and local health departments will have to provide annual spending reports on funding in places that account for 30 percent or more of HIV diagnoses, the CDC said. Previously, it had been required for only a small number of states.

In some states and counties, initiative funding has not been enough to cover the needs of Latinos.

South Carolina, which saw rates nearly double for Latinos from 2012-2022, hasn’t expanded HIV mobile testing in rural areas, where the need is high among Latinos, said Tony Price, HIV program manager in the state health department. South Carolina can pay for only four community health workers focused on HIV outreach ā€” and not all of them are bilingual.

In Shelby County, Tennessee, home to Memphis, the Latino HIV diagnosis rate rose 86 percent from 2012 to 2022. The health department said it got $2 million in initiative funding in 2023 and while the county plan acknowledges that Latinos are a target group, department director Michelle Taylor said: ā€œThere are no specific campaigns just among Latino people.ā€

Up to now, Mecklenburg County, North Carolina, didnā€™t include specific targets to address HIV in the Latino population ā€” where rates of new diagnoses more than doubled in a decade but fell slightly among other racial and ethnic groups. The health department has used funding for bilingual marketing campaigns and awareness about PrEP.

Moving for medicine

When it was time to pack up and move to Hermidaā€™s third city in two years, his fiancĆ©, who is taking PrEP, suggested seeking care in Orlando, Fla.

The couple, who were friends in high school in Venezuela, had some family and friends in Florida, and they had heard about Pineapple Healthcare, a nonprofit primary care clinic dedicated to supporting Latinos living with HIV.

The clinic is housed in a medical office south of downtown Orlando. Inside, the mostly Latino staff is dressed in pineapple-print turquoise shirts, and Spanish, not English, is most commonly heard in appointment rooms and hallways.

ā€œAt the core of it, if the organization is not led by and for people of color, then we’re just an afterthought,ā€ said Andres Acosta Ardila, the community outreach director at Pineapple Healthcare, who was diagnosed with HIV in 2013.

ā€œĀæTe mudaste reciente, ya por fin?ā€ asked nurse practitioner Eliza Otero. Did you finally move? She started treating Hermida while he still lived in Charlotte. ā€œHace un mes que no nos vemos.ā€ Itā€™s been a month since we last saw each other.

They still need to work on lowering his cholesterol and blood pressure, she told him. Though his viral load remains high, Otero said it should improve with regular, consistent care.

Pineapple Healthcare, which doesnā€™t receive initiative money, offers full-scope primary care to mostly Latino males. Hermida gets his HIV medication at no cost there because the clinic is part of a federal drug discount program.

The clinic is in many ways an oasis. The new diagnosis rate for Latinos in Orange County, Florida, which includes Orlando, rose by about a third from 2012 through 2022, while dropping by a third for others. Florida has the third-largest Latino population in the U.S., and had the seventh-highest rate of new HIV diagnoses among Latinos in the nation in 2022.

Hermida, whose asylum case is pending, never imagined getting medication would be so difficult, he said during the 500-mile drive from North Carolina to Florida. After hotel rooms, jobs lost, and family goodbyes, he is hopeful his search for consistent HIV treatment ā€” which has come to define his life the past two years ā€” can finally come to an end.

ā€œSoy un nĆ³mada a la fuerza, pero bueno, como me comenta mi prometido y mis familiares, yo tengo que estar donde me den buenos servicios mĆ©dicos,ā€ he said. I’m forced to be a nomad, but like my family and my fiancĆ© say, I have to be where I can get good medical services.

Thatā€™s the priority, he said. ā€œEsa es la prioridad ahora.”

KFF Health News and The Associated Press analyzed data from the U.S. Centers for Disease Control and Prevention on the number of new HIV diagnoses and infections among Americans ages 13 and older at the local, state, and national levels. This story primarily uses incidence rate data ā€” estimates of new infections ā€” at the national level and diagnosis rate data at the state and county level.

Bose reported from Orlando, Fla.. Reese reported from Sacramento, Calif.Ā AP video journalist Laura Bargfeld contributed to this report.

The Associated Press Health and Science Department receives support from the Robert Wood Johnson Foundation. The AP is responsible for all content.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

A Project of KFF Health News and the Associated Press co-published by Univision Noticias

CREDITS:

Reporters: Vanessa G. SƔnchez, Devna Bose, Phillip Reese

Cinematography: Laura Bargfeld

Photography: Laura Bargfeld, Phelan M. Ebenhack

Video Editing: Federica Narancio, Kathy Young, Esther Poveda

Additional Video: Federica Narancio, Esther Poveda

Web Production: Eric Harkleroad, Lydia Zuraw

Special thanks to Lindsey Dawson

Editors: Judy Lin, Erica Hunzinger

Data Editor: Holly Hacker

Social Media: Patricia VĆ©lez, Federica Narancio, Esther Poveda, Carolina Astuya, Natalia Bravo, Juan Pablo Vargas, Kyle Viterbo, Sophia Eppolito, Hannah Norman, Chaseedaw Giles, Tarena Lofton

Translation: Paula Andalo

Copy Editing: Gabe Brison-Trezise

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF ā€” an independent source of health policy research, polling, and journalism. Learn more about KFF.

