Why Brazil's Response To AIDS Worked
As we mark the 30th anniversary of the CDC's official reporting of the HIV/AIDS epidemic, it's surprising to see which nation has fared the best in response. It's not the United States; it's not China, India, or even Russia ... It's our good friend to the south, Brazil.
I first began to learn about Brazil's success as a doctoral student investigating the impact of AIDS on politics and society in the developing world. Surprised by Brazil's early response to the epidemic, especially when compared to other nations, I tossed my laptop into a backpack and set out for Brazil.
After several trips to cities throughout the country, interviewing AIDS patients, health officials, and activists, it gradually became clear that the government was indeed fully committed to eradicating AIDS, in turn proving to the world that it had the technical capacity and political commitment needed to do so.
As evidence of Brazil's success, consider the following. Aggressive national prevention campaigns for high-risk groups have contributed to a sharp decline of HIV/AIDS cases in Brazil. Because of the creation of national prevention programs targeting gay men and women, in 2002 and 2007, respectively, Brazil has seen a dramatic decline in HIV/AIDS cases among gay men, from 3,376 in 1996 to 647 in 2009, and among women, from 7,419 in 1996 to 2,034 in 2009.
In contrast, infection among the highest at-risk groups in the United States, currently African Americans and gay men, remains elevated: in 1998, 20,672 new cases were reported among African Americans, increasing to 21,549 in 2009, while 17,357 cases were reported for gay men in 1998, falling only to 14,383 in 2009.
Considering the fact that Brazil was a military dictatorship with a highly unequal distribution of health care coverage less then 20 years ago, how did it pull this off?
Start by following the money trail. Brazil's allocation of congressional funding, while lower than in the United States, has risen steadily. From 2000 to 2007, the Brazilian congress nearly doubled the amount committed to fighting AIDS -- from 713,000 Brazilian reais to 1.3 billion in 2007. (A real is worth approximately 63 cents.) U.S. spending has risen at a slower rate.
Brazil has also done a better job at providing AIDS medication. In 1996, the Congress passed a federal law mandating the universal provision of antiretroviral (ARV) medication. National spending for ARV medications has burgeoned from 25 million reais in 1996 to more than a billion reais by 2009.
In contrast, the United States has consistently fallen short of guaranteeing access to medicine. According to a report released by NASTAD (National Alliance of State & Territorial AIDS Directors) last month, there is a waiting list of 8,100 individuals in need of ARV medication.
Realizing that cities were in need of funding to help fight the disease, Brazil's national AIDS bureaucracy also created new programs to provide support. In 2002, the national bureaucracy created the Fundo-a-Fundo Incentivos program, which provides monthly grant allocations to cities demonstrating need. Funding for this program has increased from 579,000 reais in 2003 to 1.5 billion reais in 2010. In the United States, by contrast, the Congress and CDC have not created new fiscal programs assisting cities; the last time the United States created one was in 1993 - Ryan White/CARE.
Brazil's national AIDS officials learned early on that they needed to work closely with civil society in order to successfully combat AIDS. Beginning in the mid-1980s, the government invited gay activists and nongovernmental organization representatives into the national AIDS bureaucracy to help devise policies and learn more about the virus and about health care needs.
Activists clamoring for universal access to medicine under the military during the early 1980s were also incorporated into the AIDS program, in turn leading to the rise of bureaucrats who were unwaveringly committed to the free distribution of ARV medication. While the CDC also reached out to AIDS activists during the 1980s, it never went as far as to officially incorporate them into the agency.
But Brazil's unique political situation also helped. In 1985, Brazil transitioned from a repressive military dictatorship to a vibrant democracy. Access to health care as a human right was penned into the 1988 constitution.
Consequently, when AIDS emerged, the government was essentially forced to do whatever it could to guarantee access to medicine and health care. When short on cash, these commitments forced the national AIDS bureaucracy to engage in intensive bargaining negotiations with pharmaceutical companies to lower prices for drugs.
If they failed to reach agreement, the pharmaceutical companies faced the specter that Brazil would produce and distribute generic versions of their patented medicines.
Ongoing praise for Brazil's success has further strengthened the government's commitment to AIDS. As a result of winning the Bill & Melinda Gates Foundation award for the best model response in 2003, echoed by UNAIDS in 2004 and receiving praise by CNN's Dr. Sanjay Gupta as the "envy of the world" in 2009, the government has been incentivized to increase its commitment to the epidemic.
Why Brazil's AIDS response is "envy of the world" Video
But this has also motivated the government to help African nations develop the capacity needed to produce ARV medications while using the international community's praise as a platform to address other related issues, such as poverty alleviation, human rights, and even biofuel technology.
(The United States has contributed its share to Africa. In May 2003, Congress provided $15 billion over five years for President Bush's plan to fund the distribution of ARV medication in Africa and the Caribbean, the largest bilateral contribution to AIDS in the world. The program was re-authorized for another five years in 2008.)
Though unique in its history, culture and scenic beauty, Brazil nevertheless provides a lesson just as big as the country itself: Fully protecting your people from HIV/AIDS not only advances their health and progress, but it can also advance your government's image and influence as an emerging global power. –
CNN Opinion
Editor's note: Eduardo J. Gómez is an assistant professor in the Department of Public Policy & Administration at Rutgers University at Camden. The opinions expressed in this commentary are solely those of Eduardo J. Gómez.
