Death in the family. AIDS is killing millions of our people, both here and in the Motherland. Here is a report on the global proportions of this disease and its frightening implications

So many people still talk about HIV disease, or AIDS as it is more commonly known, as if it only happens to somebody else, never to them, their folks or the people they know. But I've been going to funerals and memorial services for a long time now, saying farewell. Been reading the obituary page with close attention and gotten used to the phone calls that tell of yet another one gone.

When people first began to slip away, the disease barely had a name, and the death count had only begun to climb. But today we are in the midst of a global epidemic. From 8 million to 10 million people from every nook and cranny around the world are estimated to be infected. And despite the myth that lingers in some quarters that primarily homosexuals are at risk, about 60 percent of those infections were spread through heterosexual intercourse. During this decade, the most conservative estimates are that AIDS will claim the lives of as many as 3 million women and children, and more than a million uninfected children will become orphaned as a result of AIDS.

By now it should be obvious to all that the human immunodeficiency virus (HIV) that causes AIDS does not discriminate between gay and straight, male and female, adults and babies, drug abusers and the clean and sober. Equally obvious and far more unsettling is the fact that African and African-diasporic people make up the bulk of those affected. It is estimated that more than half of all HIV-infected adults who have developed AIDS and children who are HIV-infected or who have contracted AIDS are in Africa, where some 5 million people are believed to be infected with the virus. In the United States, more than 25 percent of all people with AIDS are African-Americans. The epidemic's impact is also being felt in the Caribbean, where several islands report some of the world's highest AIDS-case rates. Day by day the numbers grow.

Do these numbers jar you? They should. Yet as terrible as they are, they don't begin to tell the full story. They don't begin to examine the politics that have led to a decline in accessible, affordable health care for our people, or the fact that most of the treatments currently in use are beyond the means of and therefore unavailable to Africans or any of the world's poor people. Condoms are in short supply and far too expensive for regular use by people in the African countries that are most affected, and doctors and fully equipped hospitals are and have been in short supply. Nor do the numbers reveal that in some quarters we are considered disposable by those who are comfortable in the belief that the deaths of millions of Africans are somehow acceptable.

Yes, millions of our people, perhaps many times more than estimated, are infected, ill and dying. But those numbers barely indicate the way this epidemic increases and intensifies the burdens our people already bear. In Africa, famine and drought, war and disease, exploitation and oppression, malnutrition and an endless list of needs and woes serve up our people to the grim reaper. Here in America, where oppression and exploitation are also omnipresent, drugs and violence, hunger and homelessness, disease and neglect, and all the demons of despair help fill death's plate. The epidemic in Africa imperils already weakened economies, swamps frail social and health-care systems; here it strikes ever more deeply at our urban poor, increases our powerlessness, exacerbates class divisions and weakens fragile communities and institutions.

No one walks through this life in total isolation. We have families, friends, lovers and children. We live in neighborhoods and in communities with countless others. AIDS is a family disease, and it has become our family disease.

To understand what this epidemic is doing to our families, we must look at the many ways it affects women and children, both the sick and the well. Here, as in Africa, women and children are increasingly at risk. Of the more than 3 million women believed to be infected worldwide as of 1990, 80 percent are in sub-Saharan Africa. In the United States, more than half of the women with AIDS are African-Americans. Some 500,000 HIV-infected infants are believed to have been born in Africa by 1990, and by the close of 1992 they will number nearly a million. In America eight out of every ten children with AIDS are either African-American or Latino.

Too often, especially in Africa, women learn of their HIV status when a baby falls ill or is diagnosed with the infection, or when a husband or lover sickens. But care-giving usually takes precedence over a woman's own health needs, and it is the backbreaking work women do throughout much of Africa that ensures children's survival. There, too, given the expense and unreliability of infant formula, HIV-infected mothers continue to breast-feed, even though this increases the physical toll on their bodies and may place healthy babies at risk of infection. And because we are a people who place high value on a woman's fertility and fecundity, many infected women become pregnant again despite the risks, hoping to produce an uninfected child. In this country, those pregnant women who do seek abortions are often thwarted by clinics that refuse to treat the HIV-infected, or in the case of poor women--as most of them are--by a system that increasingly limits funds for those services.

