Why Faith Communities Are an Organic Part of HIV/AIDS Care

IN 1985, WHEN Jesse Milan Jr. was in his late 20s, no one from his Philadelphia church attended his partner’s funeral. Not because they refused, but because Milan didn’t invite them. Doing so would have required him to say what he felt uncomfortable sharing: He loved a man who had HIV. He is a man who has HIV.

“This is never going to happen to me again,” Milan vowed to himself at the funeral, regarding the loneliness he felt because he didn’t draw close his church family at one of the most painful moments of his life.

Milan is now the president and CEO of AIDS United, an organization fighting the HIV epidemic in the U.S. He is adamant that no one in the HIV community be isolated from the love and support they need. “People living with HIV,” said Milan, “have a longing to belong. A longing to be cared for and a longing to not be silent or secret.”

A lifelong Episcopalian, Milan grew up in a congregation in the Diocese of Kansas, following the example of his mother and father in serving their spiritual home and, in times of need, allowing their siblings in Christ to serve them. Milan kept this mutuality in mind when he enrolled at Princeton University and, struggling to transition from public school and homesick for his church, joined the Episcopal Church at Princeton. It was, Milan told Sojourners, “an anchor, a port to tap into on a regular basis whenever I needed it.”

Helping communities live

FOR MANY PEOPLE today, the closest we get to understanding the impact of HIV/AIDS in the 1980s and early ’90s is through stage and screen portrayals such as Pose, Angels in America, and Rent. For others, the memories and losses of that time are vivid and unforgettable.

For instance, Jesse Peel, a gay psychiatrist and community organizer, documented in his journals the avoidance and terror of HIV that overtook his home city, Atlanta, and the nation. As many people rapidly contracted and died of the disease, doctors struggled to understand what was happening and many nurses refused to bring meals into the hospital rooms of the stricken, Peel wrote in documents he donated to a collection at Emory University. By 1994, AIDS was the leading cause of death for Americans age 25 to 44. It killed more than 350,000 people in the country between 1981 and 1995.

“I think the experience of people who are of a certain age will always be colored by our experience of the death and the dying,” said Milan. “Today, I sense that [younger] people’s commitment to HIV/AIDS work is more about the rights and the inequalities that are manifested in HIV and AIDS. They have a broad lens about where human rights need to advance, and that broad lens includes the trans community and all others.”

In the early years of the epidemic, many pastors and religious people publicly denounced and turned their backs on HIV-positive people. Others embraced those who were suffering, opening care programs and advocating for government funding. Reminding the nation’s leaders of their responsibility to the HIV community is a job that’s been done by many Christians and is a significant part of AIDS United’s history and present work.

Although AIDS United is headquartered in Washington, D.C., the organization is not content with just helping residents of large urban areas while ignoring the needs of rural communities. From 2010 to 2016, HIV diagnoses decreased by 21 percent, but the decline wasn’t equally distributed throughout the country and across races. In 2017, the South had more than half of the nation’s recent HIV diagnoses. In 2018, even though African Americans were 13 percent of the country’s population, they accounted for 42 percent of new HIV diagnoses in the U.S. The spread of the illness nationwide is in part fueled by the epidemic of opioid abuse that is linked to increased use of injected drugs. Unlike major cities, many rural locations lack extensive experience with, and means to combat, the illness. The challenges they face are immense.

This is why Milan and his team created the Southern HIV Impact Fund, which announced its second round of grants early this year, totaling nearly $2.9 million for 43 health organizations in the South—groups such as the East Texas Cares Resource Center in Tyler, Texas, the Southwest Louisiana Area Health Education Center, in Lake Charles, La., and the Affinity Health Center in Rock Hill, S.C. In addition, AIDS United created a hurricane relief fund for HIV-positive people and provided grants to transgender leaders to empower them to help prevent the spread of HIV and stand alongside the HIV-positive people in their communities.

Nearly 40,000 people in the U.S. were diagnosed with HIV in 2018, and nearly 13,000 people with AIDS in the U.S. die annually, according to 2016 estimates. Early treatment will prevent or delay HIV’s evolution to AIDS, but access to health care in this country is tenuous for many, with the future up in the air during this 2020 presidential race. The biotech company Gilead Sciences started the new decade by making its drugs to prevent and combat HIV more expensive. So it’s not a surprise that only between 50 and 60 percent of the 1.1 million people in the U.S. living with HIV are receiving consistent medical care to suppress the virus.

