AIDS: a retrospective
The story of AIDS in Boulder County has much in common with the story of AIDS in the rest of the world. It's a story of fear, desolation, illness, suffering, death. But it's also a story of compassion, of hope amid hopelessness, of unprecedented cooperation and courageous caring.
Far too many of those who experienced this history firsthand—those who arguably have the most to teach us—are dead. They were taken in the prime of their lives by a virus that caught the world unprepared. But some who helped shape our community's response to HIV/AIDS are still with us, and many remain active in the struggle to defeat this terrible disease.
Boulder Weekly spent the past few months interviewing some of those who played an important role in the early days of the AIDS pandemic. We hoped to put together something of a local history of the epidemic and to answer one question: How has HIV/AIDS changed Boulder County?
In honor of World AIDS Day, Dec. 1, 2006, we offer the following retrospective. Over the next four weeks, we'll supplement this with profiles of people who've been impacted by this disease. Far from presenting a complete picture, these articles are little more than a rough sketch of the human story of HIV/AIDS in Boulder County. They cannot adequately express the suffering that those infected with HIV/AIDS have endured and continue to endure, nor encompass the grief and loss sustained by their friends and families. Nor can they do justice to the selflessness and strength of the volunteers, activists, clergy, public officials and medical practitioners who responded to the crisis with compassionate action when most of us did nothing.
Although this retrospective looks back in time, it does so in full awareness that the AIDS crisis is far from a thing of the past. More than 500 Boulder County residents are currently living with HIV/AIDS. Each year, 40,000 Americans contract the virus, an infection rate that has held steady despite education and increased awareness. And although new drugs prolong lives, they bring their own kind of suffering.
Globally, AIDS is a plague unequalled in history, a scourge that threatens not only human life but human society. Today, 10,000 children, women and men will die of AIDS-related causes. Some 10,000 more will die tomorrow. And tomorrow. And tomorrow. Thousands will continue to die of this preventable and treatable disease each day until a vaccine—and a cure—are found.
In truth, any attempt to tell the story of HIV/AIDS, even on a local level, is doomed to failure. The emotions are too big, the images beyond the spectrum of any camera. As one bereaved grandfather wrote in a letter to Boulder County AIDS Project after watching his daughter cradle her dying 22-year-old son, "Were I a poet, I could not speak the words. Were I an artist, I could not picture the images."
Ultimately, there's only one place big enough to hold something as vast as the story of HIV/AIDS—and that is the human heart.
* * *
In 1981, Dr. Charles Steinberg and his wife, Torkin Wakefield, a psychotherapist, bought some used furniture and opened a holistic family practice center in Boulder together with another counselor and doctor. The concept behind the center, named Wellspring: Partners in Health, was to offer patients a variety of paths to wellbeing.
"We just wanted to have a family practice center where we gave good medical care and looked at the whole person's life... using everything we could figure out to help people rather than just the limited medical model," says Steinberg, 59, who now works in Kampala, Uganda, educating health-care workers about HIV/AIDS and treating AIDS patients.
Steinberg opened Wellspring after five years of working at Wardenburg Student Health Center on the University of Colorado's Boulder campus, where he had treated young gay men and gained a reputation in the Boulder community of being kind and respectful toward gays.
"I'm afraid that back in the late '70s, it was still some doctors' practice to be pejorative toward homosexuals," he says.
The number of gay men he treated at Wellspring grew by word of mouth, and soon the men's consciousness group that Steinberg had formed became a gay men's group without any effort on his part.
He had no idea that some of his patients were already infected with a deadly new virus, or that this virus would soon cause a global epidemic, or that the epidemic would change his medical career and his life.
As he put his new family practice together, Steinberg saw the alarming reports that came out of New York and Los Angeles in 1981, telling of gay men who'd died of an unusual array of rare, opportunistic infections. Because he had so many gay patients, he took an interest in this new syndrome, first called "gay cancer" and Gay-Related Immune Deficiency, or GRID.
No one knew anything about the disease in those days—what caused it, how it spread, how to treat it. Some medical authorities suspected that the use of amyl and butyl nitrate "poppers," used to enhance sexual arousal and orgasm, was to blame for the apparent collapse of the immune system. The medical journal Immunology Today ran an article speculating that sperm acted as an immunosuppressant in gay and vasectomized men.
Rather than igniting panic as the mere mention of SARS, West Nile and avian flu have done in recent years, these postulations went before a public that was largely uninterested in and even smug about the news that a strange illness was killing gay men.
In 1983, Reagan advisor Pat Buchanan seemed to sum up the cruel indifference of many Americans when he said, "The poor homosexuals—they have declared war against nature, and now nature is exacting an awful retribution."