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HIV in the '80s: 'People Didn't Want To Kiss You On The Cheek'
On June 5, 1981, the virus that would become known as HIV was mentioned for the first time in a medical publication. As we approach that anniversary, CNNHealth takes a look at 30 years of the epidemic that changed the world, through the eyes of people who've lived it.
In 1985, Edmund White had five or six published books behind him, a Swiss lover with him and the outcome of an HIV test ahead of him. When the results came in, White told his partner:
"I'm a good enough novelist to know how this is going to work out. I'm going to be positive, you're going to be negative, you're going to be very nice about it, but you're going to break up with me within a year."
By many accounts, White is a good novelist -- a great one, actually, having written numerous acclaimed works of fiction and nonfiction.
Unfortunately, his storytelling sensibility foretold how the HIV tests would turn out and how he would lose his lover because of the dire prognosis: only two or three years left to live.
Like so many gay men in the 1980s, White struggled with an illness that seemed like a death sentence and isolated him from those who feared contagion. But he didn't let himself be defined by his illness, nor did he try to hide it.
Through his activism, writing and public appearances, White gave a voice to so many of his peers who were afraid to announce their status and a memory for the hundred-some friends he has lost to AIDS over the past 30 years.
The price of free love
For many, HIV marked the end of what has been called the "Golden Age of Promiscuity." After the Stonewall riots of 1969, when gays fought back against a police raid at a bar in New York's Greenwich Village, gay activism exploded across the country, and social life became more open. And with birth control pills available, abortion legalized and antibiotics developed for many sexually transmitted diseases, the risks of all forms of sex seemed more minimal than ever before.
If you've read White's books, you know he's not shy about how much sex he had with a gamut of men in those days.
"New York seemed either frightening or risible to the rest of the nation. To us, however, it represented the only free port on the entire continent. Only in New York could we walk hand in hand with a member of the same sex," White wrote of the 1970s in his memoir "City Boy: My Life in New York During the 1960s and 70s."
That relative bliss came under attack in 1981, when writer Larry Kramer invited White and dozens of other gay men to his apartment near Washington Square Park. Dr. Alvin Friedman-Kien, a dermatologist and virologist at NYU's Langone Medical Center, spoke to them about a mysterious illness that seemed to target gays.
Friedman-Kien had been finding Kaposi's sarcoma, a tumor normally seen only in older men of Eastern European or Mediterranean origin, in young gay men. Cases of that "gay cancer" were also cropping up in San Francisco.
"People asked me what they should do, and I said, 'well, really, we think there might be something about gay sexual activity related to the tumor and the other diseases that are occurring.' And the group was kind of outraged," Friedman-Kien remembers. "They weren't about to give up free sex and their open new lifestyle."
"Everybody looked at everybody like, is this guy crazy?" White recalls.
Meanwhile, in Los Angeles, Dr. Michael Gottlieb had started seeing clusters of pneumocystis pneumonia (PCP) among gays, leading to a June 5, 1981, report from the Centers of Disease Control and Prevention that's considered the first scientific publication regarding HIV.
In July, the CDC published a followup about the Kaposi's sarcoma cases that Friedman-Kien and other doctors had observed. Both the pneumonia and cancer symptoms indicated that a never-before-seen infectious disease was destroying the immune systems of many gay men.
A new "crisis"
As more people in their community came down with this illness, White, Kramer and four other men formed the Gay Men's Health Crisis. The name emphasized the target population of gay men and the seemingly temporary nature of the disease. White became the first president.
The organization, which met in people's living rooms, had ambitious goals that were hard to achieve in the early '80s. The men wanted to urge prevention, but no one knew exactly what was causing the disease or how to control it; they wanted to back research but didn't have enough funds; they wanted to sustain people who had the disease, even though there weren't effective treatments at the time. Also, they believed that society at large didn't care.
But the group was in the dark about how to best help the cause. "We were so benighted and so cut off from the mainstream and so low in self-esteem that all we could think to do was to have a disco party," he said.
Unfortunately, these parties didn't generate enough money to finance research or spread information, and researchers had trouble getting enough funding. Friedman-Kien and colleagues had to rely on handouts and private foundations for research money because they couldn't get the attention of the government, including the New York Public Health System.
"The attitude was, these (diseases) are only in gays and IV drug users, underdogs, people who didn't deserve any special attention," Friedman-Kien said. "It wasn't until the hemophiliacs developed PCP pneumonia and other opportunistic infections that the government suddenly felt they were victims."
Compared with other illnesses, though, the trajectory of HIV research and treatment development moved faster than almost anything else in medicine, said Dr. John Bartlett, professor of medicine at Johns Hopkins University School of Medicine, who has led the school's efforts to combat and prevent AIDS since the early '80s.
"The people that had it had the feeling that their needs were being ignored. I think that plays out with any really lethal disease. You just don't think scientists or medicine is doing enough. Some of it is not necessarily reality," Bartlett said.
After a few months, White was happy to hand over leadership of Gay Men's Health Crisis to Paul Popham, whom White remembers as a successful businessman. But Popham and Kramer fought, leading to Kramer's departure from the group. Kramer later wrote the play "The Normal Heart" about those early days of Gay Men's Health Crisis, now recognized as the world's first provider of HIV/AIDS prevention. Kramer went on to found ACT UP, an activist group instrumental in demanding better health care and research for HIV. Popham died in 1987, of AIDS.
