Understanding the AIDS Crisis
— Corey S. Dubin
Twelve years into the AIDS crisis and what has changed? People are still quietly dying and the federal government continues to drag its feet to ensure access to care and treatment for those most in need. In communities of color across this country the virus continues to spread, devastating the lives of individuals and families who lack access to the most basic medical care. For the most part, quality HIV medical treatment is only available for those who can afford it.
Poor women are especially hard hit as the medical establishment and the government continue to ignore how the HIV disease impacts uniquely on women. Meanwhile infected children in the inner cities and in poor rural communities have no access to HIV-specific care and are dying at alarming rates. Mired in poverty, infected children are dying amidst the ambivalence and ignorance of our society.
This is the legacy of AIDS. This is what we are faced with in 1994, that bigotry, homophobia and racism remain the basis of the U.S. response to AIDS. The AIDS epidemic has demonstrated in the most dramatic and vivid way that in the richest country in the world, health care remains a privilege and not a right.
The global AIDS epidemic has challenged both nations and peoples to consider issues that in many countries were being swept under the carpet. In the United States the AIDS crisis has illuminated the crumbling health care system, while at the same time American society is still in denial about death and dying. But in addition to denial, this country still seems intent to lay blame for this nightmare on those already afflicted.
AIDS has also impacted many of us in more direct and tangible ways. Whether through a friend, relative or in this instance myself, the virus and its devastating impact has forever changed our lives.
Social Debacle or “Punished by God”?
The real tragedy of AIDS lies in the racism, homophobia and negative response of the U.S. government, the mainstream medical establishment, the media and the society at large. The dynamic created by this response has left people with AIDS and those infected with HIV in a state that one infected friend recently described as “a living hell.” The central themes of America's response to AIDS are the lack of available medical care, the lack of financial support to afford the astronomically priced, limited care and the indifference, ambivalence and outright anger of U.S. society.
Early on, AIDS was labelled the “gay disease.” The country's religious right (Jerry Falwell et al.) took the position that AIDS was God's punishment for non-church sanctioned sexual behavior. Also tossed into the “punished by God” theory were intravenous drug users, who are the wretched of the earth as far as U.S. conservatives are concerned. The demonization of those considered outside the accepted social reality (“as American as apple pie”) has reached an all-time low since the appearance of AIDS.
Gays, lesbians, IV drug users and anyone else “dirty” enough to be infected were the targets of successive rounds of trashing in both mainstream and conservative press. Throughout the 1980s editorials appeared in newspapers and on radio and TV implying -- or even directly stating -- that those with AIDs were a threat to our children.
In fact, from Florida to Indiana to California, people with AIDS and HIV-infected persons (in many instances HIV-positive children with hemophilia) were targeted and attacked by local citizens. Communities consumed with fear vented their hostilities on children, some of whom were struggling with full-blown AIDs while others were HIV-positive.
Two particular incidents drew the attention of the whole nation. In a Florida community, a family with three sons -- with hemophilia, all HIV-positive -- had wanted to enroll their sons in the local public school. Their home was burned to the ground, apparently by angry residents.
Meanwhile, in Indiana the story of Ryan White was unfolding. White, a teenager with hemophilia and full-blown AIDS, was attempting to continue as a student in the public school system. His presence prompted some parents to keep their children out of school. Other parents agitated against White at the school board as well as in the wider community.
These attacks reveal the ugliest side of our society: fear and bigotry resulting in actions that can harm those targeted. Since then Ryan White has died. Ironically, White is being honored nationally while the bigotry he struggled so courageously against remains in force.
Fortunately, in both cases communities extended helping hands and welcomed both of these families following these unconscionable attacks. While some communities have responded with caring and support, the overall societal response remains fearful and bigoted, continuing to blame those afflicted for the morass we find ourselves in.
