By Christine Maggiore
How Can I Open Minds About AIDS?
I need your advice. In trying to share Alive & Well’s message with others, many are quick to say they have seen people suffer and die from AIDS. However, they seem unwilling to examine the other side of the debate. Can you guide me to open minds on this emotional topic?
I think one way to frame your views is to emphasize that AIDS rethinking is not about dismissing or denying the tragedy of AIDS, but rather about looking for new and better solutions in order to help people stay alive and well.
You might mention that all of us on all sides of the issue have had friends, family and loved ones die from what we call AIDS. Our rethinking is based in part on the fact that all these deaths were not from AIDS, but from one of the AIDS’ defining illnesses — all of which have well-known non-HIV causes and treatments — or from the toxic effects of AIDS drug therapies — a phenomenon known as “AIDS-related death.”
You may also point out since mainstream AIDS doctors and scientists have changed their minds so many times about what we think we know, we might all benefit from re-examining our ideas about AIDS.
Here’s a quick review of some changing ideas that might help you
establish a case for the need to maintain an open mind and a
to take another look at AIDS information:
- In 1984, the US Dept. of Health and Human Services announced that an
AIDS vaccine would be ready “in about two years;” 16 years later, we
still have no vaccine.
- The US has changed the definition of AIDS four times since the early 1980s.
- In 1987, AZT was regarded as a life-saving drug, by 1993 this ideas changed: studies showed those taking AZT did worse than those who abstained, and in 1996 AZT was determined to be highly toxic, was prohibited for use as a monotherapy in adults, and blamed for causing unnecessary suffering and death in those who had taken AZT as prescribed in previous years.
- From 1984 until 1995, all AIDS experts agreed that HIV was a slow or latent virus; in 1995, they all changed their minds and adopted the idea that HIV is an active virus.
- In 1996 the new protease inhibitor cocktails were thought to extend life and be free of toxicities; in 2001, the US government changed treatment guidelines from “hit hard, hit early” to waiting indefinitely due to the terrible toxic side effects — including heart attacks, strokes, physical deformities and death — caused by these drugs.
- In 1996, protease inhibitors were promoted as being able to specifically target HIV; four years later, mainstream AIDS researchers have changed their minds and now say that PI drugs are not specifically attacking HIV, a fact which may explain why the drugs have managed to help some very ill people — recent studies show that PIs attack the microbes that cause some AIDS-defining illnesses — and the devastating side effects most users suffer.
- After years of promotion as a must for healthy HIV positives, AIDS treatment activist Martin Delaney of Project Inform changed his tune and was quoted as saying there was never any evidence that Protease Inhibitor drugs should be given to healthy HIV positives.
Thanks for writing. Let me know how it goes.
Why Do People Believe AIDS Can’t Be Questioned?
I believe that HIV does not cause the 30 diseases in the AIDS category, but when I approach the topic, people get very angry. Why are people totally willing to believe the current AIDS beliefs? Why do they believe AIDS can’t and shouldn’t be questioned?
There is a lawyer here in my town who is representing someone charged with a crime based on their HIV status. Why doesn’t the lawyer want to know that the test for HIV is not a test that actually finds the virus? He knows there is another side to AIDS because I offered him your book.
Am I causing more harm than good by passing out your books? Why won’t the big newspapers print articles stating your views? Do the drug companies that make the AIDS drugs control the media?
I’m sorry you’re having a tough time trying to introduce people to new perspectives on HIV and AIDS. In the five years I’ve been working on this issue, I’ve encountered similar resistance. I’ve tried to learn from these experiences and develop new and better ways to communicate and share ideas. I find I am much more able to establish a dialogue now than I was even a year ago, and that identifying and empathizing with the concerns of others and speaking calmly and politely to resistance is key.
While this strategy may work better than others, it’s not a magic formula. I’ve found some people want to hold onto their beliefs about AIDS no matter what. As one man recently told me, “I don’t care about the facts, all I know is that my friends died.” For some people, the idea that there may be another side to what they’ve been told about AIDS may cause them to wonder about the veracity of other news. These thoughts can inspire disconcerting and uncomfortable questions: “If a lot of what I’ve been told about AIDS is incorrect, what other important issues may have been incorrectly reported by the media?” or “If I can’t trust government and medical authorities for correct information, who can I trust?” The prospect of having to think critically about other issues can be daunting, and the anger directed at you over your views about AIDS may actually be the anger caused by a betrayal of trust.
I think it’s also important to recognize that AIDS rethinking is not for everyone. Some people feel comfortable sticking with popular opinion, and the suggestion that popular opinion may be mistaken — however diplomatically or compassionately worded— is simply unwelcome. Many people prefer to go with the flow rather than take a step in a new direction.
People who have lost friends and loved ones to AIDS can find it especially difficult — even painful — to take another look at AIDS. Information that brings into question the tests and the treatments cause many to question if their loved ones might still be alive if they had known of alternative information and all their options.
Those involved in AIDS charities have invested their emotions in the HIV paradigm and devoted their careers to popular ideas about AIDS. While some may be willing to consider new views, I find that most have little incentive to question their efforts. Doctors may also be heavily invested in AIDS, both emotionally and financially. Many work eight-hour plus days and may feel they don’t have time to look into the issues. They also risk discovering that the practices and treatments they’ve encouraged may have caused needless suffering and death. Trying to see the AIDS situation from the viewpoint of others can help us understand their resistance to new ideas and may help us identify a common ground that can serve as a basis for dialogue.
I would advise against using absolute or judgmental words in describing AIDS information. To give you an example of what I mean, someone with a great passion for AIDS rethinking once asked me to accompany her to a group where she had been trying to share her views without success. She told me her friends and colleagues wouldn’t listen to her, and after seeing her in action, I understood why. She presented her views as “the truth” implying that everyone else was lying, and called the current AIDS situation “a scam” instead of using a more compassionate phrase such as a “tragic medical mistake.” This experience taught me that how we present information is as vital as the information itself.
Like you, I have found that lawyers handling well-publicized AIDS cases aren’t usually interested in facts that challenge conventional wisdom. I’m not sure why.
I appreciate your sharing my book — or at least trying to share it!
in there, you’re not alone.
Christine Maggiore is the founder and director of Alive & Well AIDS Alternatives, a grassroots nonprofit education, support and research network, and author of “What If Everything You Thought You Knew About AIDS Was Wrong?” To learn more about alternative views of AIDS or the book, please visit Alive & Well’s website at www.questionaids.com or call toll-free 877/92-ALIVE for a complimentary information pack and schedules for free community events in the Los Angeles area.
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