No refuge in Europe
When White moved to France in 1983 through a prestigious Guggenheim Fellowship for writing, he thought he was escaping this new disease, at least for a while. He liked Paris so much that he stayed there -- "with its drizzle, as cool, grey and luxurious as chinchilla," he writes in the autobiographical novel "The Farewell Symphony" -- beyond the year that he had planned.
But HIV began hitting the country in a big way. One of its early victims was French philosopher Michel Foucault, also gay, who invited White over for dinner a few times for rich meals without vegetables. When White brought up AIDS, Foucault laughed and accused him of being puritanical, calling it an "invented" disease "aimed just at gays to punish them for having unnatural sex." The esteemed thinker died of the disease in the summer of 1984.
"In Paris AIDS was dismissed as an American phobia until French people started dying; then everyone said, 'Well, you have to die some way or another.' If Americans were hysterical and pragmatic, the French were fatalistic, depressed but determined to keep the party going," White writes in "The Farewell Symphony."
Since he'd had so many sexual encounters with different men, White had generally assumed that he was HIV-positive. But the reality of blood test results hit him hard: His own life party seemed to have stopped.
He was too dejected to write and had no support system to help him through that tough time. None of the American-style support groups existed in Paris. He had joined a group called AIDES, founded by Foucault's surviving partner, but the focus was more on political campaigning than on personal experiences with the illness.
"People didn't talk about things like that. If somebody became ill in Paris, they would go back to their village and die behind closed shutters," he said.
AIDS gave its victims what Bartlett calls "the three D's" that no one wants to have: dementia, diarrhea and disgrace.
"It was an awful way to live. They got emaciated. They died a lingering death," Bartlett said. "If you asked me, 'How would you least want to die?' I'd say, 'The way an AIDS patient died in 1990.' "
And back when people thought HIV could be transmitted through saliva or tears, they would limit their casual contact, White said. Bartlett remembers the same fears; people even wondered whether mosquitoes could transmit the virus.
"Mothers didn't want me picking up their babies. People didn't want to kiss you on the cheek. People certainly didn't want to have sex with you, especially other gay people. It was very isolating and demeaning," White said. "That was a long battle."
But within a year or two, educated people got the word that HIV doesn't spread through non-sexual gestures. The death of actor Rock Hudson in October 1985 played a big part in that, White remembers; there was so much publicity around Hudson's death that it had the effect of bringing AIDS out of the closet.
And back in the U.S., President Reagan also took the issue seriously. Surgeon General C. Everett Koop wrote a brochure about AIDS that was sent to all 107 million American households in 1988. Bartlett also gives a lot of credit to basketball star Magic Johnson for revealing his HIV-positive status in 1991, destigmatizing it broadly.
Still, it was harder to get a date (and still is). White said that once he reveals his status, he'll often be rejected instantly "unless people are very educated and scientific in their orientation."
Enlightenment
White isn't a religious or "New Age-y" person and considers himself an atheist. But about a year after the diagnosis, he had a moment of reflection that kept him moving forward.
He sat in his Paris apartment cross-legged on his little couch-bed, in a yoga position he barely knew how to do, and meditated. It was a way of coping with his positive status, since statistically it seemed inevitable that he would die soon.
"I asked my body if it was going to die or not from AIDS. And it said no," he said. "I sort of paid attention to that."
Superficially, he considers it a "totally superstitious, ridiculous moment."
But he listened to it, even when the reporters started showing up in Paris to interview him as a great writer who would be dead within a year. PBS's Peter Jennings and the BBC's "Face to Face" featured him in 1990.
White spoke to reporters about being HIV-positive when virtually no other prominent people were open about it. At that time, the only people seen talking about AIDS in the press were doctors, he said.
"I took it as being something like the original struggle to come out as a gay person. And I said, 'OK, well, now we have to come out as being positive.' But nobody else was that imprudent, because they really felt that it would lead to discrimination," he said.
Among his works from that period, he co-wrote a book of short stories with Adam Mars-Jones called "The Darker Proof," published in 1988, which was the first creative statement by gays about what living with the disease was like for ordinary people. The short story "Palace Days" fictionalizes the moment when he told his Swiss lover how he thought he'd be positive and his partner would be negative.
White devoted himself to researching the life of gay novelist Jean Genet, a project that took seven years before the highly acclaimed 1993 biography appeared. And in 1997, he published "The Farewell Symphony," the third of his autobiographical novels. Having recently lost his lover to AIDS, the narrator looks back on his sex-filled experiences in New York and Paris but confronts the disease head-on only in the last chapter, when he finds out his own status and loses many good friends to the illness.
"And now, as I numbered my dead, I felt that I'd spent my whole life social climbing and someone had sawed the ladder out from under me," he writes in "The Farewell Symphony."
The medication question
White didn't take any drugs in the early days. He was raised a Christian Scientist, and even though he didn't subscribe to that religion, he still kept the old habits of avoiding doctors for the most part.
In 1986, the year after White's diagnosis, AZT got approval from the U.S. Food and Drug Administration, marking a breakthrough for AIDS treatment. Pharmaceutical companies had shied away from drug development because they thought it was impossible to treat a retrovirus, a disease like HIV that's incorporated into the genome of the infected person. Importantly, AZT quickly brought down the rate of babies infected with HIV, Bartlett said.
But everyone White knew who took AZT in the '80s seemed to die faster than those who didn't take it.