That year, one of Steinberg's gay patients came in with swollen glands and strange sores in his mouth. There was no test for the virus in those days; in fact, doctors didn't confirm that it was a virus until later that year. But Steinberg had read enough to recognize the pattern of symptoms. Unsure how to treat the syndrome and wanting to learn more, Steinberg got on a plane and flew to the center of the epidemic—an infectious disease clinic in San Francisco, where he spent two weeks learning everything he could from doctors who were on the frontlines.
There he witnessed firsthand the severity of the problem—men dying in droves while doctors struggled to understand what was happening. The frustration and grief of the medical staff touched him deeply. So many people were dying that the hospital staff had to meet weekly just to address their own emotional needs, listing the names of those who'd perished on a blackboard—a blackboard that was always full.
"By the time I came back [to Boulder], it was just every week that one or two patients were showing up with similar problems," Steinberg says. "We knew so little about it then. We hardly knew what tests to do. You'd see a patient, and you'd do their T-cell count, and it could come back high or it could come back low, and we didn't have a clue why some people were getting sick and some people weren't. We were really just operating in the dark."
With no medications available to treat this new illness, which was soon named Acquired Immune Deficiency Syndrome (AIDS), Steinberg fell back on the founding principles of Wellspring—a holistic approach focused on healthy living. He taught patients how to avoid catching infections, coached them in good nutrition, and worked with Wakefield to offer them emotional support.
"When you don't have any magic bullets, and you don't have any perfect understanding of the infection going on, it just makes sense to use whatever you can," Steinberg says. "Good nutrition, good psychological and emotional care, regular exercise and stress management all became the treatment approach we had and seemed to be the only thing to offer."
Not only did the more holistic approach seem to improve his patients' health, it also helped them deal with their symptoms. It was a "how you experience your experience" approach, he says.
For Steinberg, it wasn't about dying of AIDS; it was about living with AIDS.
"The whole idea was that we still didn't know what was going on, but given you're faced with the unknown, why not choose hopefulness and a positive attitude rather than despair and negativity," Steinberg says. "The only other doctor in town who was seeing AIDS patients at the time was taking the approach, 'Well, you're going to die. You might as well go home and wait.' Patients don't really thrive with that approach, as you can imagine."
Gradually, AIDS became the focus of Wellspring, supplanting Steinberg's family practice. Rather than caring for kids with ear infections and treating adults with high blood pressure, Steinberg was helping those stricken with this new plague to find joy in life—and to face death.
"I remember lots of really sweet mostly gay men patients who had terrible suffering," he recalls. "They lost their vision, or they got covered with tumors, or they had horrible diarrhea 50 times a day—just miserable, miserable uncontrolled incontinence, terrible symptoms. And all we had to control it was the simplest of drugs, nothing that really worked. A lot of it was just being with people in their illness, a little bit like hospice does, where they're not trying to fix it. You're just going down the path with it."
Steinberg says he learned a lot from Boulder County Hospice in those days—how to focus on making the lives of his patients more comfortable and tolerable, how to support his patients as they grew sicker, how to face their deaths without fear. But that didn't change the fact that it hurt to watch so many people suffer and die.
"It was a really painful time," Steinberg says. "It was a painful time."
* * *
AIDS would be terrifying enough if it were just another deadly illness. But AIDS has never been just about sickness and death. It's a disease that cuts to the heart of a society's biases and bigotries. No matter which culture AIDS has afflicted or how AIDS spread through that society—through homosexual contact, through heterosexual contact or through intravenous drug use—it has carried with it a stigma and a sense of shame, bringing out the worst in human beings and turning those who are already marginalized into untouchables.
In the early days of AIDS in Boulder County, young men who'd hidden their sexual orientation were faced with the overwhelming task of telling their parents they were gay and dying of AIDS in the same breath. Sometimes, family members embraced these young men. Sometimes, they hung up the phone and never spoke with them again, abandoning them to die alone.
Not only did this increase the emotional pain Steinberg's patients suffered, but it also had an adverse impact on their health.
"Once you feel like you're an untouchable, you just shrivel up," he says. "Once you feel like everybody around you thinks you're going to die—that you're so horrible you're going to die—that's what you do."
So Steinberg put together Christmas parties, volleyball games and picnics to give his patients a sense of connection and normalcy.
But during those early years, a diagnosis of AIDS brought other problems, as well. Having AIDS sometimes meant losing one's job, one's housing, one's health insurance—even in liberal Boulder County. A person could find himself sick with AIDS, unemployed, homeless and impoverished within a matter of months. Steinberg shouldered that burden, as well, trying to help people meet their basic needs and treating them even when they couldn't afford medical care.
"Before Boulder County AIDS Project, it felt like our office had to do everything," he says. "We were the social-work office and the psychotherapy office and medical care office and the everything office."
