Sophia is a 24-year-old mother living in Texas. Like many low-income women in Texas, Sophia receives general medical care at a family planning site, where she was diagnosed with HIVi. Placed on antiretroviral therapy (ART) Sophia, like one in five Texans, is uninsuredii making her treatment virtually unaffordable. Texas is one of nearly 20 states that have not expanded their Medicaid programs under the Affordable Care Actiii, leaving millions without affordable health insurance. Texas also has one of the highest rates of HIV infections but lowest spending on social services and public health nationwideiv.
Although her child was born HIV-negative, Sophia’s intense shame and isolation have left her deeply depressedv. In the U.S., people living with HIV are over three times more likely to become depressedvi. This, combined with financial constraints and struggles to access care, has left Sophia unable to adhere to her ART regimen, and her virus has progressed to AIDS.
Let’s now imagine that Sophia instead lives in rural India. Sophia’s husband, like many unemployed rural Indian men, migrated to Mumbai, where 37% of female sex workers have HIVvii.
Sophia, like 88% of Indian women, was never tested for HIV prior to or during pregnancy, even though prenatal HIV testing is technically mandatoryviii. Sophia’s child was one of 15-45% of infants who are infected during childbirth or during breastfeedingix. Sophia, unaware of her HIV-positive status, as are 13% of the people living with HIV in Indiax, has progressed to AIDS.
One More View
Now, let’s travel to South Africa where Sophia is eight times more likely to be HIV-positive than a young man of the same agexi. In sexual decision-making, Sophia plays little to no role: the idea of demanding that her much-older husbandxii stop extra-marital affairs, or even suggesting condom usexiii, is preposterous.
Because South Africa requires pregnant women to be tested for HIVxiv, Sophia was diagnosed during her pregnancy and immediately placed on ART – which she cannot afford. Her baby was born HIV-negative and prescribed medicine to protect against HIV transmission in breast milkxv. Fearing stigmatization by neighbors and family members, Sophia refuses to attend a local HIV clinic but is unable to travel to a distant HIV clinicxvi. Unable to adhere to her own treatment regimen, Sophia has progressed to AIDS.
Three very different fictionalized representations of Sophia in three different countries, yet all with the same ending: Sophia has AIDS.
Why? Why— even though effective treatment is available to persons living with HIV—is HIV is the leading global cause of death for women aged 15-44xvii? Nearly 18 million women in the world are living with HIV, yet less than a third between the ages of 15 and 24 receive comprehensive information regarding HIVxviii.
What’s missing? Several factors contribute to the fact that women are still dying of AIDS; many of these deaths are possibly preventable through education, affordable treatment, and access to care.
Sexual – not abstinence-only - education needs to start early on; schools need better incorporation of AIDS and STD prevention, so that every young person is equipped with the knowledge and tools to prevent HIV transmissionxixxxxxi.
Over 50% of men and women in the world report having discriminatory attitudes toward people living with HIVxxii. Globally, one in eight people living with HIV are denied health services because of such discriminationxxiii. Communities, states, and countries should fund, launch, and encourage programs to reduce stigma, such as the Greater Than Aids campaign xxiv.
Of over 35 million people living with HIV worldwide, barely more than half have actually been diagnosed, and only 41% are receiving treatment. Perhaps most disturbing, fewer than a third of people living with HIV in the world have achieved viral suppressionxxv, meaning that their infection is controlled by medication. Diagnosis must be followed with linkage to health care, and with opportunities to sustain that care and receive ongoing antiretroviral therapy. Affordable insurance for allxxvi, along with greater spending on the social services required to facilitate regular access to care, such as transportation and housingxxvii can help prevent HIV infection and progression to AIDS.
Like the Sophia in India, nearly one third of pregnant women living with HIV do not receive treatment to prevent mother to child transmissionxxviii. Widespread, consistent access to rapid HIV testing and counseling for women in laborxxix must remain both a global funding priority and a national policy enforced in every country, in order to increase the number of countries eliminating mother-to-child HIV transmissionxxx.