"We just knew that it worked, but we knew it didn't last long," Bartlett said. It seems, retrospectively, that AZT lengthened life by about four to six months at that time.
Since his T-cell counts were still relatively high, White didn't try AZT. The drug had to be taken every four hours, even during the night, and came with nausea, diarrhea, vomiting and other side effects.
"It made people sick, sick as a dog, because we gave huge doses," Bartlett said.
A more robust therapy came in 1996 with the "triple cocktail" of three kinds of drugs that help the body fight HIV and boost the immune system's defenses. That marked a game-changer, with the ability to lower people's virus load to undetectable levels. Still, the regimen was demanding at first: People needed to take their medications several times a day and had bad side effects, Bartlett said.
Since then, the drugs have gotten a lot easier to manage. There's even treatment that's a single pill, combining the three kinds of drugs, that can be taken once a day, and more like that are in the pipeline, Bartlett said. And with available treatments, many people are living with HIV as a chronic illness instead of dying and don't have specific symptoms. Patients on appropriate meds may have "near-normal" longevity, Bartlett said, though more research is needed to determine the illness' exact effect.
"The medicine that we have today restores health," Bartlett said. "It's a whole lot different than it used to be, and they look terrific."
No longer a death sentence
White eventually learned that he's in a small category of people with HIV called slow progressors, people whose disease does not develop as rapidly as in most patients. Since 2004, he has been on a simplified triple-therapy regimen.
Now 71 years old, White has been a beloved professor of creative writing at Princeton University since 1999, a position in which his knowledge, charisma and passion for prose often transform students' thinking about storytelling.
Gay Men's Health Crisis has also transformed from the small gathering of White and five other men in 1981; it now has 200 staffers, 900 volunteers and a corporate structure. The organization offers many services such as rapid testing, support groups and a hot line, and it advocates for more government funds for HIV/AIDS.
"We certainly stand on the shoulders on those six very brave and courageous men who challenged the larger society, challenged the gay community, challenged government to really take account of what was happening, even before it was officially named and even before people understood it," said Marjorie Hill, the current CEO of Gay Men's Health Crisis. "They said, 'We need to take care of each other.' "
As the endurance of that group suggests, the crisis is not over. The most recent data from the CDC suggest that there were about 56,000 new HIV infections in 2006, and 15,600 AIDS-related deaths per year, in the United States alone. And although fewer people are dying than in the 1980s, there's still a lot of work to be done, particularly with regard to prevention and education, Hill said.
"The continued service as well as advocacy we do is really a continuation and in honor of the courageous move that they made, what's for some people a lifetime ago," she said.
White writes, on average, a book every year. Teaching and writing take up most of his time. He has lived with his partner Michael Carroll, with whom he has an open relationship, since 1995.
"Now, I think there's every reason to be hopeful. It really is more like a disease like diabetes," White said. "There are a lot of inconveniences, but you can go on living. And I would say AIDS is about like that now." -
CNN Health
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AIDS In The '90s: 'I Wasn't Going To Die Miserably'
She sat in a small exam room, down a hallway that gets even longer when she remembers it. That was where doctors told Linda Scruggs, 13 weeks pregnant, that she had tested positive for HIV.
"They told me that I had the option of terminating the pregnancy to prolong my health, and they offered me, with the termination, five years to live," recalls Scruggs. "If I did not terminate this baby, probably me and the baby both would be dead within three years."
That year, 1990, marked Scruggs' 25th birthday and her status as one of an estimated 1 million people in the United States infected with HIV.
"I was pregnant. I was making real crazy decisions. I think my hormones were probably crazy."
And she faced the cruelest of choices: Should she bring a baby into the world who might die in childhood? Or have an abortion, to prolong her own life?
That year, more than 31,000 American lives were lost to AIDS, according to Centers for Disease Control and Prevention reports from that time. Most were 25 to 44 years old, with blacks and Hispanics having the highest death rates.
HIV in the '80s: 'People didn't want to kiss you on the cheek'
Two decades later, Scruggs sits in an office above a busy street in Washington, coordinating programs to spread awareness of AIDS and fight the stigma that lingers. She's 46, tall and full of energy; a space between her front teeth adds to her youthful smile.
A sign on the wall reads "God answers knee mail." Thick white binders on her bookshelf are remnants of the National Train-the-Trainer initiative, which gave more than 200 men and women with HIV the skills to become educators in their own communities. Scruggs wipes a tear as she describes it; the program just lost its funding.
How Scruggs went from a bewildered young woman with a deadly prognosis to a passionate leader in the HIV advocacy world is a story of courage, dedication and faith. She persevered not only with her own illness, but in helping countless others live their lives in the face of impending death.
On her office wall is evidence of another choice she made: a photograph of her son, Isaiah, who is now 20.
Coping with diagnosis
Two years before her diagnosis, Scruggs had tackled her own drug addiction. She didn't enter a formal program but willed herself to quit snorting cocaine, smoking marijuana and drinking.
People in the drug world called her an "alley cat." She didn't come from an impoverished background. She was the daughter of a retired military officer, from a fairly well-to-do middle class African-American family -- but still she ended up in a lifestyle of addiction.
"I found myself constantly around and with people who were not good for me," she said. "Life had been really, really hard."
She'd also had unprotected sex with several men, sometimes against her will, who probably had multiple partners themselves. She has no idea exactly when she got HIV.