It became a difficult personal time for Steinberg, not only because he'd watched so many of his patients die, but because he was getting almost no backup from the wider medical community in Boulder County. He couldn't even plan a vacation because he couldn't find a doctor willing to be on call for his patients.
"I was miffed that nobody else was coming forward," he says. "For a while I resented that the rest of the medical community was not picking up their piece of it. There was literally no one else in town."
Losing money on each AIDS patient and at times exhausted, Steinberg sought the support of his wife and good friends, turning to exercise and meditation to help him keep up with his work.
"I got depressed by all of this several times," he admits. "It would really wear me out. And at the same time it was very nourishing and rewarding for me."
But officials with Boulder County Public Health (BCPH), then led by Federico Cruz-Uribe and still called the Boulder County Health Department, took note of what Steinberg was doing. They saw the emerging local picture and noticed that the highest infection rate was among gay men. Chuck Fletcher, an educator with the health department, met with leaders in the gay community, looking for ways to halt the spread of the disease and to help those already infected. It became clear to the health department that the county needed a nonprofit to focus specifically on AIDS.
In February 1985, Boulder County Health Network—known since as Boulder County AIDS Project, or BCAP—became a 501(c)(3) nonprofit and took on that mission.
Neil Fishman, who volunteered for BCAP in its earliest days after learning that a friend had been diagnosed with AIDS, recalls that there was nothing to BCAP in the beginning beyond a borrowed phone line and volunteer board of directors committed to helping people with AIDS. There was no office space, no budget, no outreach program.
"We had no idea of the dimensions of the epidemic back then," says Fishman, who eventually served as the third president of BCAP's board.
In 1985, Reagan was in his second term as president. Although more than 20,000 AIDS cases had been reported in the United States, Reagan had responded to the epidemic with silence. There was no federal assistance available for organizations mobilizing against AIDS. And although a reliable test became available in 1985, there was still no form of treatment. Indifference toward the disease was giving way to widespread AIDS phobia, placing an even greater burden on AIDS sufferers.
BCAP's initial mission was to deal with AIDS at a grassroots level, working to improve the day-to-day lives of people with the disease and to provide information and education to the community. Two volunteers staffed the borrowed phone line two afternoons a week. The rest of the time, the line was forwarded to people's homes, with volunteers taking turns answering calls.
"We weren't even really trained to help people, but there was enough scare out there that when people saw that there might be some help or some organization that was dealing with AIDS, they would call for up for information," Fishman recalls.
Fishman says he and the other volunteers did their best to answer questions with the limited information that was available. But other issues were even more difficult to resolve.
"We ended up with people whose families had turned their backs on them when they found out their loved one had AIDS," Fishman says. "There were some families that came together and helped, to be sure, but we saw too many of the other kind. People were being abandoned. So it wasn't just dealing with a medical crisis. It was dealing with a whole bunch of personal crises, as well."
The tragedy of AIDS patients being abandoned by friends and family mobilized those who were sympathetic in Boulder County, Fishman says. It drew together a group of diverse people—both gay and straight, lesbians, people of all races—who felt compelled to help.
One of those people was Bonnie Crumpacker, now 79. A long-time political activist who had worked on issues like sexual assault and abortion, Crumpacker was working as a volunteer for U.S. Rep. David Skaggs when Skaggs asked her to accompany him to a public event hosted by BCAP.
There, Bonnie heard for the first time that gay men with AIDS were losing their jobs, being abandoned by their families and being evicted from their homes.
"I was in a state of shock listening to these men," she says. "I never dreamt people could be treated that way in our town. I always held Boulder in high esteem."
After the talk, during which the two men asked for contributions to build a home for AIDS sufferers who'd lost their housing, Crumpacker asked the men if she could attend a BCAP board meeting.
At the meeting, Crumpacker suggested BCAP work cooperatively with Dr. Steinberg, a collaboration that Steinberg welcomed.
"The doctor was doing the medical stuff, and my idea for BCAP was to get organized, to do a political thing around it in our community, because it was not OK what was going on here," she says.
Part of getting organized was having a pool of people to contact for financial contributions and volunteer support, but BCAP didn't even have its own phone line. So Crumpacker met with Skaggs and left the meeting with Skaggs' mailing list—a list of 60,000 names.
"It was like a gift of 60 zillion dollars," she says.
With a mailing list, BCAP was able to solicit for contributions from among ostensibly sympathetic Democrats and to host fundraising events. The organization began slowly to build its financial footing. But lack of funding was only one of the obstacles the young nonprofit faced in those days.
* * *
It was at about that time that Fishman became president of BCAP's board. Though Crumpacker had been asked to fill that role, she declined, certain that because AIDS in Boulder County was impacting primarily gay men at that point, the organization needed a gay man at the helm.
But for Fishman, taking that very public role came at a personal cost. Though Fishman had been active in the fight against AIDS, he wasn't "out." Becoming president of BCAP's board meant going public with his sexuality.
