AIDS

Star sickness

Celebrities speaking out about their afflictions can raise awareness and money.

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Star sickness

Celebrity is a fleeting thing, fragile and impermanent. And health, like elusive fame, can vanish in an instant, leaving the subject weakened and bereft. Stardom and illness have united in banquet halls and the halls of Congress to raise money for and awareness of everything from Alzheimer’s to osteoporosis. Disease-stricken celebrities have put a familiar face on infirmities that otherwise hovered below the high-profile funding radar.

Until recently, for instance, Parkinson’s disease was just a shaky blip in the National Institutes of Health’s budget, despite the more than 1 million victims of the neurological illness. In 1998, the NIH research funding for Parkinson’s was $41 million (or $41 per person afflicted), compared with the more than $1,600 per person that is being spent to find a cure for the 980,000 citizens currently infected with HIV. Cancer, in its various forms, afflicts 8 million in the United States; as of 1998, cancer research receives $368 per person.

But the way the NIH’s budgetary pie is sliced may be changed by the presence of Doc Hollywood: Michael J. Fox. For eight years, Fox — who jump-started his career in the “Back to the Future” movies and currently stars in the ABC sitcom “Spin City” — hid his Parkinson’s disease from the public, passing off the tremors as Lyme disease or fatigue. When he finally came out, sufferers of Parkinson’s breathed a sigh of relief. Maybe with a star on board, they could get the notice they needed to help increase the funding for treatment and research.

On Sept. 28, 1999, an impassioned Fox spoke before Sen. Arlen Specter and the Senate appropriations subcommittee. “What celebrity has given me is the opportunity to raise the visibility of Parkinson’s disease and focus attention on the desperate need for more research dollars,” declared Fox. “I was shocked and frustrated to learn the amount of funding for Parkinson’s disease is so meager. Compared with the amount of federal funding going to other diseases, research funding for Parkinson’s disease lags far behind.”
When members of the Parkinson’s Action Network (PAN) had spoke before the House Appropriations Committee, almost half the seats were empty. But when Fox appeared, the House was full.

Fox wasn’t the first celebrity to stump before Congress in the hope that a disease that afflicted them or loved ones would be awarded an increase in federal funding. After viewing videotaped testimony from actor Christopher Reeve, the Senate Health Committee in March approved a $1 surcharge on motor vehicle fines to pay for spinal cord research. Reeve, who was traveling and unable to appear in person, told lawmakers that the surcharge would raise more than $2.6 million a year for spinal cord research.

And then there was the appearance of the glamorous Elizabeth Taylor, who spoke out poignantly for HIV and AIDS research dollars. Her pleas were bolstered by the work of AIDS activists like the group Act-Up, who took to the streets, marching and disrupting political meetings. The dividend: well over a billion and a half dollars of NIH money distributed in 1998. And the fact that famous fixtures like Rock Hudson, tennis star Arthur Ashe and Robert (Mike Brady of “The Brady Bunch”) Reed had died of AIDS — or that basketball star Magic Johnson has the disease — didn’t hurt when it came to opening the federal pocketbook.

But celebrities are just part of the whole lobbying strategy. As PAN’s Michael Claeys points out, stars cannot do it by themselves. “The impact a celebrity has for one disease or another does help to make the issue more real. It’s helpful, but not the whole package,” he explains.

The grass-roots package includes letter writing, visits by non-stars to Washington to meet with office holders and continued pressure by constituents on their elected officials, which in the case of Act-Up was substantial. Famous folk are just the icing on the cake — but if fans get motivated behind a star and lobby Congress, more government dollars might be dropped on that celebrity’s favorite cause.

“If you’re not the squeaky wheel, you’re not getting the funding,” says Parkinson’s Action Network’s Phyllis Rosenfeld. To that end, actors and others with illnesses have been trotting down the red carpet to meet and greet the press and Congress.

The executive director of the Autism Society of Los Angeles, Frank Paradise, has worked for a variety of fund-raising agencies over the past 25 years, including AIDS Project Los Angeles. He explains, “Actors traditionally never really could be used to promote fund-raising, until the entertainers [like Elton John] came out to do concerts. That was the forum for actors to come out and speak.” But, he continues, there is still some hesitation. “It’s real easy for celebrities to come out for a disease when their friends are touched. It’s a harder pull when it comes close to home. ‘My mother or my aunt has it, but I won’t say I have had a mastectomy toward helping breast cancer research,’ is the commonly held position.”

Fear of losing one’s livelihood because of an illness often keeps celebrities in the closet over their afflictions. David Lander, best known as Squiggy from the 1970s sitcom “Laverne and Shirley,” hid his multiple sclerosis for 15 years, worried that he would lose jobs if his illness became public. On several occasions he was fired from a show and confronted by producers, he says: “They thought I was drunk, and I was relieved when they told me they thought I was an alcoholic. Hey, I thought, let them think I had a drinking problem. At least they didn’t know I had MS!”

Now Lander traverses the fund-raising circuit, appearing around the country for the MS Dinner of Champions, making personal appearances and attending MS conventions — even stopping in to visit the laboratories that manufacture the drug he takes to help control his symptoms. He looks forward to dropping in on Congress next year to help increase MS research.

The now-outspoken Lander has a few words of wisdom for diseased celebrities — especially the rather morose MS-er Montel Williams, who believes multiple sclerosis is a death sentence. “When you have the bully pulpit, you have to be careful. People will listen to you because you’re that guy on TV.” But, he also stresses, by putting his familiar face on MS, he has helped to raise money from the private sector and to show that MS is not a death sentence at all.