More on AIDS
"I don't know where it happened or who that person was," she said. "Unfortunately I've been raped twice before my diagnosis. I'm kind of imagining that it wasn't even one of those, because that would be sad and depressing. But I'm just really imagining it was one of those times I was high on the ecstasies of life."
All of that was in the past when she moved to Baltimore, Maryland, to be with the father of her child, and to start a new life there. But the day before Thanksgiving of 1990, she got the news that made her want to give up.
"It's hard to describe the desperation of just really having no self-worth, no self-value. Life just wasn't loving me."
Instead of going home to her boyfriend after the clinic, Scruggs joined the pre-Thanksgiving traffic and drove to the Delaware Memorial Bridge. She felt tired, tired of living through all the bad things that had happened to her that she'd kept secret. She got out of the car and stood by the edge as cars honked their horns behind her. And then, a voice from within seemed to speak.
"I believe that was a moment that God spoke to me," she remembers.
"'Where is your faith?'" the voice said. '''I'll take care of this.' "
At home, she told her boyfriend about her diagnosis. He held her, cried with her, and told her everything would be OK. "Just don't tell anybody. We'll figure it out."
Scruggs didn't want to resume their physical relationship, but after a break from sex the couple started using condoms. They got married, and her husband promised to love her as long as she never talked about being HIV-positive.
"I was still hurting and crying on the inside," she said.
After their son Isaiah was born, post-partum depression set in. Scruggs agonized over whether he had HIV too, and her husband refused to get tested himself. Finally, when Isaiah was 18 months old, Scruggs found out the good news: Her son was negative.
Doctors may not have known it at the time, but that wasn't too unusual. Dr. John Bartlett, professor of medicine at Johns Hopkins University School of Medicine, says only about 15% of babies were actually getting HIV from their mothers. Transmission happened during passage through the birth canal.
Although her son was safe, Scruggs needed support for her own condition, and felt like she needed to be able to talk about her disease. But her husband wouldn't allow it.
"He said I couldn't be married to him any longer. I packed up my bags, I took my little boy and I started a new life."
She learned more about HIV through the American Red Cross, and ended up getting certified in HIV education. She started working at Johns Hopkins University's peer program, and became a women's health advocate there.
"Suddenly, I couldn't stop talking about it. Absolutely I knew that if I was going to die, I wasn't going to die miserably."
In the underworld
Scruggs devoted herself to helping others better understand the disease.
She started several support groups, and worked with a nurse practitioner at Johns Hopkins to go to schools and talk to nurses and principals about HIV.
At that time, some mothers of HIV-positive children thought they couldn't go to school.
"They weren't going to live forever, but for a 6-year-old to tell you all she really wanted to do was go to school, a 7-year-old to say I've never been to school and I just want to go to school and Mom won't let me go ... there was no reason for (that)," she said.
Crack cocaine was a huge problem, and a norm, among Scruggs' clients in Baltimore. Multiple generations in a given family might be HIV-positive, drug-addicted and welfare dependent. Scruggs became a certified substance abuse counselor so that she could better help these people.
Once, Scruggs went looking for one woman she'd been helping who had been in recovery, but had relapsed. Asking around, she found out that the woman had been seen at a "shooting gallery," where addicts go to inject themselves with recreational drugs.
"It almost felt like the den of death, what hell would have felt like to me. There were people laying around, with needles in their arms shooting dope. There was a gentleman in the corner, I'll never forget, he was laying on the floor and somebody was shooting dope in his neck and it was bleeding," she said.
Scruggs called out her client's name. She wasn't there. But Scruggs' journey to the underworld gave her new insight.
"What I came out of that space with, though, is that part of what's wrong with these women that I'm trying reach is: They don't have vision."
"I remember saying, 'Wow, God, that's why I'm here. That's why you pulled out this little middle-class suburban girl: To teach these ladies that there's some vision.'"
Speaking out
A turning point in Scruggs' mission to reduce HIV stigma came in 1993 when a speaker canceled at a conference for physicians and Scruggs was asked to fill in. Until then, she had only spoken to individuals and small groups about HIV, and had not revealed her own HIV status. But the conference would pay $500, and Scruggs' rent was due. So she went home and put on a suit.
When she entered the hotel conference room and saw 700 people waiting for her to speak, the money didn't seem worth it. But Scruggs pushed her fears aside and started talking. As she shared what she'd been through, she felt unexpected release.
"When I got up there and I began to talk and I began to tell my story, I literally could hear the key turning in the lock," she said. "I'm crying, they're crying, but at the same time I wasn't crying 'cause I was sad. This was like, wow, I just unlocked a part of me that I didn't know I had a shackle on it."
Ever since, she has relished opportunities to talk about what happened to her and about the importance of HIV education. She wants others to know that ecstatic feeling of freedom that comes with being open about trauma.
"This is me learning, wow, if I just tell it, it doesn't have to hurt. If I tell it, I don't have to hold my head down. If I tell it, I take ownership."
Still, Scruggs was weighed down by the fear that her son would be left alone. She wrote letters and made audiotapes containing the messages she wanted him to have in the future. She took him on vacations twice a year, so he'd have memories and pictures to last the rest of his life.
"I would just pray to God, let me just live until he was 10. If I could live until he was 10, I would have taught him enough lessons, I would have hugged him enough, I would have kissed him enough," she said.
