World Health Day, 7 April, is an opportunity to remember or become aware of the founding principle of the World Health Organisation (WHO): Health for all. In 2018, it is the 70th anniversary of WHO and to honour this, the organisation has renewed its call for universal health coverage.
The organisation says, “WHO is calling on world leaders to live up to the pledges they made when they agreed the Sustainable Development Goals in 2015, and commit to concrete steps to advance the health of all people. This means ensuring that everyone, everywhere can access essential quality health services without facing financial hardship.”
Since the Alma Ata Declaration in 1978, health has been considered a human right that demands access to healthcare that is timely, affordable, good quality, acceptable and appropriate.
At PATA, there is a mission to mobilise and strengthen a network of frontline health providers to improve paediatric and adolescent HIV prevention, treatment, care and support in sub-Saharan Africa. There is a belief that by placing health providers at the centre of the HIV response, its vision will be realised and all children and adolescents living with HIV in sub-Saharan Africa will receive optimal treatment, care and support and live long, healthy lives.
While a call to our leaders to work towards Universal Health Coverage is crucial, attention also needs to be drawn to one of the biggest barriers hindering access to treatment, as well as keeping children and adolescents engaged in care: stigma and discrimination.
The impact of stigma and discrimination
“Health providers on the frontline of HIV treatment, care and support are key to curbing and challenging both facility- and community-based stigma and discrimination. Health provider stigma and discrimination can inhibit the uptake of HIV and sexual and reproductive health and rights (SRHR) services. Policies and programmes may fail to uphold and fulfil these rights and often neglect to address various human rights barriers and infringements young people face in accessing or questioning the services they receive.” – PATA Executive Director, Luann Hatane
Studies show that HIV-related stigma “is a key factor impeding HIV identification, prevention, and treatment. Stigma and discrimination impact the way communities, family, and partners interact with people living with HIV, and undermine public health efforts to combat the epidemic. This is largely due to the negative impact stigma has on primary and secondary preventive behaviours such as condom use, HIV testing, engagement in HIV care, and quality of care.”
Over the last six months, Jacquelyne Alesi, a Uganda-based HIV activist, has been working with PATA and collating stories across the PATA network on HIV related stigma and discrimination. As a global youth advocate, she has represented young people on the National Forum of People Living with HIV Networks in Uganda, sits on the board of the Global Network of People Living with HIV (GNP+) and she is an Ambassador for The Coalition of Children affected by AIDS. She has collected some stories below on the impact of stigma and discrimination.
*Arielle, a young person from Cameroon, is one of the many young people who have been let down by stigma and discrimination. Orphaned by HIV, she was just 10-years-old when she tested HIV positive. She was initiated onto ART and spent nine years on ARVs, but Arielle lacked a supportive home environment.
Without this much-needed support, Arielle dropped out of school. Psychosocial assessments at her local health facility showed that she was depressed. Eventually she revealed to health providers that she was suffering emotional and psychological abuse. Neglected in her home environment, she was referred to a residential facility for children. While clinicians and social workers tried to visit Arielle, her situation did not improve and it is reported that she suffered further victimization and isolation. Arielle sadly passed away on 21 March, 2018. She was only 19-years-old.
A health provider from the facility where Arielle was treated says, “In Cameroon, like most countries, young people living with HIV like Arielle continue to experience stigma and discrimination, even from those they expect to protect and love them. Until ARV’s are combined with a supportive environment, young people will continue to die from AIDS-related conditions.”
Kevin Munene Njue, a peer supporter in Kenya, points out, “Discrimination, at times, makes clients shy away from even receiving medical attention. It brings with it a stigma that results in many psychosocial issues. It makes living in an already hard world even harder.”
Jacquelyne has found in her experience that young people may deny their HIV positive status for fear of being rejected by peers and family. Many also fear being scolded at by health providers and have reported that after being shouted at or reprimanded by their health providers, they have found it difficult to return to the clinic.
