Deep prejudice against people with HIV/AIDS in India leads to patterns of discrimination and maltreatment even in the hospitals they depend on for treatment and care. Dr. Glory Alexander resolves to end medical discrimination against HIV/AIDS patients by educating hospital staff and the patients themselves, using her successes as a lever to push for tolerance in all spheres of Indian life.
The New Idea
Hospitals in India encourage discrimination against persons with HIV/AIDS when they fail to see the disease as a normal ailment, manageable through a modest set of precautions and treatments. Glory fights such discrimination by professionalizing the treatment of the disease, altering hospital procedures and attitudes among staff with an eye toward fully integrating work on HIV/AIDS into routine medical care.
Glory works with prenatal programs in individual hospitals as a starting point for system-wide change. Because pregnant women often seek out disease education during their term, and because doctors tend to view them with great sympathy, they are an ideal population for her integration programs. Once the programs prove their merit among this group, Glory works with staff throughout the hospital to improve policies, procedures, and staff attitudes toward HIV/AIDS. She spreads these advances far and wide using existing networks of hospitals in south India.
Glory’s eventual goal is for people with HIV/AIDS to be treated with the same dignity as people without the disease. Integration of HIV/AIDS treatments in medicine is only a first step toward her larger goals of tolerance and inclusion. She draws inspiration for her work from battles recently won against the stigma and fear attached to tuberculosis. At one stage tuberculosis programs were segregated as well, but now they are a part of the hospital routine, leaving persons with the illness better understood and less victimized. Glory strives to win similar victories in the management of HIV/AIDS. In a country where doctors are treated with almost godlike respect, she believes genuine changes in doctors’ attitudes and behavior will translate into greater progress among the people as a whole.
In India, the mention of HIV/AIDS may excite fear, provoke hostility, or trigger embarrassed silence. One of the earliest HIV/AIDS cases served by Gloria’s program involved a husband and wife whose families threw them out of their home when they learned of their infection. Such reactions were common among patients and their families, but Glory grew particularly concerned when she began to recognize similar reactions among hospital staff. She gave a talk about HIV/AIDS to an auditorium of pre-university students, expecting tons of questions from the usually inquisitive group, but she was met with silence: they asked not a single question. Shocked by the silence, she suggested that her audience write questions anonymously on paper. In the absence of stigma, the students quickly produced 30 questions. In a similar exercise the following week the number grew to 90. After this experience, Glory began to understand that ending discrimination against HIV/AIDS patients in society depended largely on confronting discrimination in hospitals.
When a person with HIV/AIDS approaches a hospital, several things may happen to deny them proper care. They may be refused entry, segregated, labeled, forced to pay more, or verbally abused. Glory powerfully recalls the story of a young woman who went to a hospital for prenatal exams. Staff at the hospital tested this young woman for HIV without informing her. When her test results came back positive, they noted the data on her record, but still told her nothing. When she came to the hospital in active labor she was refused entry; frantically turning to a second hospital, she was refused again. At a third, her brother put the record away, and she was finally admitted.
This story is one among thousands that collectively demonstrate the inability of the Indian health care system to deal effectively with HIV as a public health issue. Because most hospitals lack the education programs and hospital management procedures to protect their staff from infection, staff operate in a state of fear, finding ways to exclude patients that they perceive as threats to their health and the health of their other patients. Although it remains illegal, testing without patient’s prior approval is widespread. Once patients are identified as HIV positive, many written or tacit policies deny them proper treatment, using various pretexts to keep even emergency cases from needed care.
Doctors, the media, and citizen sector organizations have all contributed to the enduring prejudice against people with HIV. When doctors adopt a false moral righteousness, presuming that HIV patients deserve to be infected because of perceived immoral behavior, people outside the medical establishment feel comfortable doing likewise. Television news reports on HIV stir up public fear, giving sensational accounts of murders and suicides that supposedly have followed knowledge of infection. Even citizen sector organizations with good motives often stoke the fires of discrimination, separating their HIV positive clients from mainstream society and inadvertently feeding public perceptions that the disease is an aberration to be shunned rather than an illness to be treated. There is a clear need for new programs that bring persons with HIV/AIDS safely into society, rather than pushing them away.
To fill this need, Glory established the Action, Service and Hope for AIDS (ASHA) Foundation in 1998. ASHA quickly launched an AIDS Helpline in Bangalore, the third of its kind in India, earning headlines in the local media and serving some 270,000 callers since its inception. The success of the Helpline built momentum for AIDS education throughout Karnataka, inspiring similar programs across the state. The foundation built on these victories in 1999 by founding a teen sexual health program, among the first to integrate sexual health into a full-year curriculum. The program has already involved over 700 teachers, 60 schools, and aims to serve 120 schools, 1,000 teachers, and 30,000 students by 2006. Under Glory’s leadership, ASHA also spreads HIV/AIDS prevention information through outreach programs for sex workers and health awareness initiatives in poor neighborhoods.
After four years of direct service, she founded the Prevention of Mother to Child Transmission program to begin the full integration of HIV/AIDS treatment into the hospital system. In the program, trained hospital staff meet with pregnant women during their routine prenatal exams. Ideally they are female nurses in their late 20s and early 30s who can deal with the pregnant women like peers, talking casually but expertly about sex. Later, one of the counselors individually meets and encourages each woman to test herself for HIV. Husbands are also counseled and tested voluntarily. Persons found to be HIV positive are given extensive counseling and treatment, with the option of training to becoming counselors in the program.