"It was a personal choice," Fishman says. "I knew I was going to be more visible in the community than I was at the time. But the choice was either to not be involved in this issue or to do it. And I did it."
Being gay and being part of an organization that worked on the AIDS issue came with other complications, as well. Just working for BCAP meant that some people didn't want to shake your hand.
"We got people who wouldn't want to sit around the table with you," Fishman recalls.
The battle against AIDS turned a small corner in 1986 when U.S. Surgeon General C. Evertt Koop broke the silence and came forward with a very explicit look at the AIDS crisis that called for AIDS education and safer-sex techniques.
"At least then people were talking about it," he says.
But in 1987, when Reagan finally used the term AIDS for the first time, Fishman was unimpressed. By then, almost 60,000 Americans had been diagnosed with the disease.
"I was so fucking pissed at that point that it was not even too little too late," he says. "It was a slap in the face."
Fishman wasn't the only one who was angry. The gay and lesbian community nationwide was enraged that so little was being done to address AIDS, from medical research to assistance for those stricken with the disease. The national organization ACT UP was founded under the banner "Silence=Death" specifically to address the lack of progress on AIDS. Although BCAP wasn't as confrontational as ACT UP, it did take on the job of being the public face of AIDS in Boulder County. And that meant bearing the brunt of some people's intolerance—something that was especially clear when BCAP went looking for its first office.
"We were turned down by some local places—I won't name names—that wouldn't even provide us with space if we paid for it," Fishman recalls. "That was out of—I don't know—fear or whatever."
But in 1988 the nonprofit found a small two-room office at 934 Pearl St. BCAP had about 25 volunteers and was able to hold regular office hours. However, the operation was still very basic. There was no real office equipment, and the food bank it offered was nothing more than canned food and toilet paper stored in one volunteer's garage. Because the organization had very limited funds, volunteers paid the postage for mailings out of their own pockets.
"So many great people rose to the occasion, a lot of them women, not gay, like me—just people," Crumpacker says.
But BCAP's small victories took place against a backdrop of individual suffering that is hard for most people to comprehend. The clients BCAP was trying to serve were dying. The grief felt by volunteers was very real.
"It breaks your heart," Crumpacker says. "They were all so young to me. They were just young people who did something as simple as having a sex act—nonviolent—and they were going to die for it."
Fishman says he buried his emotions in work.
"For me, I just channeled 20 to 40 hours a week of work for BCAP, because I didn't know how to deal with [the grief], and I didn't know how much more of a toll it was going to take," he says. "I just kept going and going and going. You just keep working because you know you're working against the clock."
* * *
On the north end of town, public health staff were embroiled in their own political battle—a struggle with the state health department about anonymous HIV testing.
"It was a huge fight," recalls Anne Guilfoile, who joined the county health department in 1987.
Some in public health believed that anonymous testing wouldn't give the government the control or information it needed to address HIV/AIDS. They advocated a linear, scientific approach—test people and report the results.
But officials in Boulder County and in other more progressive parts of the country felt that people needed to feel safe in order to take the big step of getting tested in the first place. They argued that, given the stigma and shame that surrounded HIV/AIDS and the current climate of blame, people would avoid getting tested unless they could do so anonymously. The limited amount of research that had been done on HIV testing at that time backed up their assertions, strengthening Guilfoile's resolve and that of her supervisors.
County officials bypassed state requirements by asking for names—but not checking the names against identification. People could give comic book names, fairy-tale names, borrowed names. Humpty Dumpty. Snow White. James Bond.
"At Boulder County, they could say whatever they wanted to say," says Guilfoile, now retired. "In the end, when people tested positive, they gave us their names. There's some dignity in that."
The battle was still raging when Chuck Stout, Boulder County's current health officer, came to the health department in 1990.
"It became pretty widely known that we wouldn't ask for an ID," Stout says. "You give a name and a birth date, and thank you—we're not asking for ID. I'm sure 'Chuck Stout' was tested a huge number of times. Sadly, we had to play games like that to do our public-health work."
In the end it was a battle that the health department won, with support from BCAP and the State Legislature, making Boulder County one of the first communities to offer anonymous testing.
But before that issue was resolved, Boulder County embroiled itself in a second controversy.
"We learned there were injection drug users who were HIV-positive in the county," Guilfoile says. "Some of them were related. Some were couples. Some had children. One was a single man who'd had many, many young women sexual partners, some of whom were in high school. It really mobilized us to look at how to address this."
Injection drug users spread HIV by sharing used needles and syringes and through sexual contact. Preventing the spread of the disease meant making certain injection drug users had access to clean needles and syringes, as well as condoms and safer-sex information. But the idea of supplying drug addicts with the tools they need to inject—cotton, antibiotic ointment, bandages, "cookers," tourniquets, needles and syringes—is still controversial today. Back in the late 1980s it was positively shocking to some people.