This fear can reduce confidence in health providers. Sabiti Laban, a nurse from Uganda, says, “It creates low self-esteem among patients, affecting their adherence.”
Tools for combating Zero Discrimination
“For adolescents and young adults living with HIV, there are unique challenges that may further impact how HIV-related stigma influences their quality of life and adherence to care. These challenges may be further exacerbated by stigma, social isolation, and oppression associated with HIV as well as their sexual behavior and/or sexual orientation identity.”
The Team PATA Resource Hub holds a variety of tools, resources and guidelines to assist health providers in combatting stigma and discrimination in their associated health facilities. But what does this mean?
Michelle Carine Medjo, a social worker in Cameroon, believes that Zero Discrimination means that health providers treat every individual equally irrespective of their age, sex, gender identity, sexual orientation, disability, race, ethnicity, language, health (including HIV) status, geographical location, economic status or migrant status, or for any other reason.
She adds that the right to dignity is about respecting views, ideas and the concerns of every young person, reorganising and understanding the needs of young people, respecting the fundamental human rights of all people and working with young people to identify solutions to their problems.
Her clinic uses social media, awareness days, local language training and training in communication and awareness. Their clinic is also a member of the local youth advisory council for sexual and reproductive health. She says these attempts to address stigma and discrimination are important because many laws do protect adolescent or young people living with HIV (AYPLHIV), which is why community sensitisation is so important. She adds, “A law cannot be implemented permanently if the oppressors do not understand the harm that they do. Furthermore, obedience to the law depends on local habits in terms of traditions and religion.”
Michelle’s health facility also centres on the belief that there is no one better to fight for HIV rights than people living with HIV (PLHIV) themselves, thus capacity-building is critical.
Luann explains that it is incredibly valuable for health facilities to find ways to ensure YPLHIV are partners in health and that YPLHIV are engaged. She says, “Health providers need to find ways to build relationships with the young people that they serve, involving them more in evaluating, designing and delivering services that affect them.”
“Some health facilities hold regular meetings with young people who access the services, to hear firsthand how the service experience can be improved. Many clinics have also reported initiating suggestions boxes and have also offered opportunities for young people to create supportive activities alongside the clinic, engaging peer supporters and initiating safe places for young people to meet and share experiences.”
A peer support model
By integrating young people living with HIV (YPLHIV) into health facilities, HIV treatment, care and support outcomes for children and adolescents can be improved. Peer supporters can also foster a supportive environment to talk about stigma and discrimination, where children and adolescents feel safe.
For Kevin, a peer supporter himself, zero discrimination means tolerance among humanity. He says, “It is living life accepting and respecting oneself and everyone around you. It means being a human being and responding to people on a human level.”
He explains that when clients come to peer supporters, they are not concerned with what they drank, who the slept with or what they do. He says, “Our major concern is health. When you treat people with respect, they will open up to you. Kindness always opens doors.”
Creating Zero Discrimination
Across Africa, health providers on the frontline – and their associated health facilities – are doing what they can to create Zero Discrimination. As Kevin points out, sensitization is key.
Sabiti says that she believes developing policies around Zero Discrimination could also help in combating stigma. Without consequences, people may not even be aware they are discriminating. However local efforts are not enough. Globally, we need to come together to create safer spaces, increase awareness and make sure that health facilities are supportive and friendly environments. Greater efforts are needed in training, sensitizing and mentoring health providers, whilst also holding them accountable.
Luann says, “We need to provide non-discriminatory health services that are free of judgement. Actively engaging YPLHIV as peer supports in the health system is an important and effective strategy. This, however, must be complemented by increasing mechanisms for engagement with health providers and social accountability tools that can be effectively integrated to monitor and report on change in levels of youth engagement as well as service level improvements that safeguard rights, are non-discriminatory, stigma free and responsive to the unique needs of children, adolescents and families affected by HIV.”
By doing this, we invest in our people. By doing this, we are one step closer to #HealthForAll.
*Names have been changed