Lander jokes, “I got MS as a career move.” The fully mobile actor also makes a point of letting people in the industry know that his diagnosis was that he would never walk again. “When I tell them that my first thought was, ‘How many roles are there for a 36-year old Jew in a wheelchair?’ they get these looks on their faces like, ‘What if someone said that to me? What would my future be?’”

The “What if it were me?” thought prompts many celebrities to pump up the volume for research into diseases like AIDS, breast and prostate cancer as a prophylactic. However, one hidden killer lags far behind in funding and star power. Hepatitis C infects one in 50 Americans, yet receives only one-tenth the per-patient funding going to HIV/AIDS research. Naomi Judd is hoping to change that. She is spokeswoman for the American Liver Foundation and has founded her own organization, the Naomi Judd Foundation.

A country music queen, Judd was working as a registered nurse in 1983 when she pricked herself with a hepatitis C-infected needle. The retrovirus took hold, and by 1985 the singer was experiencing symptoms. Then, after a liver biopsy in 1995, she endured a successful drug regimen.

“I’m sort of the poster child for hepatitis C,” explains Judd, an admitted clean freak. “I’ve never smoked a cigarette, I’ve never drank a beer, I’ve never done IV drugs. I’ve been monogamous. I’ve never had a blood transfusion, I don’t have tattoos, I have no pierced body parts and I’m a health care worker. I’m female, I’m white, I’m middle class, I’m reasonably intelligent.”

Judd is hoping her image will turn Congress into liver lovers, since the hep C epidemic needs to be eliminated and the funding increased. And despite the disease’s presence throughout the United States and around the world, not a lot of folks are willing to step to the plate and speak out, no doubt because hep C is falsely perceived as a disease that affects only those who are unlike Judd — the pierced, the promiscuous and the perverse.

Drugs and alcohol came to a political forefront when Betty Ford admitted she had a drinking problem, and went on to found the Betty Ford Center. Nancy Reagan went one better, donning a flak jacket and storming a drug house with DEA agents in a war against drugs photo-op. Attempts to save America from drugs and alcohol have beaten a timeworn path to Capitol Hill, but when it comes to saving the children, celebrities prefer to focus on illnesses that affect kids.

One of the most devastating childhood illnesses is autism. Frank Paradise says that celebrities have their value in different ways. “They can give you things for auctions, they can do PSAs” (public service announcements). But others go the extra mile. “Actor Anthony Edwards [of "ER"] has an autistic child. He’s taken an intellectual tack — testifying for more research and funding from Congress. In his own way, he’s taken the cause to another level. But, again, there aren’t very many who would do that.”

In fact, celebrities’ changing lifestyles can conflict with fund-raising efforts. Case in point: Sylvester Stallone. While he was married to his first wife, Sasha, Stallone was active in working for autism, doing benefits and making PSAs. Since the superstar divorced the mother of his autistic child and remarried, he has ceased fund-raising for autism, according to Paradise. “With Sylvester Stallone it’s a tug of war. He did a couple of benefits and we haven’t heard from him since he split up with Sasha. Sasha was more helpful. When Sasha was pushing him, Sylvester Stallone did PSAs and a lot of fund-raisers for [autism].”

And Stallone isn’t the only star making himself scarce around autism. “There are probably more celebrity kids with autism than we know about,” speculates Paradise. Stars in denial fear image-ruining P.R. when affliction hits, and often decline to reach out to an organization.

PAN’s Rosenfeld contends that with the film and media culture, the public feels that they know somebody who has come into their living rooms. “When something happens to them, it’s the tribal instinct. This gives an opportunity for people to feel connected to a famous person. The statistics and numbers don’t mean as much until you put a face on it.”

By putting their best faces forward in Congress, celebrities hope to have an effect on their pet afflictions — not just by meeting the policy makers, but by taking a public stance. PAN’s Claeys explains that Michael J. Fox’s appearance, like that of other celebrities, served a two-fold purpose, “It’s helped raise awareness and publicity. Politicians are aware of publicity. And while Michael’s visit hasn’t translated into specific money yet, it was a tremendous help. Politicians are people, and they tend to be more interested when celebrities speak out. The attention of the press and public is brought into greater focus. And there are those voters who are now motivated and focused. And that will get attention. Politicians have two jobs, to serve the public interest and to stay in office.”

And nothing does both those jobs better than fighting sickness while shaking hands with stars. Charles Robbins — press secretary for Sen. Arlen Specter, R-Pa., who chairs the Senate Appropriations Subcommittee on Labor, Health and Human Services and Education and Related Agencies — says that he has seen the effect of celebrities on hearings. “There is in fact a greater turnout, the media comes out.” And while celebrities help focus attention on an issue, Robbins says, “You can’t make the jump that their appearances help increase funds for a specific illness.”

But celebrities do help increase the number of cameras and microphones that appear. When Specter came to Beverly Hills for a 1996 field hearing on how best to allocate federal medical research dollars, Specter acknowledged the camera crews from several television stations and syndicated shows like “Extra.”