Subscribe to KFF Health News’ free Morning Briefing.

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AIDS and HIV

Researchers announce using gene editing tool, HIV cut out of cells

The team eliminated HIV from cells in a laboratory raising hopes of a cure, but cautioned that for now their work represents proof of concept

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HIV virus in the bloodstream. (Photo Credit: National Institutes of Health)

BARCELONA, Spain – Researchers from the Amsterdam University Medical Center made a groundbreaking announcement this week of the results of a major study to be presented at the 2024 European Congress of Clinical Microbiology and Infectious Diseases, which will be held April 27-30 in Barcelona.

A team led by Dr. Elena Herrera-Carrillo using a gene-editing tool known as Crispr-Cas, were able to eliminate HIV DNA, removing all traces of the virus from infected cells. In the press release Tuesday, Dr. Herrera-Carrillo alongside team members Yuanling Bao, Zhenghao Yu and Pascal Kroon, said that utilizing the gene-editing tool they focused on parts of the virus that stay the same across all known HIV strains.

ā€œThese findings represent a pivotal advancement towards designing a cure strategy,ā€ the team said.

Herrera-Carrilloā€™s team works in developing a cure for HIV infection based on novel CRISPR-Cas methods. Ā CRISPR-Cas is a powerful gene editing tool working like genetic scissors but can also be used to selectively attack and inactivate integrated HIV DNA genomes in infected cells.

Herrera-Carrilloā€™s team eliminated HIV from cells in a laboratory, raising hopes of a cure, but cautioned that for now their work represents proof of concept, and will not become a cure for HIV tomorrow. According to the researchers the next steps involve optimizing the delivery route to target the majority of the HIV reservoir cells within the body.

The hope the research team points out, is to devise a strategy to make this system as safe as possible for future clinical applications, and achieve the right balance between efficacy and safety. ā€œOnly then can we consider clinical trials of ā€˜cureā€™ in humans to disable the HIV reservoir,” they stated adding, ā€œWhile these preliminary findings are very encouraging, it is premature to declare that there is a functional HIV cure on the horizon.ā€

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Gilead Sciences awards grants to HIV/AIDS groups in Caribbean, Latin America

Stigma, criminalization laws among barriers to fighting pandemic in region

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Free condoms in a SĆ£o Paulo Metro station. Gilead Sciences has announced it has given grants to 35 organizations in Latin America and the Caribbean. The groups will use the funds to fight HIV/AIDS in the region. (Washington Blade photo by Michael K. Lavers)

FOSTER CITY, Calif. ā€” Gilead Sciences this week announced it has given $4 million in grants to 35 organizations in Latin America and the Caribbean that fight HIV/AIDS.

A press release notes AsociaciĆ³n Panamericana de Mercadeo Social (Pan-American Association of Social Marketing) in Nicaragua, FundaciĆ³n Genesis (Genesis Foundation) in Panama, FundaciĆ³n por una Sociedad Empoderada (Foundation for an Empowered Society) in Argentina, AssociaĆ§Ć£o Nacional de Travestis e Transexuais (National Association of Travestis and Transsexuals) in Brazil and Caribbean Vulnerable Communities are among the groups that received grants. Gilead notes this funding through its Zeroing In: Ending the HIV Epidemic in Latin America and the Caribbean will “improve access to care, increase health equity and reduce HIV-related stigma for populations most affected by HIV.”

ā€œThe HIV prevention and care needs of people throughout Latin America and the Caribbean are incredibly diverse, and each of these programs addresses a unique community challenge,” said Gilead Vice President of Corporate Giving Carmen Villar. “Our grantees are deeply embedded in their communities and best positioned to provide needed HIV care and support services.” 

“Their expertise will be essential to achieve the Zeroing InĀ programā€™s goals of improving access to comprehensive care among priority populations, decreasing HIV-related stigma and reducing HIV and broader health inequities,ā€ she added.

The pandemic disproportionately affects Transgender people and sex workers, among other groups, in the region. Activists and HIV/AIDS service providers in the region with whom the Washington Blade has previously spoken say discrimination, stigma, poverty, a lack of access to health care and criminalization laws are among the myriad challenges they face.