Guilfoile says that, surprisingly, there was little resistance to the idea in Boulder.
"I think that once people saw there was evidence of need, that there had been research done, that we had looked at different options, they came on board," she says.
Health officials made their case to an open-minded board of county commissioners and to the public, earning the support of county government and the local media.
In 1989, Boulder County launched what was only the second legal needle-exchange program in the United States.
That the program has saved lives is absolutely certain. How many lives it has saved—and how many people it has served—is difficult to quantify. The same anonymity that makes the program successful makes hard data elusive. What county officials do know is that many who have been served by the program went on to become volunteers, helping others to inject safely and eventually kicking their own addictions.
"It was a pretty powerful thing to see that if we don't treat people in stereotypical ways, they don't behave in stereotypical ways," Guilfoile says.
* * *
From the purely selfish standpoint of a virus, HIV is wildly successful. Unlike ebola and other swift-killing diseases, HIV can live silently in the body of its host for years without impeding health, thus enabling its host to live normally and to transmit it to others before dying. And although other viruses can be passed on through droplets of moisture in the air and by touch, making them easier to spread, HIV binds itself to the bodily fluids that sustain life, attaching itself to the most basic human needs and vulnerabilities—a sick child's need for a blood transfusion, a lonely woman's longing for human touch, a drug addict's craving for comfort, a young person's instinctual drive for sex.
Without a concerted worldwide effort to educate and to address the causes behind the needs—poverty, the inequality of women in the developing world, global violence, hopelessness among youth, homophobia—the spread of HIV is as persistent as the pounding of a human heart and as hard to hold back as the hot rush of orgasm.
"HIV targets behavior," says Tim Leifield, first executive director of BCAP.
Leifield, who was openly gay, got involved with BCAP in the mid-'80s, after walking in off the street and discovering exactly how grassroots the nonprofit was.
"One day Tim Leifield walked in," Crumpacker recalls. "There was a volunteer doing work on paper, and he said, 'Don't you have a computer?' No, we didn't have a computer. We didn't have a typewriter. We didn't have anything except people. And he said, 'Well, you've got one now.'"
Leifield's enthusiastic support of BCAP came at a price. In 1990, the board asked him to become the organization's first executive director.
"What I agreed to do," he says, "was to hire someone who knew what they were doing."
In the meantime, there was behavior to change.
Robin Bohannan, who was BCAP's first case manager and who went on to serve as both program director and executive director, says Leifield brought a sense of "joy and silliness" to the work at BCAP, something that was needed in those dark days when BCAP was losing almost a client a week to the disease. He created the Condom Squad, complete with crazy condom hats, and headed with volunteers into local bars to hand out safer-sex kits that included condoms and lubricant. People snapped up the safer-sex kits as fast as BCAP could put them together.
Inspired by European and Australian advertising campaigns, Leifield also wanted to make the topic of safer sex a very public one, and approached RTD about buying ads on buses.
"That resulted in lots of go-arounds with RTD about what was appropriate for public display," Leifield says.
In the end, RTD agreed to run an ad that read, "Show you care," with an unrolled condom making up the "o."
Compared to the posters Leifield had seen in public restroom stalls in Australia, which showed fully erect penises covered only by condoms, the bus ads were positively G-rated. (In discussing the differences between the American approach to AIDS education and the Australian one, Leifield says one Australian said to him, "Thank God we got the convicts and you got the Puritans.")
But fun and innovative public education aside, the primary focus of BCAP was still caring for people with HIV/AIDS. With only a few drugs available to treat the disease, notably AZT, people were sick and dying.
"I think one of the best things BCAP offered to victims of HIV and their families was the feeling that at least we're doing something," Leifield says.
In 1990, "doing something" often meant providing peanut butter and bread, helping someone to find housing, or assigning a "buddy" to support a client. Buddies picked up medications and groceries, cleaned up vomit, and held vigils beside the beds of those whose families had left them to die alone.
When federal aid arrived from the passage of the Ryan White CARE Act in 1990, BCAP's role evolved. By 1991, the nonprofit was able to hire prevention staff and a single case manager, who served 90 clients.
But the more BCAP offered, the more it realized it wanted to offer. Clients were in need of clergy support, mental-health counselors and lawyers. BCAP put out the call for help, and some in the community answered.
"In those days it was not only about hooking people up with resources, it was about creating resources," Bohannan says. "People didn't want to help our clients."