“We had a similar hearing on this same topic in Philadelphia, and it didn’t attract much attention. But we have a different situation today,” he said in a UPI report. Along with meeting Paula Poundstone to discuss AIDS and Victoria Principal to talk about about domestic violence, the senator heard from “Seinfeld’s” Jason Alexander, “China Beach’s” Dana Delany and Bob Saget, star of “Full House” — all three of whom wanted to make sure the senator allocated funding for research into scleroderma. Scleroderma, which hardens the skin and affects internal organs, afflicts Alexander’s sister and caused the death of Saget’s sister. Saget had just completed producing and directing a TV movie “For Hope,” loosely based on his sister’s battle with scleroderma, that starred Delaney.

The celebrity show of force was important, said Alexander in the UPI article, because scleroderma was such a little-known disease — despite the fact that it affects 550,000 Americans, most of whom are women in their child-bearing years. “The people who gather funding are not well versed in [scleroderma], so you kind of need people to draw enough attention to it. And in this country, in this day and age that tends to be celebrities. We are all personally affected by it. It’s a personal concern.”

That day in 1996, Sharon Monsky, founder of the Scleroderma Research Foundation said that the effect celebrities have is usually intangible. “But today there was real money on the table, and these guys made a difference. [Specter] has power to direct money to research that will literally save many, many lives. And these celebrities helped us make an impact.”

And what an impact they made. Eighteen months later, in December 1997, the first specialized center of research in scleroderma was established at the University of Texas Health Science Center in Houston through a grant from the National Institute of Arthritis and Musculoskeletal and Skin Diseases, part of the National Institutes of Health. Total funding for the four-year grant was $3.5 million, which includes support from the NIH Office of Research on Women’s Health.

Others argue that funding shouldn’t be affected by celebrities or personal interest. Rep. John Porter, R-Ill., is the chairman of the House Appropriation Subcommittee on Labor, Health and Human Services and Education and Related Agencies, and thus Specter’s counterpart in the House. Though his wife suffers from diabetes, Porter refuses to earmark specific funds for research into that or any other disease. “As a matter of principle, congressman Porter will not set aside funding of research into specific afflictions, even though it could impact his wife’s illness,” says spokesman David Kohn. Additionally, states Kohn, Porter feels that politics should not be inserted in the spending of NIH research dollars; he believes that the NIH has a peer review process for research grants, and that the institutes understand how best to spend their funding. Porter strongly opposes specifying how the NIH should spend its budget, feeling that to do so would interfere with the NIH and its processes: “Congress should not put political judgment before scientific and medical judgment,” Porter says.

“But once a bill goes from the House and gets to the Senate,” explains Kohn, “Earmarks get added. There is real human suffering at the heart of [the senators'] efforts. It’s not just vanity. With the best of motives, senators work on issues that affect them, their constituents or members of their families. They try to make a difference and advance the work within a specific disease. The constituent factor plays into any decision by Congress, but the celebrity factor is overblown.”

“It’s an actual reality that celebrities are given an odd kind of royalty in our world,” commented Saget at 1996 congressional field hearings in Beverly Hills. “And this is one of those times that I say, ‘Thank God for celebrity,’ because you get people from government who actually sit down and listen to you because they like you. They know you’re at least pseudo-intelligent. You may not be a genius, but at least they acknowledge your presence.”

And that presence can resonate far beyond the television set, into research labs and hospitals around the nation.

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MATCH THE STAR WITH THE SICKNESS

The following celebs are either afflicted with and/or raise awareness for a specific disease.

1. Kenny Rogers a. HIV
2. Mary Tyler Moore b. autism
3. Ann Jillian c. erectile dysfunction
4. Doug Flutie d. hepatitis C
5. Debbie Reynolds e. diabetes
6. Magic Johnson f. breast cancer
7. Bob Dole g. osteoporosis
8. Muhammad Ali h. Parkinson’s

ANSWERS: 1d; 2e; 3f; 4b; 5g; 6a; 7c; 8h

Los Angeles writer Mark Ebner has written for Spy, Premiere and Details. This is his ninth Sundance festival.

Lisa Derrick is the nightlife and advice columnist for New Times Los Angeles.

AIDS: Why Africa suffers for the West’s sins

Craig Timberg talks about the colonial origins of AIDS and the legacy of distrust between Africa and the West

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AIDS: Why Africa suffers for the West’s sins

As a lens to explore the complex and deeply fraught relationship between Africa and the West, the AIDS epidemic is as revealing and disturbing as it gets. Born in colonial Africa and discovered in gay America, the devastating rise of AIDS has been fueled in no small part by the clash of cultures that played out over the past 130 years or so between Africa, Europe and the U.S. — and the rivers of resentment those conflicts have sown.

“Tinderbox,” an insightful new book from a journalist and an AIDS researcher, tells the story of the epidemic from its birth in colonial Congo — where it lingered undetected for decades — to its sudden spread around the globe in the 1980s, to its status today as the object of a global public health war directed from Washington and Geneva and targeting Africa, home to some 70 percent of all AIDS cases today.

Narrating this disturbing tale are Craig Timberg, former South Africa bureau chief for the Washington Post, and Daniel Halperin, an epidemiologist, AIDS researcher and former advisor to the U.S. government’s anti-AIDS program. Timberg met Halperin in the middle of his five-year stint as the Post’s Johannesburg bureau chief and the two began exploring questions that had bothered Timberg since his arrival in South Africa.

Timberg, now back in Washington as the Post’s deputy national security editor, spoke with Salon about the book.

