Arthur Amman talks about two distinct but related issues—the stigma that still surrounds HIV and the orphans left behind by the disease

Two articles by Bryony Whipp (p470) and Mirza Muminovic (p471) discuss distinct but related issues in the global epidemic of HIV and AIDS: stigma and orphans. The former is persistent and tenaciously resistant to change. The latter is pervasive and steadily increasing.

Sexually transmitted diseases have existed for centuries, but the stigma associated with HIV infection is much greater. Whipp explores many of the reasons for the persistence of stigma including the medias focus on developing countries while ignoring national issues of HIV and AIDS; the association of HIV infection with homosexuality, intravenous drug use, poverty, immigration, and asylum seekers; and the hidden discrimination that exists within healthcare systems and employment.

Julie sits outside the Tshupe Hospice for terminally ill AIDS patients in South Africa

Over the past 20 years, there has been progress in reducing stigma by means of education and legislation. In addition, advocacy and activism in developed countries have achieved significant gains in directing research priorities, funding for HIV and AIDS programmes, political attention to public health, developing new treatments for HIV and AIDS, and establishing new standards for drug development and healthcare delivery. These advances have benefited thousands of individuals outside of HIV and AIDS. Why then continued stigmatisation?

As Whipp suggests, the media is focused on the negative and dramatic and a constant search for what is new. Nevertheless, the medias attention to the epidemic has resulted in much that is positive, including informing the public and politicians of an emerging new disease and the severity of its consequences. But now, perhaps, it is time for the media to turn away form the numbing numbers that are so difficult for the public to comprehend and return to the fact that with early diagnosis and treatment, people with HIV can lead productive lives. Perhaps stories of individuals that highlight the success derived from treatment of HIV would put a more human face on the epidemic.

It has been the contention of many, myself included, that stigma can only be further reduced when HIV testing and diagnosis are integrated into routine clinical practice—when HIV testing routinely offered to all sexually active people and HIV treatment and care are integrated into general health care.¹ As long as HIV testing is offered to “them” and not to all of “us,” HIV will continue to be viewed as a segregated disease bringing stigma with it. Whipp appropriately cautions that mainstreaming of health care may impair its quality. We will, therefore, need to be diligent in our oversight and develop accurate measures of quality of health care.

Stigma and discrimination are bedfellows. For orphaned children born to mothers infected with HIV these attitudes determine their future. Orphans are at the “end of the line” in the process of stigmatisation and discrimination. The process begins with societies and cultures that allow economic, political, educational, and sexual discrimination against women. Where women have no power or choice, they become infected with HIV and in turn become the mothers of children who will either die of AIDS or become orphaned. Muminovic highlights the exploitation of orphans that takes place and how this is likely to increase. The vast numbers of orphaned children, including those who are not HIV infected, are highly vulnerable and are already targets of the sex industry. Increasingly, orphans are also viewed as commodities of war—young soldiers easily indoctrinated into rebel causes. Orphans who are abandoned become street children and are likely to succumb to a new round of HIV infection.²

Data from sub-Saharan Africa indicate that six times as many young girls as young boys are infected with HIV, reflecting not only the increased susceptibility of young girls to HIV infection but also a deliberate selection of young girls as safer sexual partners.³ The global epidemic has already shifted to equal representation of HIV infected men and women. If the trend toward more HIV infected young girls continues, we will see a dramatic acceleration in the number of HIV infected pregnancies and HIV orphans.

Although many of us focus on the economic, educational, and health issues of HIV orphans, we must not overlook the legal issues. Without parents or guardians, and sometimes even with guardians, orphaned children lose the little they have as relatives take away their inheritance and property. Most orphans lack any legal representation to protect them against discrimination or sexual, employment, or economic abuses.

An 8 year old child orphaned by AIDS at the Sparrows Rainbow village, South Africa

Stigma and discrimination perpetuate stereotyping of the epidemic even among the many large organisations that traditionally support orphans. They may avoid full engagement in supporting programmes that incorporate HIV orphans, fearing perceived overwhelming and chronic problems associated with provision of health care for both HIV infected (who will eventually die) and uninfected orphans. A delay in response can be fatal for thousands of orphaned children.

As international medical students, Whipp and Muminovic raise important issues that embrace justice and equity in health. These are issues that are not often included in the curriculums of medical schools. The public health problems that we currently face, and that are likely to continue far into the future, will require students such as these to engage in health policy and become advocates for new paradigms of health that move beyond our established approaches. Who, more than students, has the potential to demand new standards for worldwide health care?