AGENDA 10 THEMATIC SEGMENT: ZERO DISCRIMINATION IN HEALTH CARE SETTINGS
By the Athena Network and the Center for Reproductive Rights
This statement is made on behalf of the ATHENA Network and the Center for Reproductive Rights. As of 2016, 51% of people living with HIV were women. These women have a fundamental right to sexual and reproductive health, and non-discrimination in health care settings is a critical aspect of realizing this right. Unfortunately, in many countries, women living with HIV do not have equitable access to health care and face multiple and intersecting forms of discrimination. In fact, evidence, including the research from the People Living with HIV Stigma Index, shows that women living with HIV experience some of the most egregious rights violations and violence.
Consider the story of Francisca, a young woman from Chile, who was sterilized without her consent because she was HIV positive. She chose to undergo a caesarian section for her pregnancy, only to discover that her doctor also performed a sterilization procedure. Sadly, Francisca’s story is emblematic of a broader, global problem – coerced sterilization cases have been identified in the Dominican Republic, Namibia, Mexico, South Africa, Venezuela, among other countries.
The impact of forced sterilization is disastrous. Women who are forcibly sterilized are robbed of their basic reproductive freedom. They may be ostracized by their families and communities, and/or abandoned by their partners. Moreover, fear of discrimination and abuse by medical providers may deter women from seeking essential HIV services, thus undermining the overall response.
Despite these horrific stories, we know what to do to address these issues. First, the responsible actors must acknowledge the violations and provide redress. In Francisca’s case, Chile has already acknowledged the government’s failure to protect the reproductive rights of women living with HIV. The Center and Chile are negotiating a friendly settlement under the Inter-American System to guarantee individual reparations to Francisca and to adopt general measures to prevent other women from experiencing the same violations. Furthermore, in 2014, the Supreme Court of Namibia upheld a ruling in favor of three women living with HIV who had been sterilized without their informed consent, recognizing that the decision to undergo sterilization is of great personal importance. These cases showcase women’s agency in calling for accountability and redress – these wins only exist because of the courage and willingness of these women to speak out about their experiences.
To eliminate discrimination, the health care sector must take a rights-based approach to the HIV response. In this regard, we encourage stakeholders to refer to the WHO guidelines on the sexual and reproductive health and rights of women living with HIV. Women, their families and their communities should be at the center of service development and provision. There must be utmost respect for women’s reproductive freedom and agency. Moreover, all stakeholders must know their rights and women must have access to information to make informed choices. Finally, the medical ethics of confidentiality and informed consent must be promoted and respected for all, regardless of HIV status.
By the International Community of Women Living with HIV (ICW)
Thank you to UNAIDS and to the members of the PCB for the opportunity to give voice to the lived experiences of women living with HIV around the world.
Women living with HIV, particularly networks of women living with HIV have been sounding the alarm and raising awareness of our lived experiences of stigma, discrimination and human rights abuses in health care settings especially in the context of realizing our sexual and reproductive health and rights for the past 25 years.
With relatively limited resources, we have been documenting and raising awareness about the negative impact of stigma and discrimination on our ability to access and adhere to treatment and we have supported the call to arms from our sisters, allies and partners in key populations about the damaging impact stigma has. Forced and coerced sterilization is a particularly violent and egregious violation that occurs in a continuum of disrespect for the dignity and agency of women living with HIV in the context of our reproductive health and rights.
This is not a problem of the past- this is a problem today, now and it is urgent for the lives and well being of women living with HIV and for our shared goals to reach 90 90 90.
As a result of the bravery of women living with HIV coming forward to report these violations, often at great personal risk, women and legal partners have been able to bring litigation in Namibia and Chile and ICW’s sister networks along with KELIN and GEMS are involved in two cases now in Kenya as well as ICW Southern Africa having filed a complaint before the Commission on Gender Equality in South Africa on behalf of women who have been forcibly sterilized there.
But we know that litigation alone will not create the sea change we need. We need structural changes that reach down to the grass roots We need policy and practice that doesn’t just sit in policy binders but that empowering women to know their rights particularly SRHR and supporting them to claim those rights- not just in global meetings like this one but in the private intimate spaces of clinic and doctors’ offices.
We want this to stop so that not one more woman experiences this violence. And we want justice.
By the International Network of People Who Use Drugs (INPUD)
Experiences of health care for criminalised populations, such as people who use drugs, often turn from those of positive, nurturing care to experiences of cruelty, inhumanity and degrading treatment. Multiple and intersecting forms of stigma and discrimination in health care settings play out at all levels; that of the individual, site, programmatic and structural level.
Firstly, judgmental attitudes construct us as dirty and dangerous. This drives us away from the very health services that are designed to serve us. Stigma and discrimination lie at the source of why we opt out of seeking, or continuing treatment. Rather than attributing this to the discrimination we face, health care professionals and society responsibilise people who use drugs.
Secondly, stigma and discrimination manifests in our community being denied treatment when we need it; our attempts at seeking treatment are written off as drug seeking behaviour or we are seen as not being deserving of treatment; this is reflected in the abysmal percentage – estimated at 14% – of people who use drugs living with HIV receive ART treatment.
Thirdly, we face arbitrary and punitive regulations when engaged in opiate substitution therapy; we are subject to compulsory urine testing, the results of which are used to suspend treatment.
Further to this, people who use drugs are subjected to compulsory and involuntary treatment; it is estimated that half a million people are detained in government run compulsory drug detention centres, where physical and sexual assault, forced detoxification and forced labour masquerade as treatment.
In considering the move towards solutions, the International Network of People who use Drugs echoes Madame Ruth Dreifuss’ statement. The critical first step is radical decriminalisation. The inherent links between criminalisation and health care discrimination are undeniable; and have been emphasised in the joint UN and WHO release on ending discrimination in health care settings which calls for the “reviewing and repealing punitive laws that have been proven to have negative health outcomes” by member states.
Decriminalisation is necessary. Decriminalisation is the first step towards addressing stigma and discrimination. This is what will lead us towards achieving our common goal of ending AIDS.