Perceptions about the origins and spread of AIDS have changed over time in fascinating ways. First, it was seen as a gay disease. When it was detected in Africa, people assumed it came from the West. Over time, scientists showed it originated in Africa, a notion rejected by many Africans but in keeping with Western notions about third-world diseases. You show in the book that AIDS arose as a result of sweeping changes in social structure brought to Africa by European colonialism. Describe its origins.

Scientists have known for more than a decade that the version of HIV that has caused almost all cases of AIDS is virtually identical to a virus common in central African chimpanzees. That’s not controversial. The location of the transmission was determined by a group of scientists who narrowed it down to chimpanzees living in southeastern Cameroon by collecting their feces, detecting the virus and comparing it to other strains collected elsewhere. Michael Worobey from the University of Arizona and his team mapped the genetic structure of pieces of HIV from all over the world, looking at the extent of mutations between them. They were able to make assumptions about how many years it would have taken to produce these changes. The time frame puts you close to the turn of the 20th century for the original virus, the ancestor to all modern HIV.

How was the spread of AIDS to humans linked to colonialism?

In southeastern Cameroon, at the exact moment scientists now believe HIV entered the human population, you had steamships going up rivers that never had steamships before. You have porters who are virtually human pack animals carrying ivory or gear for colonial companies through dense forests. One of those porters would have been the first human to contract HIV. It looks like HIV goes from the chimp population into a hunter who cuts himself while butchering a chimpanzee for food. It then spreads in a localized way along these porter paths and colonial trading posts and eventually comes down river on a steamship into Kinshasa, then called Leopoldville, the first major city in that part of the world.

And that leads to what you call the Big Bang – when HIV explodes and moves out of the Congo.

That’s right. A single spark emanating from southeastern Cameroon works its way to colonial Leopoldville. But HIV doesn’t spread fast on its own. It needs particular conditions to race through a population and Leopoldville had them. It was big and growing fast. It had a high concentration of men working in factories, separated from their wives and girlfriends. It had an emerging population of sex workers and transport to get people back and forth. Gonorrhea, syphilis, chlamydia spread like wildfire; HIV doesn’t but starts to spread along railroad lines, porter paths and rivers during the early and middle part of the 20th century. When scientists look at the genetic structures of different types of HIV they all seem to have come from a single piece of ancestral HIV that existed in Leopoldville at the beginning of the 20th century.

So HIV lingered in small numbers of people but doesn’t exit this area. When researchers go back to blood samples collected during the 1976 outbreak of Ebola virus, they find HIV.

Yes, so in the middle part of the 20th century about 1 percent of adults in major population centers of the Congo had HIV. Before they died, they developed symptoms of other familiar maladies—pneumonia, tuberculosis, wasting. It wasn’t obvious there was a new epidemic loose in the land until gay men in the United States started getting sick in the early 1980s. Before that, it didn’t spread far and it didn’t spread fast. The reason seems to be that in colonial Congo, the majority of adult men would have been circumcised and circumcised men are much less likely to contract HIV and pass it on. It’s only when HIV makes its way out of the Congo River basin to other places more hospitable to its spread that we get a true explosion.

Many people assume AIDS must be a disease of poverty. But you argue that wealth, modern transportation and economic development were key factors that allowed AIDS to break out.

When I first went to Africa as a correspondent in 2004, I carried this question with me: Why is HIV so severe in some places and not in others? Logic said: Africa, poverty, poor medical systems — there had to be a connection. But when I started traveling to different countries I discovered that most truly outrageous hellholes — places with warfare and incredible poverty — didn’t have much HIV. Other places with modern transport and sophisticated economies had a lot. When I met my co-author, Daniel Halperin, it began to come together. I saw that while being poor and having HIV is certainly a very bad thing because you’re more likely to die when you can’t afford medicine, some degree of economic activity actually makes you more vulnerable. When the epidemic starts spreading widely in some African societies it’s in the cities. Wealthier people — doctors, teachers, politicians, singers — get HIV in completely disastrous numbers. Some of that has to do with access to resources and multiple sexual partners.

You begin with a chapter on the city of Francistown, Botswana, an affluent place with a horrendous HIV rate. What struck you about Francistown?

I drove to Francistown for the first time in 2006 and it felt like driving into anywhere, USA. I could buy a hamburger at Wimpy’s, order a shot of espresso. There were cafes and ATMs. Yet it had this horrendous HIV rate. Among women in their 30s, two-thirds were infected. The picture of poverty before HIV didn’t add up. When you scratch the surface you begin to realize that other factors — human movement, transport, sexual behavior, circumcision or lack of it — are decisive in how the virus spread.

You describe the AIDS belt, an area in southern Africa at the very heart of the African epidemic. What are the characteristics that made it, as you call it, a tinderbox?

There’s a giant swath of the continent that starts at the southern end of Sudan, goes down through east Africa to South Africa and out to the sea where you have this combination of sexual networks and low rates of male circumcision. Together they produce the tinderbox. Two centuries ago most of Africa had polygamous societies in which the richest, most powerful men had multiple wives. In contemporary Africa, in part because of that tradition and in part because of the ravages of colonialism and migratory labor, many men and women have more than one sexual partner over the course of a week or month. But to be part of the AIDS belt, you need one more thing: low rates of male circumcision. The people who migrated down the Nile River basin from Sudan never had circumcision as part of their tradition. In the southern part of the continent, it was a tradition pretty much everywhere until about 200 years ago when some ethnic groups began to give it up. In those places you see HIV rates of 10, 15, even 25 percent.

