The face of HIV in the United States has long been white gay men, even though the epidemic has had a devastating and disproportionate impact on African-American communities.

This is especially true among women; 60 percent of newly diagnosed cases of HIV in women in 2017 were African-American. Yet, African-American women’s voices are notoriously absent from the national discourse on HIV.

Largely invisible to a fractured health care system, these women are often breadwinners and matriarchs whose families count on them for support and care.

Treatments to help people who are HIV-positive manage their illness and survive into older age have improved greatly, yet the unique health needs of African-American women living and aging with HIV—estimated at about 140,000—are often ignored.

While many are actively taking medication and receiving care, some do not know their HIV status. After diagnosis, many have difficulties managing their HIV, which can contribute to their other health challenges.

I have been working on collecting oral histories from many older HIV-positive women in the Washington, D.C., area, where I live and research. It is my hope that by focusing on the voices of African-American women themselves, we as a country are able to better understand the profound impact that HIV has had on black life.

HIV and African-Americans.

Many believe the HIV epidemic in the United States is nearing an end, in part because increased funding, targeted prevention efforts, and better treatment have resulted in drastic reductions in new HIV-positive cases. Even President Trump, in his recent State of the Union address, discussed his goal of ending HIV by 2030. I am an HIV researcher, and I can say this is totally unrealistic, especially for African-Americans.

Despite comprising only 12 percent of the overall U.S. population, African-Americans represent 43 percent of all persons with newly diagnosed HIV and 42 percent of all people living with HIV. African-Americans living with HIV are nearly 10 times more likely to be diagnosed with AIDS (now often called advance or late-stage HIV) and over six times more likely to die of complications of advanced HIV than their white counterparts.

African-Americans are also at a higher risk for other health conditions, which can make managing HIV infection more difficult. For instance, African-Americans are twice as likely to die from heart disease and 50 percent more likely to have high blood pressure than whites.

In Washington, D.C., a place filled with public health experts and policymakers, the HIV prevalence rate is the highest in the nation, exceeding the World Health Organization’s definition of a generalized epidemic. African-Americans represent a staggering 75 percent of all HIV cases in D.C.

HIV in Washington D.C. is a regional epidemic, and crosses the jurisdictional border into Prince George’s County, Maryland. The sprawling suburbs of Prince George’s County are well known for their ranking as one of the wealthiest African-American-majority counties in the nation, but with HIV rates that are four to 10 times higher than those of white adults.

The high rates of HIV in Washington D.C. and Prince George’s County reflect a growing public health crisis in the United States, where the disproportionate burden of HIV is increasingly concentrated in the U.S. South. Southern states, where 55 percent of African-Americans live, have the highest rates of new HIV-positive diagnoses, the highest percentage of people living with HIV, and the lowest rates of survival for those who are HIV-positive.

Government investment in the domestic response to HIV tops more than $26 billion per year, yet these health inequities in HIV for African-Americans continue to persist. These inequities are due in part to abstinence-only funding to schools with large minority populations and HIV-specific criminal laws, which undermine the health and well-being of African-Americans and perpetuate systems of inequity. Systemic racism in resource distribution, such as concentrated poverty and health care and funding disparities is also a significant driver of the epidemic within African-American communities.

Since the beginning of the epidemic in the 1980s, African-American women have carried a large burden of HIV, and more than 60,000 lost their lives. But not everyone died. My project of personal narratives of these women suggest that they live with multiple uncertainties brought on by HIV. Many worry about how their health, disability, and eventual death will impact their roles as mothers, grandmothers, daughters, sisters and wives.

Lives of suffering, strength and survival.

Shawnte’ Spriggs’s story is typical of many African-American women living with HIV whom I spoke to. Many suffered trauma and abuse as children. Like everyone, however, she has her own unique story.

“My family stories are not pretty,” said Spriggs, 45, who grew up in northeast Washington D.C., in a neighborhood with open-air drug markets, crime, and gang violence. “My mother had a very bad temper. If she had a bad day, or someone teed her off, or one of her boyfriends did something to her, I was abused pretty bad.”