But miraculously, Scruggs never had actual symptoms of HIV beyond fatigue, which could have been associated with something else. She feels especially lucky because for 14 years, she never took medication for the disease.
At first, no drugs for Scruggs
Dr. Angelike Liappis knows many women with serious illnesses who take care of everyone else before they get help themselves. Scruggs, who came to see her in the early 2000s when Liappis worked at George Washington University, seemed to be no exception.
The physician and her former patient both recall their relationship as a "partnership." Scruggs had made the decision to seek a new doctor and explore treatment options, and Liappis wanted to help with that process.
Scruggs had dismissed the idea of taking HIV medications during the first decade after diagnosis because she didn't want to depend on dozens of pills every day, and feared drug resistance if she used them improperly. The first medication, AZT, had to be taken every four hours, including throughout the night, and only extended life about four to six months. "Triple cocktail" drugs in 1996 were a breakthrough for combatting the virus, but were still hard to take in terms of daily quantity and side effects, Bartlett said. To this day, HIV patients must be on medication for life, so it's crucial to have a daily regimen that's easy and as painless as possible.
By 2004, treatments were available that had fewer side effects and an easier-to-manage daily schedule than ever before. Liappis reviewed all the possibilities with Scruggs, and together they forged a plan that involved three or four pills a day.
"Starting the treatment was the way that she took care of herself," said Liappis, who is now at the Washington VA Hospital but did not treat Scruggs there.
Scruggs tolerated the drugs well; her system responded, and they helped her eventually get to undetectable levels of the virus, Scruggs said.
Liappis also saw Scruggs' passion and strength outside the examination room. Together, they ran a women's support group in which Scruggs spoke candidly about her personal experiences.
"She really is able to communicate at a basic level with everyone and really connect with them. She's very inspiring in that way," Liappis said.
"She's probably one of the most courageous women I've ever met."
Toward a better future
For a long time, Scruggs didn't want a romantic relationship with anyone who was HIV-positive because she didn't want to fall in love with a man, take care of him and then lose him to the disease. And she was generally open about her status, revealing it on the first or second date.
So when she met Nathaniel eight years ago, she wasn't interested in dating. But one of Scruggs' friends introduced them in an e-mail, and the two met in person at a pharmaceutical company meeting. Nathaniel was HIV-positive, had two kids of his own, and also came from a background of strong faith. He prodded her to consider treatment, which she had avoided to that point.
The two married in 2005. HIV isn't a secret in their life, and it doesn't come between them.
"He'll say 'Did you take your medicine?' in the morning. In the evening, I'll say "Did you take your medicine?"
These days, people still tell Scruggs that she doesn't look like she has AIDS. Others seem awed that she got HIV considering that she's not from a poor family -- a myth that overlooks the reality that AIDS can strike anyone, regardless of socio-economic class.
"After 30 years of this disease, there's only a small part of the country that understands both that HIV is real and that it's here," she said.
Scruggs is the director of programs at the AIDS Alliance for Children, Youth and Families in Washington, D.C., and a minister at her church. She and Nathaniel have a blended family that includes her son Isaiah, Nathaniel's two children and another son, Lawrence, whom Scruggs adopted in 1997, when he was 9. The boy's father had died, possibly from AIDS-related complications.
Lawrence was a student in Scruggs' sister's second-grade class when his own mother decided she couldn't care for him any longer. Scruggs had wanted another child, but didn't want to risk passing on HIV to a baby of her own.
Lawrence is 25 now -- five years older than Isaiah, whom Scruggs was pregnant with at the time of her diagnosis.
Isaiah remembers feeling caught off guard when his mother brought up her illness when he was about 8. To this day, he fears getting HIV himself, based on his mother's experience.
"I see what she has to go through sometimes, and I see the pain that it causes her sometimes," he says. "Not as far as physically hurting her, but mentally."
Scruggs' fear that she would leave Isaiah alone never came true. He now has an extended family, including his big brother Lawrence, who coincidentally looks like him.
"I don't look at him as an adopted son," Scruggs said. "It was divined that he came into our lives." -
CNN Health
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HIV In 2000s: Love, Betrayal And A Calling
Tonya Rasberry dialed her husband's number, her composure shaken and her nerves numb.
She dreaded the call, but her husband picked up immediately.
"I got my test results back," she told him.
For a brief moment, silence hung in the air.
"What'd the doctor say?" he asked.
For the first time, the words fell out of her mouth: "I'm positive, too."
Rasberry heard his telephone drop -- it clattered against the hospital's tiled floor. She could hear his muffled cry -- the painful, gut wrenching cry that shakes a person so hard they can't make a sound.
"I ruined your life," he would tell her later. "I killed my family."
Her husband had AIDS. And now, she had HIV.
Rasberry could have thrown him out of their home, gathered their three kids and left him. Instead, she chose a different route.
She forgave him.
The modern epidemic
In the 30 years of HIV/AIDS, the virus has changed the way people think about sex and has raised the stakes of unprotected intimacy.
Since the virus was first reported on June 5, 1981, the disease has killed more than 25 million people worldwide. Today, about 33 million are living with HIV/AIDS -- more than a million in the United States.
In the United States, the demographic of the HIV/AIDS epidemic has spread from gay men in the 1980s to heterosexual minority women in the 1990s and 2000s. It disproportionately affects people of color: African-Americans and Hispanics.