Why is circumcision effective and why was early evidence of its power missed?

A man’s foreskin is unusually vulnerable to HIV; the skin is thinner, softer and more easily penetrated by HIV and other pathogens. When it’s removed, the remaining skin is rougher and more resistant to infection. That makes no difference if you’re a gay man who is the receptive partner in anal sex. But the African epidemic is spread predominantly through heterosexual sex, particularly vaginal sex, and circumcision is crucial. Circumcised men are at least 70 percent less likely to get HIV. This science first began to appear in the mid-1980s.

That’s three decades ago!

That’s right. That data seemed to offer this miraculous new insight. But the global public health community was deeply uncomfortable with the subject. It took another 20 years to come up with evidence so definitive they accepted it. Peter Piot, one of the central characters in the AIDS response, was part of that research team. Yet during all the years he was head of UNAIDS he was not enthusiastic about this science. To be fair, establishing correlation is not the same as establishing causality. And it’s a pretty serious thing to contemplate altering men’s penises if you’re the global health community.

One area of culture clash between global health agencies and Africa is over condoms. What happened?

People who had watched AIDS in the U.S. were mindful of the way condoms seemed to slow the spread of HIV there and especially in Thailand, where the epidemic was transmitted mainly in brothels. It was hard for those officials to understand how different the African epidemics were. In several places, Africans were saying, “Hey, our best chance for surviving is for people to have fewer sex partners at a time.” But Westerners had condoms on their minds. The U.S. government and other organizations made a huge bet on condoms and reasoned that if you could just get enough of them to people in vulnerable places you could reverse the epidemic. Instead, reported usage of condoms in some African societies went to rates far higher than anywhere else but HIV also went up. That puzzled people until it became clear that people were using condoms with prostitutes or one-night stands but not in long-term relationships with their husbands, wives, boyfriends or girlfriends. And that’s how HIV is most likely to spread.

Uganda emerged in the early days of the epidemic as a place that took effective action, changed people’s behavior and lowered HIV transmission. 

In 1986 a new government took over and confronted the facts of AIDS. They knew it was fatal, they knew it was incurable, they knew it was spread by sex, and they knew a lot of people already had it. So political, religious and cultural leaders focused on changing the sexual behavior that was at the core of HIV’s spread. The most famous terms for this was zero grazing, a metaphor that worked well in an overwhelmingly agrarian society. When leaders said zero grazing, Ugandans understood at an intuitive level that having sex with your primary partner is much safer than having sex with a primary partner and others. If a large number of people make a relatively small change in their number of sex partners it can make a massive difference in the spread of HIV. That’s what happened in Uganda and hundreds of thousands of lives were saved.

Why were the powers that be in global health so reluctant to focus on behavior change?

The global health infrastructure was uncomfortable talking about differences in sexual behavior. That’s a shame because a sexually transmitted epidemic is by definition spread by sex. To understand why it’s worse in some places than others you have to dive into some inherently uncomfortable questions about a very private matter.

Yet there was historical evidence here that changing behavior made a difference. San Francisco closed the bathhouses and it helped. In New York, behavior changes led to lower rates of anal gonorrhea in the early days of the epidemic.

Those changes were instituted within coherent communities. Gay men advocated the closing of bathhouses and made the choice to have fewer partners or use condoms. In Africa that process was hampered by the slowness to accept that AIDS was real and the fact that people are understandably resistant to being told what to do by a large and powerful outside force. Many of these societies need our financial aid, our technical assistance to do things that matter to them, including improving public health. The tension over how much to listen to outsiders while not wanting to be told what to do has troubling consequences that have infused the world’s response to AIDS in all sorts of ways.

What lessons do you draw from the way the epidemic has been addressed in Africa?

The overriding lesson is that sex matters. Those of us who care about people getting this terrible disease can’t be squeamish in discussing sexual behavior because we’re afraid of how it makes us look. The research has to be good, the messaging has to be forceful and clear. It’s not enough to tell people to use condoms all the time because the evidence after more than 30 years is that people don’t, not often enough to be truly decisive. We also have to be willing to engage in questions about how many partners people are having, we need to tell people that from the viewpoint of sexually transmitted infections, anal sex is more dangerous than vaginal or oral sex. These things are uncomfortable to talk about. At the same time, if we take seriously the moral question of trying to prevent as many infections as we can, we can’t be frightened of these subjects.

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Rob Waters writes about health, mental health and science from his home in Berkeley, California. His investigative feature in Mother Jones, “Medicating Aliah,” examined pharmaceutical industry influence over prescribing guidelines and won the Casey Award in 2006. His articles have appeared in Bloomberg Businessweek, Mother Jones, Health, Reader’s Digest and other publications.

The new AIDS crisis: Funding

Scientists believe they can finally stem the epidemic, but money is a major obstacle

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The new AIDS crisis: Funding (Credit: Reuters/Yiorgos Karahalis)
This article originally appeared on GlobalPost.

KISUMU, Kenya – Thirty years after the discovery of AIDS, scientists believe for the first time that they now have the tools to beat back the deadly virus.

Global Post

The evidence is found in HIV prevention research conducted here on the shores of Lake Victoria and in several other parts of sub-Saharan Africa, long the epicenter of AIDS. The most notable research discovery stems from the HIV Prevention Trials Network 052 clinical trial, a U.S.-funded, nine-country study that found early treatment reduced the risk of HIV transmission to an uninfected partner by 96 percent.