Of 195 countries in the world, only four have achieved zero mother-to-child transmissions of HIVxxxi. National HIV Testing Day has just passed: let us acknowledge that getting to zero new infections, zero discrimination, and zero AIDS deathsxxxii requires special, concerted attention to the structuralxxxiii, social, and political factorsxxxiv facing every “Sophia:” every young woman, mother, and wife living with HIV.
i Frost JJ et al. “Specialized Family Planning Clinics in the United States: Why Women Choose Them and Their Role in Meeting Women’s Health Care Needs.” Women’s Health Issues, Vol. 22, No. 6; November 2012.
ii Sommers, B. D. (2016, April 7). Medicaid Expansion in Texas: What's at Stake? Retrieved November 29, 2016, from http://www.commonwealthfund.org/publications/issue-briefs/2016/apr/medicaid-expansion-texas
iii Sommers, B. D. (2016, April 7). Medicaid Expansion in Texas: What's at Stake? Retrieved November 29, 2016, from http://www.commonwealthfund.org/publications/issue-briefs/2016/apr/medicaid-expansion-texas
iv Talbert-slagle, K. M., Canavan, M. E., Rogan, E. M., Curry, L. A., & Bradley, E. H. (2016). State variation in HIV / AIDS health outcomes : the effect of spending on social services and public health, (November 2015), 657–663. http://doi.org/10.1097/QAD.0000000000000978
v Bhatia, M. S., & Munjal, S. (2014). Prevalence of Depression in People Living with HIV/AIDS Undergoing ART and Factors Associated with it. Journal of Clinical and Diagnostic Research : JCDR, 8(10), WC01–WC04. http://doi.org/10.7860/JCDR/2014/7725.4927
vi Do, A. N., Rosenberg, E. S., Sullivan, P. S., Beer, L., Strine, T. W., Schulden, J. D., … Skarbinski, J. (2014). Excess burden of depression among HIV-infected persons receiving medical care in the United States: Data from the medical monitoring project and the behavioral risk factor surveillance system. PLoS ONE, 9(3). http://doi.org/10.1371/journal.pone.0092842
vii Saggurti, Niranjan, Bidhubhusan Mahapatra, Shrutika Sabarwal, Subash Ghosh, and Aradhana Johri. 2012. “Male Out-Migration: A Factor for the Spread of HIV Infection among Married Men and Women in Rural India.” PLoS ONE 7(9).
viii Pai, Nitika Pant et al. 2008. “Impact of Round-the-Clock, Rapid Oral Fluid HIV Testing of Women in Labor in Rural India.” PLoS Medicine 5(5):0768–75.
ix Mother-to-child transmission of HIV. (n.d.). Retrieved November 29, 2016, from http://www.who.int/hiv/topics/mtct/en/
x HIV and AIDS in India. (n.d.). Retrieved November 18, 2016, from http://www.avert.org/professionals/hiv-around-world/asia-pacific/india
xi New Evidence on Why Young Women in South Africa are at High Risk of HIV Infection. (2016, July 18). Retrieved November 18, 2016, from https://www.mailman.columbia.edu/public-health-now/news/new-evidence-why-young-women-south-africa-are-high-risk-hiv-infection
xii New Evidence on Why Young Women in South Africa are at High Risk of HIV Infection. (2016, July 18). Retrieved November 18, 2016, from https://www.mailman.columbia.edu/public-health-now/news/new-evidence-why-young-women-south-africa-are-high-risk-hiv-infection
xiii Ramjee, Gita and Brodie Daniels. 2013. “Women and HIV in Sub-Saharan Africa.” AIDS Research and Therapy 10(1):30. Retrieved (http://www.aidsrestherapy.com/content/10/1/30).