First Lady Jill Biden in 2022 during a trip to Panama announced the U.S. will provide an additional $80.9 million in the fight against HIV/AIDS in Latin America through the President’s Emergency Plan for AIDS Relief. 

Cuba in 2015 became the first country in the world to eliminate mother-to-child transmission of HIV. The Cuban government until 1993 forcibly quarantined people with HIV/AIDS in state-run sanitaria.

Antigua and Barbuda, St. Kitts and Nevis, Barbados and Trinidad and Tobago in recent years have decriminalized consensual same-sex sexual relations. 

The Inter-American Commission on Human Rights in 2021 ruled Jamaica must repeal its colonial-era sodomy law. The country’s Supreme Court last year ruled against a gay man who challenged it.  

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Local, national events to mark 35th annual World AIDS Day

HIV disproportionately affects certain populations. Men who have sex with men accounted for 70% of 32,100 estimated new HIV infections

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(Washington Blade photo by Michael Key)

WASHINGTON – UNAIDS dubbed this yearā€™s World AIDS Day theme as ā€œLet Communities Lead.ā€ This is how conversations around HIV and AIDS should be structured, Duanteā€™ Brown said, who manages two programs at NMAC ā€” a nonprofit dedicated to working to end the AIDS epidemic. People living with HIV need to be considered the subject matter experts, he said.Ā 

ā€œBringing those people into the room, showing them that they have a voice and that there’s not just this group of people who are making a decision for them ā€¦ is definitely the way that you go about this.ā€

Brown manages the ESCALATE program at NMAC, which aims to empower people to address HIV stigma, and the ELEVATE program, which is a training program for people with HIV to be more involved in the planning and delivery of the Ryan White HIV/AIDS Program, which is the largest federal program designed specifically for people with HIV. 

In the United States, itā€™s estimated 1.2 million people are living with HIV, according to HIV.gov. About 13% are unaware they have HIV.

HIV also continues to disproportionately affect certain populations. Men who have sex with men accounted for 70% of the 32,100 estimated new HIV infections in 2021. And Black individuals accounted for 40% of the new infections that year, while only comprising 12% of the population of the United States, according to the CDC

In 2023, stigma is a key inhibitor to ending the epidemic, Brown said. When stigma gets out of the way, there could be a day when there are no new cases of HIV transmissions, he said. To get around that stigma, people need to have meaningful and productive conversations about AIDS. 

ā€œNot treating it as taboo, making sure that we are empowering people living with HIV and AIDS to tell their stories and to be empowered to feel that it’s OK,ā€ Brown said. ā€œAnd that nothing is wrong with you.ā€

And there are events in the locally and nationally to recognize World AIDS Day, many of them aimed at abolishing the stigma that comes with talking about HIV.

Icon Janet Jackson headlines the World AIDS Day Concert on Dec. 1 in Houston.

At a national level, Janet Jackson is set to headline the World AIDS Day concert on Dec. 1 ā€” an annual fundraiser sponsored by the AIDS Healthcare Foundation. The concert will be at the NRG Arena in Houston, and will also honor actor and activist Blair Underwood with its lifetime achievement award.Ā 

ā€œ[The concert] really is a way to commemorate World AIDS Day in a way that is both remembrance of those that we’ve lost, recognizing where we’re at, but also really celebrating and connecting the work that’s yet to be done. And having folks still leaving uplifted and elevated about what the future could hold,ā€ said Imara Canady, AHFā€™s national director for communications and community engagement. 

Jackson has long been an outspoken advocate for people living with HIV. Her song, ā€œTogether Again,ā€ is a tribute to a friend she lost to AIDS, as well as a dedication to patients around the world. 

The AIDS Healthcare Foundation, the largest nonprofit HIV/AIDS service organization and advocacy group, has several health care centers in the region and many across the nation and world. AHF also has a free HIV test locater online at freehivtest.net

AIDSWatch, the electronic memorial to people lost to HIV and AIDS, will be viewable onĀ www.AIDSWatch.orgĀ and on the City of West Hollywoodā€™sĀ WeHoTVĀ broadcast and streaming channels, including Spectrum Channel 10 within West Hollywood, beginning at 12:01 a.m. on Thursday, Dec. 1, for 24 hours.

The City of West Hollywood will joinĀ STORIES: The AIDS MonumentĀ andĀ APLA HealthĀ in aĀ World AIDS DayĀ event onĀ Friday, Dec. 1. The evening will begin atĀ 5:30 p.m. with a reception at the West Hollywood Park Aquatic and Recreation Center (ARC) Respite Deck, located at 8750 El Tovar Place.

