World AIDS Day on 1 December shines a spotlight on a virus that has been a subject of scientific research and debate since the virus was identified in the 1980s. According to Statistics South Africa: “The estimated overall HIV prevalence rate is approximately 13,7% among the South African population. The total number of people living with HIV (PLWHIV) is estimated at approximately 8,2 million in 2021. For adults aged 15–49 years, an estimated 19,5% of the population is HIV positive.”
The data collected from 89 Hospice Palliative Care Association (HPCA) hospice members shows that in 2019 and 2020, they cared for around 70,931 clients (this number includes family and/or household members of patient’s and those screened for Covid-19. Around 7,200 of these patients are HIV positive. Many suffer from more than one diagnosis such as coinfection with TB, cancer and other chronic conditions.
South Africa has the world’s largest ART programme, which has undergone further expansion with the implementation of ‘test and treat’ guidelines. South Africa was also the first country in sub-Saharan Africa to fully approve PrEP, which is made available to people at high risk of infection.
ARVs have changed the face of the disease, with those who start on it, and stick to it, often living healthy lives.
Hospices report however that those who have a minimal support structure in their life still fear discrimination and rejection in their families when they are informed that the test has shown they are HIV positive. People also have fears and anxieties about their future when they are diagnosed with HIV. Women can be fearful about informing their partners on whom they may depend for survival, and sometimes they fear bringing ARV drugs home in case they are discovered. And if you are desperately poor, it is very difficult to find adequate, nourishing food.
And still, the death rate at Tapologo Hospice dropped from 36% in 2004 to 1% in 2021, which signifies the move from a death sentence to a life-threatening illness with the provision of ARVs.
Ewa Skowronska, CEO of the Hospice Palliative Care Association (HPCA) says: “Holistic care that includes psychosocial, spiritual support and bereavement are all needed to offer people a better quality of life and to help them comply with the medication schedule. It’s a complicated disease as it carries with it the psychological challenge of a lifetime on medication and combatting stigma. A support system that assists people to mentally and emotionally work with the diagnosis is really important.
“Hospices care for patients of all ages, including teenagers. Some of them may have got infected via MTCT (Mother to Child Transmission) at birth or later in life. Some of the hospices care for the orphans of parents who were hospice patients and who died of AIDS. They monitor their health, school performance, help with navigation of the social system of grants and reduced fees, provide nutritious meals and support those children psychologically so that they can effectively participate in a future healthy life and embrace optimal living.”
According to Sue Boucher, Project and Communications Manager of PatchSA, “We are pleased to note the reduction in the number of children both infected and affected by HIV and AIDS due to the accessibility of ARVs and increased awareness and education on lowering of vertical transmission from mothers to their babies. However, AIDS is a life-threatening illness with additional complexities due to stigma and the need for good nutrition and daily medication, and we believe that all children and adolescents who are HIV+ require the holistic approach to their wellbeing that palliative care offers. Unfortunately, the handful of children’s palliative care services in South Africa are desperately inadequate to meet the great need that still exists, and we call upon all relevant stakeholders to work with us to ensure the development of these vital paediatric services.”
Concludes Skowronska, “”The HPCA is actively involved in raising awareness of palliative care and what services hospices offer as well as working with Government and other organisations to make these services more financially sustainable and accessible to all. We’re all about partnerships – with the goal of making access to palliative care for all South Africans. An HIV diagnosis can be a life-threatening diagnosis and hospices provide services that are a partnership between carers and patient; with the ultimate goal of ensuring that patients are able to live as fully as possible, and should they die – that they do so with dignity.”