Her father was around only intermittently. She later learned the reason for his disappearances: He was often in prison.

Looking for love and craving protection from her mother, she turned to her godbrother, a caring guardian whom she later married.

Three months into their marriage, beatings began. The first was in the middle of the night. She woke suddenly. Her ex-husband was still asleep but sat up as if he were awake and punched her in the face. They both laughed about it in the morning, as if it had been an accident.

The abuse continued.

Eventually Spriggs escaped the marriage. She moved to another state and created a rewarding life. She even found love again, and remarried. She changed careers. She also became an evangelist, traveling for religious conferences frequently.

In 2010, Spriggs accepted an invitation to speak at a women’s conference in Lynchburg, Va. The conference offered health screenings. Some of the women invited her to take an HIV test with them. Sure, why not? she thought, wanting to set an example for the young women attending.

The last thing she expected was to test positive.

Her initial reaction was that she was going to die. She researched to learn more about HIV and began to realize that many people in her life probably died of it even though it was being labeled as something else in the community. She was terrified, especially because she feared returning to the pain and trauma from her past.

“I was so afraid of going to a dark place, from my childhood. I know my triggers,” Spriggs said.

She took action, signing herself up for both inpatient and outpatient mental health care, which helped her with her healing process. She attended HIV support groups, where she was the only woman among gay men.

Spriggs counts herself fortunate. She knows that many others have fewer resources, more responsibilities, and a lack of accessible and culturally appropriate care.

The post How HIV Stigma Affects Black Women appeared first on MyMedicPlus.

Two transgender women are suing Florida government agencies for being denied gender-affirming health care under the state employee health plan’s exclusion for “gender reassignment or modification services or supplies.”

It’s the latest legal challenge to state health plans that deny coverage for gender-affirming procedures.

The Florida lawsuit, filed Monday, argues that the state’s exclusion of gender-affirming care violates Title VII of the Civil Rights Act and the U.S. Constitution’s equal protection clause. The plaintiffs, Jami Claire and Kathryn Lane, are state workers who were denied treatment for gender dysphoria. Claire is a scientist who has worked at the University of Florida for over three decades, and Lane is an attorney in the public defender’s office in Tallahassee.

“This was an intentional decision made by the [Florida] Department of Management Services to exclude this type of care, and we know that because there is already an exclusion for non-medically necessary care,” Simone Chriss, attorney at Southern Legal Counsel, told Rewire.News. “If what our plaintiffs were seeking was not medically necessary, it would just be denied for that reason, but it wasn’t. It was denied under the exclusion for gender-affirming care, which means that they recognize it is medically necessary but they choose not to cover it.”

The ACLU of Florida, Southern Legal Counsel, and pro bono attorney Eric Lindstrom filed the lawsuit against the Florida Department of Management Services, the Public Defender of the Second Judicial Circuit of Florida, and the University of Florida.

Claire said Florida’s exclusion of gender-affirming care has affected her financially and emotionally. She has had to pay out of pocket for many of the procedures she needs.

“When I had tried to access the medical care, the exclusion was there and I couldn’t access it and I had three suicide attempts,” she said. “Life wasn’t worth living at that point.”

Claire added, “I’ve spent thousands of dollars already and if this exclusion is not overturned and I get to the point where I retire, I will have to use approximately a third of my retirement money to pay for bottom surgery.”

Hormone replacement therapy, electrolysis, augmentation mammoplasty, orchiectomy, and facial feminization surgery were some of the procedures denied by the plaintiffs’ state plans due to the exclusion of gender-affirming care.

Transgender people face numerous barriers to health care access, including discrimination by health-care providers and economic barriers to accessing affordable care. According to the 2015 U.S. Trans Survey from the National Center for Transgender Equality, one-third of respondents who had seen a health-care provider in the past year had at least one negative experience related to being transgender. One in four respondents said they had a problem with their insurance in the past year related to being transgender, such as being denied gender-affirming care. Black, Native American, Latinx, and multiracial trans people were more likely to be uninsured than white trans people, according to the survey.

