Today, people around the world still face barriers in attaining the highest quality of healthcare. One such barrier, a human-made one at that too, is Discrimination. Access to healthcare is a fundamental human right; Each individual deserves quality healthcare that is provided free of stigma and without bias. This is particularly true for people living with HIV, a condition which attracts high levels of discrimination in health systems worldwide.
At the 2017 World Health Assembly in May, IFMSA became one of the first youth-led organizations to openly support the UNAIDS’ Zero Discrimination Agenda by issuing a Declaration of Commitment in which we vowed to work towards ending stigma in healthcare by collaborating with Youth-Led Organizations and Representatives from Young Key Populations. As part of this collaboration and to commemorate World AIDS Day which was held last December 1st, we hosted a UNAIDS-supported webinar to address HIV related Discrimination. The webinar aimed to provide a closer look at different aspects related to discriminatory attitudes and stigma in healthcare. We brought on two expert advocates, who are well versed in HIV-related discrimination and stigma within healthcare systems, to speak to our audience on this particular topic.
Below, we share with you the key remarks from the webinar:
Alice Welbourn, a strong advocate for women living with HIV provided a detailed insight on shortcomings of healthcare systems, in meeting the needs of these women. Above all, women living with HIV need the right to voluntary, confidential and informed choices regarding treatment and their sexual health, however, this is not yet universally available and many of them are met with varying forms of stigma when seeking healthcare. One such form is structural violence, ranging from simple adverse looks and rude comments to lack of confidentiality, failure to care, coercion and even forced abortions or sterilization. To compound this, women living with HIV are most affected by Gender-based violence, directly affecting their health-seeking behavior many times over.
She emphasized that it is important for present and future healthcare providers to be familiar with the Universal Declaration of Human Rights, especially articles 26 and 27 pertaining to educating and sharing scientific knowledge with people in receiving care, allowing them to make better-informed choices. More than physical wellbeing, we must protect the rights of people living with HIV and give them the opportunity to manage their own sexual and reproductive health. She also noted that instead of treating only the virus, a multidisciplinary team is crucial in caring for people living with HIV. Alice made a mention of the House Model, created to represent the sexual and reproductive health and rights of women living with HIV. This promotes a holistic approach to the issue, built on the Grounds of safety, respect, and support, with Walls of Human rights, gender, and meaningful involvement and a Roof of fertility, mental health and access to ARV treatment (see this link for more information). It is now evident that the first contact with a physician strongly affects coping with diagnosis and adherence; thus past clinical parameters, emphases must shift to quality of life and the patient’s feelings.
Alice and the Salamander Trust work on several approaches to end discrimination in healthcare, all based on a rights-based person-centered approach to care. Salamander’s strap line is “On the RIGHT(S) Track.” The acronym TRACK stands for Training, Research, and Advocacy based on Community Knowledge. Through this approach, they implemented a community-level training program for older and younger women and men called “Stepping Stones” to provide them with a structured programme of training, to support them to address and overcome gender-based violence and abuse. (This is because intimate partner violence can increase women’s vulnerability to HIV and can also increase on diagnosis.) Salamander also runs a peer-mentorship training program for women living with HIV where they are able to offer support to other women throughout their pregnancy journey. A key part of Salamander’s work is to show the power of language in ending discrimination, and Alice emphasized a change of common terms which have negative connotations such as from “infected” to “acquired”, “PMTCT” to “Perinatal care”, and from the blame-centered term “Failure to adhere” to the more objective “Failure to retain in care”.
Musah Lumumba, a Ugandan medical student and the Current African Youth NGO Delegate to the UNAIDS Programme Coordinating Board discussed challenges faced by young people living with HIV in medical settings, and ways they can be overcome. As a youth leader within the global community of people living with HIV, he shared that stigma and discrimination against people living with HIV impedes their access to healthcare services and is a huge setback that must be addressed for us to achieve our targets and end AIDS by 2030. Young people are particularly affected by discrimination since more often than not, they must consider socioeconomic constraints when paying for health services as many have not begun working and face stigma in social institutions such as schools due to their HIV status. Structural discrimination is embedded in HIV-related health care, from the set-up of areas for ARV treatment at the hospitals to assigning different treatment cards and more hostile approaches to people living with HIV. They are treated as “models of HIV treatment” without consideration for their general health and wellbeing and are restricted from making independent choices about their sexual and reproductive lives such as freedom of sexual life and relationships, including contraceptive options, childbearing and/or delivery. The end result is a reduced willingness of affected populations to seek life-saving HIV treatment, and consequently, a delayed diagnosis with poor prognosis, increased HIV Comorbidity rates would also occur.