“Medically, financially, and socially, HIV changes your life forever,” wrote Milan in an article titled “Aging Successfully with HIV/AIDS,” published by the Black AIDS Institute, of which he is chair emeritus. “I must never forget to take my medications.”

In the ’80s and ’90s, many HIV-positive people didn’t think that aging and thriving—one day reaching their 50s, their 60s, and beyond—was part of their future. Now it’s a possibility, but who will have the resources to achieve it: not just the money to afford medicine, but also friendship, a group of people who care?

This is where, Milan told Sojourners, faith communities can do a lot of good. “If your faith community allows you to be who you are and embraces you, that community can buoy you through almost anything.”

The power of stories and allies

IN MAY 2016, Milan was elected to a four-year term on the standing committee of the Episcopal Diocese of Maryland. In that role, he helps advise the bishop of Maryland on various issues. “What’s really wonderful for me,” Milan noted, “is that I’m on the standing committee for the first African American bishop in the history of the diocese.” Previously, Milan held leadership roles on the first HIV/AIDS commission for the Episcopal Diocese of Pennsylvania and served as president of the board of the National Episcopal AIDS Coalition. In these denominational roles he brings the wisdom of all his experiences, from his professional start as a labor attorney in Philadelphia to his leadership of AIDS United.

And despite AIDS United’s domestic focus, his service to the HIV community has not been limited to the United States. On behalf of the U.S. State Department, he has traveled to seven African nations, including South Africa, where one of his most memorable experiences occurred. “I got to give the sermon on Sunday morning at St. George’s Cathedral in Cape Town,” Milan said, his voice filling with awe, “and you know whose church St. George’s Cathedral is? Bishop Tutu’s.

“And I got to climb the stairs to the pulpit where not only Bishop Tutu spoke but so did Rev. Martin Luther King Jr. What I will never forget is that when the service was over and I was shaking hands with everyone, a white Afrikaner wearing cowboy boots came up and shook my hand and said, ‘That was one of the best sermons I’ve ever heard.’” For a black man—a gay, HIV-positive, African American man whose parents were engaged in the U.S. civil rights movement—it was a profound moment.

That sort of exchange—a sharing of stories and values—is something everyday people can do to help defeat the epidemic, said Milan. U.S. governmental aid to fight HIV has often been directed to other countries. The Emergency Plan for AIDS Relief created by George W. Bush’s administration allotted $15 billion to developing countries. That led journalist Gwen Ifill to ask then-Vice President Dick Cheney and the 2004 Democratic nominee for vice president John Edwards what they would do about AIDS in the U.S. Edwards spoke about AIDS in Africa. Cheney said he didn’t know about the statistics of black women affected by the disease in the U.S. It may be safe to say, 16 years later, that tackling HIV in our own country wasn’t either of their top priorities. Will the same prove to be true about the Trump administration and its opponents in the 2020 election?

“We hear so often from legislative offices,” said Milan, “that the most powerful thing they hear from constituents who are doing advocacy are personal stories of impact ... of what’s needed, or the impact of what’s not being done. People living with HIV are learning to tell our stories and tell them in ways that can be heard by Democrats and Republicans.

“But what we need more of are our allies and family members to tell their share of the story as well,” Milan continued. “How impactful would it be for a legislator to also hear from our mothers, our sisters, our brothers, our uncles, not just those who have lost someone to AIDS but someone who’s concerned for their family members with HIV? The parent of a 13-year-old who wants sexual health education in their schools, the brother of a gay man who wants his sibling to have access to PrEP. Those will be powerful stories, just as our white and Jewish and Catholic allies helped move the civil rights movement forward.”

Sustained in hope

THE FRIENDS AND loved ones of Milan and his husband, William Roberts, certainly have a story to tell. They have helped the couple persist through their lows and celebrated their triumphs. In 2008, on the 20th anniversary of Milan and Roberts’ relationship, the same year that the California Supreme Court decided to allow same-sex marriages in the state, they were married by Oakland Mayor Ron Dellums. News of Milan and Roberts’ big day was included in the weddings section of The New York Times.

“My most proud accomplishment,” said Milan, “is that my husband and I have been together for 31 years, because we met during the [peak era of] the HIV epidemic. The HIV epidemic is an organic part of who we are, and the faith community has made it possible for us to transcend the sadness, to find hope and healing and happiness.”