My friend Susan Howe, a 60-year-old preacher’s daughter, became an AIDS activist ten years ago, after she was infected with HIV in a rape. When I asked Susan, who often tells me of the great spiritual support she got from others when she became positive, to offer a prayer for Americans living with HIV, she scoffed. “I won’t do a prayer for people with AIDS in the United States,” she said. It seemed an odd statement coming from a woman who had campaigned so vigorously in Washington, DC, against the many cuts in Medicaid and housing budgets for HIV positive people and who had spent many of her early years as a positive person caring for dying gay men. Susan told me that a single photograph, one taken thousands of miles from her home, is the reason she redirected her fierce spiritual energies away from America.
Last year, her sister traveled with her Methodist church group to sub-Saharan Africa to set up and manage a hospital laboratory. It was part of a multi-country effort to provide antiretroviral medications in countries where more than 20% of the population has HIV. “They decided to go over and build a lab for this community where people are living underneath pieces of paper, for God’s sake,” said Susan, who wanted to go along with her sister but couldn’t. If she had left the United States for more than a month at a time, she would have lost her Social Security income—the only income she’s had since becoming positive. Susan lost her job while overcoming the psychological aftermath of the rape and adjusting to her HIV medications and their various debilitating side effects.
When Susan’s sister returned home from Africa, she shared her heartbreaking photos of the trip. “There was this one picture,” Susan said, “of these two little boys in the middle of this dirt road. It’s nighttime, and they’re trying to build a fire with two sticks because their mother is in the hospital, and she’s dying of AIDS. They’re about 2 and 3 years old. In Africa, when your family is in the hospital, you are responsible for feeding them. The hospital will take care of you as well as they can with whatever meds they have. But they can’t feed you. If you die of starvation, you die of starvation. So here’s two baby boys trying to start a fire in the middle of the night so they can cook a rabbit for their dying mother.
“Every day I pray for those boys,” Susan says. “That picture burns in my brain. [It reminds me] how lucky I am. How lucky we all are here in America.”
But while I agree with Susan that prayers are direly needed for those in nations other than the United States, I would also argue that AIDS in America is as grave a concern as it is on foreign shores. Her perception that things are “worse over there” and that those with HIV/AIDS in America are largely OK is one commonly held in the U.S. Many Americans tend to think that the AIDS epidemic is under control stateside. The truth is that AIDS is as much a crisis on American soil as it is on that dirt road in Africa. The equivalents of those two young boys can be found in inner cities and rural areas throughout the United States too. While they might not need to feed a dying parent, their risk of growing up alone and destitute is far too similar.
The United States is home to the most severe HIV epidemic of any developed country, and the 1.1 million people infected in the U.S. make our HIV population the tenth largest in the world. The nine countries with higher rates of HIV infection than the U.S. are all located in sub-Saharan Africa. From Manhattan to Madagascar, from Montana to Moscow, the threat of AIDS unites HIV positive people in a global fight for social justice. The battle for the rights of people living with AIDS is an inextricable part of a larger ongoing battle for the rights of those everywhere who have been socially marginalized or even ostracized because of their sexual orientation, their use of drugs, their poverty or their gender.
On the 25th anniversary of AIDS’ first being identified in the United States, our global struggle to survive has come to a dangerous tipping point. The extraordinary progress made against the epidemic could continue to surge forward, but it could just as easily fall back.
In the third decade of the scourge, AIDS established itself as the worst epidemic the world has ever known. It has killed at least 25 million people globally since the early 1980s, and more than 41 million people worldwide are now infected (47% are women). There are 14,000 new infections worldwide each day, 6,000 of them teenagers, UNAIDS data reported in 2005. By 2010, officials project that an additional 45 million people will have become infected, many of whom will have died; the worst-case scenario estimates predict that in Africa alone, there will be 89 million additional infections by 2025.
Here at home, AIDS statistics are also getting worse, not better. In June 2005, the Centers for Disease Control (CDC) announced that the number of HIV positive Americans had surpassed the million mark, with half a million already dead. Last year, we saw 40,000 new infections of a disease that is wholly preventable.
No other epidemic comes close to the killing power of AIDS. Yet news coverage would have us believe otherwise. Avian flu is omnipresent in the international media, despite having caused only about 100 deaths since its first identification, in 1997. The threat of SARS rocked our world in 2003; so far, it has killed approximately 1,200. Ebola, disease du jour from 2000 to 2002, has killed somewhere between 700 and 1,000 people. Tuberculosis and malaria, our second- and third-largest epidemic killers, can be cured. As we know all too well, AIDS has no cure. There is no vaccine. Prevention and treatment are our only hopes, and global access to these is highly variable.