Twenty-two states and the District of Columbia have policies that prohibit health-care discrimination based on gender identity, according to the Pew Charitable Trusts’ Stateline. Twenty-one states have no policy for health-care coverage for trans people.

Billy Huff, a transgender man who worked at the University of Florida as the director of LGBTQ Affairs, said he was surprised when he found out about the state’s exclusion. He had only researched Aetna to find out if he had coverage.

“I was heartbroken,” he said. “I was at that point literally marking days off on my calendar until my surgery date and already had my consultation and paid for my down payment on the surgery out-of-pocket.”

There have been other lawsuits against exceptions for gender-affirming care in state plans. In 2018, Lambda Legal filed a lawsuit against the state of Alaska on behalf of Jennifer Fletcher, a state legislative librarian, because the state prohibited coverage for her transition-related care. The LGBTQ rights-focused organization, which does litigation and public policy work, said the denial of care violated Title VII of the Civil Rights Act. The case is still open.

Lambda Legal and the Transgender Legal Defense & Education Fund (TLDEF) filed a lawsuit in 2019 on behalf of current and former employees of the state of North Carolina who were denied transition-related care under the state employee health plan. In the complaint, Lambda Legal and TLDEF argue this violates the equal protection clause, the nondiscrimination clause of Affordable Care Act, and Title IX, since the defendants include state colleges and universities.

Lambda Legal attorney Taylor Brown told Rewire.News that defense of state plan exclusions vary from arguing that the procedures aren’t medically necessary and qualify as “cosmetic” to claiming that refusing to cover gender dysphoria is not discriminatory.

“We’re doing the research about these exclusions and looking into state plans and looking into public record requests on when these decisions were made and debated, and they often rely on outdated science or just pure speculation and misinformation,” Brown said.

“Every major medical association in the United States recognizes the medical necessity of transition-related care for improving the physical and mental health of transgender people and has called for health insurance coverage for treatment of gender dysphoria,” according to the American Medical Association. The American Medical Association also cites studies showing that health coverage that includes gender-affirming care is cost-effective compared to the costs associated with untreated gender dysphoria.

Brown said the claim that refusing treatment for gender dysphoria isn’t sex discrimination doesn’t hold legal water.

“We argue that it’s sex discrimination because these procedures we call transition-related health care—they’re often procedures available to cisgender people. So they’ll say that this is not sex discrimination. It’s condition discrimination. We’re not treating gender dysphoria. But we understand that the only people who have gender dysphoria are transgender people,” she said.

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The co-conveners of the Global HIV Prevention Coalition, UNAIDS and the United Nations Population Fund, have launched a new report on progress made in reducing new HIV infections across 28 countries that have been particularly affected by HIV. The report was launched at the High-Level Meeting of the Global HIV Prevention Coalition, held on 12 November on the sidelines of the Nairobi Summit on ICPD25.

Together, the 28 countries account for 75% of all new HIV infections globally—1.2 million of the 1.7 million new HIV infections among adults in 2018. The report, Implementation of the HIV prevention 2020 road map, shows that among the coalition countries new HIV infections among adults declined on average by 17% since 2010, slightly higher than the global decline of 13%, but far short of the 60% decline needed in 2018 to meet global HIV prevention targets.

“We are nearly 40 years into the HIV epidemic and it is unacceptable that governments and leadership are still shying away from sensitive issues,” said Winnie Byanyima, Executive Director of UNAIDS. “Investments in HIV prevention do not match the needs of our people; in some countries, even the basic commodities like condoms are not available, accessible or affordable in rural areas, for young people or key populations.”  

The report shows that some countries have made significant progress, with 12 countries reducing new adult HIV infections by 26% or more since 2010. They include countries with major epidemics, such as South Africa, with a 39% decline, the Democratic Republic of the Congo, with a 37% decline, Uganda, with a 36% decline, and Zimbabwe, with a 28% decline.

Some coalition countries, however, experienced concerning increases in new adult HIV infections, including Nigeria, where new adult HIV infections increased by 8%, and Pakistan, which is experiencing a rapidly growing HIV epidemic among key populations, where new adult HIV infections rose by a staggering 56%. On average, new HIV infections in non-coalition countries remained relatively stable between 2010 and 2018.

