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On World AIDS Day, HIV Activists Say There's More Work to Be Done

World AIDS Day balloons rising
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While there have been incredible advances in treatment, care, and services, there is still so much to be done to end the HIV epidemic. 

The Biden administration announced today, during the 33rd annual observance of World AIDS Day, its recommitment to end the HIV epidemic by 2030, and renewed the U.S government's bipartisan and decades-long commitment to "ending the HIV epidemic at home and around the world."

"In the face of the COVID-19 pandemic that has impacted every aspect of the HIV/AIDS response, from prevention to treatment to research, the United States is redoubling efforts to confront the HIV/AIDS epidemic and achieve equitable access to HIV prevention, care, and treatment in every community -- particularly for communities of color, adolescent girls and young women, and the LGBTQI+ community," the announcement states.

The news comes weeks after South African scientists reported another variant of COVID called Omicron, which has increased cases in the country -- evidence shows that though reported first in South Africa, the Omicron variant was found to have been in Europe days before. But South Africa is no stranger to leading efforts against epidemics and pandemics. It was one of the country's most prominent figures, after all, who helped mobilize efforts around HIV awareness.

Winter was approaching South Africa in June 1999 when Nelson Mandela stepped down from his historic post as the country's first Black head of state. Giving a personal declaration, Mandela said:

Let us give publicity to HIV/AIDS and not hide it, because the only way to make it appear like a normal illness like TB, like cancer, is always to come out and say somebody has died because of HIV/AIDS, and people will stop regarding it as something extraordinary.

Mandela, a towering figure for human rights, founded the Nelson Mandela Foundation to include a focus on HIV research that same year.

As of 2020, 37.7 million people around the world are living with HIV, according to UNAIDS, with another estimated 680,000 dying from HIV-related illnesses last year alone.

Each year on December 1, since its founding in 1988, World AIDS Day is dedicated to raising awareness of the AIDS pandemic caused by the spread of HIV. It's also dedicated to mourning those who have died of the disease.

Mandela is neither the first nor the last leader to fight the epidemic and the stigma that fuels it.

"World AIDS Day is an opportunity for us to remember those we have lost in the epidemic and celebrate the lives of those still living and thriving with HIV," Dr. Allison Mathews tells me.

Mathews has been a force in dedicating her work to HIV and AIDS. She serves as executive director and research fellow in faith and health at the Gilead COMPASS Faith Coordinating Center at Wake Forest University. She specializes in integrating technology, social marketing, community engagement, and social science to examine the intersections of race, class, gender, sexuality, and religiosity on HIV-related stigma and to innovate clinical research engagement and access to health care for underserved populations. Mathews has spoken about HIV and COVID-19 on both national and international platforms, including TEDxCaryWomen, and cofounded December 14 as HIV Cure Research Day, alongside her colleague Kimberly Knight, to raise awareness about HIV cure research and encourage community involvement in ending the HIV epidemic.

"As a sociologist, I have always been concerned with the consequences we experience as a result of inequality and oppression against racial and ethnic minorities, women, and LGBTQ people," she says. "The HIV epidemic disproportionately affects the most marginalized in our communities, largely due to societal inequalities that exist. I have experienced my fair share of discrimination and refuse to go down without a fight. I am fighting for those, particularly people living with HIV, who have been relegated to the margins."

Dr. Christopher Irving Mathews, the capacity building and technical assistance manager at Emory Centers for Public Health Training and Technical Assistance, says that World AIDS Day used to be a day of mourning and a day he would spend reflecting on the deaths of many of his friends who have lost their lives to HIV.

"I would start [World AIDS Day] having a good long cry in the shower, and then I would go to some event that would only trigger a flood of memories that I was working diligently to avoid," he says. "But now it has become a day of celebration. A day I spend with my friends. Friends who are not just surviving their diagnosis but thriving. They're living their best lives. Their days are filled with good times and intimate moments."

Christopher Mathews says he uses those treasured memories as ammo to continue to fight.

"I fight for the day when my friends will wake up and no longer even have to think of their diagnosis. It is the reason I get up every morning, pull myself together, and join my colleagues at the Emory COMPASS Coordinating Center, where we continue to support the work of eradicating HIV in the South."

The theme of this year's World AIDS Day is "Ending the HIV Epidemic: Equitable Access, Everyone's Voice." Here's why equity is key: Black Americans and LGBTQ+ individuals, particularly in the South, experience the highest number of cases of HIV due to limited access to support and prevention resources.

