Palliative care for people living with HIV in Africa

Can you describe the need for palliative care for people living with HIV (PLHIV) and their families in Africa? Has this changed since you began working in the field? 

The number of people with HIV who require palliative care is huge. This is due to the effects of the virus, the effect of opportunistic infections such as TB, cyptococcal infections, toxoplamsois and others including HIV-associated cancers such as Kaposi Sarcoma and other lymphomas. In addition, there are complications due to interactions of medications for these conditions, especially anti-retroviral medications (ARVs), and medications for TB and cancer.

As more people receive ARVs and age with HIV, we are also seeing more non-communicable diseases such as diabetes, cardiovascular diseases, kidney diseases and cancers for which palliative care is needed. The need for palliative care therefore does not go away which the introduction of ARVs but it is the conditions for which it is required that change.

In what ways can palliative care benefit PLHIV and their families? 

Palliative care benefits PLHIV and their families through access to better symptom control – especially pain management – as well as helping to manage other symptoms such as coughing and breathlessness.

In addition, palliative care provides an opportunity for PLHIV and their families to address psychosocial, spiritual and legal issues.

Palliative care improves the quality of life for the person living with HIV and their family, as well as improving adherence to treatment. The palliative care team can also provide other interventions, and can play a role in the prevention of common infections such as TB, or even serious illnesses such as cancer or HIV in the family.

Are there any special considerations when providing palliative care for HIV compared to other illnesses such as cancer?

In the context of HIV and AIDS, other infectious agents such as TB are also at play, especially in many African countries. This means that that the focus of service provision cannot be just the patient but must also include other household members, especially children, who are at risk of acquiring other opportunistic infections.

Secondly, the sexual contacts and children of the person with HIV are also at risk of having contracted HIV either through sexual transmission or through mother-to-child transmission. So prevention messaging and links to prevention interventions should always be part of the palliative care package in the context of HIV.

What role has APCA played in providing palliative care to PLHIV in African countries?

APCA has supported a number of countries to respond to HIV and AIDS by setting up better quality care, development of national palliative care standards, better systems to access pain- and other medications, provision of small grants to implementing organisations to better the response, development of stand-alone palliative care policies in eight countries and supporting palliative care education and training so that healthcare workers are able to better care for PLHIV and their families.

In addition, some of APCA’s responses have been towards better adherence to HIV treatment and integration of better symptom control.

Do PLHIV need pain management? Does this differ from the pain management required by people with other life limiting illnesses such as cancer?

PLHIV need pain management. Unlike cancer patients, PLHIV have several factors that combine to cause pain. These include the HIV itself that attacks organs and nerves, opportunistic infections that may be protozoal, viral, bacterial or fungal which cause severe pain. Some of these such as TB, Cryptococcus, CMV, might cause damage to nerves or to other organs or cause meningitis which in itself could be very painful.

The HIV medications might also cause pain, especially through their effect on nerves for which a palliative care approach is necessary.

Many people who started especially on earlier ARV combinations developed peripheral neuropathy for which pain control is critical.

In your opinion, what are the most pressing needs in terms of palliative care for PLHIV and their families throughout Africa?

The most pressing needs of PLHIV include:

• secure and consistent access to ARVs and other medications
• protection from discrimination, criminalisation, and stigma and access to social services such as education (especially for children)
• a health system that continually assesses PLHIV for the complications of the disease and treatment needs
• supporting people to function in their daily lives, and to live a quality life for as long as they are alive
• ensuring that mental health is part of the HIV response.

Is there anything that I have not asked about that you would like to add? 

The health systems in Africa need to move fast towards universal access to ARVs and palliative care for all PLHIV, ensuring that healthcare workers are trained to move beyond initiation of ARVs to management of other non-communicable diseases such as cancer, diabetes, cardiovascualr disease, liver and kidney diseases that are now emerging as key complications for those who have been on treatment for a long time.

The introduction and availability of ARVs in many African countries has been a huge step forward, but palliative care is still a critical part of the response to HIV.