The report shows that while there has been some progress in developing programmes for adolescent girls and young women, the Global HIV Prevention Coalition estimates that in 2018 only 34% of the areas with high HIV prevalence had dedicated comprehensive HIV prevention programmes for women and girls—far short of the global target of reaching 90% of adolescent girls and women with these services by 2020. During the meeting, Nyasha Sithole, from the Athena Network, made a strong call for investment and engagement of adolescent girls and young women in HIV prevention and sexual and reproductive health programming.

The Global HIV Prevention Coalition was established in 2017 to galvanize greater commitment and investment in HIV prevention in order to achieve the 2020 prevention target of reducing new HIV infections among adults by 75% by 2020 (against the 2010 baseline). Its added value is clearly visible in a number of focus countries and beyond. Countries confirm that it has promoted a more systematic and structured approach to HIV prevention programming and built momentum in most of the 28 countries; however, much more needs to be done to meet global commitments.

“The coalition has been working as an important platform for countries to share their progress and experiences in HIV prevention, providing a very good opportunity for us to take joint actions to reduce new infections and curb the spread of the disease. This is the key to realize the Sustainable Development Goal target on ending AIDS by 2030,” said Yu Xuejun, Vice-Minister of Health of China and current Chair of the UNAIDS Programme Coordinating Board.

To accelerate progress in stopping new HIV infections, momentum urgently needs to be stepped up by increasing investment, addressing HIV-related stigma and discrimination, addressing the legal, policy and structural barriers to HIV prevention, especially for adolescent girls and young women, key populations and their sexual partners, and taking measures to expand community-based responses.

“I am convinced that community action is the key not only to HIV prevention, but prevention of all ill health. It is for this reason that we have made primary health care the focus of universal health coverage in Kenya,” said Sicily Kariuki, Cabinet Secretary of the Ministry of Health, Kenya.

By taking these critical steps and increasing efforts to address persistent gaps in programme coverage and ensuring that services and community programmes are available to everyone in need, significant progress can be made towards ending AIDS.

During the meeting, which was chaired by the Cabinet Secretary of the Ministry of Health of Kenya and the Minister of Health of Zambia, representatives of the coalition countries made bold commitments and pledges to scale up HIV prevention in their respective countries.

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Abbott, an American medical devices and health care company, recently announced their discovery of a new strain of HIV, which is keeping medical researchers one step ahead of the virus. Researchers published their findings in the Journal of Acquired Immune Deficiency Syndrome explaining that the subtype of the virus found was called HIV-1 Group M, subtype L, marking the first time a mutation in Group M has been discovered since 2000.

The finding is especially notable because the Group M viruses are those that were responsible for the global AIDS crisis. Group M virus can be traced to Democratic Republic of Congo (DRC) in Sub-Saharan Africa and the sample, called Specimen CG-0018a-01, was collected in 2001 as part of an HIV prevention of mother to child transmission (PMTCT) study. By discovering the mutation immediately, researchers and medical facilities are able to contain and study the virus, as well as develop treatments and anticipate and find new mutations of the virus.

“Since the beginning of the global AIDS pandemic, 75 million people have been infected with HIV and 37.9 million people today are living with the virus.” Says a press release from Abbot. Great strides in HIV research have been made in the past decades, which have led to effective treatments of those infected, HIV preventative medicines for high risk patients, and ever more strides to find an ultimate cure for the disease. Abbott’s discovery further highlights the great strides being made in front end research of the virus, which allows medical communities to understand the genome of the virus and how it could mutate in the future.

The mutation was discovered using next-generation sequencing technology, which allows researchers “to build an entire genome at higher speeds and lower costs.” Abbott used this new technology and coupled it with “new techniques to help narrow in on the virus portion of the sample to fully sequence and complete the genome.”

“‘Identifying new viruses such as this one is like searching for a needle in a haystack,’ said Mary Rodgers, Ph.D., a principal scientist and head of the Global Viral Surveillance Program, Diagnostics, Abbott, and one of the study authors. ‘By advancing our techniques and using next generation sequencing technology, we are pulling the needle out with a magnet.’” As stated by Abbott.