Musah with his colleagues within the Uganda Youth Coalition on Adolescent SRHR and HIV (CYSRA-Uganda) focuses on informed advocacy for Adolescents and Young key populations with healthcare providers, UN and National policymakers, and health organizations. They work on increasing the quality of, access to and utilization of healthcare services crafted to meet the emerging needs and aspirations of all people living with HIV, including advocacy for impact measurement, positive health, dignity with regards treatment in HIV care.
How can IFMSA members work towards a more inclusive, stigma-free healthcare for people living with HIV?
According to Alice, we must push ourselves to find out and assess the rights of people living with HIV in our countries. Where they are restricted, we can work with youth organizations and country-based medical associations to advocate for their inclusion, and incorporate them into any systems they are being left out of, especially in healthcare settings.
We must also advocate for and personally create enabling environments for them to seek and receive care, by removing unfavorable policies and practices directed at people living with HIV in our hospitals and health ministries. We can help build up support groups, involve people living with HIV in advisory groups and make them co-authors and co-researchers where they would surely be able to provide a wealth of information to those researchers, pushing the framework more effectively to give more meaning and direction to our HIV healthcare system.
To Musah, medical students worldwide must-see HIV beyond a disease and explore the psychosocial effects that the diagnosis and stigma can have as well as the health conditions that can come with it. He encourages us to place emphasis on the sexual and reproductive health and rights of people living with HIV, intersectionalities especially regarding pregnancy, mental health, related cancers, drug use, and body image issues.
The speakers did not just deliver strong informative points on the topic, they also addressed a number of questions from IFMSA members during the webinar.
In terms of Social and medical support for people living with HIV, Alice mentioned that women had long been shortchanged, with gender-based violence continuing to be a deterring factor in progress for HIV healthcare systems targeted at women. However, research breakthroughs allow women living with HIV nowadays, to have normal vaginal deliveries and breastfeed with an undetectable viral load. Once more concrete systems are put in place to address violence and abuse, the quality of life for these women could tremendously improve.
Regarding current Medical curricula and HIV related education, Musah strongly believes that it remains inadequate and that curricula must develop further to equip doctors to meet the present and emerging needs of people living with HIV. It must move away from labeling them as patients, and focus on the social determinants of health that affect people living with HIV such as their support systems, social amenities and much more.
As healthcare providers, we should be able to provide enabling environments for people living with HIV who wish to share knowledge on their status with others and discourage the use of force or coercion to get anyone to share their HIV status. We must also be able to provide them with facts concerning their sexual lives, viable options for contraception, and make them comfortable enough to pursue pleasurable sexual lives.
The take-home message from the webinar was that everyone, irrespective of their HIV status, deserves quality, discrimination-free healthcare that meets all their needs, physical and otherwise. HIV is just a condition and does not confer any limitations to the heights anyone can attain in life and as such we must steer clear from “labels” or “tags” for people living with HIV. We healthcare providers must be humane and have mechanisms that can measure and evaluate our actions. We must also keep learning and finding more ways to fight discrimination and help those who receive care, live better quality lives.
Overall, our speakers provided very relevant perspectives on issues that often lack visibility, especially in the medical community, and inspired us all to provide healthcare that is infused with humanity.
If you want to watch the webinar, you can do so at the following link: https://www.youtube.com/watch?v=P8zQjWVrRww
If you would like to learn more about Salamander Trust’s work, see www.salamandertrust.net
Modupe Ojelabi – IFMSA HIV and other STIs Programme Coordinator
Alice Welbourn – Salamander Trust
Musah Lumumba – Uganda Youth Coalition on Adolescent SRHR and HIV
Carles Pericas – IFMSA Liaison Officer for Sexual and Reproductive Health issues including HIV and AIDS.