A Listening Ear, Sincerity, and Friendship
We can end AIDS by 2030 if we do it Right, do it Together, and do it Now!
“The most important learning of the AIDS response is that we can #endAIDS as a public health threat, but only if we tackle the inequalities which drive it. Addressing stigma and discrimination is critical.”
– Winnie Byanyima, Executive Director of UNAIDS
Stigma, adherence, acceptance, and discrimination are four words often heard in conversation with caregivers, adolescents and young people living with HIV in Africa. Despite four decades of scientific advancement, availability of life-saving treatment, increased awareness and access to prevention technologies and tools, with much progress and lessons learnt along the way – it is persistent inequality and ongoing HIV-related discrimination that stands in the way of ending AIDS once and for all.
“I was in denial about my status. It didn’t make sense to me that I was HIV positive, as my three siblings were not HIV positive. I felt some kind of stigma from my relatives at home, so the journey was not as smooth as I expected it to be.”
– Musa, a young person living with HIV
Zimbabwe
“When I learned that I was HIV positive, I felt like I would die without achieving anything good in life. They took me to the hospital and did the tests. They found out that my CD4 was low, and the viral load was high in my body. I was dying. I started taking the drugs properly immediately, but I was still not accepting of my status.”
– Ngosa, a young person living with HIV, who accepted his status after ten years
Zambia
Whilst life-saving ART is available, we know that poor adherence continues to be a major barrier to ending AIDS. This is almost always tied to stigma and discrimination. Many young people have shared experiences of being isolated, marginalised, made to feel different, and not welcome in the classroom, the clinic and community, or on the sports field, and in some instances, also at home. HIV-related stigma is debilitating and can also manifest as internalised stigma, where people develop a generalised fear and modify their behaviour accordingly. This may result in always expecting and preparing oneself for, and experiencing stigma and discrimination in most situations, be it real or perceived.
“The day I was told that I was positive, I was shocked and couldn’t believe it. Swallowing medicine for the rest of my life was difficult to believe. Also, the public image, how would they see me? Here, once they get to know you are HIV positive, they think you are going to die. People think that by being near me, they will become infected, and that makes me feel uncomfortable.”
– Jacqualine, a young person living with HIV, and mother to a young child living with HIV
Uganda
“Stigma is still very common in my community, but there are other challenges, such as poverty-stricken single parents, child headed households, and families that cannot afford to eat. Many people are not living openly and positively. I witnessed one adolescent who went to live on the streets because of stigma.”
– Isaac, young person living with HIV
Uganda
Research shows that stigma and discrimination in the healthcare setting and elsewhere contributes to keeping people from accessing HIV prevention, care and treatment services and denies people living with HIV the right to access treatment and care. It was disheartening, that at the 24th International AIDS Conference in Montreal, people living with HIV in Africa, especially key populations and adolescents, reported that the ‘heart of stigma’ is within healthcare settings. What’s more is that health workers living with HIV in South Africa shared in a recent study that even they conceal their status in the health facility where they work, for fear of being stigmatised by their colleagues. Addressing stigma is therefore fundamental and urgent.
“Often, when I go to the clinic, I want to ask for information, but I am scolded for being HIV-positive. I feel ashamed and too scared to go back to ask for help.”
– Anonymous
At Paediatric-Adolescent-Treatment Africa (PATA), we focus much of our work on health provider sensitization, training and quality improvement on the delivery of rights-based, friendly and stigma free services. We know, however, that the strongest and most powerful way to overcome discrimination in health care setting is to showcase and celebrate the many health providers who are doing it right, who stand up to stigma and continue to be the face of care to millions of children, families and communities across our continent. We must do much more to acknowledge these health providers and ensure that we share more stories so that together we collectively take action to Do it Right, Do it Together, Do it Now.
That is why in 2022 PATA implemented the ‘Me and My Healthcare Provider’ campaign, aligned to the International AIDS Society’s Me and My Healthcare Provider campaign. Eight nominees were highlighted for #DoingTheRightThing by delivering quality HIV prevention, treatment and care services to children, adolescents and young people living with HIV in South Africa and Zambia. The campaign was then extended to all countries in the PATA network, and we received hundreds of nominations from caregivers and young people, sharing inspiring stories of health providers doing it right!
Many of the health providers who were nominated shared their own experiences of how stigma impacts the health and wellbeing of those in their care.
