HIV Stigma in Health Care Settings: A Need for Greater Partnership of Doctors and Lawyers in Ending AIDS

By Theresa Cheng

The global health community has been debating when we will reach the end of the HIV/AIDS epidemic. ¹ As of 2012, 96% of governments had stepped up to the challenges of managing the epidemic within their own borders by redoubling country investments and integrating HIV planning with national health agendas.² However, it is increasingly apparent that ending AIDS cannot be achieved without national plans that address gender inequalities and the disproportionate discrimination against HIV-positive women, including within health care settings. As an M.D./J.D. student studying the care of HIV-positive women and the diverse legal systems supporting their human rights, I see the global HIV response as lacking vital partnerships between medical and legal communities.

Globally, even though women living with HIV (WLHIV) are more likely to be in care, compared with other at-risk populations, the health care they receive is frequently neither comprehensive nor stigma-free.³ Emerging evidence reveals that WLHIV are still likely to experience discrimination in the form of pressure from their health providers to have abortions and be sterilized. For example, in 2011, a study in six countries in Southeast Asia found that 30% of 757 HIV-positive women were asked to undergo sterilization, and the majority (60%) had been asked to do so by an obstetrician-gynecologist and/or an HIV clinician.⁴ In Pakistan, 37% of 228 WLHIV said that health care professionals had coerced them into terminating a pregnancy.⁵ Without free and informed consent, these abortions and/or sterilizations are human rights violations. They also create barriers to access to critical preventative and reproductive health services. Discrimination in health care settings limits the implementation and effectiveness of national HIV plans and global efforts to eliminate mother-to-child transmissions, ultimately constraining progress towards an end to AIDS. ⁶

Foremost among the global response to reports of HIV stigma has been a UN interagency statement condemning forced, coerced, and otherwise involuntary sterilizations of all women.⁷ While significant, this declaration and other initiatives reveal a disconnect between the experts in health and HIV care (doctors) and the experts in international human rights law (lawyers). Despite the growing recognition that human rights and gender equality must be central components of any HIV campaigns, these principles remain absent in many medical training programs and health care delivery scenarios, seemingly considered impractical or unnecessary. Policymakers—often lawyers—see laws are necessary to objectively delineate what is just and to ensure this justice is upheld. For medical providers, such laws can also represent unwelcome or unreasonable government intrusions into the patient-physician relationship.⁸

Yet what is often overlooked is that the incorporation of universal, legally recognized human rights into medical practice would simultaneously protect the rights of patients and health professionals.⁹ Human rights-based principles of patient care, such as informed consent and the provision of safe working conditions, are not abstractions of justice, but are explicitly grounded in international law. By strengthening partnerships between medical and legal communities, we have an under-explored opportunity to align the human rights needs of both providers and patients, and make human rights explicit in every aspect of HIV treatment and care. Doctors and lawyers working together could expand areas of collaboration in supporting HIV-positive patient rights.

In Southeast Asia, a regional committee established by amfAR (The Foundation for AIDS Research), APN+ (The Asia Pacific Network of People Living with AIDS), UNAIDS, and UNDP to examine discrimination of WLHIV in health care settings actively seeks to incorporate health and legal provider input to ensure the practicality of interventions. Greater dialogue between legal and medical practitioners in local and national policy arenas helps ensure that HIV programming initiatives are grounded in scientific evidence, international human rights laws, and patient realities. Just as we acknowledge the fundamental importance of participation of people and communities most affected by AIDS in governance, so should we create similar opportunities for health workers to participate in dialogues and decisions that affect their work with HIV patients.

Ultimately, eliminating stigmatization of HIV in health care settings depends on the incorporation of cross-disciplinary perspectives into medical and legal educations. This would foster a shared understanding of the broader policies needed to see the end of AIDS and create a platform for future partnerships.¹⁰ Medical and legal approaches to HIV stigma eradication need not be considered incompatible; rather, we should reframe traditional perspectives of the distinct roles of doctors and lawyers and broaden the application of human rights to the practice of medicine.

Theresa Cheng received her J.D. in 2014 from University of California, Berkeley School of Law and is a current third year medical student at the Mayo Clinic in Rochester, MN, USA.

References

1. A. Fauci and H. Marston, “Focusing to achieve a world Without AIDS,” JAMA 313 (2015), pp. 357-358.

2. UNAIDS, UNAIDS global report on the global AIDS epidemic (Geneva: Joint United Nations Programme on HIV/AIDS, 2012).

3. UNAIDS, UNAIDS global report (Geneva: Joint United Nations Programme on HIV/AIDS, 2013). Available at http://www.unaids.org/en/media/unaids/contentassets/documents/
epidemiology/2013/gr2013/UNAIDS_Global_Report_2013_en.pdf.

4. Women of the Asia Pacific Network of People Living with HIV, Positive, and Pregnant, How Dare You, A study on access to reproductive and maternal health care for women living with HIV in Asia, 2012., APN+, Bangkok

5. UNAIDS, People living with HIV stigma index (Geneva: Joint United Nations Programme on HIV/AIDS, 2011).

6. M. Eide  et al., “Social consequences of HIV-positive women’s participation in prevention of mother-to-child transmission programmes,” Patient Education and Counseling 60 (2006),  pp. 146-151.

7. OHCHR, UN Women, UNAIDS, UNDP, UNFPA, UNICEF, WHO, Eliminating forced, coercive and otherwise involuntary sterilization (Geneva: WHO Press, 2014). Available at http://www.who.int/reproductivehealth/publications/gender_rights/eliminating-forced-sterilization/en/.

8. S. Weinberger  et al., “Legislative interference with the patient-physician relationship,” New England Journal of Medicine 267 (2012), pp. 1557-1559. Available at http://www.nejm.org/doi/full/10.1056/NEJMsb1209858.

9. J. Cohen and T. Ezer, “Human rights in patient care: A theoretical and practical framework,” Health and Human Rights 15/2 (2013).  Available at http://www.hhrjournal.org/2013/12/10/human-rights-in-patient-care-a-theoretical-and-practical-framework.

10. T. Ezer and J. Overall, “Advancing human rights in patient care through higher education in Eastern Europe and Central Asia,” Health and Human Rights 15/2 (2013), pp.  54-68. Available at http://www.hsph.harvard.edu/hhrjournal/files/2013/12/Advancing-human-rights-in-patient-care-through-higher-education-in-Eastern-Europe-and-Central-Asia-.pdf.