Heath Care As A Right
The AIDS epidemic has challenged the already inadequate and overextended U.S. health care system. The system is currently collapsing in on those most in need of effective and comprehensive medical care. Meanwhile the AIDS epidemic has illuminated the seedy underbelly of the U.S. medical establishment, where a small minority of medical corporate leaders and doctors are continuing to enrich themselves. At the same time, a growing proportion of people are faced with inadequate health care -- in some cases, even non-existent -- for themselves and their children.
The situation has reached such a critical juncture that even the American Medical Association (AMA), the organization in part responsible for the creation and maintenance of the current reality, is now calling for some form of national health insurance. This is also an ironic twist given that since the 1960s the AMA has opposed every single initiative toward the creation of a national health insurance system.
Now that our privatized system of health care edges toward collapse, the AMA is “ready” for more direct government intervention to salvage it. One person with hemophilia I know stated that it “does not seem too far-fetched to conclude that the AMA is now turning to Washington because they have reached the limit of personal enrichment in the context of the current declining health care system.”
Clearly we can see that certain U.S. researchers and doctors have directly profited from the AIDS epidemic. These are the important so-called experts who have a personal financial stake in companies marketing products relating to the identification or treatment of AIDS. To many of us directly confronting the murderous AIDS, these crass and opportunistic conflicts of interest demonstrate the exploitative and dehumanizing approach that characterizes the American medical establishment.
Another component of the AIDS struggle is the multinational drug companies and the power they exercise over our very existence. AIDS has been and is a major growth opportunity for the drug companies who claim to be working in the interests of the people of this nation, and of the world.
Especially since World War II these drug companies have exploited illness and disease to the enrichment of the stockholders and executives. Ultimately human beings are reduced to being test animals and just another vehicle for economic enrichment. These companies extract profits in the hundreds of millions of dollars from people with AIDS and their families.
The question of one's right to adequate and comprehensive medical care has yet to be settled in the United States. The AIDS crisis has clarified, even more, the focus and bias of our health care system. Whatever the improvements that have occurred over the last decade in AIDS care have only been accessible to those with white skin, money and some degree of political influence. While many advances have been the result of hard fought struggles, primarily by the gay and lesbian community nationally, the benefits have, for the most part, been enjoyed by white middle- and upper-class citizens.
In the area of alternative treatments such as acupuncture, herbs and homeopathy, class distinctions have again been paramount. At a national AIDS and alternative health care conference in Los Angeles five years ago it was as if AIDS was strictly a white male problem. Again, this was the case at a June 1993 Conference on Alternative Therapies for AIDS in San Francisco. Those attending and presenting were again exclusively white and middle class. Although more women were represented, they were also white and middle class. Those most in need of alternative treatments were not invited and not present: poor people, those from communities of color, people with hemophilia.
All one needs to do is look at the breakdown of cases nationally to discover that the majority of new cases are found in inner-city communities of color where the availability of good treatment and follow up is virtually non-existent. Indigenous people, the most oppressed and exploited sector of U.S. society, also find their right to health care totally disregarded. The so-called Indian Health Service can't begin to handle the spread of AIDS in indigenous communities and reservations across North America.
Another area that reveals the complete failure of our society is in the status of women and how the AIDs crisis effects them directly. Women of color and poor white women suffer the dual ills of being at the bottom of the economic picture, facing the sexism and patriarchy endemic to our society. For women of color, sexism and racism combine to result in a total lack of medical services for women with AIDS. The impact is even more devastating if we look at single women with children. For these women and their children, society has articulated a resounding “no” to their needs. Child care for HIV-infected mothers remains almost non-existent while mothers with HIV-infected children find both medical care and daily child care unavailable or prohibitively expensive.
The U.S. health care system is collapsing in upon those most in need of adequate and comprehensive care. This is occurring as the overall U.S. economy is in decline. Both federal and state governments are taking the hatchet to all but the most politically sensitive social programs. This, in turn, magnifies the impact on those with AIDS and people infected with HIV.
