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AIDS: Harley McMillen, An early champion in fight against HIV
by Patrick Duvall
2011-10-12

This article shared 4244 times since Wed Oct 12, 2011
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"People back then were scared. You could see it in their questions and their eyes," said Harley McMillen, former executive director of Howard Brown Health Center ( then known as Howard Brown Memorial Clinic ) of the beginning of the AIDS crisis. "I don't think people are scared now."

During the early fear-stricken days of the AIDS epidemic, Harley McMillen stood out as a voice of reason. His strong Midwestern values and commitment to community service led him to become a focal point for the coordinated response to AIDS in Chicago, which included holding discussion forums on the disease, starting an AIDS hotline, founding the AIDS Action Project to provide direct outreach and social services, and helping to start the first Brown Elephant thrift store to fund their efforts, all while managing a clinic with a staff of over 400 employees and volunteers.

Sarah Puccia, former Director of the AIDS Action Project, commented that " [ Harley ] saw the big picture of any one decision and how it might reverberate in different ways, and I think he provided, really, the leadership style that allowed a lot of people to do some incredible work."

"Harley had the skills that were needed at the time," said George Steffan, a physician's assistant at the clinic from 1976-1984. "He was very pointed and direct. He wasn't afraid to make decisions … and he was reasonably calm. You had to have somebody that would sit down, look at the problem, and get some analysts in to deal with [ it ] , get people to talk together."

Most of McMillen's adult life has been spent helping communities in need. Fresh out of graduate school in 1971, he worked as a field representative at the State of Missouri's Office of Aging. He then served as Program Development Director of a $2.4 million Department of Health and Human Services study on integrating social services to meal sites for the elderly in Florida. Immediately preceding his start at the clinic in 1980, McMillen worked for two years with the National Congress of Parents and Teachers, helping them extend their brand to urban environments.

More recently, McMillen moved to a small town in Wisconsin to battle with Stage 4 non-Hodgkin's lymphoma. A tornado destroyed the town, and he used his skills as a community organizer to help rebuild, even winning a national forestry award for his work.

His cancer has gone into remission, and McMillen now helps in local politics. In November, he will celebrate his 69th birthday. Every day he takes his lunch at a meal site for senior citizens, and lives a quiet, peaceful life. While affable when describing the company he finds there, his voice becomes soft and deeply contemplative when he reflects on his time at the clinic. " [ People ] are dying at the ages of 80 and 90 [ here ] , like you normally should be, you know? They have no idea what it's like to have dealt with hundreds and hundreds of deaths before you were the age of 40."

After having his accomplishments during the beginning of the AIDS crisis listed, McMillen is quiet for a moment, then responds. "When I think about it, I helped save lives, and that gives me a degree of satisfaction."

McMillen clearly recalls the infamous day of June 5, 1981 when the Medical Director of Howard Brown, Dr. Raymond DiPhilips, came into his office and laid the first report on deaths down on his desk. DiPhillips said, "Something out there is killing gay men, and we don't know what it is. We've got to do something." This marked the beginning of a struggle that would consume McMillen's life for the next three years.

McMillen had already helped Howard Brown Memorial Clinic transition from being a small, volunteer-based operation to a more structured medical facility with rigidly defined administrative processes. He began to prepare the clinic for its next role as the main source of education and diagnosis of this new deadly disease.

Within months of that initial report, Howard Brown led their first community meeting about the epidemic at Illinois Masonic Hospital. McMillen describes the experience as tense, due to the inconclusive nature of the data they had at the time. Officially there was no known cause of the disease, and certainly no treatment that was remotely effective while people were dying and many more were getting sick.

"The gay community would come with all their questions, and we would present the facts of what we [ knew ] ," McMillen recounts. "Unfortunately, most of the questions they asked we [ didn't ] know [ the answers to ] , like, 'Well, what can I not do?' or 'Is all sex okay and not anal sex?' You know, it was very difficult, because you went away feeling very badly because you couldn't give what you wanted to."

As more people got sick and more lost their lives, an almost palpable anxiety permeated the gay community. "In the beginning there was great fear," McMillen says. "They didn't know about themselves, they didn't know about their friends, they didn't want to think about it. It was like, you know, out of sight, out of mind. There was a great fear, which was masquerading as the fact that there was no problem. And nobody knew what to do." McMillen was determined to find answers and solutions where there were none, and he did.

One of the first reported cases of AIDS in Chicago was one of McMillen's close friends, Glynn "Sudsy" Sudbery.

" [ I went ] to visit [ Glen ] at Presbyterian St. Luke's and [ had ] to completely go into isolation," McMillen recounts. "I had to follow complete isolation procedures—the mask, gloves, the yellow outfit I had to put over myself—because the hospital did not know how to protect me or how to keep Sudsy alive.

"It still brings tears to my eyes when I envision that moment, trying to comfort him and show strength at the same time. He and I had been friends for many years, and we were in the leather community together. You know, it was a scene that is very vivid, distinct in my mind, because there I was trying to give him all the strength and comfort that I could, but at the same time needed all the strength and comfort for myself that I knew that I couldn't get from him."