“Firstly, the biggest challenge is accepting their status. Some people do not accept their status because of a lack of information. This lack of information and ignorance is a major issue and leads to the second biggest challenge: stigma. It also often starts with parents. You find that at home, adolescents are sometimes told not to do this or that in case they infect people.”
– Sister Betherida Lukalanga, Health Provider Champion
Zambia
The problem of stigma starting at home is a difficult one to counter. Clinics should, by their nature, be safe spaces. Any young person, including those living with HIV must be welcomed and encouraged. At the clinic, linkages are established so that young people, or a young mother can access any support needed and parents can be assisted and provided the knowledge they need to better support and care. But it is very difficult, especially for young people living with HIV who are taught fear and discrimination at home, or in the community, they are unlikely to accept their status and even less likely to adhere to treatment schedules. The cost of medication and or accessing the clinic can also be prohibitive.
“Patients who feel affected by stigma will often have their routines interrupted (IIT). They may then go on to transmit the virus to others and this creates higher drug resistance. Every year patients are being switched to the second and third line of treatment. Most third line ARVs are expensive.”
– Innocent Okello, Health Provider Champion
Uganda
This is why education is critical and healthcare setting should lead the way to end and fight HIV-related stigma.
“I realised that there are many challenges around stigma, including us as health providers. We are capable of negatively affecting our patients just as much as anyone. I decided we needed a ‘continuous medical education’ on stigma, to teach us all to reflect more, and change our own attitudes and behaviours. I am happy that my fellow health providers are learning and adopting the change. It is a process, but we are all trying.”
– Hulda Odero, Health Provider Champion
Kenya
“Young people living with HIV need a health provider that understands them and listens to them. I have seen situations where young people living with HIV are ignored or sent away from health queues. This is unfair. When that has happened, I have tried to show other health providers that young people are important and deserve to be given attention and must be treated with respect.”
– Tikhale Singano, Health Provider Champion
Malawi
Delivering healthcare against the odds
Yet, healthcare providers also face many challenges in their line of work, especially in over-stretched health systems and under-resourced areas. Transport costs and distances to clinics can be wearisome, with a huge volume of patients who must be attended to in a short space of time. There is a shortage of supplies, no resources, not enough funding, and limited space and infrastructure to support privacy and confidentiality. There are sometimes stock-outs and/or test results taking too long to be returned. This creates many barriers and frustrations for health workers and can lead to burn-out and lack of motivation. These daily stresses can also desensitize the health worker even more or result in them taking out their frustration on the patient, even if unintentionally. Many health workers do not have access to regular training or mentorship, are not always remunerated, and are often subject to inconsistent payment and unsafe working conditions.
And yet, despite these odds and sacrifices made, health provider efforts, especially when done well and done right, mostly go unheard and unrecognized. Remaining committed to their work and providing quality, rights-based, and stigma free services to all, including children, adolescents and young people living with HIV, despite these challenges, is what sets PATA health provider champions apart.
“It is really important to me that in my practice we are very open with each other and very open about what challenges our kids are facing. Early in my medical training, the pre-ART era, I saw some of the difficulties in accessing antiretrovirals and the intense suffering that people experienced. It has been amazing to see the transformation over the last decade and to help scale up the antiretroviral care available to kids. But I’ve definitely seen stigma and mistreatment of patients in different settings. Some of it is related to an overburdened healthcare setting and sometimes its health providers not seeing themselves in the reality of others and not recognising their suffering. At its core, treating people how you want to be treated, or how you want your children to be treated is so important.”
– Dr Liane Campbell, Health Provider Champion
Tanzania
What makes a Health Provider Champion?
During this campaign we have identified a few common, but fundamental elements to being a health provider champion.
Relations is at the core of person-centred care
All nominations highlight how Health Provider Champions have instilled a sense of positivity in place of uncertainty. From the many nominations sent in, it is clear that relationships built between health provider and client and/or caregivers is at the core and can make all the difference.
All nominations shared examples of exceptional care and consideration. In all instances the common theme throughout was that it was much more than just health care or access to health care. It was about attitude, kindness, commitment, care and consideration. It was about going the extra mile!
“Dr Liane is quite different to other health providers whom I have met with before. She is kind, charming, and has a whole person approach to care. She is compassionate and always positive. She fights against stigma and even helps when you have social problems with family and neighbours relating to stigma and the segregation that I experienced.”
– Grace, a young person living with HIV
Tanzania
“I nominated Kgothatso for the Health Care Champion Award because when I met her in 2019, she made me feel better about myself. She always encouraged me, and I developed this sisterly relationship with her because she was always there for me. She has never judged me or stigmatised me in any form or way.”
