Everything known about AIDS suggests that Noreen Martin is near death. The 53-year-old Lowcountry woman was diagnosed with AIDS three years ago. Her viral load, the rate of HIV in her blood, is at more than 100,000 200 to 500 is good and an undetectable number is even better. Her CD4 rate that gauges the number of helper cells in her system is at 136 healthy people run between 600 and 1,200. Martins doctors have begged her to take antivirals, but shes refused the drugs since March and the numbers keep heading in the wrong direction.
The puzzler is that Martin looks great. She feels great. She says it's no surprise. She claims it's because everything known about AIDS is wrong. She says HIV is a harmless retrovirus that can't be sexually transmitted, that AIDS medicine can cause the very disease it is expected to fight, and that the government knows this and is ignoring the facts.
It should be said early that this is not the generally accepted understanding of HIV and AIDS. The Centers for Disease Control and the National Institute of Health point to thousands of studies that show HIV is primarily a sexually transmitted disease that depletes the body's immune system, opening it up to one or more AIDS-defining opportunistic infections.
At first glance, "AIDS rethinkers" like Martin seem to be buying into an elaborate conspiracy theory. Most rethinkers contend that the man who discovered HIV stole it from the French, many gay men get AIDS because of poppers and other recreational drug use, and most notably, there's no AIDS epidemic.
Their argument is based on one disputable fact: No scientific study has been done that proves that HIV causes AIDS.
An argument that is contested, of course, by HIV and AIDS researchers. There are thousands of articles that prove the connection between the virus and AIDS, says Cornell University professor John Moore, even if there isn't a singular paper that draws the line between the two.
"It's like a moon rocket," he says. "You're not going to go to the web and find one five-page paper on how to build a moon rocket, but you know that it has been done."
The scientific evidence is overwhelming and compelling that HIV is the cause of AIDS, says Jennifer Ruth, spokeswoman with the National Center for HIV, STD, and Tuberculosis Prevention.
"Infection with HIV has been the sole common factor shared by AIDS cases throughout the world among men who have sex with men, transfusion recipients, persons with hemophilia, sex partners of infected persons, children born to infected women, and occupationally exposed health care workers," Ruth says.
Henry Bauer, a retired chemistry and science professor and an ardent rethinker, says history has shown reversals in science when the orthodoxy was challenged by mounting questions.
"When the questions get to a critical mass, it's a revolution," he says. "But it's often a bloody revolution."
The underground scientific controversy over AIDS began in the disease's earliest days. On June 5, 1981, the Centers for Disease Control reported the deaths of five gay men in Los Angeles from a rare type of pneumonia and a month later, they reported more than two dozen cases of gay men with Kaposi Sarcoma, another very rare disease. As the AIDS table grew to include drug users and hemophiliacs, scientists scrambled to find answers.
Rethinkers say American Robert Gallo claimed in 1984 to have found HIV, but his findings were based on a French group's 1983 study of the virus. Gallo's perceived deception is a sticking point for rethinkers because they say it is only the first in a string of lies regarding the disease.
In 1986, the Australian-based Perth Group claimed there was no proof that HIV existed. A year later, American scientist Peter Duesberg joined the argument, acknowledging that HIV existed but claiming it was harmless and that AIDS did not show signs common to contagious diseases.
"It's so anti-scientific when you read these studies," Duesberg says of more than 20 years of AIDS research. "As a scientist, you have to ask all the questions."
Duesberg's theory would gather support over the years as reports on his ideas continued to grow. But they were far outpaced by studies that furthered the popular counterargument that HIV depletes T-cells, which work to fend off disease in the body, ushering in AIDS typically within a decade of transmission.
Those only modestly familiar with HIV and AIDS can be excused for not hearing about rethinkers, but a quick search for information on HIV or AIDS on the internet will show various chatrooms, blogs, and internet sites dedicated to furthering Duesberg's message.
Bauer has been collecting HIV and AIDS data compiled since the onset of the disease.
"What that data shows is that the rate at which Americans test positive for HIV has been the same for 20 years," he says. "Therefore it's not a spreading epidemic."
The Centers for Disease Control's findings mirror Bauer's claim, noting that the number of people diagnosed with HIV or AIDS in 2004 was about the same as it was in 2001 in the 35 states that compile these figures. But a recent United Nations AIDS report notes that HIV infections continue to grow in Africa, but now at a slower pace than eastern Europe and central Asia, where there were 270,000 infections in 2006 compared with 170,000 in 2004. With the expectation that many HIV-positive people don't know they're positive, UNAIDS estimates that 39.5 million people are living with HIV worldwide and 4.6 million people were infected in 2006 alone.
