Meet Our Featured Guest Columnist:
Wendy Wertheimer is a senior advisor in the Office of AIDS Research at the National Institutes of Health. She has been involved in HIV/AIDS issues since the early years of the epidemic and worked alongside Jonathan Mann, head of the global response to AIDS at the World Health Organization.
Q: What does "health and human rights" mean to you?
A: The AIDS pandemic, and the global strategies developed to confront it, have provided a model to demonstrate that the concepts of public health and human rights are inextricably linked. This linkage is bi-directional. First, stigma, prejudice and discrimination in all forms, including, violence, rape, racism, sexism, homophobia, marginalization, and the low status of women, contribute to individual vulnerability to HIV infection and also help fuel the spread of the epidemic in societies and communities where such discrimination exists. Second, coercive, mandatory, or restrictive measures, such as isolation or quarantine, or measures that do not respect patient confidentiality and human dignity are counter-productive in responding to the epidemic, and may keep individuals from seeking necessary prevention and care in such settings. Thus the public health response to the AIDS pandemic must incorporate human rights, as the two are intertwined.
Q: What is your sense of Jonathan Mann's contribution, in terms of HIV/AIDS and human rights?
A: Jonathan Mann was my boss, my mentor, my friend, and my hero, so mine is not an entirely unbiased opinion. I think it is fair to say that he was the founder, developer, and chief advocate of a movement linking health and human rights. His leadership was fundamental in the history of AIDS and how the world has responded to it. After his tragic death, in the crash of Swissair 111, I remember hearing someone say that his impact had been as critical to the fight against the global AIDS epidemic as the drugs that were developed to treat it. His pioneering role in organizing the world's response to the AIDS pandemic demonstrated that the actions of a single person can have a global impact.
From the earliest days, he built the WHO Global Programme on AIDS (GPA) on the conviction that AIDS must be battled not just as a medical issue, but as a social and economic one as well. He foresaw AIDS as a potential disaster that would have devastating societal impact, requiring a different modality, a new paradigm, to confront it. He worked tirelessly urging governments, public health officials, politicians, clinicians, health workers, employers, insurance companies, schools, communities, the media, and even families and friends around the world to not discriminate against HIV-infected people, or even people perceived to have HIV.
The staff he assembled included not just public health experts, but people who would look at broader issues -- a human rights attorney, an expert on prostitution, social and behavioral scientists, experts on drug abuse and women's rights, and he established the model of including HIV-infected individuals and representatives of non-governmental organizations as essential partners in these efforts. I was fortunate to be among those he recruited to join this international, diverse, and extraordinary staff.
Inclusiveness, tolerance of diversity, respect for human dignity, and the concept of "solidarity" were essential elements in GPA's programs. He described the solidarity concept in a keynote speech at an international AIDS conference. He said that true solutions to the AIDS pandemic will only be possible if, in addition to developing drugs, vaccines, and other biomedical interventions, we make fundamental societal changes, including the empowerment of women. He underscored that those changes would only be possible if they are made in solidarity with those who are HIV-infected. And in solidarity "we are all HIV-infected." He also felt deeply that it was the responsibility of those of us from wealthy nations, including the AIDS advocates in the U.S., to understand and address the vast disparity of the impact of the epidemic in developing nations, and to bring the importance of global health to the forefront of U.S. concerns.
Through discussions and meetings with Ministers of Health and Heads of State around the world, he was able to establish the consensus against coercive actions, such as quarantine or isolation programs, mandatory testing, or discrimination against HIV-infected individuals and their families. He saw such actions as dangerous and counter-productive; but he saw silence, denial, fear, ignorance, and inaction as equally insidious. To further translate these concepts and ideals into actions, he conceived the idea of World AIDS Day in 1988 as a day of commemoration. As he believed and often said, "the world must make war against AIDS, and not against people with AIDS."
Q: How/why did you get involved in HIV/AIDS?