And still not enough attention has been focused on how this disease affects women, despite the fact that death claims the lives of women with AIDS faster than those of men. Most women and children diagnosed with AIDS in Africa live less than a year. And in the United States in 1988, African-American women died nine times faster than European-American women infected with HIV disease.

As has been true throughout history, women are often blamed for the spread of sexually transmitted diseases, and this epidemic is no exception. The traditional male response has always been to point the finger at prostitutes, rail that "some bitch gave it to me," or accuse girlfriends and wives of unfaithfulness. Women working in prostitution, not their male clients, are often held responsible for the spread of HIV. Besides further isolating one group of women from another, this prostitute and bad-woman bashing ignores the very real social and economic problems, especially in poor countries, that often force young girls and women into "the life." And it further stigmatizes all women who are HIV-positive, making them even more vulnerable to ostracism at a time when they desperately need support.

Yes, there are many women whose behavior puts them at risk, but there are also countless others who learn too late that their infection is the result of their partner's conduct. Now, despite comments from men who wish to claim otherwise, this is still very much their world. Economic and emotional dependency still run deep. And in a world where women are routinely bullied and battered, so, too, does fear. As a result, women often know the risks but are unable or unwilling to face the immediate threat of male censure or displeasure to protect themselves. To make matters worse, too often both sexes resist using condoms, making pleasure rather than protection the priority. Although a woman may ask, the man wears the condom. And since men often dictate sexual behavior, unless both men and women accept preventive measures and actively endorse, practice and support them, the risk to women and children will continue to grow.

Because so many women with AIDS are mothers, their precarious condition often places their children at risk. Many are the sole or primary providers for their offspring. An infected mother may be unable to work, prepare meals or properly supervise her young. Unless she has the support of family and friends, in the United States a public agency may step in, often removing the children. In Africa, the family is usually a woman's only safety net, and if that fails, starvation may result.

A mother's death often throws children into limbo, and the number of orphaned children grows. In Uganda, for example, a recent projection indicates that 5 million to 6 million children will be orphaned by the year 2010. The life expectancy for those babies infected with the virus is tragically short: The majority of them rarely live beyond the age of 5. But many of the children orphaned by this epidemic are well. In this country many of them will end up in institutional or foster care, increasing the numbers of our young who are being swallowed up in a troubled and overburdened system.

In Africa, where women bear an average of six children, the extended family traditionally rallies round. There are few orphanages and inadequate funds for systems such as foster care.

Here and in Africa, when families step in, women usually shoulder the burden of care. And because the majority of those infected are between 15 and 49, older women, usually grandmothers, are left to raise yet another generation. Often poor and in precarious health themselves, the grandmothers are caught in situations that can easily tax their meager resources and drain their spirits. Invariably the numbers of children living off the street are going to grow, children who will fall prey to drugs, crime, prostitution and HIV.

Yes, AIDS is a family disease, our family disease, which to one degree or another imperils us all. And poverty, ignorance, apathy, fear, denial, racism, sexism and oppression are the twisted fruits this disease feeds upon.

FIGHTING THE ODDS

When so many of those people I knew were dying, it was popularly assumed that AIDS was a disease that only affected "them," meaning gay men. Using this to justify and excuse their homophobia, some went so far as to say that it was an act of God, directed at "them" because of their "deviance and sin." That "they," along with the IV-drug users who were also among the sick and dying, "deserved it." As a result there was little real compassion and less understanding of the enormity of the crisis we were facing. And to our eternal shame, many of those who fell ill and died were turned into pariahs, who in their hour of greatest need hid away or were shunned and often died terribly alone.

Unfortunately, in part because of the early labeling of certain groups--homosexuals, IV-drug users, prostitutes--as most at risk, we still often fail to make the connection, to understand the commonality of suffering, our true potential risk or the fact that we are all affected by this epidemic. Too often those labels served to feed our own prejudices, distancing us from one another, muting community response. But the very nature of the disease itself, the fact that it is primarily sexually transmitted, is what truly complicates matters.