The rethinkers movement received attention in 2000 when the government of South Africa began a public debate on HIV, AIDS, and antiviral medicine and called in Duesberg and other rethinkers to help determine how the country would combat the disease. AIDS activists have since worked around the government to get antiviral medicine and HIV education to the people.
Australia will soon have its own debate over the validity of HIV. That country's Supreme Court recently heard arguments in a case where an HIV-positive Australian man claimed that he could not have infected a woman and endangered two other sex partners because HIV hasn't been proven to exist.
The rethinkers movement took a blow last year when outspoken rethinker Christine Maggiore, who had refused antiviral medicine for years, even while pregnant, and decided against testing her two small children for HIV, lost her three-year-old daughter to an AIDS-related illness. Her son has since tested negative.
AIDS rethinkers exchange news on these stories and various AIDS findings through a growing number of websites that offer support for rethinkers, which heartens Martin.
"When I did it, I had to do it the hard way," she says.
Among a varied collection of antique books in Noreen Martin's library is an old, thick book from the Library of Health that she considers one of her favorites because of the inscription on the book cover: "You can do nothing to bring the dead to life; but you can do much to save the living from death."
Martin, a Hanahan housewife who does some reporting for the community paper as a hobby, has been fighting off injuries and illness for years, including a herniated disc and pinched nerves, cancer, an ear infection, and various allergic reactions to medicine she was taking to combat these problems.
"I've forgotten a lot, which is a good thing," she says. "It's part of the healing process. The mind has a way of blocking out the negative things or bad memories."
In 2003, her health further deteriorated, as she began experiencing fatigue, nausea, diarrhea, breathing troubles, weight loss, and continued memory loss. Doctors pressed her to get a bone biopsy and blood tests to determine if she had cancer. The tests came back indicating she was cancer-free, but further tests found she had HIV and AIDS.
"After months and months of being sick, I was relieved," Martin says. "I just wanted to know what was wrong."
Martin was told to wait two months for an appointment with an infectious diseases doctor. Not wanting to wait around, she went to a health food store, where the owner told her about an alternative doctor who performs chelation therapy, a hours-long cleansing of sorts for the blood that targets proteins and is supposed to help with blood flow. Chelation therapy has its own controversies, with the American Heart Association and the FDA stating there is no medical benefit to the practice and the CDC attributing the deaths of two children to a chelation drug called Endrate. But Martin says it was one of the few things that helped her in the early months after she was diagnosed.
"It didn't cure me, but it certainly helped," Martin says. "On the chelation days I could at least get off the couch."
But her overall health continued to decline and when she finally got to the infectious diseases doctors, they rushed to get her on an antiviral medicine that Martin concedes likely saved her life.
"I had about three different viruses going on at the same time, so these things were a godsend," she says, though noting that the success of the medicine was in tandem with healthy living and natural supplements.
But her doctors weren't supportive of Martin's alternative supplements, which sent her looking elsewhere for answers and eventually to the rethinkers movement.
"The more I read, the more things just weren't adding up," she says.
Where Martin had first thought that she had HIV, she now doubts that initial test and believes that she contracted AIDS through a natural immune deficiency.
"Everybody's immunity is different," she says. "I can't give somebody my immunity any more than I could give them my toothache."
Feeling better, Martin decided to go off the antiviral medicine in early 2005, but soon returned to it after pressure from the doctors and her husband. Last March, she decided that she would get off the medicine and not look back. She is now taking Low Dose Naltrexone, a drug that helps people with immune deficiency diseases, that was prescribed by another physician.
Though he's not familiar with the rethinkers movement, Robert Cantey, director of infectious diseases with the Medical University of South Carolina, says an AIDS patient ditching their drugs isn't uncommon.
"That's a typical response when someone has a good response to the medicine," he says, but notes it was more common years ago when the side effects were more severe.
Martin says she's been in great health since going off her antivirals, but the blood tests paint a different picture as her CD4s, the helper cells that ward off diseases, continue to fall and her viral load climbs from less than 100 to more than 100,000. Cantey says the numbers are now in the range where Martin is susceptible to brain, lung, or bloodstream infections that are common among AIDS victims. He says Martin's late diagnosis likely contributed to her quick drop in CD4s.
