The Forgotten Epidemic

coverwebThirty years ago, AIDS emerged and changed the fates of millions. But even after great strides were made medically and otherwise, three decades later, some ask: Is AIDS awareness fading?
Almost 30 years ago in the summer of 1981 while IBM was rolling out its first PC and NASA was celebrating its first shuttle launch … and  Charles, Diana, Luke and Laura were all still single while MTV was just about to kill the radio star, two separate reports were issued from the Centers for Disease Control. The first, on June 5, reported that between October 1980 and May 1981, five young men were treated for biopsy-confirmed pneumocystis carinii pneumonia in three different hospitals in Los Angeles. All five patients had laboratory-confirmed previous or current cytomegalovirus (CMV) infection and candidal mucosal infection. Two of the patients died. All five were sexually active homosexuals men.


The second report issued on July 4 stated that during the 30 months prior, 26 cases of Kaposi’s sarcoma have been reported among gay males, and that eight had died, all within 24 months of diagnosis. Earlier that same year President Ronald Regan appointed a frank- talking, practicing Christian/pediatric surgeon as Deputy Assistant Secretary for Health—C. Everett Koop.

By the end of 1982, Koop was elevated to the position of Surgeon General and the Centers for Disease Control had properly defined Acquired Immune Deficiency Syndrome (AIDS). As the known death toll in the United States now topped 1,000, community organizations had begun to form in an effort to educate and provide support and understanding around this new disease that would soon claim millions of lives.

Last week, at 94 years old, Koop came out of retirement to receive an award at the National Summit on HIV Diagnosis, Prevention and Access to Care in. Koop used the platform to issue a clear warning, sighting,  “a growing sense of complacency that is as dangerous as the irrational fear in the early days.”

In his address, Koop spoke of the early-education efforts of the AIDS epidemic, which included mailing brochures to 170 million households in 1988, in what may have been the largest mass mailing in history and was certainly the first government-funded mass sex education.

“If you tell people the truth, in a very factual way, they will act,” Koop said. “When it comes to bad news or controversial issues, Americans want to hear it straight.”

But Merle Smith, executive director of the Santa Cruz AIDS Project (SCAP), understands just how difficult and expensive that notion can be. Over the last few years, SCAP’s budget has dropped from $1.5 million to less than $800,000 and staff has been cut by more than half, reducing the education and prevention dollars to almost nothing.

“One of the things that we are no longer able to do is called the Speakers Bureau, where people living with HIV/AIDS would speak to high schools, colleges and other groups about prevention activities,” Smith says. “We still train student volunteers but we are no longer able to proactively schedule these speakers.” The Speakers Bureau is one of many Education and Prevention programs that have been eliminated due to recent budget cuts on a federal and state level. “With John Laird in the legislature,” she adds, “we had an advocate there. Last year Gov. Schwarzenegger vetoed all HIV prevention money for mid-sized counties. There is literally no money for education.”Laird, who was the 27th district representative to the California State Assembly from 2002 until he termed out in 2008, was one of six founding members of  SCAP in 1985. He says he was the  “point person” for HIV Issues for the six years that he was in the legislature.

“The four years that I was Budget Chair, we had a process of negotiating with the governor, where I was able to make sure that HIV prevention was on the veto proof list,” he adds.

The fiscal year (FY) 2010 Budget provided no HIV prevention monies outside of California’s five major cities.

On a federal level, the Obama Administration recently released the National HIV/AIDS Strategy for the United States. The first of three stated goals is “to reduce the number of people who become infected with HIV,” and yet of the FY 2011 HIV/AIDS budget request, only 3 percent is earmarked for prevention.

“After the drug cocktail came out, the sense of urgency changed,” Laird says, referring to antiretroviral drugs usually taken in combinations, which became available to HIV patients in the mid-’90s and which greatly improved the quality of life, as well as the life expectancy of people living with HIV. “Before that, having HIV meant a very low quality of life at best, and often a death sentence.”

Laird sites this medical breakthrough as a defining variable in the priority of AIDS in the public’s consciousness.

According to a Kaiser Foundation survey in 2009, six percent of the general public considers HIV/AIDS to be the most urgent health problem facing the nation, as compared to 44 percent in 1995.  This weaning of concern might suggest that the epidemic is under control but the statistics hardly support such a notion. In fact, the number of people infected with HIV each year has not dropped significantly since the late-’90s and infections from heterosexual contact is steadily increasing.

Each year in California an estimated 7,000 people are diagnosed with AIDS. In 2008 an estimated 27,543 males and 9,567 females were diagnosed with AIDS In the United States.