In 1982, McMillen hired more staff and took on more volunteers to help support the changes in clientele at the clinic. Howard Brown saw a marked drop-off in standard STD screenings, and began focusing their work on case management for people with AIDS.

"There became two classes of patients: non-AIDS patients and AIDS patients," he said. "If you were an AIDS patient, you had a different pathway [ at the clinic ] . More testing, more counseling, more in-depth activities in their lives and things like that. We only had one or two people who were really qualified to do that. We really had to find resources to bring in, too, because people would come in and want an HIV test when they were available. They had to go through a psychological profile, and then, when the test came back, you had to meet a psychologist to see if you were equipped to handle the results."

During this period, McMillen was in frequent contact with the city of Chicago to seek assistance and to keep them informed on the progression of the disease.

" [ Chicago ] didn't have anything coordinated as a health response until we started piecing it together and getting representatives of the groups of people that were being affected meeting with department of Health officials," he said. "They were very resistant in the beginning … the city of Chicago was always continually trying to play down the extent of the epidemic, and we were at the other end of the football field yelling, 'No, no, no! It's big, it's big! It's coming! It's here!'"

It was not until federal money was granted to Howard Brown that the city of Chicago began to devote any real funds to fighting the disease.

The clinic's main source of funding at the time came from Chicago's bar community. Nearly every night, McMillen was at a fundraiser at one bar or another. "We did drag shows, [ I ] had pies tossed in my face at Big Red's ( a since-closed bar ) , anything that was possible that people would give us money for," said McMillen. "It was never enough, but people were generous."

McMillen knew that the only hope of getting funding was from the federal government. He structured the clinic so that it would be attractive to grant committees, instructing his accountant to develop an indirect cost stream and ensuring the administrative processes of Howard Brown were sharply defined. The federal money, however, was slow to arrive.

The tent pole of Howard Brown's efforts, beyond working with the patients, was the AIDS Action Project: a multifaceted program that included connecting the clinic's efforts with the medical community in Chicago, offering educational resources to those afraid of contracting the disease, providing social services to people with AIDS, and setting up an AIDS hotline.

When the hotline opened, phones rang constantly from panicked people wondering whether they would contract the disease from being near a homosexual, or frightened gay men asking about symptoms they had recently noticed.

"Back then, being a gay person was bad enough, but being a gay person with a deadly disease was just beyond comprehension for most of the general population," McMillen says.

McMillen hired Sarah Puccia ( nee Gross ) to run the AIDS Action Project. Together they built the hotline from scratch, selecting a passionate volunteer base, taking stock of the needs in the community, and developing appropriate responses that would provide the most information with the least amount of sensationalism. Howard Brown partnered with Gay Horizons as part of the project to provide social services to people with AIDS.

One of the pamphlets McMillen worked on was for the partners of people with AIDS. It included information on planning a memorial, how to manage an estate when the government refused to recognize your relationship, and how to protect against infection. With a nearly complete lack of government response, Howard Brown was one of the only sources of education and support in Chicago for those affected by the disease, and McMillen created that infrastructure using the resources of the clinic, his business contacts, and the sheer force of his personality. He refused to give up.

In 1983, federal funding finally arrived from the National Institutes of Health in the form of the Multicenter AIDS Cohort Study. McMillen again braced for another major change at the clinic. Howard Brown was the only LGBT-focused facility to receive funds, largely due to the administrative processes McMillen put in place. The clinic was audited, but their financials held strong. Participants in the study began enrolling at Howard Brown, and soon, even the city of Chicago began offering educational materials and funds to the AIDS hotline.

McMillen never lost sight of the hard work of people working under him. "A lot of time and effort was spent trying to help lift the spirits of my staff and the people that were working in this area," McMillen said. " [ AIDS ] was like a death sentence. Funerals were scheduled so they weren't conflicting on days, you know, all kinds of things like logistics, just the process of having a funeral became a major operation."

Even when faced with such tremendous pressure, McMillen still remained optimistic. "Maybe we [ didn't ] know the answers, but I think we were doing something right … we knew what we had to do, we knew what we needed to provide to our community, and we were going to do it, come hell or high water!"

George Steffan speaks fondly of his time working with McMillen at the clinic: "There were very strong personalities. I think a lot of people in his position could have been overrun by the other personalities. … [ Harley ] was able to … not fly off the handle or go crazy or yell and scream. [ He would ] just calmly talk, 'Well this is what we have to do, this is the decision.' I think it was a good deal, and he was good at handling employees."

In the end, it was those strong personalities that led McMillen to leave Howard Brown in 1984. A conflict over leadership of the clinic pushed McMillen out, and his position was held by a number of different people in subsequent years.

As executive director of Howard Brown Memorial Clinic, McMillen's commitment to the health and education of Chicago's LGBT population never wavered, even when approached by people at bars during his rare leisure time. "You can't ignore it. It's in our body, the body being the community."

During one of the darkest times in recent LGBT history, when gay men and women struggled to find any source of hope, McMillen was concerned with the more personal effects of the AIDS crisis. At a speech he gave after the Pride Parade in 1983, McMillen offered a piece of advice, which still holds true today: "No matter what happens, what we cannot do is lose the ability to love each other."


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