"Although the numbers in the decades have been stable, the rates of the disease are unacceptably high," said Dr. Kevin Fenton, director of the CDC's National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, about the toll on African-American and Hispanic women. "New diagnoses are 19-22 times of white women in the U.S. That's a startling statistic."
Rasberry, 36, embodies another challenge of a modern day epidemic. She knew about HIV/AIDS from public health campaigns, but never imagined it would touch her -- after all, she was married.
Many women believe they are in monogamous relationships and later find out they got HIV from their partners, said Ingrid Floyd, executive director of Iris House Inc., a program for HIV-positive women in Harlem.
"How do you deal with that," Floyd said, "that your partner lives with the disease and never disclosed to you?"
The virus attacks immune systems but also leaves patients with the sting of betrayal. Could they trust another person again?
There's an even more difficult question.
"For many of them, there's a fear of rejection," Floyd said. "If you're HIV-positive, there's the whole disclosure part. Is someone going to accept your HIV status?"
Young love
They met on a hot May night in 1994.
A 19-year-old Rasberry had finished a day of busing tables at a Seattle seafood restaurant. She and her girlfriends had planned a night in the city. Dolled up in miniskirt and heels, they were crossing a street when a man called out to Rasberry.
It was important that he talk to her, he said. He was with his friends and they bet that he couldn't talk to a gorgeous girl like her.
Rasberry eyed the older man. She stood an inch taller. At 5 feet 5, he had a stocky build and broad shoulders, the structure of a former football player. But what he lacked in stature, he made up for in charisma.
His name was Eric.
Right away, she noticed he was nothing like other boys she had dated. He was a gentleman, always opening doors for her. And it was easy to get swept away at 19.
He brought her to the nicest restaurants, surprised her with balloons and champagne.
"He was a sweet guy," Rasberry said. "He took me everywhere -- vacations, shopping. I thought he was the best thing since sliced bread."
A year later, Rasberry was pregnant with their first child, a boy, Seaduan. Two years later, they welcomed a girl, Erykah, and a year later, another daughter, Tionne.
In 2000, the couple married in a simple garden ceremony in California. They raised the kids and a Labrador mix named Smokey in an apartment in Kent, near Seattle.
Her husband traveled frequently. He told her he worked in construction. She suspected this wasn't the case. Later, she would learn he had a house in Ohio and a music studio in California.
She warned him promiscuous behavior would hurt her and their kids. She wanted a regular family life or she would leave.
"I felt like he was willing to make those changes," Rasberry said. "I felt like I could stick in there longer. Then, he got sick shortly after that."
Paralysis
On a summer night in 2002, Eric wasn't feeling well. After picking up pizza for dinner, he arrived home and crumpled to the floor.
Maybe it was his diabetes. Maybe he just had too much sugar.
By the time he arrived at the hospital, he couldn't move his right side. Half his face drooped and his right hand curled and froze in place.
At 32, he had a brain infection called toxoplasmosis that had caused a stroke. Doctors were perplexed about how he had gotten it.
After a slew of tests, his doctor told him: "You have AIDS."
HIV/AIDS medications, while lifesaving, aren't as effective when the disease has advanced.
In most cases, the patients who don't recover "weren't aware of their status, have co-morbid status, substance abuse, or other chronic illness that make it harder to take HIV medication," said Dr. Judith Currier, chief of the division of infectious diseases at the David Geffen School of Medicine at UCLA.
When patients like Eric are diagnosed in later stages, they are more vulnerable to infections.
For patients like Rasberry, who start treatment in the earliest stage of the disease, life expectancy is close to people without HIV.
A loss
"I didn't have enough time to be sad for myself," Rasberry said about her diagnosis. "There was no time for that."
Overnight, she became the breadwinner with four dependents: her paralyzed husband and her kids, all under 10.
There was no time for anger. But Rasberry wondered, how had she become infected when she had tested negative for HIV for each of her pregnancies, in 1995, 1997 and 1999? Her children do not have HIV.
Her gaze fell to her husband.
The businessman who took pride in caring for his family had become bedridden. He was constantly fighting new infections.
"I had to dress him and bathe him," Rasberry said. "From that moment, I was doing everything for him."
A throat infection obstructed his ability to swallow, so a feeding tube was inserted. Every day, Rasberry pulverized his pills and cleaned his feeding tube.
"There was nobody else I'd do that for," she said.
Once 300 pounds, he shrank to a third that size.
"Every time I changed him or fed him, he would apologize," Rasberry said. "He was sorry about the HIV -- that I had to do this. He just looked so sad."
She told the kids their father was sick with diabetes.
She took her HIV medication, then she went to work at a collection agency. At night, she'd get dinner for the family and try to help her husband through the night.
She was wearing out.
As his health faded, Eric went into hospice care in the Seattle area, then to a facility near his family in California. He died on October 6, 2004, from complications of AIDS related to pneumonia. He was 34.
"I loved him," Rasberry said. "We have three gorgeous children. I had more good times in the relationship. I like to remember it for those things."
A new bond
Following her doctor's suggestion, Rasberry went to a woman's group called BABES Network-YWCA. There, she found a sisterhood of women who have been through the betrayals, the grief and the physical toll of HIV/AIDS.
"A lot of these women and mothers were in relationships, trusting somebody," Rasberry said about the patients she met. "Now their whole life is different."
She was paired with a counselor, Nicole Price, who had contracted HIV through a boyfriend.
Even though HIV was no laughing matter, "Tonya has a great sense of humor and she's always making us laugh," Price said.