A: During the 1970s, I worked on Capitol Hill for Senator Jacob Javits of New York as a Legislative Assistant working on health issues. One of my responsibilities for the Senator was passage of the Venereal Diseases Control Act, of which he was the primary author. I'm sure I was given that assignment because no one else wanted it, but my grandfather had conducted syphilis research many years ago, so I was delighted to take on the task. I was assisted by the American Social Health Association (ASHA), which was then the only national organization solely dedicated to education and research on sexually transmitted diseases. In l979, I left the Senator's office to become the first Director of Public and Government Relations of that organization. At that point, our greatest challenge was educating the federal government and the public about the epidemics of herpes, Chlamydia, and human papilloma virus. But just over a year later, the first cases of what we now know as AIDS were reported. ASHA added AIDS to its mission, and over the next ten years, we developed legislation and advocacy programs for AIDS prevention and research, worked to develop new coalitions of organizations against AIDS, and established the National AIDS Hotline. Through this work, I met Jonathan Mann, and in 1989 I went to Geneva, Switzerland to work as a special assistant to him at WHO. It was a wonderful opportunity to work on issues on a global scale. When he left WHO because of internal politics, his successor reorganized the program and its priorities. I returned to the U.S. to join the National Institutes of Health, where I have remained ever since in the Office of AIDS Research. I am involved in AIDS because I believe it is the most profound public health crisis of our time, and how the world approaches it will have resounding impact not only for AIDS, but for future epidemics and public health emergencies around the world.
Q: Describe some of the successes you have seen in your work.
A: There have been so many dramatic successes and changes since the early, very scary days of the AIDS epidemic. Some of the earliest cases of HIV transmission were among hemophiliacs and recipients of contaminated blood transfusions; but the blood supply and blood products in the U.S. are now safe. The U.S. has come far since the days when the late Ricky Ray and his brothers were barred from attending school, and some healthcare providers refused to care for HIV-infected patients. The enactment of the Americans with Disabilities Act provided HIV-infected individuals protection from discrimination in employment, housing, public accommodations, and government services in the U.S. Drugs and drug regimens have extended the quantity and quality of life for HIV-infected individuals who have access to and can afford them. Today there are 30 drugs approved by the FDA to treat HIV infection, and more than 90 new medicines being testing to treat HIV disease and its complications. AIDS activists have made an incredible contribution around the world, and serve as a model for activism for other important health issues.
A major change is that Congress, the White House, and the U.S. advocacy community have embraced the critical challenges of AIDS and public health worldwide. The U.S. government has made enormous contributions to global health issues, including HIV, TB, and malaria. As part of that effort, the NIH international AIDS research portfolio has increased dramatically. Beginning in 1984 with a research project in Haiti and the establishment of Projet SIDA in 1985 in what was then Zaire, NIH has expanded its AIDS research effort to encompass studies in collaboration with investigators in more than 90 countries around the world.
Q: What are some of the challenges?
A: In spite of the many dramatic successes, the challenges - in science, public health, policy and in human rights - related to the AIDS epidemic and global health are enormous. Although countries around the world have implemented AIDS programs, the epidemic continues to expand, in the U.S. and worldwide. While new drugs and drug regimens are keeping people alive longer, there is increased incidence of HIV-associated co-morbidities, co-mortalities, and co-infections, including resistance to currently available drugs, cardiovascular complications, malignancies, neurological complications, tuberculosis, and other clinical manifestations, associated with long-term HIV disease and prolonged antiretroviral therapy. Despite the best efforts of incredibly dedicated scientists, we still do not have an effective vaccine or microbicide to prevent infection. AIDS "denialism" and conspiracy theories about the origins of the epidemic continue to make public health efforts more difficult. Social, cultural, religious, and political issues all must be considered when dealing with the AIDS epidemic here and abroad.
Q: How can young people make a difference?
A: There are so many ways that young people can make a contribution to AIDS, global health, and human rights. The first thing I would say is to learn about HIV/AIDS and how to prevent it, and to stay healthy. Choose a career in public service. While it will not be a path to financial riches, it will provide a wealth of professional and personal opportunities to make a difference in people's lives. Find a mentor. I have been so lucky to work for and with remarkable public servants and leaders. Volunteer. There are incredible non-governmental organizations around the world doing important work that are in need of people who can give their time and talents. Whether you study law, or science, or nursing, or nutrition, or public health, or political science, or any number of other fields, your expertise can be applied to global health issues. Participate in awareness events. I have had responsibility for World AIDS Day activities every year since the first one in l988, and my dearest wish is to live to see the day when we mark the very last World AIDS Day ever.