HIV is no longer confined to “high risk” groups. The virus has gained a lot of ground fast, cracking the hidden fault lines of American society. Women, teenagers, people of color and the aging population are all at increased risk. In 1985, the CDC says, women accounted for 7% of all United States AIDS cases; in 2004, they accounted for 26%. In 2004, teen girls in America accounted for 50% of all new infections among all Americans ages 13 to 19, and women accounted for 37% of those ages 20 to 24, according to the Kaiser Family Foundation. The infection rate among those over 50, the U.S. Department of Heath and Human Services reports, is now comparable to that of those under 50.
Many Americans, their doctors and our government keep downplaying AIDS, largely because they choose to identify it exclusively with domestic “problem populations” (such as gay men and IV-drug users). However, my work on AIDS both in the United States and in 28 other countries around the world, reveals that the conditions fueling AIDS in other countries—disregard of proven prevention strategies, lack of access to prevention tools, lack of access to treatment, HIV infection in the penal system, the sex industry, drug use, poverty and homelessness—are also significantly present in the United States.
Russia’s prison system, for instance, helps spread HIV, tuberculosis, hepatitis and other infections into the country’s wider population. So does ours. The United States has one-quarter of the world’s prisoners, giving us the world’s largest revolving-door prison population, with a known HIV rate six times higher than that of the general population. Prisoners get little education, access to condoms or treatment if infected while they’re incarcerated. Then they are released back into society, becoming likelier to spread the virus further.
The thriving sex trade among the nations of Southeast Asia, which traffics mostly young women, depends directly on the United States. Our own sex industry, worth at least $12 billion a year, is the largest on the planet, the center of an international matrix that recruits U.S. teens and traffics an additional 20,000 women into America from other countries every year. Many of these women are neither educated nor encouraged to practice safer sex, and their partners aren’t either.
Intravenous drug users in Central Asia and South America spread the disease to their non–drug-using partners; a similar scenario occurs here in America. The U.S. has the largest number of heroin, cocaine and methamphetamine users in the world. New York City alone has 22,000 HIV-infected drug users, its department of health reports.
In an effort to deflect attention from the growing American HIV social-services crisis, our government often hypes the plight of poverty-stricken Africans and details their wretched treatment system for HIV (and other sexually transmitted diseases). Yet the poor and disenfranchised in the United States don’t have it much better. We are withdrawing support for treatment, drugs, care, housing and food from HIV-infected Americans, increasing their infectiousness and throwing them out on the streets. Many HIV positive people here support themselves by trading sex or drugs. In the meantime, countries far poorer than ours have demonstrated that free access to treatment controls infection levels and pays for itself by averting hospitalizations for opportunistic infections.
We’re often told of how Christian governments in Africa and Asia craftily ally themselves with religious leaders to preach abstinence and spread misinformation about condoms and AIDS. American schoolchildren, meanwhile, lack frank sex education in their schools, thanks to the Christian Right’s collaboration with our own federal and state governments, which push an abstinence-only agenda—and infection rates in some parts of the country are already showing the impact. Our government’s advocacy of abstinence-only education and blocks on condom distribution have sent infection rates in Uganda back up. The Office of the Global AIDS Coordinator, which oversees the President’s Emergency Plan for AIDS relief (PEPFAR), has dictated that the plan’s funds cannot be used to provide information on condoms to children younger than 14 or to provide condoms in schools.
The good news is that now, thanks to the work of thousands of American activists and their colleagues around the globe, the old paradigm—that health is a privilege—has shifted. World opinion now insists that health, education and a decent life-style are basic human rights that transcend the rights to wealth, property or other values. Age-old rules that have led us into an ever-downward spiral of disease, poverty and loss of dignity for those afflicted with AIDS and other crippling diseases are finally beginning to change. The struggle being waged for the rights of Americans with AIDS is the daily bread of people living with AIDS in more than a hundred other countries.
