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The global epidemic that is still with us

November 12, 2021 | Press Releases

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.”

If you are looking for a hospice or wish to donate, visit www.hpca.co.za. There is a FIND A HOSPICE tool to help you find a hospice in your area.

 

 

About the HPCA

The Hospice Palliative Care Association (HPCA) is a registered NPO in South Africa. Founded in 1987, the HPCA is a member organisation for South African hospices. As a national charity, the association champions and supports more than 108 member organisations that provide hospice services to more than 120,000 people per year.

There are nine regional hospice associations that are members of the Hospice Palliative Care Association, representing each province in the country. These are located in the Western Cape, Eastern Cape, Kwazulu-Natal, Free State, Northern Cape and the North-West province. The Association of Northern Hospices represents hospices in Gauteng, Limpopo and Mpumalanga.

www.hpca.co.za

 

About hospice

HPCA’s mission is to promote quality in life, dignity in death and support in bereavement for all living with a life-threatening illness – which includes Covid-19. This entails providing medical care, psychosocial care, and spiritual support, as well as end-of-life support. Each hospice has a multidisciplinary health care team that includes a medical doctor, professional nurse, social worker and home-based carers. All hospice staff are trained in palliative care which aims to ensure a good quality of life for patients who have been diagnosed with life -limiting illnesses and to prevent and relieve unnecessary suffering. Care also extends to families, especially after their loved ones have died and as they process their grief.

Hospices provide holistic care to people affected by life-threatening diseases, regardless of whether they can afford to pay for this or not. To date only 18% of patients who need palliative care are able to access these services.

 

About PatchSA

Palliative Treatment for Children South Africa (PatchSA)  is an inclusive and compassionate network that aims to share specialised knowledge, tools, resources and educational opportunities to ensure the best possible care for children with life-threatening and life-limiting illnesses, and to provide support to healthcare professionals, families and lay caregivers.

Patch is a registered non-profit organisation. NPO no: 124-201

And a Public Benefit Organisation. PBO no: 930047744

 

www.patchsa.org