After a short program with refreshments, attendees will descend the grand staircase of the ARC atĀ 6:30 p.m.Ā in a candlelight procession through West Hollywood Park and along N. Robertson, Santa Monica, and N. San Vicente Boulevards to the Cityā€™s Council Chambers/Public Meeting Room, located at 625 N. San Vicente Boulevard. There, the evening will continue with a screening of the award-winning 2023 documentaryĀ ā€œCommitment to Life.ā€ Doors will open atĀ 7 p.m.Ā and the screening will begin promptly atĀ 7:15 p.m.Ā 

Events are free to attend and open to the public. Limited validated parking will be available at the West Hollywood Park 5-Story structure.Ā 

Advance RSVP is requested by reserving a spot on Eventbrite.

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Maxine Waters criticizes House GOP over proposed cuts to HIV/AIDS programs

Calif. Democrat spoke at U.S. Conference on HIV/AIDS in D.C.

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U.S. Rep. Maxine Waters (D-Calif.) speaks at the U.S. Conference on HIV/AIDS on Sept. 6, 2023, in Washington. (Washington Blade photo by Michael Key)

WASHINGTON ā€” U.S. Rep. Maxine Waters (D-Calif.) on Wednesday sharply criticized House Republicans over their proposed cuts to HIV/AIDS prevention programs.

The California Democrat who represents the stateā€™s 43rd Congressional District in a speech she delivered at the U.S. Conference on HIV/AIDS noted theĀ House Appropriations Committeeā€™s Fiscal Year 2024 Labor, Health, Human Services, Education and Related Agencies Appropriations BillĀ would cut $767 million from domestic HIV/AIDS programs.

Waters said the bill would cut funds to fight HIV/AIDS among underrepresented groups by 53 percent and ā€œcompletely eliminatesā€ funding for ā€œMinority AIDS Initiative activities within the Substance Abuse and Mental Health Services Administration.ā€ Waters also noted the appropriations measure ā€œeliminates fundingā€ for the Centers for Disease Control and Preventionā€™s Ending the HIV Epidemic Initiative, the Ryan White HIV/AIDS Program and community health centers.

ā€œThe cuts to the Minority AIDS Initiative will exacerbate racial disparities and the elimination of the (Ending the) HIV Epidemic Initiative,ā€ said Waters.

Waters also criticized House Republicans for ā€œrefusing to authorizeā€ the Presidentā€™s Emergency Plan for AIDS Relief.ā€ The California Democrat said ending PEPFAR ā€œwould endanger the lives of millions of people around the world who are living with HIV and endanger the lives of millions more who are at risk.ā€ 

ā€œMoreover, it would compromise United States leadership on global health issues,ā€ added Waters. ā€œThese programs used to have widespread support. Itā€™s shameful that House Republicans are now trying to eliminate them. We cannot allow these cuts to pass. We cannot compromise. We will not give up.ā€

U.S. Reps. Jim Jordan (R-Ohio) and Marjorie Taylor Greene (R-Ga.) are among those who Waters criticized by name in her speech.

ā€œI will speak truth to power. I want to use words that they will understand. Hell no! We wonā€™t go! We are not going to give up,ā€ said Waters. ā€œThatā€™s the peopleā€™s money. You canā€™t decide who youā€™re going to spend it on and not who youā€™re going to spend it on.ā€

More than 3,000 people are expected to attend the National Minority AIDS Council-organized conference that will end on Saturday. This yearā€™s theme is ā€œA Love Letter to Black Women.ā€

ā€œWe need a love letter to Black women,ā€ said Waters. ā€œWe need it not only from this conference. We need it from our families often times. We need it from our communities. We need it from the churches that we give so much attention to and give our resources to and donā€™t really get it back. We need a love letter coming from all over this country for what we have suffered, for what we have endured, for the way that we have been denied and for the way that we have been ostracized.ā€ 

Waters in her speech specifically praised former Massachusetts Congressman Barney Frank and the late U.S. Sen. Ted Kennedy (D-Mass.) for their work in support of LGBTQ+ rights and efforts to combat HIV/AIDS. Waters also thanked Jewel Thais-Williams, who opened Catch One, a bar and restaurant on Pico Boulevard in Los Angeles that became a refuge for people with HIV/AIDS.

ā€œThey had nowhere to gather, nowhere to go, nowhere to be recognized as people who needed support,ā€ said Waters.

B. Kaye Hayes, deputy assistant secretary for infectious disease in the Office of the Assistant Secretary for Health who is also the executive director of the Presidential Advisory Council on HIV/AIDS, is among those who are expected to speak at the conference. Mark S. King, an HIV/AIDS activist and blogger who published ā€œMy Fabulous Disease: Chronicles of a Gay Survivorā€ on Sept. 1, is scheduled to talk on Thursday.