Volunteers gradually stepped forward from a variety of sectors, collaborating with BCAP to improve the lives of their clients. Clergy worked with BCAP to form the Interfaith AIDS Coalition, offering spiritual guidance to sick people who felt abandoned by their faith communities. Therapists helped them face their feelings about their families and their fears about death. Attorneys worked pro bono to help them secure legal rights for their partners—the same legal rights that were rejected on Nov. 7 by Colorado voters in Referendum I—enabling them to make medical decisions for their loved ones and allowing them to inherit.
"There were a lot of end-of-life issues, a lot of estate-planning issues," Leifield says. "Someone might have been with a partner for 15 years, but he had to give his property away before he died or risk his relatives pillaging it."
Crumpacker recalls one instance in which one man's parents, upon learning that their son was in the hospital and dying of AIDS, swooped in and took his belongings from his apartment, removing things he'd intended to leave to his surviving partner.
"His parents came and took the furniture he had—just a bunch of junk, by the way—walked in there and moved it out," she says. "Imagine doing that. That's just awful! It's absolutely unforgivable."
The parents didn't have time to visit their dying son, but they did have time to claim his possessions.
"It didn't happen a lot here, but it did happen," Leifield says.
Bohannan witnessed another kind of pain—that of parents who came to realize that their attitudes about sexuality had denied them a true relationship with their sons.
"When parents realized that their biases around sexual orientation cost them time with their child—I can't imagine living with that pain," she says.
And then there were the funerals—one after the other after the other. There were so many funerals that Leifield found himself discussing funerals like one might discuss weddings, in terms of flower arrangements and music and organization.
"You didn't really have time to grieve for somebody before the next person died," he says.
Steinberg and Bohannan were both repeatedly asked to deliver eulogies, a responsibility they accepted, as dying men, cut off from their families and churches, did their best to cobble together a community of support in their last days.
By 1993, AIDS had become the leading cause of death for young adults in 64 U.S. cities. In two years, it would become the leading cause of death for young people nationwide.
* * *
At Wellspring, Dr. Steinberg had been treating AIDS patients nonstop since 1983. In 1987, he founded "AIDS: Medicine and Miracles," an annual retreat for those effected by HIV/AIDS. The idea behind the conference and retreat was to offer those on the frontlines of the epidemic a chance to restore themselves and to share ideas and therapies.
But by 1994, Steinberg was nearing the end of his endurance. Though BCAP had brought with it "immense support," the hassles of running his clinic—dealing with billing, ordering supplies, wrestling with insurance companies—were wearing him down.
Timeline of a Pandemic
1981 Boulder physician Charles Steinberg opens Wellspring: Partners in Health, a holistic family practice clinic. In March, The Lancet, a British medical journal, reports that an aggressive form of Kaposi's sarcoma was found in several gay men in New York. The Centers for Disease Control notice an increase in the number of cases of pneumocystic carinii pneumonia in New York and California. In June, CDC reports that five gay men have died of pneumocystic pneumonia in Los Angeles. As the year wears on, some 152 similar cases of similar infections have been reported. The syndrome is first called "gay cancer," and then Gay Related Immune Deficiency, or GRID. CDC declares the disease to be a new epidemic, but even the gay community pays little attention. Unbeknownst to the world, a silent and deadly virus has already spread to five continents, launching what will become the worst plague in human history.
1982 The Gay Men's Health Crisis (GMHC) is founded in New York City, sparking an activist-based approach to the disease. Hemophiliacs contract "GRID," challenging the idea that this is a gay disease. Wall Street Journal mentions the disease for the first time—in an article about how the illness is impacting women and heterosexual men. In September, CDC renames the new illness Acquired Immune Deficiency Syndrome (AIDS).
1983Dr. Steinberg diagnoses AIDS in a few of his gay patients. He becomes the first—and for many years the only—doctor willing to treat HIV/AIDS patients in Boulder County. He travels to San Francisco to learn more about the new disease. Pat Buchanan declares that AIDS is nature's "retribution" against homosexuals. The first AIDS-related discrimination trial is held in the United States. French doctors at the Pasteur Institute become the first to isolate the new virus. They call it LAV (lymphadenopathy-associated virus).
1984 U.S. researchers isolate the virus that causes AIDS and call it HTLV-3 (human T-cell lymphotropic virus, type 3). In Rwanda and Zaire, doctors link transmission of the virus to heterosexual sex, foreshadowing the spread of the disease among women and children.
1985 Boulder County AIDS Project is born. It consists of two volunteers working two afternoons a week on a borrowed phone line. They serve 49 people. The first reliable test for HIV antibodies becomes available. Boulder County health officials fight the state health department in an attempt to offer anonymous testing. The American Association of Blood Banks and the Red Cross begin screening the country's blood supply for HIV antibodies. Ryan White, a 13-year-old hemophiliac with AIDS, is barred from school. President Reagan makes his first public comment on AIDS but doesn't use the term AIDS. On Oct. 3, actor Rock Hudson dies of AIDS. AIDS cases have been reported on every populated continent on the planet.