The 052 results – announced to a standing ovation in Rome at the International AIDS Society conference in July – was one in a line of recent breakthroughs, including the benefits of male circumcision to prevent infection, and smaller conceptual advances in an HIV vaccine candidate as well as with microbicides, or gels used by women to stop transmission.

But the gloomy global economic situation, and recent scale-backs in HIV funding around the world, have cast great doubt as to whether policymakers will take advantage of the combination of new prevention tools to fight AIDS.

This collision of scientific advances vs. economic realities also comes at a heightened political moment of the U.S.’s own making: Secretary of State Hillary Rodham Clinton earlier this month called for an “AIDS-free generation,” and the United States’ actions on AIDS will be in the spotlight during next July’s International AIDS Society conference in Washington, D.C., which is being held in the U.S. for the first time in 22 years due to the Obama administration’s decision last year to end U.S. entry restrictions on people who have HIV. The conference is expected to attract more than 25,000 people from around the world.

President Obama is expected on Thursday — World AIDS Day — to talk about his administration’s next steps on AIDS, following Clinton’s speech. This would be his first major speech on AIDS as president; he has remained largely silent on all global health issues. Even when Obama announced a bold new Global Health Initiative, the White House put out only an eight-paragraph statement.

“The terrific science in the last year is coming up against the fiscal constraints,” said Chris Collins, vice president and director of public policy amfAR, the Foundation for AIDS Research. “It is going to take choices. That is the big challenge for policymakers in the next couple of years: How to get above the day-to-day politics here and use the resources as strictly as possible. We now need to hear our president articulate his policy action plan for an AIDS-free generation.”

Several sources within the Obama administration said in interviews that Clinton’s speech at the National Institutes of Health was at least partially spurred by the realization that next year’s AIDS conference will shine a spotlight on the U.S. commitment to fighting the virus, both globally and domestically. The idea was that the United States will be able to report back to the conference on its plan of action globally, while also speak about ongoing research in several U.S. cities about the most effective ways of finding those who are infected and then putting them on treatment.

In the meantime, Obama’s top scientists are urging that the research discoveries to prevent HIV transmission are put to use. The one in the forefront is the best known of all: Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, who has advised U.S. presidents since Ronald Reagan on how best to address AIDS.

“All of a sudden we have a convergence of prevention approaches, which includes treatment as prevention, and that really validates the concept of combination prevention,” Fauci told GlobalPost in an interview earlier this month. “There is now an enthusiasm and an excitement if we can implement some of these scientific advances, we can have a major impact in turning around the trajectory of the epidemic.”

Fauci said that future modeling of the AIDS epidemic shows that if prevention tools are effective and if fewer people are infecting others, a precipitous fall in HIV infections could follow. Then, he said, the whole arc of the epidemic could crumble.

“When we can get the incidence of HIV down enough to turn the trajectory of the pandemic, it will assume a momentum of its own in diminishing HIV,” he said.

“That’s because the fewer people who are transmitting infection and the more people who are trying to protect themselves from infection – those are the two arms of the problem – that diminishes the pool of people capable of infecting the other people.”

A UNAIDS report released last week concluded that the global expansion of AIDS treatment has made a significant difference in terms of saving lives and almost surely in preventing infections. It estimated that new HIV infections were reduced by 21 percent since 1997, and deaths from AIDS-related illnesses decreased by 21 percent since 2005. It also found that 6.6 million people were on life-extending antiretroviral treatment in 2010, an increase of 1.35 million from the previous year.

Given the findings of the 052 study, scientists and researchers said that the more people who are put on treatment, the more infections will be averted. The experts said that funding isn’t the only issue. Another key one is making sure the prevention strategy matches the specific epidemic in a country.

“Funding is not enough today and probably will never be adequate,” said Robert Hecht, a principal and managing director at Results for Development who has done extensive modeling on what will happen in various scenarios with AIDS funding.

He continued: “What will be important is getting some of these countries to recognize that if they don’t have all the money they need, they need to target programs for the high-risk groups. If you had to choose, say, between a few more dollars for sex education in the schools, or spending it more to reach gay men, or injecting drug users, the countries would be better to use it in the latter programs.”

In Kisumu, the principal city of western Kenya, with a population of roughly 500,000, the 052 trial was stopped in May because it was working so well that researchers felt it was no longer ethically defensible to keep a control group on placebos. Dr. Lisa Mills, the principal investigator for the western Kenya part of the study, and chief of the HIV Research Branch at KEMRI-CDC (a long-time collaboration between Kenya and U.S. researchers), said the Kenyan government already had started people earlier on treatment, but she and others hoped that more funding would allow for another expansion.

“The modeling shows that the amount of funds used for treatment would be much lower by 2015 if you started earlier,” Mills said. “And 2020, there would be a huge savings. There is an increase in start-up costs, but with the costs of the drugs gradually dropping, more efficiencies in treatment, and a reduction in new infections, including pediatric infections, all those add up to fewer people on treatment” in a few years.

Mills said that in fighting AIDS, like other epidemics, “the real issue is when you turn off the tap,” referring to stopping the numbers of new infections. “When you have fewer and fewer new people getting infected every year, turning off the tap starts to happen,” she said.