Cal Benn contributed to this story.

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American Red Cross ends ban on blood donations by gay men

Many healthy individuals who previously could not give will now be able to support their community through the gift of blood donation

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Photo Credit: American Red Cross

WASHINGTON – The American Red Cross announced a historic change in the organization’s policies regarding blood donations by gay and bisexual men. Under this new donor screening process, all donors answer the same eligibility questions regardless of gender or sexual orientation and will be assessed for blood donation based on individual risk factors, not on sexual orientation.

This change by the Red Cross falls within the U.S. Food and Drug Administration finalized guidelines for blood donation issued this past May that will use a uniform individualized risk assessment questionnaire for respondents regardless of their sexual orientation, sex, or gender.

In a statement the Red Cross noted:

“This change means many healthy individuals who previously could not give will now be able to support their community through the gift of blood donation.

Andrew Goldstein, a cancer researcher from Los Angeles, was a regular blood donor in his younger years before the FDAā€™s previous policies made him ineligible to donate as a gay man. His desire to influence change compelled him to register as a participant in the FDA funded ADVANCE Study in 2021, which sought to gather data to evaluate the possibility of moving to an individual donor assessment. He is proud he was able to be part of the study that led to this change and is excited to finally be able to give blood again.

ā€œThereā€™s so much in the world that you canā€™t help with, and you sometimes have to see people going through difficult times, but something like giving blood feels like something so small that you can do, and it means a lot to me that Iā€™ll be able to do that again,ā€ said Andrew. Now, Andrew and many others are able to share their good health with patients in need of lifesaving transfusions.”

The FDA’s new protocols issued in May note that prospective donors who have had a new sexual partner, or more than one sexual partner in the past three months, and anal sex in the past three months, would be ineligible.

So would those who are ā€œtaking medications to treat or prevent HIV infection (e.g., antiretroviral therapy (ART), pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP),ā€ because these drugs can delay the detection of HIV.

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Elton John AIDS Foundation launches ambitious new initiative

Throughout Pride Month, Sir Elton John and the co-chairs of The Rocket Fund are challenging supporters toĀ let their #InnerElton out

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Elton John & David Furnish at Oscars Viewing Party 2021 (Screenshot/YouTube Hollywood TV)

NEW YORK – The Rocket FundĀ is the Elton John AIDS Foundationā€™s latest transformative $125 million campaign to redouble the fight against AIDS everywhere. Growing levels of stigmatization, marginalization, and poverty have led to high rates of HIV and low access to healthcare globally.Ā 

ā€œFor years, HIV/AIDS has caused enormous pain across the world, but I pray that soon this epidemic will be a thing of the pastā€Ā said Sir Elton John.Ā ā€œMore than 30 years after I launched the Elton John AIDS Foundation, my passion for reaching everyone, everywhere with education and compassionate care is still as strong as ever. The Rocket Fund will turbo-charge our mission and reach those most at risk from this terrible disease. Now is the time. This epidemic has gone on too long. We must all act together to see AIDS defeated in our lifetimes.ā€

Money from the fund will go towards supporting access to HIV prevention and treatment services, including providing access to HIV tests, antiretroviral therapies, and Pre-Exposure Prophylaxis (PrEP), according to the press release. Donatella Versace, one of the Rocket Fundā€™s co-chairs ā€” alongside Furnish, Tani Austin, and David Geffen ā€” has also pledged to match donations to the fund up to $300,000 during the month of June.

Throughout Pride Month, Sir Elton John and the co-chairs of The Rocket Fund are challenging supporters to let their #InnerElton out. Letting your #InnerElton out is about proudly expressing your authentic self, showing love for others and taking compassionate action. Supporters are encouraged to join the movement by posting photos of themselves on social media wearing their own take on Eltonā€™s signature looks ā€“ or whatever makes them feel their true self ā€“ with the hashtag #InnerElton. Many notables are joining to let their #InnerElton out, including Dolly Parton, Michaela JaĆ© Rodriguez, JoJo Siwa, Heidi Klum, Smokey Robinson and more. Learn more here. The Let Your Inner Elton Out campaign was created by advertising agency Invisible Man and produced in partnership with global communications agency BCW.

The Foundation launched this critical initiative on June 5, the day in 1981 when the Centers for Disease Control released its first report on what would become the AIDS epidemic. This inaugural Rocket Day commemorates the early days of the fight against HIV/AIDS, while committing to accelerate progress towards ending AIDS for all.