xiv Horwood, C., Haskins, L., Vermaak, K., Phakathi, S., Subbaye, R., & Doherty, T. (2010). Prevention of mother to child transmission of HIV (PMTCT) programme in KwaZulu-Natal, South Africa: an evaluation of PMTCT implementation and integration into routine maternal, child and women’s health services. Tropical Medicine & International Health, 15(9), 992-999. doi:10.1111/j.1365-3156.2010.02576.x
xv Horwood, C., Haskins, L., Vermaak, K., Phakathi, S., Subbaye, R., & Doherty, T. (2010). Prevention of mother to child transmission of HIV (PMTCT) programme in KwaZulu-Natal, South Africa: an evaluation of PMTCT implementation and integration into routine maternal, child and women’s health services. Tropical Medicine & International Health, 15(9), 992-999. doi:10.1111/j.1365-3156.2010.02576.x
xvi KAGEE, A., REMIEN, R. H., BERKMAN, A., HOFFMAN, S., CAMPOS, L., & SWARTZ, L. (2011). Structural barriers to ART adherence in Southern Africa: challenges and potential ways forward. Global Public Health, 6(1), 83–97. http://doi.org/10.1080/17441691003796387
xvii "Women's health. (n.d.). Retrieved November 18, 2016, from http://www.who.int/mediacentre/factsheets/fs334/en/
xviii Facts and Figures: HIV and AIDS. (n.d.). Retrieved November 29, 2016, from http://www.unwomen.org/en/what-we-do/hiv-and-aids/facts-and-figures
xix Schools Play a Key Role in HIV/STD and Teen Pregnancy Prevention. (2015). Retrieved November 29, 2016, from http://www.cdc.gov/features/hivstdprevention/
xx Sengupta, S., Banks, B., Jonas, D., Miles, M. S., & Smith, G. C. (2011). HIV Interventions to Reduce HIV/AIDS Stigma: A Systematic Review. AIDS and Behavior, 15(6), 1075–1087. http://doi.org/10.1007/s10461-010-9847-0
xxi Comprehensive Sex Education: Research and Results. (2009). Retrieved November 29, 2016, from http://www.advocatesforyouth.org/publications/1487
xxii Stigma, discrimination and HIV. (n.d.). Retrieved November 29, 2016, from http://www.avert.org/professionals/hiv-social-issues/stigma-discrimination
xxiii Stigma, discrimination and HIV. (n.d.). Retrieved November 29, 2016, from http://www.avert.org/professionals/hiv-social-issues/stigma-discrimination
xxiv (n.d.). Greater Than AIDS. Retrieved November 29, 2016, from http://www.greaterthan.org/
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xxvi Kahn, J. G., Haile, B., Kates, J., & Chang, S. (2001). Health and Federal Budgetary Effects of Increasing Access to Antiretroviral Medications for HIV by Expanding Medicaid. American Journal of Public Health, 91(9), 1464–1473.
xxvii Talbert-slagle, K. M., Canavan, M. E., Rogan, E. M., Curry, L. A., & Bradley, E. H. (2016). State variation in HIV / AIDS health outcomes : the effect of spending on social services and public health, (November 2015), 657–663. http://doi.org/10.1097/QAD.0000000000000978
xxviii Women and HIV/AIDS. (n.d.). Retrieved November 29, 2016, from http://www.avert.org/professionals/hiv-social-issues/key-affected-populations/women
xxix Pai, Nitika Pant et al. 2008. “Impact of Round-the-Clock, Rapid Oral Fluid HIV Testing of Women in Labor in Rural India.” PLoS Medicine 5(5):0768–75.
xxx WHO validates countries' elimination of mother-to-child transmission of HIV and syphilis. (n.d.). Retrieved November 29, 2016, from http://www.who.int/mediacentre/news/statements/2016/mother-child-hiv-syphilis/en/
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xxxiv Key barriers to women’s access to HIV treatment: Making ‘Fast-Track’ a reality. (2016). Retrieved November
About the authors,
Kanan Shah is an undergraduate at Yale University studying Molecular and Cellular Biology and Public Health. Since her time at Yale, Kanan has been focusing on improving the health of women and children. She hopes to one day obtain M.D. and MPH degrees to create interventions targeting the socially and politically disadvantaged. In her free time Kanan enjoys traveling, meeting new people, dancing, running, organizing events with the undergraduate South Asian Society, and volunteering.
Dr. Talbert-Slagle is the Senior Scientific Officer of the Global Health Leadership Institute, assistant professor of medicine at the Yale School of Medicine and a Lecturer in the Yale School of Public Health. As an experienced virologist with postdoctoral training in genetics, immunology, mathematical modeling, health policy, and global health, her research focuses on exploring parallels between molecular, individual, community and population systems. Her recent work has included analyzing the molecular mechanisms of spread and diffusion of viruses among individual cells as a model of innovation spread among human organizations. By utilizing biological models, Dr. Talbert-Slagle and colleagues generate new insights into concepts such as managing diversity, conflict management, and implementation/scale up of innovation that can be applied to complex social systems. Dr. Talbert-Slagle teaches courses at Yale University on the biology and social context of HIV/AIDS and methods of global health research and is an Affiliate of the Center for Interdisciplinary Research on AIDS. Dr. Talbert-Slagle received her B.S. and B.A. degrees from the University of Kentucky and her Ph.D. from Yale University in the Epidemiology of Microbial Disease.