The United Nations Programme on HIV/AIDS (UNAIDS 2014) has estimated that 35 million people live with HIV globally, out of which 24.7 million live in Sub-Saharan Africa. This makes nearly 71% of the global total.
The majority (58%) of people living with HIV in the region are women. An alarming 80% of all young women in the world living with HIV reside in sub-Saharan Africa (UNAIDS 2014).
With 6.5 million people living with the virus, South Africa has been identified by UNAIDS as the country with the highest number of people living with HIV in the world.
It also has an extremely high prevalence of rape and gender based violence, symptoms of deeply engrained gender inequality.
According to a report published by UNAIDS in June 2016, almost 2000 new HIV infections occur among young women and adolescent girls aged 15-24 in South Africa each week, a rate 2.5 times more than among the males of same age.
Dr Liz Gwyther, CEO of the Hospice Palliative Care Association of South Africa, explains that women are at greater risk of contracting HIV due to weak economic conditions, inequality in gender power relations, intimate partner violence, restricted access to healthcare services and education and insufficient recognition and representation under the law.
In South Africa, she notes, women are not only patients, but they are also caregivers and often the bread winners in the family. She points out that poverty is a cause and exacerbating factor behind the HIV prevalence among women in the country.
She notes that rape is another major factor behind the HIV prevalence in South Africa among women and young girls. Since the law has not adequately addressed the crime, there has been an increasing number of rape cases with HIV involved.
Although the development of antiretroviral therapy (ART) in the mid-90s has meant that HIV/AIDS has changed from a terminal to chronic condition, it is still a life threatening illness which requires palliative care.
Dr Gwyther reminds us that the World Health Organisation (WHO) has recognised palliative care as a necessary component for people living with HIV/AIDS, not only to treat their pain but to deal with variety of symptoms they can experience such as diarrhoea, cough, shortness of breath, nausea, weakness, fatigue, fever and confusion. Lack of palliative care results in untreated symptoms that hinder the patient’s ability to continue his or her daily life activities.
She also clarifies that HIV is different to other terminal illnesses because its effects are not constant. The patients do not feel pain all the time. Their condition might get bad at times but most of the time they can continue their daily activities. Therefore, a person living with HIV does not need continuous palliative as would be the case for someone with cancer. However there is often emotional and psychological suffering that demands palliative care.
HIV is a condition which makes a person critically vulnerable to different opportunistic diseases such as tuberculosis or certain cancers. Cervical cancer is one of the major opportunistic diseases among South African women with HIV, and for this palliative care is very effective.
Unfortunately, the risk factors for contracting HIV (poverty, gender inequality or gender-based abuse, etc) may also act as barriers to access to palliative care when women are in dire need of it.
A policy has been drafted by the government of South Africa and the concerned bodies proposing palliative care to be integrated in the healthcare system of the country. The draft also proposes that all the doctors and nurses should be trained in palliative care.
Dr Gwyther is very much concerned about the equal pay rights in South Africa. She pointed out that women in South Africa are not paid equally in any field which makes them financially weaker and therefore more vulnerable than men to poverty, a risk factor to contracting HIV.
Those women who are providing care are either poorly paid or not paid at all. She added that women are seen as ‘naturally’ caring and nurturing, and therefore their work of caring for family or community members is taken for granted in South Africa, and in many other countries around the world.
Dr Gwyther argues that the government and the stakeholders should recognise this and take care of this matter so that women’s economic state improves and with improves the healthcare and palliative care.
Palliative care is an essential part of the response to HIV in South Africa, and has a lot to offer women living with and affected by HIV. The palliative care policy being drafted by the government in coordination with other stake holders Will be an important step in the right direction.