1986 Dr. Steinberg hosts a support group called Positive Positives made up entirely of HIV-infected men. Treating AIDS now dominates his practice. The terms HTLV-3 and LAV are dropped in favor of HIV (human immunodeficiency virus). The U.S. Surgeon General C. Evertt Koop draws attention to HIV/AIDS by calling for AIDS outreach and safer-sex practices, including the use of condoms. Researchers begin trials using azidothymidine (AZT) and discover that the drug dramatically reduces AIDS deaths.
1987 Dr. Steinberg launches "AIDS: Medicine and Miracles." BCAP now has five volunteers and regular office hours. The FDA approves AZT, the first anti-retroviral drug, for treatment of HIV/AIDS. The American Medical Association rules that doctors are obligated to provide treatment for people with AIDS. President Reagan makes his first public address on AIDS, some seven years after the epidemic got its foothold in the United States. The AIDS Memorial Quilt is started in San Francisco and is put on display on the National Mall in Washington, D.C. ACT UP is founded to address AIDS as a political issue. Princess Diana makes headlines for shaking hands with an AIDS patient.
1988 BCAP has 25 volunteers and opens its office at 934 Pearl St. It also opens a food bank. There are 578 reported cases of HIV infection in Boulder County. Human trials begin for an anti-HIV vaccine. Congress prohibits the use of federal funds for needle-exchange programs. The first annual World AIDS Day is observed on Dec. 1.
1989 Boulder County Health Department launches a needle-exchange program to decrease the transmission of HIV among intravenous drug users. It's the first legal needle-exchange program in Colorado and only the second in the United States. AZT costs AIDS patients $7,000 a year. Activists accuse the drug's maker of profiteering, and the price is cut.
1990 BCAP receives federal funding for case management services and moves to 2118 14th St. BCAP launches the Condom Squad. Boulder's AIDS Memorial Garden is christened. On April 8, Ryan White dies at age 18. Congress passes the Ryan White CARE Act in an effort to improve access to quality care for all HIV-infected Americans. Globally more than 10 million are believed to be HIV-positive.
1991 BCAP Interfaith AIDS Coalition begins. One BCAP case manager serves 80 clients. First prevention staff hired. Boulder County begins developing Open and Affirming Sexual Orientation Support (OASIS), a program that will address a host of issues, including HIV, with youth. NBA star Magic Johnson announces that he is HIV-positive. Freddy Mercury, lead singer for Queen, announces he has AIDS and dies the following day. The Centers for Disease Control cuts funding for AIDS-prevention programs in minority communities. The red ribbon is adopted as the AIDS symbol.
1992 BCAP has 145 trained volunteers and hires a second case manager to work with 125 clients. KBCO begins donating some of its proceeds from its Studio C sales. The FDA approves the first combination drug therapy for the treatment of AIDS.
1993 AIDS is now the leading cause of death for young adults in 64 U.S. cities. BCAP hires a bilingual case manager. Tom Hanks breaks down barriers with his Oscar-winning portrayal of an AIDS victim in Philadelpia. Some strains of HIV show resistance to treatment with AZT. In South Africa, the number of HIV infections is found to have increased by 60 percent. More than 14 million adults are believed to be infected with HIV, most of them in sub-Saharan Africa.
1994 U.S. Health and Human Services announces the 18 members of the National Task on AIDS Drug Development. European countries and Australia launch aggressive and explicit advertising campaigns about condom use and HIV transmission. AZT is found to cut by two-thirds the transmission rate of HIV from infected mothers to their babies. On Nov. 11, Pedro Zamora, who had appeared on MTV's The Real World, dies of AIDS-related causes. Surgeon General Jocelyn Elders loses her job for suggesting that children be taught that masturbation is an acceptable alternative to sex with a partner.
1995 BCAP launches its Latino Outreach program and holds its first Halloween Bash. Boulder Community Hospital opens the Beacon Clinic in collaboration with Dr. Steinberg. HIV is now the leading cause of death for Americans ages 25 to 44 years of age. President Bill Clinton hosts the first White House conference on AIDS. The FDA approves the first protease inhibitor, saquinavir. Nelson Mandela calls for humanity to move past the stigma and shame associated with the AIDS pandemic. Some 18 million adults and 1.5 million children are believed to be HIV positive.
1996 BCAP's budget has increased to $500,000. The FDA approves the first HIV home-testing system for purchase over the counter, in addition to the drug nevirapine, the first in a new class of drugs called non-nucleoside reverse transcriptase inhibitors. Researchers also discover how to test a patient for viral load, providing health-care workers with another way to measure a person's HIV infection. African leaders remind the rest of the world that most AIDS cases are in Africa and that Africans don't have access to these new drugs. President Clinton announces the first White House strategy for combating AIDS—15 years into the epidemic.