The findings also highlight how interconnected HIV researchers have become globally and Abbott has plans to share their findings and the new strain with other researchers. As on of the study’s authors, Carole McArthur, Ph.D., M.D., professor in the departments of oral and craniofacial sciences, University of Missouri — Kansas City, explains, “In an increasingly connected world, we can no longer think of viruses being contained to one location.” Explaining, “This discovery reminds us that to end the HIV pandemic, we must continue to outthink this continuously changing virus and use the latest advancements in technology and resources to monitor its evolution.”

Luckily, HIV is not the death sentence it was just 40-years ago and stigma around the disease has waned. With research teams staying vigilant and interconnected there is hope that HIV will never again ravage families as communities, and indeed, that a cure may be in sight.

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When we celebrate World AIDS Day less than a month from now, Americans will have something to celebrate. Innovative treatments have transformed a disease that a few decades ago would have been a death sentence into a diagnosis that, with support, is manageable. 

While lawmakers should acknowledge this progress, they should not consider this crisis solved. People living with HIV and AIDS often live on the edge of poverty and homelessness. For these individuals, access to local, state, and federal support will determine whether or not they survive.   

Keeping individuals with HIV and AIDS alive not only requires access to quality health care, it requires that individuals are stably housed. I have been working with people living with HIV and AIDS for more than two decades. I know that without the Housing Opportunities for People with AIDS (HOPWA) program, U.S. efforts to address this disease would not have been as successful.

This program remains as important as it was when it was implemented in 1990, which is why federal lawmakers must reject potential cuts to it. 

The Senate has approved just $330 million for HOPWA for fiscal year 2020, a figure that represents a 21 percent cut from the FY 2019 enacted level of $393 million. The Senate’s allocation is $100 million lower than what the U.S. House of Representatives approved this summer, and it would reduce funding back to levels not seen in a decade.

These cuts would come at a moment when social services agencies like CAMBA are trying to serve more people. 

The 1.1 million Americans currently diagnosed with HIV and AIDS are living longer, and the country continues to see thousands of new cases each year. According to the Centers for Disease Control (CDC) about 40,000 Americans receive an HIV diagnosis every year. Demand for HOPWA is growing.

While it might be easy for some federal lawmakers to dismiss this issue as one that only affects urban centers like New York City or Los Angeles, current data reveal that assumption is false. According to the CDC, HIV diagnoses are not evenly distributed across the country. In fact, of the 38,739 new HIV diagnoses in the United States in 2017, more than half (19,968) were made in the southern part of the United States.

No matter where these men and women live, they are more likely than their fellow Americans to face poverty and housing instability. 

According to the National Alliance to End Homelessness, individuals living with HIV and AIDS are three to six times more likely than members of the general population to be homeless. Or, as the Congressional Research Service found, studies of the relationship between HIV and homelessness have found the disease’s prevalence among homeless populations that range from two percent to 22 percent. That correlation translates into to the fact that, according to U.S. Department of Housing and Urban Development data, on any given night in the United States there are 10,000 individuals living with HIV and AIDS who are homeless. 

Even if people living with HIV and AIDS have a roof over their head, according to the National Low-Income Housing Coalition, it is estimated that as many as half will need housing assistance at some point during their illness.

The HOPWA program is a homelessness prevention program that provides housing assistance and supportive services for low income people living with HIV/AIDS and their families. It is the only federal program dedicated to this mission. According to data from fiscal year 2015, about 10 percent of HOPWA beneficiaries once served the United States in uniform.

HOPWA also provides support to communities across the country that are developing housing strategies to prevent people living with HIV and AIDS from becoming homeless or unstably housed. The program helps my organization provide case management and housing assistance to approximately 100 New Yorkers annually. This assistance allows these individuals to stay out of our shelter system and off the streets. For them, that is the difference between health and death.

Sharon R. Browne is executive vice president of CAMBA for Health, Housing Services and Development. CAMBA is a New York-based non-profit that provides services that connect people with opportunities to enhance their quality of life.

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