Time to realise our sexual and reproductive health and rights
Authors: Florence Anam, Cecilia Chung, Sophie Dilmitis, Calorine Kenkem, Rebecca Matheson-Omondi, Svitlana Moroz, Lillian Mworeko, Hajjarah Nagadya, Angelina Namiba, Violeta Ross, Sophie Strachan, Martha Tholanah, L'Orangelis Thomas, Patricia Ukoli, Marijo Vazquez, Aleksandra Volgina, Rita Wahab, Alice Welbourn, Anandi Yuvraj
Journal: The Lancet Global Health (2018)

As women living with HIV who were involved in a global values and preferences survey on the sexual and reproductive health and rights (SRHR) priorities of women living with HIV, we welcome the Comment by Manjulaa Narasimhan and colleagues.1Narasimhan M Pillay Y Garcia PJ et al.Investing in sexual and reproductive health and rights to reach HIV and universal health coverage goals.Lancet Glob Health. 2018; (published online July 18.)http://dx.doi.org/10.1016/S2214-109X(18)30316-4Summary Full Text Full Text PDF PubMed Scopus (11) Google Scholar Our survey, Building a Safe House on Firm Ground (2015),2Orza L Welbourn A Bewley S Crone E Vazquez M Building a safe house on firm ground: key findings from a global values and preferences survey regarding the sexual and reproductive health and human rights of women living with HIV.http://salamandertrust.net/resources/building-safe-house-firm-ground-report-global-survey-sexual-reproductive-health-human-rights-women-living-hivDate accessed: July 11, 2018Google Scholar commissioned by WHO, was led and designed by a diverse group of women living with HIV to inform the WHO 2017 Consolidated Guideline on the SRHR of women living with HIV.3WHOConsolidated guideline on sexual and reproductive health and rights of women living with HIV.http://apps.who.int/iris/bitstream/handle/10665/254885/9789241549998-eng.pdf;jsessionid=540FF77CD81E2A37BEE1A58D80A15854?sequence=1Date accessed: July 2, 2018Google Scholar Our survey aligns with the key points highlighted in the Comment. The survey and the guideline, which included outcomes from the survey throughout, heralded an important shift in normative guidance development. A statement from networks of women living with HIV praises the guideline's “ground-breaking women-centred spirit and principles”.4Salamander TrustAnnouncement 27 March 2018: generic checklist for implementation of WHO SRHR guideline.http://salamandertrust.net/wp-content/uploads/2018/04/FINAL_Statement_on_Checklist_Release_March_2018.pdfDate accessed: July 2, 2018Google Scholar We have now developed a checklist5Salamander TrustTranslating community research into global policy reform for national action: a checklist for community engagement to implement the WHO consolidated guideline on the sexual and reproductive health and rights of women living with HIV.http://salamandertrust.net/wp-content/uploads/2017/02/2018July_WHO_SRHR_Guideline_Checklist_FINAL.pdfDate accessed: July 11, 2018Google Scholar to support women living with HIV to implement the guideline in their countries. UNAIDS, UNFPA, UN Women, and OHCHR have endorsed it, with Tedros Adhanom Ghebreyesus of WHO lauding the process as a best practice in guideline development.5Salamander TrustTranslating community research into global policy reform for national action: a checklist for community engagement to implement the WHO consolidated guideline on the sexual and reproductive health and rights of women living with HIV.http://salamandertrust.net/wp-content/uploads/2017/02/2018July_WHO_SRHR_Guideline_Checklist_FINAL.pdfDate accessed: July 11, 2018Google Scholar Such high-level multiagency endorsement and widespread community-level support are the results of the right process, which has been led by women living with HIV in all our diversity, with support from WHO's Department of Reproductive Health and Research. We concur with the three strategies in the Comment regarding meaningful engagement, political leadership and funding, and multisectoral approaches. Translating these into reality is only possible with the following provisos. First, political will, not only at the top, but across all departments within UN agencies and governments, is essential to the adoption of the principles, new recommendations, and good practice statements in this guideline. There is no future for top-down, siloed, one-size-fits-all processes. Instead, principles of women-centred, rights-based, holistic, informed, non-judgmental, voluntary, confidential choice should be core to all new guidance. We radically reject public-health-only approaches that “harmonise” treatment, with a vertical HIV-prevention-specific focus that prioritises numbers over quality. These have undermined and failed many women repeatedly, fostering violence in health-care settings, damaging our mental health and adding further challenges to our treatment adherence.6Orza L Bass E Bell E et al.In women's eyes: key barriers to women's access to HIV treatment and a rights-based approach to their sustained well-being.Health Hum Rights. 