1997 AIDS deaths drop 19 percent in the United States. BCAP renovates its home and now serves 200 clients. The organization begins its Latino Outreach media campaign. The number of babies born with HIV in the United States also dramatically declines. President Clinton calls on the United States to develop a vaccine for AIDS within 10 years. The United Nations reports that the epidemic is much worse than previously feared and estimates that 30 million people are currently infected with HIV.
1998 BCAP receives donations of a two-bedroom house from Rachel Walton in memory of James Curley. An analysis of preserved blood samples shows that the first HIV infections probably occurred in the late 1940s or early 1950s. CDC reports that African-Americans account for 49 percent of all AIDS deaths in the U.S. In sub-Saharan Africa the HIV-infection rate is estimated to be about 25 percent.
1999 BCAP hosts its first annual Midsummer Night's Walk. South African officials announce that men with HIV have been raping young girls in the horribly mistaken belief that having sex with a virgin will cure them of the virus. African governments battle U.S. pharmaceutical companies for the right to manufacture and distribute inexpensive versions of patented drugs. Intravenous drug use among youth is found to be responsible for a rapid increase in HIV infections in Russia. The UN finds that more women than men are infected with HIV in Africa.
2000 BCAP has 17 staff members and 300 volunteers. The organization is open more than 50 hours a week and serves 300 clients and their families. Since the beginning of the epidemic, 774,467 Americans have been diagnosed with AIDS, and 448,060 have died. As the catastrophic nature of AIDS becomes increasingly clear, the UN declares AIDS a security threat. The CDC announces that the infection rate among black and Hispanic men has surpassed that of gay men. Jesse Jackson is publicly tested for HIV to raise awareness among people of color. U.S. pharmaceutical firms offer to negotiate cuts in the cost of their drugs, and the United States backs this by offering loans to African nations. Both offers are viewed as insulting and are rejected by many African governments.
2001 BCAP creates its HIV in the Workplace Outreach Program. A local couple donates a lot on Elder Street in Boulder, and BCAP begins to work on permanent affordable housing for people living with HIV. BCAP donates 10 percent of its Midsummer Night's Walk revenues to international AIDS-relief efforts. CDC finds that 30 percent of black men in six large U.S. cities are HIV-positive. China admits it has an HIV/AIDS problem. The U.S. government threatens to sue Brazil for manufacturing generic versions of patented AIDS drugs, but later drops the threat.
2002 Scavenger Hunt becomes BCAP's first fundraiser in Broomfield County. BCAP develops a strategic five-year plan, with a new agency video and website. BCAP's HIV Care Services programs serve 335 clients. The FDA approves a finger-prick test that gives rapid results. An estimated 40 million people worldwide are now living with HIV/AIDS. In its 20th year, the AIDS pandemic has infected 60 million people and killed 22 million, making it the most devastating epidemic in history.
2003 BCAP provides office space for Boulder Pride and consolidates its operations under one roof at 2118 14th St. Eaton House opens as a collaborative project between BCAP, Boulder County, the city of Boulder, St. John's Episcopal Church, the Gill Foundation and Youth Build Project of the Boulder Valley School District. This permanently affordable home houses four BCAP clients. BCAP offers on-site OraSure HIV antibody testing in partnership with Boulder County Public Health. The FDA approves enfuvirtide, a new antiretroviral drug. The Vatican tells the world that condoms are not safe and don't protect against HIV infection, earning the criticism of health officials worldwide.
2004 The Beacon Clinic is re-established as a Ryan White Title III Early Intervention Services medical clinic in partnership with BCAP and Boulder Community Hospital. BCAP begins integrating case management services with the clinic. BCAP extends its HIV antibody testing to include OraQuick, which gives results in 20 minutes. BCAP experiences its second year of cuts from its federal funding source, the Ryan White CARE Act, to the tune of 35 percent. Almost 30 percent of pregnant women in South Africa test positive for HIV.
2005 The Beacon Clinic expands services to AIDS patients in northeastern Colorado. BCAP case managers begin collaborating with case managers at the Northern Colorado AIDS Project. About 14 percent of all newly diagnosed HIV patients exhibit resistance to at least one anti-HIV medication. Ryan White Care Act faces reauthorization in Congress with major proposed changes in principles, funding guidelines and implications for AIDS service providers, including BCAP.
2006 HIV continues to mutate and develop drug resistance, eluding the attempts of scientists trying to create a vaccine. Since the start of the epidemic, 682 people have been diagnosed with HIV/AIDS in Boulder County. Of those, 143 have died, and 539 are living with the disease. Worldwide, an estimated 26 million men, women and children have died of AIDS. Some 40 million are believed to be infected. Experts predict that by 2030, AIDS will join heart attack and stroke as one of three leading causes of death worldwide.
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