ā€œThe end of the HIV/AIDS epidemic is within sight, and The Rocket Fund is the push we need to finally cross the horizon,ā€Ā said David Furnish, Chairman of the Elton John AIDS Foundation.Ā ā€œTo end AIDS, we must make targeted investments that can level the playing field, by tackling the inequalities and stigma that prevent people from accessing the care they desperately need. By joining The Rocket Fund and our mission, you can help transform the future for millions of people globally.ā€

ā€œAs weā€™ve learned through the global fight to stop COVID-19, epidemics do not recognize state borders, economic or cultural differences. If left unchecked, they only worsen with devastating impacts on the most vulnerable,ā€Ā said Anne Aslett, Chief Executive Officer of the Elton John AIDS Foundation.Ā ā€œIt is critical that we meet this moment to connect vulnerable people with the care and resources they need to live vibrant, healthy lives and we welcome all who want to see an end to this disease to join us.ā€

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New data shows HIV infections dropped- mostly among whites

Significant decline in new HIV infections, but impact of prevention efforts far less substantial for Black and Hispanic-Latino populations

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Centers for Disease Control and Prevention headquarters in Atlanta. (Photo Credit: CDC/GSA)

ATLANTA – Data published Tuesday. by the Centers for Disease Control and Prevention shows a significant decline in new HIV infections, but suggests the impact of prevention efforts was far less substantial for Black and Latino populations.

From 2017 to 2021, as rates of HIV testing, treatment, and the use of pre-exposure prophylaxis (PrEP) medication rose, new cases dropped by 12 percent overall and by as much as 34 percent among gay and bisexual males aged 13 to 24.

The numbers show a “move in the right direction,” CDC Director Rochelle Walensky said in a press release.

However, when broken down by race, the CDC found new infections were down by 27 percent and 36 percent, respectively, among Black and Hispanic-Latino populations, compared with 45 percent of whites.

Similarly, by 2021 about one third of those who are considered eligible were taking PrEP for HIV prevention, but the CDC noted this number includes “relatively few Black people or Hispanic/Latino people” despite the significant increase in prescriptions up from just 13 percent in 2017.

ā€œLongstanding factors, such as systemic inequities, social and economic marginalization and residential segregation,” Walensky noted, continue to act as barriers “between highly effective HIV treatment and prevention and people who could benefit from them.”

She added, “Efforts must be accelerated and strengthened for progress to reach all groups faster and equitably.ā€

Robyn Neblett Fanfair, acting director of the CDC’s Division of HIV Prevention, said that “At least three people in the U.S. get HIV every hourā€”at a time when we have more effective prevention and treatment options than ever before.”

ā€œThese tools must reach deep into communities and be delivered faster to expand progress from some groups to all groups,” she said.

The HIV+Hepatitis Policy Institute issued a press release following the CDC’s announcement of the new data, noting both the encouraging progress and need for improvement.

ā€œIt appears that our investments in HIV prevention are providing some positive results, but the persistent high number of new diagnoses and the low usage of PrEP among the communities most impacted by HIV point to the need for increased resources, particularly for a national PrEP program,ā€ said the group’s executive director, Carl Schmid.

President Joe Biden’s FY24 budget requested $237 million for a national PrEP program along with $850 million to support the U.S. Department of Health and Human Services’ “Ending the HIV Epidemic in the U.S.” initiative.

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Presidentā€™s Emergency Plan for AIDS Relief marks year 20

Achievements PEPFAR have been remarkable, well-documented by outside evaluators, and hugely applauded throughout the advocacy community

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President George W. Bush signing PEPFARā€™s authorizing legislation January 28, 2003. (Photo Credit: George W. Bush Presidential Center)

WASHINGTON ā€“ The Presidentā€™s Emergency Plan for AIDS Relief (PEPFAR) marks its twenty year anniversary today, marking the largest commitment by any nation to address a single disease in the world.

The initiative which was personally led and launched by former President George W. Bush in 2003,  its funding has totaled more than $110 billion to date, including funding for the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund), to which the U.S. government is the largest donor.

PEPFAR is credited with saving millions of lives and helping to change the trajectory of the global HIV epidemic.  The White House today released a statement by President Joe Biden marking the 20th Anniversary:

Twenty years ago today, President George W. Bush declared that preventing and treating HIV/AIDS was a foreign policy priority of the United States. At a time when nearly 30 million people were HIV positive, but very few were receiving life-saving medicines, the Presidentā€™s Emergency Plan for AIDS Relief (PEPFAR) transformed the global AIDS response and laid a marker for Americaā€™s commitment to countries that were impacted the hardest by the AIDS epidemic. Helping lead the bipartisan effort in Congress to authorize PEPFAR is among my proudest achievements from my time in the Senate. To this day, PEPFAR remains a powerful example of Americaā€™s unmatched ability to drive progress and make life better for people around the world.
 