Kayla Laserson, the director of KEMRI/CDC Research and Public Health Collaboration, said the AIDS research is part of a multi-pronged global health research agenda aimed at finding new drugs, vaccines, and diagnostic tools for a host of diseases. “We have the 052 trial here, but we also have the malaria vaccine trail, and the site for a TB vaccine trial, and many others,” she said. “We see how we make an enormous impact because the results from the community we serve are all around us.”

In the nearby village of Ematsayi, Peter Owiti Omotsi, 39, a father of five, is one of thousands of people in the region now on antiretroviral drugs to fight AIDS. He started treatment in 2008. His wife was HIV negative at the time of his diagnosis, and she has remained negative, he said. Omotsi said the drugs, plus changes to improve the nutrition in his diet, have made him much healthier.

“These drugs work,” he said. “I believe before I die, I will see my grandchildren. Without these drugs, that probably wouldn’t happen. But I have some years to live now. I can at least be proud of my grandchildren.”

In the months and years ahead, the U.S. government will need to make decisions on whether to expand AIDS treatment in the United States as well as around the world to people who are infected but are not acutely ill from the disease. No one is making any promises yet. But no one doubts either that the range of prevention approaches now available, taken together, create a new, powerful weapon to halt AIDS.

“In the last year or so, we have enough scientific advances so that we can start to see some significant turnarounds in the trajectory of the pandemic,” said Fauci, the longtime U.S. AIDS researcher. “But it’s not going to happen alone. We’re going to need a lot more host-country involvement, we’re going to need other donors, we’re going to need to be more efficient in what we do with the resources that we have. Now is a critical time in the history of the AIDS pandemic.”

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John Donnelly is a reporter for Defense Week.

The worst state in America to have HIV

Backward laws and ignorant legislators make Mississippi an especially deadly place to be sick

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The worst state in America to have HIV (Credit: jocic via Shutterstock)

Recently, an elderly woman in Mississippi was left alone on the curb outside a hospital emergency room. The woman didn’t have a medical emergency. She’d been dumped by the nursing room employees who had learned that she had HIV, according to a lawyer at the Mississippi Center for Justice to whom she was eventually referred.

Mississippi’s neighbors have been known to thank God for Mississippi — when your state ranks 48th or 49th in just about every sad statistic about health or poverty in America, it’s nice to know you’ll always look better than someone. The state’s indicators for HIV and AIDS are about as horrific, although the 9,546 people in the state reported to have the virus probably aren’t particularly grateful about it.

The state has the highest new infection rate and greatest percentage of people living with HIV in the country, and by many measures, the least interest in helping them. Elsewhere, HIV/AIDS has become manageable with anti-retroviral therapy, but a Mississippian with HIV/AIDS is almost twice as likely to die than the average American with the virus; HIV-positive African-Americans in Mississippi are ten times as likely to die from it than their white neighbors. African-Americans are only 37.5 percent of the population, but represent 78 percent of new HIV infections. Meanwhile, an abstinence-education statute forbids even programs offering information about condoms to demonstrate how to use them, but does include a requirement to mention the anti-sodomy laws still on the books.

Combine racism and political indifference to poverty with homophobia — there’s been a rapid rise in infections among young men having sex with men in the state — and you’ve got a public health disaster that state politicians mostly ignore, or worse. ”I’ve been called a nigger and a faggot by state legislators right in the Capitol,” Alonzo Dukes, executive director of the Southern AIDS Commission in Greenville, Miss., told Human Rights Watch for a recent report. One of the few advocates for people living with HIV, state Rep. John Hines, says in the same report, “Legislators in Mississippi don’t see it as a public health crisis; they see it as a punishment for an unhealthy lifestyle.” The state contributes only $750,000 towards HIV/AIDS programs, out of a budget of $4.9 billion.

In other words, there’s very little to prevent employers and housing providers from discriminating against people with HIV, especially because the state doesn’t have any anti-discrimination laws and Mississippi also ranks 49th in funding civil legal services for the poor, according to the state’s Access to Justice Commission.

Even those who can afford a lawyer might have trouble. “I’ve heard stories of even lawyers turning clients away when they have AIDS,” says Marni von Wilpert, a fellow with the Mississippi Center for Justice. “People think they can get it from handshakes or hugs.”

Human Rights Watch also indicted the state for “punitive, stigmatizing, and discriminatory policies that undermine efforts to reach the population’s most vulnerable to HIV … leav[ing] people with HIV/AIDS without treatment at rates comparable to those in Botswana, Ethiopia, and Rwanda.” Advocates report hearing stories of public health officials showing up at workplaces and homes without any regard for confidentiality — terrifying in small rural communities where the stigma of HIV is brutalizing.

Robin Webb, executive director of A Brave New Day, which provides support services to people with HIV/AIDS, says this fans long-standing mistrust of government medical services in the African-American community going back to the Tuskegee syphilis studies. “The government actually plays out that whole Tuskegee scenario when it becomes a punitive force. The way they handle public health is all about authoritative punishment.” They are also terrified of what will happen to their lives if their infection is discovered. ”The No. 1 punishment is to kick people out of the church,” says Webb. “These are the people who talk about Jesus and the lepers.”

One MCJ client, admitted to the hospital for seizures, woke up to discover the doctor had informed a relative, in violation of medical privacy laws, that the patient had AIDS.  ”People are not going to seek care if they think everyone in their family is going to find out,” says Von Wilpert. Meanwhile, Von Wilpert says, the state has chosen only to distribute free AIDS drugs at limited Department of Health locations. “People are traveling two or three counties over to even get the drugs,” she says — or not traveling at all.