AIDS, Blood and Money
One of the communities that first showed the symptoms of AIDS was the hemophilia community in the United States and Europe. Persons with severe hemophilia (a clotting disorder that results in recurrent, painful and debilitating joint and muscle bleeding) are treated with factor concentrates which are produced by fractionating blood into its component parts and extracting the clotting factor. These products are manufactured from large pools of plasma collected from thousands of donors.
People with hemophilia are analogous to the canaries that used to be taken into mines. When the canary fell over, the miners knew to evacuate the mine -- the canary first felt the low oxygen level, thus functioning as an early warning system.
We who have severe hemophilia are the early warning system for this nation's blood supply. When the blood supply is contaminated, it will first manifest itself within the hemophilia community. This is exactly what occurred in the early 1980s.
By 1983 AIDS became the leading killer of persons with hemophilia. In the U.S. hemophilia community of roughly 20,000, half are infected with HIV. Currently one person with hemophilia a day is dying from AIDS. A whole generation of this community is being wiped out -- in large measure due to the profiteering and callous action of four multinational drug companies. According to the companies, while this is a tragedy, it could not have been prevented. Company executives regularly claim that no one could have predicted or prevented the onset of AIDS in the blood supply.
These claims are not credible when subjected to the historical evidence. By early 1983 the manufacturers of blood products knew very clearly that they had a significant problem and that products currently on the shelf could well have been contaminated with the AIDS virus. The federal agency in charge of ensuring the safety of the blood supply, the Food and Drug Administration (FDA) and the American Red Cross were also aware of the problem.
One would expect that at this juncture, the users of blood products would have been warned of the imminent and life- threatening danger of being infected through tainted blood and blood products. Tragically, this was not what happened. As a result, 10,000 persons with hemophilia have become infected with HIV as well as over 25,000 people, who have been infected by tainted whole blood.
On January 14, 1983 the Centers for Disease Control (CDC), the American Red Cross, the National Institute for Health, the American Blood Banking Association, the Association of Community Blood Banks, the Food and Drug Administration, the Canadian Red Cross, the Canadian Hemophilia Society and representatives of the Blood Products Manufacturers (drug companies), met in New York at a meeting sponsored by the National Hemophilia Foundation (NHF).
At that meeting AIDS was discussed and reviewed at length. Everyone in attendance was warned by the CDC that AIDS, in all likelihood, was caused by a blood-borne virus. There was a clear warning regarding the dangers of contaminated blood and blood products. Yet following that meeting no official warnings were given. The FDA did not move to recall any blood products from the market.
One would have expected the National Hemophilia Foundation to immediately issue warnings to its members. However this was not the case. The NHF receives money from the drug companies, as well as substantial grants for research for the doctors on their medical and scientific advisory committee. This close relationship between the drug companies the NHF had tragic consequences. The NHF continued to advise its members to use the blood products, advice we now know contributed to 10,000 HIV infections.
Meanwhile, back at the FDA, no immediate action was taken. The drug companies were allowed to aggressively market the existing stocks of untested blood products. In fact, no FDA product recalls were instituted until 1985, two full years after that fateful meeting in New York. Even then, the first product recalls were voluntary, not mandatory, leaving the drug companies more leeway to dump contaminated products. When the FDA finally undertook mandatory recalls, some of the manufacturers dumped contaminated products in Costa Rica and Japan. As a result, 1200 persons with hemophilia in Costa Rica and over 2000 in Japan became infected with HIV.
Profits and greed -- not safety -- motivated decisions by the drug companies. People across the United States trusted the drug companies and their federal regulators to place safety above all other concerns. This trust was clearly unwarranted. It resulted in the devastation of people's lives.
Currently we are told that the blood supply is safe and that there is nothing to be concerned about. Do we trust them again? The mounting evidence indicates that serious problems of contamination still exist.