The “International Declaration of Commitment on HIV/AIDS,” which the United Nations General Assembly issued in 2001, has taken more action in the past five years than we saw in all of the first 20 combined. Most of the jump in funding, which ranged from $300 million in 1996 to $8.6 billion in 2005, occurred after the 2001 United Nations General Assembly Special Session on HIV/AIDS. All of the world’s richest countries came together and pledged to provide enough funding by 2008 to make universal access to AIDS prevention, treatment and care a reality for at least 60% of those living in developing nations. In response, one HIV positive Eastern European official said that a treatment coverage target of 60% was not nearly enough: “In the gap between 60% and 100% coverage is my life and the lives of thousands of people living with HIV.”
Yet it’s a start. Thanks to changes in patent laws and the increased availability of generic drugs, drug prices dropped precipitously in poor countries, from more than $10,000 per person per year in 2000 to an average of $229 per person per year in 2005. Some 20% of those in need had HAART (highly active anti-retroviral therapy) in 2005, up from 3% in 2001.
The irony is that Americans with AIDS may not benefit from these changes nearly as much as people living in developing countries. Drug prices in America are still so high that, especially with Medicaid and federal AIDS Drug Assistance Programs (ADAP) budget cuts, many HIV positive Americans will be forced to choose between paying for their pills and paying for their food and rent.
Lillian Mworeko, the East African Regional Coordinator of the International Community of Women Living With HIV/AIDS, says that the fight for universal access to prevention, care and treatment is enormously difficult for someone from a developing country. “Poverty is the order of the day, and we are at the mercy of the developed countries. In sub-Saharan Africa, the burden of the disease is alarming—especially as a woman who faces all the challenges of the burdens of care and as a person living with HIV who on a daily basis faces the impact of the virus,” she says.
“It is difficult to tell you how painful it is when on a daily basis you see people struggling with their lives because they are still on the waiting list to get treatment. I know the magic that treatment has brought to my life, my family and my community. I have been able to live a full life like any other person and wake up and know the day will move smoothly, unlike before I started treatment, when I was not so sure of what would happen in the course of the day.” Morolake Nwagwu, of Nigeria’s Positive Action for Treatment Access, says, “I am not a victim. But if nothing is done, if I do not have access to lifesaving medicines, then I will become a victim of injustice, a victim of inequality, a victim of neglect. I will become a victim of bad policies, a victim of AIDS.”
Universal access is not just an issue in the developing world; it’s also a matter of great concern in our own backyard. Many people living with AIDS in the United States, the richest country in the world, struggle to get access to health care and treatment. Forty-eight million Americans have no health insurance; people with AIDS are increasingly being forced into special programs that are now being cut or severely constricted. While developing nations push for universal access, America is cutting crucial existing programs (such as the Ryan White Care Act, Medicaid and ADAP) that have successfully provided reliable prevention information and treatment for many people living with AIDS.
While the epidemic rages on, our political leaders rush backward, holding tight to their Bibles and stuffing lobbyists’ money into their pockets. It is a textbook case of spitting in the face of a lethal adversary. Even the money our government has promised as part of PEPFAR’s commitment ($15 billion by 2008) is given with restrictions that allocate a disproportionate amount of it for abstinence-only prevention education, when more of it is needed for health care and treatment.
It is time we looked past, then abandoned the smokescreen of an us/them approach to global AIDS. It is time we halted the threat of AIDS to our American family, so we can then protect the larger family of man. It is time we got our own country on the road to universal access. It is time, too, that as we campaign for awareness and prevention efforts here, we join our fight with that of millions of others whose languages we may not understand but whose needs mirror ours.
The solutions to controlling the AIDS epidemic will arise from love, courage and compassion for one another, no matter where we live or which language we speak. Epidemics are 5% pathogen and 95% social, shaped by moral choices, not medical conditions. Our solutions will be tied directly to how much we—and our governments—value human life over the profitability of health care systems or the particulars of politicized religious beliefs. AIDS has taught us, whether or not we wanted to learn the lesson, that we gain power only by facing reality. We have tasted the apple. Our innocence is gone, and we can’t reclaim it. We can’t turn back now. The decision about the extent to which AIDS will hurt this planet—and us—is dependent on our collective ability to do the math. Multiply the two little boys on that dirt road in Africa by a factor of 7 million. That’s the number of orphans AIDS has already left in its wake in sub-Saharan Africa alone. In the fight against AIDS, we are all sub-Saharans. We are the orphan children; we are the developing world.
Susan Hunter is the author of Black Death: AIDS in Africa and AIDS in America (Palgrave MacMillan).