Glory carefully approaches senior staff to ensure sustainable support for the Prevention of Mother to Child Transmission program in each hospital. She begins with the hospital directors, showing hard data on her program’s success and offering financial incentives like the payment of the salaries of the first group of counselors, or a supply of drugs and equipment needed for the work. As the program is thoroughly integrated into the hospital, the institution will build these costs into its budget, but at the early stages these incentives are powerful tools to gain administrative support.
Once management agree, Glory turns her attention to the staff. She holds one-day sessions to educate and connect doctors from different parts of the hospital, with doctors from other hospitals. Discussions early in the program center on the technical and scientific aspects of work on HIV/AIDS, topics that give them a sense of comfort and control. Once this sense is established, Glory shifts the conversation toward counseling and management procedures for people with HIV/AIDS. She secures a place for the Prevention of Mother to Child Transmission program by drawing out doctors’ bias’ about HIV positive persons and calmly refuting them with moving stories and hard evidence. She points out that most pregnant women get the disease from their husbands, and emphasizes how unborn children are completely innocent regarding the factors which caused the infection. She follows up with additional sessions in individual hospitals, where counselors and doctors become responsible for the training of other staff.
The influence of the program spreads quickly beyond the prenatal ward. Usually about three months after a pair of counselors begins their work at a particular hospital, they begin to get requests for their advice in treating patients with HIV. The counselors are trained to anticipate this stage and respond quickly, for this is the moment when their work can rapidly increase its impact. Initially, they may get requests to test patients in other wards for HIV, or they may be asked to give private counseling or tell a patient that he is HIV positive. Trained to seek opportunities to promote program success over personal glory, the counselors treat such requests with caution and care. Rather than notifying the patients themselves, counselors generally prepare doctors to lead the conversation. Each conversation fosters a new source of accurate information and tolerant attitudes among the hospital staff.
As respect for the program grows in each hospital, it presents opportunities for substantive reforms of hospital procedures. Hepatitis A and B are both transmitted in the same way as HIV/AIDS, but persons with these illnesses are not routinely refused treatment. The reason is that where these diseases are concerned, clear and effective institutional policies exist to help staff prevent infection and manage waste. Glory works to extend the same policies to the treatment of HIV/AIDS. Usually this involves very simple low-cost measures, such as recycling tin cans for disposal of needle sharps. Some crucial reforms cost nothing at all. For instance, most hospitals currently mark the files of their HIV patients with big red stamps proclaiming them as HIV positive. Removing these markers of patient difference can have a huge effect in reducing discrimination: Glory helps hospitals gather the will to make this decision.
Glory plans to spread her program through existing networks of hospitals and beyond. To date, the program serves three mission hospitals with full-time counselors, all in her home state of Karnataka. The program is quickly breaking through early reticence: three more hospitals have already joined, with several others showing interest. Glory is negotiating with the Christian Medical Association of India to bring the program to its entire network of some 350 mid-level mission hospitals across southern India.
Glory finds every means possible to get her message across, using radio and newspapers.
She was a member of the expert committee for determining the curriculum for a distance education program of the India Gandhi National Open University and is currently mentoring three young doctors studying HIV/AIDS health care under a one-year fellowship with the Christian Medical College and Hospital. She is constantly evaluating the progress of her work, looking for ways to carry it forward and adapt it to the changing conditions of the Indian health care system.
Although the stigma attached to HIV/AIDS is still great enough to require compromise, occasionally limiting Glory’s programs to working in segregated HIV hospices, she maintains a firm grasp on her goal of full integration of HIV patients. She directs her attention to the future, building strength and momentum for a time when the key issue may no longer be how to end discrimination, but how to strengthen the role of HIV positive people in public life.
When Glory Alexander completed her MD in 1986, she had not learned about AIDS or seen a single AIDS patient. So it came as a shock when in 1987 a patient asked her, “Do you think I have AIDS?” Glory realized she had no training or preparation to answer his question. She went straight to the library, read about the disease in an encyclopedia, and came back to administer a test. Sadly, before she could get the test result, the man died. Later Glory met his friends and was told that he knew he was HIV positive, but feared being discriminated against and had kept it a secret.
In 1994, Glory took over as acting head of the department of medicine at Bangalore Baptist Hospital, where her aptitude for leadership and administration quickly became apparent. She brought in new staff and changed routines, reducing waiting time and introducing study sessions to help staff keep up with the latest medical developments. As Glory began to serve more patients with HIV/AIDS and saw the discrimination they faced in and out of hospitals, she began to make plans to directly address their problems. She was a good doctor in a prominent job, but felt she could do more. In 1998 Glory made a personal decision to leave her comfortable job to establish ASHA. It meant dramatic changes in lifestyle and pay, but has brought great personal rewards.
For Glory, her family is the bedrock upon which her work stands. She recalls the strong influence that her father had on her: a caring and compassionate man, he was always keen to listen and talk with her. Her husband, also a doctor, has taken on a crucial and supportive role in her professional life, and she learns more from her two teenage children every day.