Despite the raunchy songs and bar talk, the sexual posturing and braggadocio, public discussion of sexuality and sexual behavior has always been frowned upon, our attitudes and codes having been set primarily by the Black church--sex and sin, sin and sex. When it comes to sexual matters, we tread on dangerous, often confusing and contradictory ground. But prevention depends on awareness and acknowledgment of risk, honesty and responsible behavior. It requires commitment on the part of individuals, communities and governments, frank talk and real information. People have become infected during one-night stands and on the operating table. And, unfortunately, most folks are reluctant to admit to high-risk behavior, be it bisexuality or a long list of former lovers. It's not good enough simply to tell people today to "be monogamous." The fact that people can have been infected 10 or 12 years before any symptoms appear continually has to be spelled out and hammered home. And we have to make it clear that this puts untold numbers of us at risk, turning every act of unprotected sex into a form of Russian roulette.

If this sounds alarmist, consider the fact that AIDS is the leading cause of death for women between the ages of 20 and 40 in New York and other cities, and that the incidence of other sexually transmitted diseases is increasing at an alarming rate among African-Americans, especially younger people. Common sense dictates that any woman whose behavior or whose partner's behavior has been or is potentially risky should get tested. If her partner admits to having engaged in high-risk behavior or she suspects that he has, she should refuse to have sex with him and insist that he be tested. If there ever was a time when to-the-bone honesty was needed, it's now. Being sorry after the fact just doesn't get it when protection, information and prevention are available. Unlike our sisters in Africa, where condoms are expensive and not readily available and where women are far more sexually subservient to men, we have the means of protection and potentially more power in bedroom politics. What we need to remember is that this is not a time for fatalism and passivity, it's a time for action.

Perhaps if the HIV virus were something you caught like the flu, we would have moved to embrace our ill and dying sooner, understood that poverty and powerlessness render far too many of our people here and abroad vulnerable, raised the cry for adequate funding to make treatments and long-term treatment facilities available, and developed and launched aggressive prevention campaigns. Perhaps, too, we might have grasped the similarities between what is happening in Africa and what is the happening to us here.

It's not too late. Although there's no cure and no vaccine in sight, there is hope. Each year, every month and day that we can prolong people's lives is a victory, bringing them and us one step closer to more effective treatments. Today some people with AIDS are living longer than before. Far more heartening is that in North America and Europe we are seeing more and more cases where early diagnosis of HIV infection in combination with aggressive treatments has helped to stave off the onset of AIDS. The list of drugs and treatments here continues to increase, though most are experimental and still in clinical trial. Some drugs, including AZT, alone or in combination with other drugs, may control the virus that causes AIDS. Others such as interleukin-2 and alpha-interferon are thought to help strengthen the immune system. Treatments such as aerosol pentamidine or a combination of drugs such as AZT plus interferon combat the infections and cancers that attack AIDS patients. And there are also countless homeopathic and nutritional therapies being applied.

Some people today who tested HIV-positive in the early 1980's remain in good health and have not developed AIDS. Most of them are Europeans and European-Americans who resist being passive victims by pushing for access to experimental drugs and inclusions in clinical trials. It has primarily been gay men who have launched the most vocal and vociferous public outcry, who lobby and push the government and medical establishment to do more. We can and must do the same by demanding that the government that spends billions on war make the same commitment in funds and will to improving health care, to AIDS research and care, and to making treatments and medicines available and economically feasible. At the same time we must begin to take greater control of our health and the behavior that puts us at risk. Yes, hope is there for some, but it will be up to us to bring the same message of hope to our people, and to ensure that our lives are not so easily forfeited.

Marcia Ann Gillespie is at work on a United Nations Development Program-sponsored book on the global impact of the HIV epidemic.

COPYRIGHT 1991 Essence Communications, Inc.
COPYRIGHT 2004 Gale Group