2017; 19: 155-168PubMed Google Scholar Some women do not “fail to adhere” to treatment. It is bad health policies and programmes that fail to understand our challenges. The urgency of all this is illustrated in the recent Botswana dolutegravir trial result, with concerns about its use at the time of conception,7WHOWHO statement and Q&A on potential safety issue related with DTG.http://www.who.int/hiv/mediacentre/news/dtg-statement/en/Date accessed: July 11, 2018Google Scholar and additional concerns about tenofovir and darunavir/cobicistat during pregnancy.8Siemieniuk R Bewley S Guyatt G et al.Authors respond Re: Antiretroviral therapy in pregnant women living with HIV: a clinical practice guide.BMJ. 2018; (published online March 12)https://www.bmj.com/content/358/bmj.j3961/rapid-responsesDate accessed: July 2, 2018Google Scholar, 9Han DH Prezcobix not recommended during pregnancy, according to updated labeling.https://www.empr.com/news/prezcobix-darunavir-cobicistat-pregnancy-hiv-lower-exposure-virologic-failure/article/771097/Date accessed: July 2, 2018Google Scholar Some governments are now withdrawing dolutegravir from all women of childbearing age, without consulting them, assuming that is dangerous for them all. It is true that many women living with HIV of childbearing age may be pregnant, contemplating pregnancy, or dealing with unintended pregnancies, sometimes through violence and/or no access to contraception. Yet this blanket approach further limits women's options. What should always be paramount is what it states in the WHO 2017 SRHR guideline: our right to our own choices, with safety at home and in clinics, to make our own individual decisions about if, what, and when we take antiretroviral therapy and/or contraception. Essentially, we need, and have the right to, fully informed, safe access to comprehensive non-judgmental SRHR care, including support to navigate adherence and potential consequences and side-effects, whatever decisions we take. Second, new and effective options for medication and for contraceptives that are safe for ourselves and our babies are urgently needed. Few women feel comfortable reverting to efavirenz after experiencing central nervous system side-effects.10Apostolova N Funes H Blas-Garcia A Galindo M Alvarez A Esplugues J Efavirenz and the CNS: what we already know and questions that need to be answered.J Antimicrob Chemother. 2015; 70: 2693-2708Crossref PubMed Scopus (112) Google Scholar But in some countries, information on side-effects and options are not offered and there are too few alternatives. We don't need pills forced down our throats. Life-changing decisions should never revolve around someone else's timeline in the name of “test and treat”.11Vrazo AC Sullivan D Phelps BR Eliminating mother-to-child transmission of HIV by 2030: 5 strategies to ensure continued progress.Glob Health Sci Pract. 2018; 6: 249-256Crossref PubMed Scopus (39) Google Scholar We require time, space, and full information about side-effects and options. We want approaches that go beyond the biomedical, and provide peer-led psychosocial support that transforms our lives. If our SRHR are improved, so will our ability to take medication for life.12UNAIDSJoint United Nations statement on ending discrimination in health care settings.http://www.unaids.org/sites/default/files/media_asset/ending-discrimination-healthcare-settings_en.pdfDate accessed: July 2, 2018Google Scholar The pharmaceutical industry therefore needs to engage with us also.13Patient ViewHIV/AIDS patient groups are discontented with pharma, believing that the industry should better understand the needs of communities with HIV/AIDS.http://createsend.com/t/j-9D28EDDA2962DC692540EF23F30FEDEDDate accessed: July 2, 2018Google Scholar Finally, fund us too! Despite clear evidence that a strong women's rights movement is the one single factor to reduce violence against women, and improve our SRHR, organisations of women living with HIV remain chronically underfunded.14Association for Women In Development20 years of shamefully scarce funding for feminists and women's rights movements.http://www.awid.org/news-and-analysis/20-years-shamefully-scarce-funding-feminists-and-womens-rights-movementDate accessed: August 29, 2016Google Scholar We cannot conduct further research like our ground-breaking survey and we lack funds to use the checklist to advocate for full implementation. Our role in comprehensive research is critical to ensure effective policy and programming, especially for marginalised transgender women. We are ready and able to participate in and lead formal research processes; share insights and experiences with policy-makers and providers; and build policies and programmes that work for us. Without political will, and new advances in science and funding, all proclamations fail us all. The time to uphold our SRHR is now. Imagine what could be possible if policymakers, the pharmaceutical industry, researchers, programmers, donors, and women living with HIV aligned to respect rights and turn rhetoric into reality. We declare no competing interests, other than that we are all women living with HIV. None of us was funded to write this letter. We wish to acknowledge the original support of survey co-authors, Luisa Orza, Susan Bewley, and Tyler Crone. Investing in sexual and reproductive health and rights of women and girls to reach HIV and UHC goalsEach year, 200 million women have an unmet need for modern contraception, more than 45 million women receive inadequate or no antenatal care, 1 million women and girls acquire HIV, and 25 million abortions are unsafe.1,2 These numbers illustrate huge gaps in access to basic sexual and reproductive health services, posing serious challenges to achieving universal health coverage (UHC) by 2030. These gaps in access are heightened by reduced financing for international development, and highlight the importance and urgency of strengthening linkages between HIV and sexual and reproductive health and rights (SRHR) programmes. Full-Text PDF Open Access