According to Wake Forest University School of Divinity, HIV is a social justice and racial justice issue. Black Americans account for more HIV diagnoses (42 percent of the total) than any other racial and ethnic group in the U.S. despite being only 13 percent of the population.

These vulnerabilities are systemic and due to structural barriers which are rooted in "racist and anti-Black policies and practices," according to Wake Forest University School of Divinity -- much the same as limited resources within health care, education, employment, and housing. Black gay men, Black cisgender women, and transgender women of color are the most affected by HIV.

HIV is no longer a deadly virus, but should be considered a chronic health condition, says De'Ashia Lee, the COMPASS program manager for the Southern AIDS Coalition. Lee makes strategic investments into community organizations that are committed to ending HIV-related stigma in the Deep South.

"It is a chronic health condition that is treatable and manageable," Lee tells me. "There have been incredible social and medical advances to address the HIV epidemic in the past 40 years, but it is important to acknowledge that we still have a lot of work to do regarding HIV-related stigma, access to equitable health care, and high-quality systems of HIV prevention, especially in the Southern United States."

Lee says that she is continuing a fight that was initiated 40 years ago and bringing attention to HIV that significantly impacts marginalized communities.

"There is still a need for resources, education, advocacy, research, and funding to continue the fight to end the HIV epidemic in our communities."

The stigma around HIV continues to be one of the most dominant social issues. According to GLAAD's 2021 State of HIV Stigma report, there remains an unfounded fear about people living with HIV, even though those receiving proper medical treatment cannot transmit it. The study found that 53 percent of non-LGBTQ+ people surveyed noted that they would be uncomfortable interacting with a medical professional who has HIV, 44 percent would feel uncomfortable around a hairstylist or barber living with HIV, while another 35 percent would be uncomfortable with a teacher living with HIV.

Advocates are doing all they can to remind all Americans that HIV is a chronic health condition, not a death sentence. It can be prevented, tested for, and treated like any chronic disease such as diabetes, and people living with HIV and on treatment can be healthy, have children, and not pass on the virus (Undetectable = Untransmittable). In most cases, HIV treatment even means just taking one pill a day.

Another issue the Faith Coordinating Center at Wake Forest School of Divinity notes is that faith-based HIV stigma hurts, and it helps spread HIV. More than 10,000 U.S. congregations have members living with HIV, which makes it vital for faith communities to take leadership in addressing HIV stigma. Shaming people living with HIV or for being on medication to prevent HIV stops people from seeking the care they need and lets undiagnosed people pass on the virus.

Allison Mathews says she wants community members to know that the HIV epidemic is not over and that we still need to fight for equitable access to prevention, treatment, and eventually cure therapies.

"I want people to know that their voices matter in advocating for access to resources to end the HIV epidemic and that all issues, including those related to the environment, transportation, housing, food, education, criminal justice, and employment have an impact on our health and wellbeing," she tells me.

"Together we can push our policy makers, scientists, and institutions to be better stewards of our health."

Lee states that the future of HIV activism is through social media and online platforms, where outreach is much greater "because your words are not limited to a particular room, locale, country, or even language."

"There are often conversations happening online that many people would not have been a part of because they are not in those rooms or at those tables," Lee says. "Online, all voices can be equal, and you do not have to pass the mic because everyone has a mic."

Christopher Mathews says he doesn't want the future of HIV activism to look like anything. "I hope, pray, and believe that there will be no work in the future," he said. "I hope there will only be tales of how we overcame."

Lee says she will observe the day by participating in the Ending the Epidemics SC's Statewide observance of World AIDS Day, in which there will be a series of in-person and online events that promote HIV self-testing, PrEP, and safer sex practices.

Allison Mathews tells me the Gilead COMPASS Faith Coordinating Center at Wake Forest University's School of Divinity is planning numerous activities to commemorate World AIDS Day.

"We hosted a worship service dedicated to remembering those we have lost to complications with AIDS and hope and healing of our faith communities to address HIV stigma moving forward," she said.

"We are also celebrating 14 days of HIV awareness that starts with World AIDS Day (12/1) and ends on HIV Cure Research Day (12/14), which is a day I cofounded with Kimberly Knight to encourage the public to learn more about HIV cure clinical trials and advocating for health equity as we develop new HIV therapies. Our PI, Dr. Shonda Jones, will be speaking on a panel entitled 'The Impact of HIV/AIDS in the Black Community' for the National AIDS Memorial day of events."

Christopher Irving Lee says he will spend the day by having dinner with a few of his close friends while recounting stories of those who "brought joy to our lives but are no longer here."

"Those who we loved and lost, but who we will never be forgotten. Also, planning new memories with those who live on."

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