Since 2003, PEPFAR has saved more than 25 million lives and dramatically improved health outcomes in more than 55 partner countries. AIDS-related deaths have declined by 68 percent since their peak in 2004, and new HIV infections are down 42 percent. PEPFAR investments have ensured that 5.5 million babies have been born HIV-free. And two decades of investment in partner nationsā€™ health systems played a critical role in countriesā€™ ability to respond to other health crises such as COVID-19, Mpox, and Ebola.    
 
Today, PEPFAR continues to support 20.1 million people around the world with HIV/AIDS treatment, and my Administration is committed to continuing to lead the global HIV/AIDS response. We will build on our decades of progress to reach the Sustainable Development Goal of ending AIDSā€Æby 2030, work to eliminate the stigma and inequities that keep people from accessing care, and keep the voices of people living with HIV/AIDS at the center of our response.  I look forward to working with Congress on PEPFARā€™s reauthorization this year.

PEPFAR is overseen by the U.S. Global AIDS Coordinator, who is appointed by the President, confirmed by the Senate, and reports directly to the Secretary of State, as established through PEPFARā€™s authorizing legislation.

PEPFARā€™s original authorization established new structures and authorities, consolidating all U.S. bilateral and multilateral activities and funding for global HIV/AIDS. Several U.S. agencies, host country governments, and other organizations are involved in implementation.

Dr. John Nkengasong, the current coordinator was sworn in on June 13, 2022, and holds the rank of Ambassador leading the Office of the Global AIDS Coordinator (OGAC) at the U.S. Department of State.

Nobel Prize winning scientist Harold Varmus, who served as Director of the National Institutes of Health (NIH) from 1993 to 1999 and currently the Lewis Thomas University Professor of Medicine at Weill Cornell Medicine in New York City, wrote in an article honoring World Aids Day 2013:

[…] “the PEPFAR story must begin with George W. Bush and his wife, Laura, and their interests in AIDS, Africa, and what Bush termed ā€œcompassionate conservatism.ā€ According to his 2010 memoir, Decision Points, the two of them developed a serious interest in improving the fate of the people of Africa after reading Alex Haleyā€™s Roots and visiting The Gambia in 1990.3 In 1998, while pondering a run for the U.S. presidency, he discussed Africa with Condoleezza Rice, his future secretary of state; she said that, if elected, working more closely with countries on that continent should be a significant part of his foreign policy. She also told him that HIV/AIDS was a central problem in Africa but that the United States was spending only $500 million per year on global AIDS, with the money spread across six federal agencies, without a clear strategy for curbing the epidemic.”

Key Facts (As provided by Kaiser Health & Family Foundation)

  • Although the U.S. has been involved in efforts to address the global AIDS crisis since the mid-1980s, the creation of the Presidentā€™s Emergency Plan for AIDS Relief (PEPFAR) in 2003 marked a significant increase in funding and attention to the epidemic.
  • PEPFAR is the largest commitment by any nation to address a single disease in the world; to date, its funding has totaled more than $110 billion, including funding for the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund), to which the U.S. government is the largest donor. PEPFAR is credited with saving millions of lives and helping to change the trajectory of the global HIV epidemic.
  • U.S. funding for PEPFAR grew from $2.2 billion in FY 2004 to $7.0 billion in FY 2022; FY 2022 funding includes $5.4 billion provided for bilateral HIV efforts and $1.6 billion for multilateral efforts ($50 million for UNAIDS and $1.56 billion for the Global Fund).
  • As the COVID-19 pandemic continues to have profound effects across the world, PEPFAR has acted to respond to COVID-19 in countries that receive support in order to minimize HIV service disruptions and leverage the programā€™s capabilities to address COVID-19 more broadly.
  • Looking ahead, PEPFAR faces several issues and challenges, including how best to: address the short- and long-term impacts of COVID-19 on PEPFAR and the HIV response; accelerate progress toward epidemic control in the context of flat funding; support and strengthen community-led responses and the sustainability of HIV programs; define its role in global health security and broader health systems strengthening efforts; and continue to coordinate with other key players in the HIV ecosystem, including the Global Fund.

Key Activities and Results (As provided by Kaiser Health & Family Foundation)

PEPFAR activities focus on expanding access to HIV prevention, treatment, and care interventions. These include provision of antiretroviral treatment, pre-exposure prophylaxis, voluntary male circumcision, condoms, and other commodities related to HIV services. In addition, PEPFAR has launched specific initiatives in key strategic areas. For example, in 2015, PEPFAR launched DREAMS, a public-private partnership that aims to reduce HIV infections in adolescent girls and young women.