The good news is that advocates believe they have an ally in the state’s new STD/HIV director, Nicholas Mosca. Von Wilpert and her colleagues are launching a new medical-legal partnership program, as well as an office in the hard-hit Delta region. Webb, who grew up in the Delta but lived in New York during the AIDS crisis and subsequent activism, says he’s trying to import that language of empowerment and self-management to his home state, and try to undo the shame and stigmatization. “I think most of us realize that diseases, especially lethal diseases, love secrets,” he said.

 

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Irin Carmon

Irin Carmon is a staff writer for Salon. Follow her on Twitter at @irincarmon or email her at icarmon@salon.com.

The art of the AIDS poster

A new collection shows 30 years of fascinating, frustrating, beautiful attempts to educate the world about safe sex SLIDE SHOW

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The art of the AIDS poster

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Each of the more than 6,000 images in Dr. Edward Atwater’s peerless collection of AIDS-related posters — now owned by the University of Rochester’s Rare Books and Special Collections Library — freezes its viewer at a particular social, cultural, political and geographical point in the 30-year history of the disease.

Some of the posters are provocative, explicit or overtly sexual; others are straightforward, tame — even prudish. Some rely on shock-and-awe tactics to make a general point; others offer detailed advice for HIV protection. Some, created in the 1980s or ’90s, are already very clearly dated; others are triumphs of evergreen design. All offer glimpses of past understandings of the disease, its dangers and its prevalence.

The posters themselves hail from more than a hundred different countries — translating fears, concerns, misconceptions and public service announcements into languages as familiar as English and Spanish or as exotic as Latvian, Slovakian, Hebrew and Icelandic. What connects them is the wide-ranging interest (and prodigious curiosity) of Atwater himself — a former professor at the university’s medical center — who donated his collection to the institution several years ago in the hope that its contents would continue to educate viewers about the disease and its history.

Almost 1,500 of Atwater’s posters have so far been made available on the university’s browsable online database, and more are being added continually. See some of the highlights of the collection in the slide show that follows — and then head over to the database itself for further browsing.

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Emma Mustich is a Salon contributor. Follow her on Twitter: @emustich.

The terror of a bogus HIV test

After a false-positive shut down the porn industry, an actress opens up about her testing scare

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The terror of a bogus HIV test

The details of how a bogus test result reportedly shut down the billion-dollar adult industry for a week are still shrouded in secrecy — but porn actress Dylan Ryan says she understands what the performer, known as “Patient Alpha,” must be feeling. That’s because she experienced firsthand the terror, and unparalleled relief, of a false-positive HIV test.

It happened before she entered the business, so she has unique insight on both the adult industry and what it’s like to experience an HIV scare as a non-performer. Eight years ago, she went to a reputable testing site in San Francisco — she was starting a new monogamous relationship and wanted to play it safe. They gave her an FDA-approved rapid fingerstick test that can turn around results in a mere 20 minutes — but 40 minutes later she was called into an office by a man “who had a worried look on his face,” she said in an email. He told her she had a positive result — but, as she started to cry, he added that a confirmation test, which would take a couple of days to process, was still needed. “It felt terrifying but also like it couldn’t possibly be,” she said. “I ran through all the possibilities over and over.”

She debated whether to tell anyone and ultimately decided against it: “It felt too shameful, too scary and if there was a chance I wasn’t positive, I wanted to hold on to that for as long as possible. I dreaded having to call partners and possibly tell and then lose my new person.” When the test results came in, she was called into the office and “sat in the waiting room, feeling like I was going to vomit at any moment,” she said. “I could have sworn that everyone was staring at me.” The same counselor from before called her into the same room where she had received the bad news just days before, but this time, as soon as he shut the door, he said, “I have good news.” Ryan started to cry, “even harder than the last time I was in the room,” she says.

False positives can arise because of certain medical conditions (like lupus, Lyme disease and syphilis), sample contamination, or clinicians’ failing to follow proper follow-up protocol. It’s estimated that the enzyme-linked immunosorbent assay (ELISA) test, which is currently the standard screening approach for the general population, has a false-positive rate of one to five per 100,000 tests. ELISA is sensitive enough that if someone gets a negative result, a follow-up test generally isn’t needed — but a positive result always calls for a confirmation test, most often by the more targeted Western blot test. That brings the rate of false positives to roughly 1 in 250,000 cases, according to the AIDS charity AVERT. The adult industry has relied on a different test with a smaller “window period” between exposure and possible detection: The pricey and specialized PCR/DNA technique can yield results as early as two weeks after exposure by detecting HIV itself rather than the antibodies caused by the virus.

The Free Speech Coalition, the organization currently working to create a new testing system following the bankruptcy of Adult Industry Medical (AIM), hasn’t revealed any specifics about how the performer in question received a false positive. Most have chalked that up to respect for patient confidentiality or the chaos of a business in transition, although one conspiracy-minded pornographer has suggested it’s a coverup. One thing is certain: Uncertainty and paranoia isn’t unusual following a false positive.

“I wouldn’t wish that on my worst enemy,” Ryan said of her experience with a false positive. “I know that testing has improved exponentially since [then] and I am glad that fewer people will experience that kind of momentary life upheaval.”

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Tracy Clark-Flory

Tracy Clark-Flory is a staff writer at Salon. Follow @tracyclarkflory on Twitter.

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