Where Are We Going?
The great tragedy is that we continue to squander a majority of out research dollars to develop drugs that an overwhelming majority of those who need them will never be able to afford.
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This is something of an open letter to the community infected by HIV/AIDS. My rage about where we stand and where we are headed is in dire need of venting. I trust that Body Positive can be a forum for my thoughts and concerns, which are rather different from the mainstream of thinking concerning this plague.
A Global ViewFigures released by the United Nations and Amnesty International prior to World AIDS Day were staggering in their immenseness; also staggering was the deafening silence that followed from the world community. There are now 33 million people infected worldwide, and two-thirds of these are in sub-Saharan Africa, where 2 million people died from AIDS in 1998 alone! The numbers dwarf those of our own country, although we act as if AIDS is merely a local and national concern.
Meanwhile, as Body Positive has pointed out, there is a seemingly unlimited number of AIDS service organizations working in varied, often redundant, areas, and each is looking for that small handout that will allow continued existence. Yet as far as I can see, we continue to settle for crumbs at best -- this in a country that allows $125 billion per year for corporate welfare, triple that amount for the Pentagon, and even gave the Pentagon $1.23 billion more than it requested last year!
Many of you may be wondering what I'm going on about. The significance of all this is that we seem to have unlimited funds for the military, the prisons, the failed drug war, and aiding the global marketplace, yet the amount of money that goes toward this most serious plague is minuscule and an insult to all of us. This must change.
AIDS activism too often seems to add up to little more than "pills and plays." Of the small amounts of money allocated by the government, too much is routed back to the pharmaceutical multinationals, who are not only monopolizing research but simultaneously spending millions to impede healthcare legislation, including universal healthcare and an effective patient bill of rights. The relationship between these pharmaceutical corporations and various ASOs too often takes on insidious dimensions that stunt real dialogue.
I believe two things need to happen to jump-start the movement toward conquering AIDS: The first is to acknowledge the entire infected and at-risk community of the entire world, and realize that we are just a small part of it. Gay males in particular, a group to which I belong, too often act as if we were the plague's elite rather than the small minority that we constitute. While many of us worry about what food to take with our medication, a majority of the world's infected don't even have clean drinking water, let alone any semblance of healthcare. The great tragedy is that we continue to squander a majority of our research dollars to develop drugs that an overwhelming majority of those who need them will never be able to afford. We cannot win the battle against HIV/AIDS unless we win it for everyone.
Secondly, we need to let our elected officials know that it is time to treat this plague with the urgency it deserves. We must demand heroism in the name of humanity in general and AIDS in particular, rather than in the name of the "free market." We must demand that our government declare war on AIDS, instead of pursuing the failed war on drugs. The latter has filled our prisons to overflowing, and these have become state-sanctioned breeding grounds for HIV/AIDS.
We have been shown our government's capricious callousness through both the needle exchange and medical marijuana issues. We have been told that it is acceptable for more citizens to become infected, even women and children, rather than provide clean needles. We have been told that we will be locked up if we choose to medicate with the harmless herb marijuana, even if we are sick and dying. The state's priorities are consistently in conflict with those geared toward ending this plague.
I am also distressed that there seems to be so much profit in this plague, and this is just one more issue that begs for further debate. If we don't address some of these issues and work more intelligently, not just for access to more pills but for the full spectrum of human rights, we will continue to lose the battle. Until we embrace the entire world AIDS community, we will never receive the attention, effort, and funds that are appropriate and commensurate to the size this epidemic has now reached.
The Place for Differing ViewpointsI write this in part because I have been so angered at the staleness of the debate. If one more "writer" offers the now tired cliche that we must remind ourselves that "it's not over," I think I'll scream. Perhaps the reason donations are down and the movement seems so unenergized is that nobody's saying anything new or even worthwhile.
Those like myself -- someone who has refused AIDS meds from AZT to protease inhibitors, who believes nutrition and a vegetarian diet are key, who medicates with marijuana, and who believes all of these factors are key to my being a long-term nonprogressor -- are not part of nor welcome in the dialogue. If I go to a support group or ASO and state these facts, especially my aversion to AIDS meds, I am treated as a pariah at best, and clearly made to feel unwelcome. It happened many times before I realized that there was nothing for me there and that I was an outsider to my own disease community.
Nutrition is certainly one area in which common knowledge has been lacking. It is now an undisputed fact that a vegetarian diet gives the greatest benefits not only in the case of immune deficiency but when dealing with virtually any illness there is. [Editor's note: While the author's views on nutrition are not unique, HIV nutritionists and other healthcare professionals do not consider vegetarianism the only standard of care for people with HIV/AIDS. They stress that whatever diet is adopted should provide adequate amounts of macro- and micronutients.] Patients should eat what they want, especially when dealing with an illness that suppresses the appetite. But it is important to know that meat is loaded with bacteria, pathogens, and unregulated amounts of drugs, including antibiotics, for starters. Dairy products are not only loaded with drugs given to the cows but contain the controversial bovine growth hormone, while containing little in the way of nutrients.
Frankly, I cringed when I saw some of the recipes and tips you printed a few issues ago, including, for instance, pork ["One Pot, One Spoon, One Delicious Meal," by Frank Abdale, and "HIV and Nutrition," by Donna Tinnerello, September 1998]. What are you thinking? Recommending cheap cuts of meat for those economically challenged is a real shame. Also, you made it look as if the only alternative to an animal choice in most cases was tofu, which is untrue and unreasonable. Becoming a vegetarian not only afforded me huge rewards in terms of surviving this disease, it also introduced me to a wider variety of foods, including many ethnic choices, and it is cheaper. Why worry about preserving meat in a cooler and risk either E. Coli or Salmonella, which are not only common in uncooked meat but are highly dangerous, and even potentially deadly?
Once again, we should ultimately eat whatever we want, but we must be informed of the facts to make proper choices. And by the way, green leafy vegetables are a much higher source of calcium than dairy products, though they were not listed.
One last gripe: I took great offense at Jameson Currier's piece in a recent issue of Body Positive ("A Personal History of the Epidemic," November 1998). I was livid that he considered himself a survivor of AIDS despite being negative. I am happy that he has retained his negative status, but he is no more a survivor of AIDS than he is a survivor of cancer, malaria, or any other disease he never carried. By considering himself a survivor merely because he is a negative gay male, he is perpetuating the myth that AIDS/HIV is a gay disease, just one of many obstacles to our cause. No doubt he has suffered great loss, as have we all, but I found the thrust of the piece to be ultimately disrespectful and arrogant. It is a perfect example of the kind of nonsense that has frozen progressive dialogue within the AIDS movement.
I'm not a professional writer, but I had to try to communicate some of the anger and concerns I've had about this nightmare we're all involved in. Once again ... we are losing the war and we must demand a response from our government that is appropriate to the extent this plague has now reached. Our voices are mostly silent in the national debate, while the media obsess about a litany of nonsense, and we are losing our basic constitutional right to protest, especially here in New York.
Come on, people. It's time to wake up and demand to be heard, to stop settling for the meager handouts and concessions that do nothing to reduce the death count.
This article was provided by Body Positive. It is a part of the publication Body Positive.