The latest results reported by PEPFAR indicate that it has:

  • supported testing services for 63.4 million people in FY 2021;
  • prevented 2.8 million babies from being born with HIV, who would have otherwise been infected;
  • provided care for more than 7.1 million orphans and vulnerable children (OVC);
  • supported training for nearly 300,000 new health care workers; and
  • supported antiretroviral treatment for 18.96 million people.
  • In the 15 countries implementing the DREAMS initiative, new diagnoses among adolescent girls and young women have declined with most DREAMS areas (96%) experiencing declines greater than 25% and nearly two-thirds with declines greater than 40%.

The achievements of the PEPFAR program have been remarkable, well-documented by outside evaluators, and hugely applauded throughout the advocacy community and the developing world. In general, milestones have been met, the program has been enlarged (for instance, to include some research on implementation of medical assistance), the roster of PEPFAR countries has grown and spending plans have not been exceeded.

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FDA eases blood donation restrictions for gay & bisexual men

The FDA’s proposal would lift the mandatory three-month deferral period for some men who have sex with men

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FDA headquarters (Photo Credit: U.S. Government/GSA)

SILVER SPRING, Md. – The U.S. Food and Drug Administration (FDA) introduced a proposed change to its blood donation guidelines on Friday that would ease restrictions for gay and bisexual men.

The FDA notes the proposal, news of which was first reported in November, would bring U.S. policies in alignment with those in place in countries like the U.K. and Canada. The agency is expected to formally adopt the new guidelines after a public comment period.

The move follows criticism from LGBTQ groups and organizations like the American Medical Association (AMA) who have long argued the current policy is homophobic and based on an outdated understanding of the risks associated with blood donation by men who have sex with men.

As the AMA wrote of the current policy: “a man who has protected sex with another man in the three months prior to a blood donation cannot be a donor, but a man or woman who has unprotected sex with multiple partners of the opposite sex over the same time period remains eligible.”

The FDA’s proposal would lift the mandatory three-month deferral period for some men who have sex with men and instead use a “gender-inclusive, individual risk-based questions relevant to HIV risk.”

Potential donors would be asked for information about their sexual history over the past three months. Respondents who indicate they have had sex with one or more new sexual partners would then be asked whether they have had anal sex during this period. Those who answer “yes” would be deferred from blood donation.

Axios noted that as of this morning, about 20 percent of the country’s community blood centers have a one-day supply or less, while the FDA’s broadened eligibility criteria would increase the annual blood supply by two to four percent, citing data from America’s Blood Centers’ daily tracker and the Williams Institute.

U.S. Sen. Tammy Baldwin (D-Wis.) issued a statement celebrating the FDA’s proposal. ā€œAs I have long advocated for, this blood donation policy takes a step forward and is better rooted in the most up-to-date science with a focus on individual risk factors, not outdated stigmas that effectively ban gay and bisexual men,” she said.

Baldwin has repeatedly urged the agency to revisit its blood donation policy over the years, including by corralling support from other members of Congress to cosign letters to the FDA in 2014 and 2016, raising the issue again in 2020 as the COVID-19 pandemic exacerbated shortages in the blood supply.

The Congressional LGBTQ+ Equality Caucus also acknowledged the move in a statement by its chair, Rep. Mark Pocan (D-Wis.): “I am glad the FDA is finally moving toward an individual risk-based assessment model, but recognize, based on existing reporting, that many LGBTQI+ people may still be barred from donating,ā€ he said. ā€œI look forward to taking a closer look at the proposed guidelines once they are published and working with the FDA to ensure that any unnecessary barriers are removed.ā€

Several LGBTQ groups also issued statements celebrating the FDA’s new guidance.

“These changes are 40-plus years in the making, and are a tremendous leap forward toward elevating science over stigma,” said GLAAD President Sarah Kate Ellis. “GLAAD and leading medical experts have long been advocating for guidelines that see and treat LGBTQ people the same as any other person, including as potential donors who want to help others.”

ā€œThis new policy removes a decades-long barrier for many in our community ā€“ and there is more to do to ensure gay, bisexual and transgender people are no longer unfairly stigmatized when they try to donate blood,” Human Rights Campaign President Kelley Robinson said. “The assessment criteria have flaws, focusing excessively, for instance, on the number of partners a potential donor has instead of just on new partners,” she added.

Carl Schmid, executive director of the HIV+ Hepatitis Policy Institute, said: “While this long-overdue change is being made based on the science and the facts, which have been clear for years, it is the result of the leadership of the Biden administration that continues to tear down discriminatory government policies.ā€

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