Last August a letter was sent to the Miami Herald from a lab technician working for the South Florida Blood Services of the American Red Cross. In that unsigned letter, the technician detailed the filthy conditions at the lab, the use of chemicals and reagents that were long past expiration and, most alarming of all, the fraudulent labelling of blood that had been unrefrigerated for over twenty-four hours. She also cited the usage of blood collected in foreign countries that was not being screened for hepatitis and HIV before being distributed in this country. She described testing one hundred units of foreign-collected blood and discovering that four units were positive for HIV and three for Hepatitis. This was blood already labeled for shipment and usage.
Do these revelations warrant trust in the safety of the nation's blood supply? The Red Cross takes in $200 million in revenues from blood each year. One would expect with that level of income their operation would be squeaky clean. Apparently that is not the case.
Meanwhile gamaglobulan, an immune modulator, considered the safest blood production on the market, is the focus of an FDA investigation as one of its major manufacturers, Baxter Health Care, recently recalled its product due to hepatitis contamination. One researcher commented that “We ignored the warning signals in the early 1980s and it appears that we are again going down that same path.”
The level of conflict of interest at the FDA is so deep that it is a miracle they can regulate the drug companies at any level. Doctors, researchers and administrators go back and forth between the FDA and the drug companies. The Blood Products Advisory Council, a key policy organization, is dominated by drug companies and the blood bank industry. This must change if we are to ensure the safety of the country's blood supply and prevent further infection of ourselves and our children.
This is the situation that resulted in my own infection at the beginning of the AIDS crisis. I have buried most of the men with hemophilia that I grew up with and do not intend to see this occur again. Yet the only way to prevent this is to demand the immediate elimination of profit from any aspect of health care, including blood products.
The legacy of AIDs must ignite change: we must create a humane and dignified health care system. Unless we confront the drug companies and medical establishment today, we will surely face yet another crisis.
We must also reject the notion that there are “innocent” and “guilty” victims of AIDS. We have all been victimized by the AIDS crisis and society's failure to respond. Action and struggle represent the only path from victimization to empowerment. Organizations like ACT-UP, the Committee of Ten Thousand, Critical Path, Being Alive and others are currently changing the face of the AIDS struggle through empowerment. Struggle and the creation of a community-based and controlled health and wellness care system can ensure that the deaths of hundreds of thousands of our brothers and sisters will not have been in vain.
AIDS and the Left: Where and When?
When attending AIDS organizing meetings, I rarely find representatives of the traditional left or the solidarity community present in any significant fashion. It is as if the AIDS struggle has not penetrated the consciousness of those who are working for fundamental change in this country.
I have yet to observe people and organizations of the left mobilize in response to AIDS as they did over the contra war in Nicaragua or Washington's support of dictatorship and oppression in Latin America.
There is a refusal to admit that the AIDS crisis is one of the most important social justice struggles of our time. The traditional left and solidarity communities have in most areas remained apart from the AIDS battle. One could explain this by looking at the difficult time individuals and U.S. society have in dealing with death, especially at what is perceived as a horrible death.
Yet encapsulating the AIDS struggle are the issues of race, class, gender, sexual preference, economic power, justice and human dignity. The same structural inequalities we find throughout society play a central role in the AIDS crisis. Access to health care becomes a life and death issue when one is confronted with HIV infection and progression to AIDS. It is beyond the average person's ability to comprehend facing HIV and finding health care is not available -- specifically, HIV treatment is out of reach, due to the cost and the general social indifference. Adding HIV infection to the existing daily degradation of poverty reinforces one's sense of powerlessness and hopelessness, destroying both individuals and families.
For those of us coping day-to-day with this reality, the only rational choice can be struggle: to fight back with everything at our disposal both as individuals and collectively. We do this in the face of knowing that our communities are considered expendable by the powerful.
It is time for the left and progressive communities to join with AIDS activists nationally and internationally to struggle against the medical establishment, the drug companies, and the government. Together, our collective struggle can overcome this devastating disease and the bigoted, racist and sexist response to it.
ATC 50, May-June 1994