AIDS Alert International

AIDS stigma forms an insidious barrier to prevention/care

HIV experts describe problem in India

Even though many government programs place a heavy emphasis on preventing HIV/AIDS, they are running into an insidious barrier. In many areas, particularly sub-Saharan Africa and India, the disease comes with a stigma that prevents many from acknowledging the disease, seeking help for it, and even being able to access care. HIV stigma contributes to domestic violence, abandonment, increased risk behaviors, and reluctance to seek health care and HIV counseling and testing, experts say.

In South Africa, a majority of men and women surveyed said they would want to keep their HIV status a secret if they were infected, and 58% of females said that women with HIV are treated worse than men with HIV. Also, more men expressed stigmatizing attitudes than did women, according to a study presented at the recent 14th International AIDS Conference held in Barcelona, Spain.1

Discrimination severe in India

This situation is particularly a problem in India, which is believed to have more HIV-infected people than any other single country. In some places in India, stigma has resulted in physicians denying care to those who are infected and hospitals providing inadequate care and treatment, says Bitra George, MBBS, DVD, a program manager of Family Health International of Chanakyapuri in New Delhi, India. "Denial of these basic services has led to a lot of people living with HIV/AIDS dying at their own homes without any medical care," George says.

Some of the other common effects of HIV stigma include these:

  • HIV-infected people will hide their status while accessing care in medical settings.
  • Health care professionals are reluctant to provide quality care, and they may breach the patient’s confidentiality.
  • HIV-infected people are denied employment if employers find out they are infected, and they may be denied other economic and educational opportunities.
  • Landlords evict tenants based on HIV status.
  • A HIV-positive woman may be thrown out by her family and not allowed to see her children.
  • People whose behavior places them at risk for HIV are reluctant to seek voluntary HIV counseling and testing.
  • Some hospitals will deny admission to a person who is living with HIV/AIDS.
  • Some hospitals and physicians will refuse to deliver babies to HIV-infected women or perform surgery on those who are infected.

"All these discrimination persists because of the prevailing attitude of people about the modes of transmission of HIV," says Sunil Mehra, MD, executive director of MAMTA — Health Institute for Mother and Child in New Delhi. "In almost all cases, people have a tendency to associate every HIV-infected person with the sexual route of transmission," Mehra says. "Since sex and sexuality is a taboo in Indian culture and society, people put a moralistic and judgmental attitude toward the people who are living with HIV/AIDS."

Struggle with societal attitudes

Once it is known that a person is infected with HIV, the person is labeled as someone who indulges in immoral behavior, and this is true of monogamous wives who were infected by their husbands.

"In Indian society, there is an extremely high premium on having children, and there’s also a sense in the society that women are property and they don’t have the same rights as men," says Kenneth H. Mayer, MD, an infectious disease physician with Miriam Hospital in Providence, RI, and a professor of medicine and community health at Brown University in Providence. "This is an explosive situation for an epidemic, which is hitting truck drivers, businessmen, who go into the big cities, and the women in brothels who are trying to exist with survival sex," Mayer says. "The younger daughters of a family that doesn’t have enough food for them will go to the big city and become infected by somebody, and until they get sick, they are having sex with a man, who may not know he is HIV-infected," he adds.

Then the businessman will come home and infect his wife without telling her about his visits to brothels, and because of the stigma, he won’t admit that he is the one who has had risk behaviors. So when the woman becomes sick, particularly if she becomes sick first, she will be blamed for the family’s illness and misfortune, Mayer explains.

Mayer and other researchers found in a study of HIV and sexually transmitted disease (STD) infection rates in slums in Chennai, India, that married women rarely had behavioral risks for infection.2 Nonetheless, the women often are the ones who pay the highest price when the disease appears. "If the woman has a bad dowry and her husband’s mother finds out she has an illness or can’t bear children, there might be a household accident in which the woman is killed," Mayer notes.

Many infected women go untested

Stigma regarding HIV and the Indian culture’s pressure on men to be married and have children also has led to many men who have sex with men (MSM) marrying and not telling their wives about their homosexual activities, he says.

The result has been that infected women often are unaware that they are at risk for the disease, so they are not tested, and this can result in their babies becoming infected, as well. Since 10% of the society is middle class, including professionals and others who have access to health care, there is the potential for HIV treatment programs that could greatly reduce the mother-to-child transmission rates, Mayer says. "But the majority of people don’t know they are infected, and if they do know, they may feel terrified and want to keep it a secret," Mayer adds.

Various health and social organizations have been working to address the HIV stigma and change perceptions so that HIV-infected people will be more willing to be tested and receive treatment. For instance, MAMTA is working with eight nongovernment organizations to implement a community-based care and support program for people affected by HIV/AIDS in the Delhi State, which is the capital city of India. The region has a heterogeneous population that has had a tremendous influx of immigrants from neighboring states, and it’s the region where the per-capita income is the highest in the country.

High vulnerability

However, the region also is characterized by a large pool of migrant laborers, industrial workers, poor slum dwellers, homeless, beggars, and street people. "The vulnerability of this section of the population remains high because of several socioeconomic reasons, yet their visibility remains low due to the stigma attached to the disease," Mehra says.

The government is trying to combat HIV stigma through the National AIDS Control Organisation (NACO), which is disseminating messages of prevention and safe behavior. "NACO is trying through mass awareness campaigns and information, education, and counseling messages to counter stigma and discrimination due to a lack of awareness in the general population," George says. "In addition, NACO is also funding training programs for health care professionals at different levels to remove myths and misconceptions and sensitize the staff to the needs of people living with HIV/AIDS," George adds.

These efforts are a step up from the government’s past actions. "Most of the government programs until now are prevention-based," Mehra says. "However, our experience suggests that prevention-based programs cannot reduce the social stigma and discrimination with the people living with HIV/AIDS."

Also, the government is opening up more voluntary counseling and testing centers, although the reality has been that people will not come forward for testing and counseling until a social support system is well developed and the HIV social stigma has been reduced.

The organizations making efforts toward reducing HIV stigma have programs that train family members, counsel and provide psychosocial support to HIV-positive people, and work to sensitize the community about the disease.

HIV stigma, stereotypes, and discrimination can be solved through government and public sector initiatives once there are proper policies and laws in place, as well as other sweeping measures. For instance, policymakers need to understand the issues and address the challenges through existing government programs, and there must be a political will and commitment to the issue in order to bring about the necessary changes, Mehra says.

References

1. Pulerwitz J, Stewart R, Esu-Williams E. Gender-related aspects of HIV/AIDS stigma and disclosure. Presented at the 14th International AIDS Conference. Barcelona, Spain; July 7-12, 2002. Abstract ThPeE7783.

2. Solomon S, Murugavel KG, Celentano DD, et al. Low HIV/STI infection and risks to Chennai (India) Slums. Presented at the 14th International AIDS Conference. Barcelona, Spain; July 7-12, 2002. Abstract MoPeC3525.