Rasberry had a natural openness that put others at ease, even in difficult times, Price observed. It wasn't long before Rasberry became a peer counselor at BABES, guiding Seattle women through the health care and medication maze and the emotional minefield of HIV/AIDS disclosure.
This year, the program lost its federal funding, so several staff members, including Rasberry, may lose their jobs in July. Even with the prospect of another loss, Rasberry continues to share her personal story at health events, women's shelters and juvenile detention centers.
"HIV is not who I am," Rasberry says during her talks. "It's something I have."
Rasberry tells others about her kids, ages 15, 13 and 12, who understand what Rasberry does. They hug her and tell her they're proud of Mom for making a difference. She sticks to her medication and has had no major health problems.
Being so open about her HIV-status, Rasberry thought, would turn away love prospects. After all, her face has been plastered on Seattle buses urging residents to get tested for HIV.
But last year, Rasberry met a woman at a bar. They struck up a conversation and exchanged phone numbers. Days later, Rasberry mustered her nerve to call her.
They chatted pleasantly, until the woman asked what Rasberry did for a living.
"I work as an HIV counselor, because I am HIV-positive," Rasberry answered.
"Really?" the woman asked.
Then, Rasberry braced for the rejection. It never came.
The couple has been together nine months now.
Rasberry's girlfriend said it's true HIV does not define her, her honesty does. And it only makes her more attractive. –
CNN Health
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Illinois Civil Unions Law Goes Into Effect Wednesday
Starting Wednesday, same-sex couples in Illinois can enter into civil unions and enjoy many of the legal protections granted to married couples.
In January, Illinois joined five other states in legalizing civil unions. Gov. Pat Quinn signed the law in front of a crowd of cheering residents during a ceremony in a Chicago auditorium.
"We are showing the world that the people of Illinois believe in equality for all," Quinn said January 31. "We look forward to individuals and businesses from across the country choosing to move to Illinois where we believe that everyone is entitled to the same rights."
The provision, which goes into effect Wednesday, is called Senate Bill 1716 and creates the Illinois Religious Freedom Protection and Civil Union Act.
The new law will allow same-sex and heterosexual couples to enter into civil unions granting them many rights given to married couples.
These rights include automatic hospital visitation rights, the ability to make emergency medical decisions for partners, the ability to share a room in a nursing home, adoption and parental rights, pension benefits, inheritance rights and the right to dispose of a partner's remains, the governor's office said.
"In addition to Illinois, five other states and the District of Columbia have civil unions or similar laws on the books. Those states include California, Nevada, New Jersey, Oregon and Washington," the governor's office said.
But some in Illinois object to the new law.
Illinois Family Institute, a nonprofit group that says it wants to reaffirm marriage in the state, called the law "divisive."
"Gov. Quinn should reject this anti-family bill and reject the efforts of the homosexual lobby to impose this highly contentious and controversial policy on the people of Illinois," David E. Smith, executive director of the group, said earlier.
But couples like Mercedes Santos and Theresa Volpe said the new law will dramatically change their lives.
It gives them the rights that other families have when it comes to their 6-year-old daughter and 2-year-old son, they told CNN affiliate WLS earlier this year.
"Our son actually has some illnesses, so going into the hospital, being able to say that we can both be in the room with him and make decisions without too many questions, just makes it easier for us," Santos said. –
CNN U.S.
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Jilted Ex-Boyfriend Puts Up Abortion Billboard
A New Mexico man's decision to lash out with a billboard ad saying his ex-girlfriend had an abortion against his wishes has touched off a legal debate over free speech and privacy rights.
The sign on Alamogordo's main thoroughfare shows 35-year-old Greg Fultz holding the outline of an infant. The text reads, "This Would Have Been A Picture Of My 2-Month Old Baby If The Mother Had Decided To Not KILL Our Child!"
Fultz's ex-girlfriend has taken him to court for harassment and violation of privacy. A domestic court official has recommended the billboard be removed.
But Fultz's attorney argues the order violates his client's free speech rights.
"As distasteful and offensive as the sign may be to some, for over 200 years in this country the First Amendment protects distasteful and offensive speech," Todd Holmes said.
The woman's friends say she had a miscarriage, not an abortion, according to a report in the Albuquerque Journal.
Holmes disputes that, saying his case is based on the accuracy of his client's statement.
"My argument is: What Fultz said is the truth," Holmes said.
The woman's lawyer said she had not discussed the pregnancy with her client. But for Ellen Jessen, whether her client had a miscarriage or an abortion is not the point. The central issue is her client's privacy and the fact that the billboard has caused severe emotional distress, Jessen said.
"Her private life is not a matter of public interest," she told the Alamogordo Daily News.
Jessen says her client's ex-boyfriend has crossed the line.
"Nobody is stopping him from talking about father's rights. ... but a person can't invade someone's private life."
For his part, Holmes invoked the U.S. Supreme Court decision from earlier this year concerning the Westboro Baptist Church, which is known for its anti-gay protests at military funerals and other high-profile events. He believes the high court's decision to allow the protests, as hurtful as they are, is grounds for his client to put up the abortion billboard.
"Very unpopular offensive speech," he told the Alamogordo Daily News. "The Supreme Court, in an 8 to 1 decision, said that is protected speech."
Holmes says he is going to fight the order to remove the billboard through a District Court appeal. –
Yahoo News