By The Numbers

The further you dig into the statistics the less clear the trends are. Gay, bisexual and other men who have sex with men remain the population most affected by HIV, but heterosexuals and injection drug users now make up more than 40 percent of new infections.

Smith notes that in some areas of the country, new AIDS cases are showing up. “It is the number one killer of African American Women between the ages of 18 and 35,” she says, adding that the demographics in Santa Cruz don’t align with national trends. “Our incidences are primarily men who have sex with men, who may not identify as being gay, and intravenous drug users.”

The at-risk list then goes on to include the homeless population and the many subsets therein; young intravenous drug users, runaways, sex workers, Latinos and other communities of color, and minority women. It’s as though the virus has taken a class in diversity and inclusiveness, and is determined to ensure that no one is left out, especially the marginalized.

cover_2bossesPerhaps the most startling statistic is the CDC’s estimate that one in every five Americans infected with HIV is unaware of his or her infection. In 2007 the CDC launched an HIV Testing initiative, aimed at increasing the numbers of Americans, especially those identified as high risk, that are tested for HIV. The initiative resulted in an additional 1.4 million Americans being tested since 2007 and 10,000 HIV-infected people being detected, 75 percent of which have been linked to care. Still, 40 percent of all new HIV diagnoses are “late testers”—those who develop AIDS within a year of diagnosis. Transmission rates among undiagnosed patients are 3.5 times greater than of those who know their status.

“There are between 1,000 and 1,200 people in Santa Cruz County living with HIV—that we know about,” Smith says, emphasizing the last part. “There could be just as many more that are undiagnosed. People aren’t literally dying in the streets, but we are facing a crisis.”

“There needs to be a sense of urgency; it’s just that the thing that the urgency is about has changed,” Laird adds. “Most of us who lived through [the AIDS crisis] are in our fifties and sixties now.” When talking about AIDS in the ’80s and ’90s with gay men from a younger generation, he feels there is a disconnect, that the experience doesn’t relate to them. “The youth feel fearless and immortal.”

The Former Surgeon General’s message was, in some ways, a reprise of the alarms he sounded all those years ago: “HIV is contagious and it can kill you … HIV/AIDS continues to be a major epidemic and requires a national mobilization to identify and provide immediate care for many Americans with HIV who remain undiagnosed.”


New Year, New Roads To Pave

Like any 30th birthday, the coming anniversary of AIDS in America is bound to stir up a range of emotion. Looking back on the hysteria and confusion, the ignorance and bigotry, the devastation that an entire generation tragically lost so many, and for a time with no foreseeable relief, certainly stands out. Then there were some victories as we gradually learned more about the disease—what it is, how it is transmitted, and finally how it can be prevented and treated.

cover_3atthedeskEvery year that passes, the collective memory fades. Some will never forget, but each year there are more who can never remember. Their AIDS story is a different story, but as the man who chartered the nation’s first policies on HIV and AIDS said this week: “This is not the time to declare victory, the war against HIV/AIDS is far from over.”

With a public that has lost interest, a state government that has cut funding and still every nine and a half minutes someone in American is infected with HIV, how does an agency like SCAP sustain the level of awareness around transmission and prevention?

“It’s going to take the tragedy of transmission rates going up to get people’s attention to bring it back,” Laird predicts. “I think that’s a moral outrage.”

Perhaps it is out of necessity, but Smith has a more optimistic view. “The thing is, we get by with a little help from our friends,” she says. “Were it not for the very, very dedicated people supporting us, SCAP would not exist.”

cover_4girlsWith funding from federal and state sources being cut, SCAP is even more dependent on its friends on a philanthropic level. Twenty years ago, Scott Roseman of New Leaf Markets initiated a fundraising program for SCAP, where local participating businesses donated 10 percent of their profits for the week surrounding World AIDS Day (Dec. 1). This year, the agency expects to gain close to $10,000 from the event.

Clearly fundraising is a big part of the help Smith refers to, but it certainly doesn’t stop there, “We have a great deal of support from UC Santa Cruz, we have on average of 20 to 25 volunteers who are here religiously every week, some of them are full-time 40-hour per week interns. The have created some great outreach programs.”

Many of SCAP’s outreach programs in the late ’80s and early ’90s became national models as ways to effectively educate at-risk communities about HIV and AIDS. Today there are new sets of challenges and new communities to target. Smith and her friends remain committed to the challenges, understanding that education is key.

“What’s different about HIV/AIDS than many other diseases, like cancer, is that it can be prevented. We know how to prevent it,” Smith says.

Dr. Koop shares a similar hope. “Knowledge is power,” he said. “Learning one’s positive serostatus is the first step for newly diagnosed HIV patients to get linked to care and treated early in the disease process with the potential to have a nearly normal lifespan.”

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