"The worse those numbers are when you go on the medicine, the faster they'll drop when you go off the medicine," he says.
Meanwhile, Martin's advice for others is to stay healthy and don't get tested for HIV.
"People's lives are being ruined by this very faulty test," she says. "You get the results and it's downhill from that point on. Doctors need to treat symptoms, but they don't do that. All they care about is if you're positive. If you're positive, you're screwed."
Rethinkers have been combated quietly over the last 20 years, but more high profile attention on the movement in the past few years has prompted scientists that support the link between HIV and AIDS to openly refute the rethinkers' claims. Facing the public doubts of the South African government in 2000, 5,000 scientists, doctors, and researchers, including several Nobel Prize winners, signed the Durbin declaration that reaffirms that HIV causes AIDS.
Earlier this year, after what they saw as a one-sided story on rethinkers in Harpers magazine by a writer immersed in the rethinkers movement, Moore and other HIV scientists and doctors began the website www.aidstruth.org to refute the claims in the article. They have since updated the website to combat other claims by the rethinkers, whom they refer to as "denialists."
"These people are basically being persuaded to kill themselves," Moore says.
The argument begins with what causes AIDS. Rethinkers attribute the disease, in large part, to drug use. Duesberg notes drugs have long been known to deplete the immune system and an early study of AIDS cases among gay men found a large number of them used recreational drugs, primarily poppers, an inhaled drug used as a sexual stimulant.
"It's a matter of dose and time and genetic constitution," Duesberg says, noting that drugs effect different people in different ways the same way that smoking does.
But a 1993 study that followed 715 gay men for more than eight years found that 350 men who never acquired HIV noted "appreciable" drug use. Another 2005 study found a strong link between poppers and unprotected sex among San Francisco gay men, suggesting that even though the drug may not cause HIV/AIDS, it could place users at increased risk of contracting HIV through unsafe sexual intercourse.
If drug use causes AIDS, rethinkers then note that the concerns of sexual transmission are moot because it cannot be spread this way. Martin says that she does not use protection during sex with her husband. She points to a study by California scientist Nancy Padian that studied heterosexual couples where one was HIV-positive and one was HIV-negative and found that transmission of the disease was far less than one percent (as low as 1 in 1,000) among heterosexual couples.
It's Padian herself who refuted these arguments earlier this year on www.aidstruth.org. She notes that her study regarded couples that were counseled to use protection, not avoid it.
"Individuals who cite the 1997 publication ... in an attempt to substantiate the myth that HIV is not transmitted sexually are ill-informed, at best," she stated. "Their misuse of these results is misleading, irresponsible, and potentially injurious to the public."
Padian notes that HIV transmission between couples can be as high as 20 percent, depending on risk factors including other sexually transmitted diseases. Cornell professor Moore says that Padian is not alone and that certain lines from scores of studies have been selectively cited to further the rethinkers movement.
"Then these things become urban legends," Moore says.
Rethinkers also claim that the standard HIV test is woefully unreliable, claiming that as many as 70 factors can cause a false-positive.
"HIV has never been isolated in its pure form," Bauer says, "which means that these tests have never been validated."
This claim by rethinkers is based in fact. The majority of HIV tests aren't designed to identify HIV. They actually find HIV antibodies, or proteins the body creates to defend itself against HIV.
Moore says that technology has improved by leaps and bounds since the virus was first identified and that the rethinkers often base their logic on outdated data. To combat inaccuracies, HIV tests have been confirmed through a second, different test for several years. The Centers for Disease Control notes that the two tests together have a 99 percent accuracy rate, and Cantey says he'd put the accuracy rate at 99.9 percent.
Not only is the HIV test quackery, rethinkers argue, but so are the drugs HIV and AIDS patients are given to battle the disease.
Much like the test, medicines to combat the viral load have evolved as older drugs, which time has shown to be less effective, are replaced with newer drug regimens. Some rethinkers say that drugs like AZT cause AIDS and others say that the toxic side effects of the drugs have led to death.
"It's an example of the old saying that the operation was a success, but the patient died," Bauer says.
Today HIV and AIDS patients are typically given a cocktail of medicines. "Use of potent anti-HIV combination therapies has contributed to dramatic reductions in the incidence of AIDS and AIDS-related deaths in populations where these drugs are widely available," the NIH's website states. "An effect which clearly would not be seen if antiviral drugs caused AIDS."