– Mokete, a young person living with HIV
South Africa
“Hulda is unique because she accommodates all of us. She has passion and the ability to inspire us, and we all strive to follow her guidance to live positively. She loves her job and is committed always giving us attention and time on our clinic days. Despite a busy schedule, she gives us the freedom to see her whenever we have challenges and talks to us about them and listens without judging. Personally, I find her trustworthy because she handles my issues with a lot of confidentiality and never heard her share my problems with my peers.”
– Celine, a young person living with HIV
Kenya
“Tikhale has played a big role in my viral load suppression. A few years ago, I almost gave up my life because of depression. Tikhale was there to encourage me, and she would call me to give me hope and make sure that I have taken my drugs, every single day. She also visited me twice a day and brought me fruits and food.”
Geoffrey, a young person living with HIV
Malawi
A champion approach by health providers revolves around educating and providing the correct information and empowering those in their care with treatment literacy so that they can manage, make decisions and have choices in their own health. Health providers can break stigma by always sharing the facts, dispelling myths and using every opportunity to provide linkages to supportive networks and peer support systems that can have a lasting effect.
“We usually have meetings with support groups. Each young person has a turn to speak and share their story and offer guidance to another. This can help break down fear, and for those living in denial or who may fear disclosing their HIV status, they are encouraged and supported to open up. We have support group meetings every Saturday when it’s convenient.”
– Sister Betherida Lukalanga, Health Provider Champion
Zambia
Being a health provider champion is about leading by example, working with your team, and placing the child, young person, and family at the centre of care. Person-centred care that is responsive is important no matter where you are. Involving those affected directly in the delivery, and the monitoring of the service quality received is also helpful – and will improve health outcomes and can strengthen clinic-community collaboration.
“I think we’re all human and part of the human condition is to get sick and experience illness. One thing we really like to do here at Baylor is foster a team approach, where we work together with the kids and adults, parents, family, health providers, and so on, where everyone is part of the team. Everyone in the team has a role to carry, and when we work together, we feel like we can carry those burdens of a life-threatening illness more easily.”
– Dr Liane Campbell, Health Provider Champion
Tanzania
Being a health provider champion is to adopt and expand peer support models and support the effective integration of these models. The power of peer support cannot be overstated. Peers have first-hand experience of health access gaps and are well-placed to understand and respond to the needs of their communities and builds an important safety net, offering guidance, connection and support.
“I get exposed to a group of people who are the same as me, so I choose to get in touch with them because I know that they are the ones who can help me. Basically, I do not spend time with the community that discriminates against me, I would rather spend my time with those people who can uplift me.”
– Geoffrey, a young person living with HIV
Malawi
“When young people have someone to talk to, when they know that Sister Nomusa is free for example, it becomes easier to get help. They don’t bottle up issues, we deal with their issues as they come. That non-judgemental character that we show helps them open up and boosts their esteem at the end of that day.”
– Sister Nomusa Ndhlovu, Health Provider Champion
Zimbabwe
“It is important to offer a friendly, free space so they know they can count on us whenever they need assistance or just a service. Health care workers should always be encouraging and listen to their patients. They need to know that they can come to you.”
– Ramodipa Kgothatso, Health Provider Champion
South Africa
We can end AIDS by 2030!
This goal is achievable, but we need leadership, activism, and investments to do what is right for kids! HIV-related discrimination—and stigma is a human rights issue. People have a right to protection from discrimination and to a life of dignity where stigmatizing attitudes do not impede the enjoyment of their other rights, including the rights to education, health care, work, access to justice, privacy, family, bodily autonomy and other rights.
Let’s stand up to stigma and end all forms of stigma in health care settings. It’s time for us to do it Right, do it Together, do it Now!
Read PATA’s 2022 Call to Action for ending AIDS in children and adolescents – a roadmap to 2030.
“I want to encourage young people living with HIV to follow their dreams. They can still achieve optimum health and they can still live a normal life. Approach your health providers. We are free, we have online platforms that can be used, and every day that I go to work, I am there for you.”
– Sister Nomusa Ndhlovu, Health Provider Champion
Zimbabwe
“Regardless of your HIV status, whenever you need assistance from the healthcare facility, feel free, go there. Even if they judge you, whatever they are going to say, at the end of the day you are the one who needs that service. You must make sure you can access it for the sake of your health, not for the sake of anyone else.”
– Musa, a young person living with HIV
Zimbabwe