Africa's high-profile struggle with AIDS has also received the ire of the rethinkers. People with AIDS in Africa are dying from the same diseases that have always plagued them: wasting, malnutrition, and tuberculosis. Rethinkers claim this is because AIDS is not an epidemic in Africa and that the perceived plight is just a way to pull money to the region and bolster the global fight against AIDS.
"I've seen commercials of kids starving in Africa," Martin says. "That's nothing new. Now they have something new they can blame it on."
But just as AIDS-defining illnesses in America began appearing at much higher rates than seen before, these diseases in Africa are showing unusual trends when it comes to AIDS patients, attacking them at much younger ages and including those middle-class groups who aren't malnourished. A 1995 study found that HIV-positive people in Cote d'Ivoire were 17 times more likely to die from tuberculosis than those not infected with HIV.
Rethinkers also note that the disease is affecting different races and regions differently, something uncommon with communicable diseases. The NIH and others note various reasons for the difference, including in what groups the disease was first recognized and sex practices.
These and other attempts to refute the claims of the rethinkers have done nothing to quell their continued belief that everything the world has been told about HIV is wrong. Noreen Martin is active daily on a number of rethinker web forums and she has started her own website to further the cause and chart her own progress.
"Let people make up their own mind," Martin says. "I made up my mind and I'm not turning back."
Dec. 1 – World AIDS Day Charleston Events
On Friday, the world gathers to combat the spread of HIV during World AIDS Day. In Charleston, Lowcountry AIDS Services and other groups will expand this year's events to two days.
Events will begin on Thurs., Nov. 30 with information booths set up from 11 a.m.-1 p.m. at the College of Charleston's North Campus, Trident Technical College's Main Campus, The Citadel, and at the Medical University of South Carolina, which will also host a luncheon with guest speaker Dr. Preston Church.
On Fri., Dec. 1, there will be events at MUSC's horseshoe from 11:30-1:30, at the College of Charleston from 11 a.m.-1 p.m. at Rivers Green, and from 11 a.m.-2 p.m. at Trident Technical College Palmer Campus. Roper Medical Center and St. Francis Medical Center will also have panels of the AIDS quilt on display from 10 a.m.-2 p.m.
A candlelight march and rally will begin at Marion Square near the Embassy Suites at dusk, around 5:30 p.m., with marchers walking to the Cistern at the College of Charleston where they'll have the opportunity to call there loved one's name publicly. There will be an area of healing and comfort at the Cistern with lay pastors and counselors and refreshments for those that need assistance.
Glass luminaries dedicated to those lost from HIV/AIDS are also available for $10. Their names will be labeled onto the luminaries, which can be retrieved at the end of the event. For more information, contact Mark McKinney at 849-8531.
A little more than a week later, on Sat., Dec. 9, more than 100 red ribbon retailers in downtown, West Ashley, and Mt. Pleasant will host Shopping with Friends, a fund-raiser for Lowcountry AIDS Services where 10 percent of the sales on that day will be donated to the AIDS organization.
The event starts with a kick-off party from 5-8 p.m. on Dec. 8 at Saks Fifth Avenue on King Street. On Saturday morning, there will be a brunch from 9 a.m. to noon at the Renaissance Hotel with complimentary gift bags. For more information on the events, visit Lowcountry AIDS Services online at www.aids--services.com/shopping.html or look for the posters in participating stores. –Greg Hambrick
AIDS By the Numbers
•39.5 million people in the world are living with HIV and 4.3 million were newly infected in 2006.
•Eastern Europe and Central Asia are outpacing Africa in the number of new AIDS cases, with 270,000 in 2006, compared with 170,000 in 2004.
•1.2 million people in the U.S. had HIV in 2005.
•Men still account for about 73 percent of the HIV diagnoses in the U.S., with almost two-thirds of those infections attributable to unsafe sex between men.
•There were 13,508 people living with HIV/AIDS in South Carolina by the end of 2005.
•560 people tested positive for HIV/AIDS statewide in 2005, compared with 832 in 1995.
•4,156 people were tested for HIV in Charleston last year. Of those, 51 tested positive, about half as many as a decade ago.
•Berkeley and Dorchester had a combined 1,831 HIV tests, but accounted for less than 1.2 percent of the positive tests statewide, compared with more than 3 percent in 1995.
Source: UNAIDS, SCDHEC