This submission draws attention to the importance of palliative care in the response to HIV and AIDS, an aspect which has been neglected in the past.
Joan Marston, CEO of ICPCN, and Busi Nkosi, Director of Advocacy at ICPCN, explain more about the consultations and why it is important to draw attention to the role of palliative care in the AIDS response. She also gives advice on what hospice and palliative care workers and volunteers can do to help.
What is happening and why?
BN: UNAIDS has embarked on a campaign to end AIDS as a public health threat by 2030. To achieve that goal, the UNAIDS board has asked the Executive Director to undertake a multi-stakeholder consultative process to update and extend the existing strategy.
JM: Consultations in each region are to develop regional strategic plans that feed into the global plan. This is important as HIV and AIDS present differently in different world regions. The aim is to stop AIDS by 2030.
BN: The 2016 – 2021 strategy is being developed through this inclusive process of holding regional face to face and virtual consultative meetings with stakeholders. This process will terminate with a global consultation that will take place in on Geneva 22nd – 23rd April. The aim is to fast track the period and build upon:
- the UNAIDS vision of zero new infections, zero discrimination and zero AIDS related deaths; and
- the 10 goals and three strategic directions of the UNAIDS 2011 – 2015 Strategy to Revolutionise HIV prevention; Catalyse the next phase of treatment, care and support; Advance human rights and gender equality for the HIV response.
What can palliative care offer the consultation?
JM: The focus of the strategy is on prevention and treatment to stop new infections and reduce mortality, and this must be the number one focus.
However, according to the current UNAIDS strategy, treatment is always meant to consist of: ‘treatment, care and support’, but unfortunately the care and support part is often left off.
While mortality is reducing, it still remains high, and there seems to be a reluctance to discuss what to do with people who are not on Anti-Retroviral Treatment (ART) or failing on treatment, babies who are born infected and not accessing treatment, orphaned children, people with bereavement needs, and others who are being ‘left behind’ by the strategy as it is.
There is also a lot of concern about adolescents who are getting infected at this stage and many who have been on ART all their lives are stopping treatment due to lack of support or for other reasons.
There has been some excellent research carried out in southern Africa on social protection and the value of cash transfers in reducing infections and improving quality of life. I believe we need to do more research on the impact of palliative care on HIV infected and affected children and adults.
A preliminary external review of a four year project to develop palliative care for children in Malawi and the Maharashtra district of India has shown an improved quality of life of the children on these programmes in India and reported improved length of life in Malawi.
We know that palliative care supports adherence to treatment, improves quality of life, manages pain and other symptoms which are still experienced by People Living With HIV and AIDS, even if they are on ART. Palliative care also supports prevention through counselling.
BN: Palliative care can also offer cost effective care, as funding for HIV and AIDS programmes is generally decreasing.
Why and how is palliative care being ignored in the global response to HIV and AIDS?
JM: I think there are a few reasons
One is the UNAIDS focus on prevention and treatment – all targets are around reducing the impact of HIV and AIDS through reducing numbers of people infected, and increasing numbers on ART. Prevention of Mother To Child Transmission has been effective, but even with the successes of these programmes, there are still too many babies born infected.
Also, perhaps the palliative care community could do more work to keep a focus on HIV and AIDS and to promote what we can offer, for instance: reducing the impact on an individual level, promoting adherence, supporting people with physical, spiritual and psychosocial symptoms, and supporting families and friends, among other things.
Also, as the prevalence of HIV and AIDS is very regional and some countries are affected much more seriously than others, this may not be a priority for many leaders in the palliative care world.
BN: Many of the major decision makers have no knowledge of palliative care, and some who do have wrong perceptions about it.
What are the results of this marginalisation?
The way that the response to HIV and AIDS focusses on the pressing need to provide access to medication, means that there has been a withdrawal of funds from palliative care and other psychosocial support services.
This means that palliative care services are restricted in their capacity to support the prevention of infection and access to ART and other essential medicines, as well in their ability to provide much needed spiritual and psychological support to patients and their loved ones.
Also, as people living with HIV age, they will have a number of different diseases (co-morbidities), such as cancer and organ failure. This brings more palliative care needs, which are often not being met.
What can we do?
At this stage people can
- Add comments to the regional strategic plans. You can find information on the regional consultations – including the names of the coordinating organisations – on the UNAIDS website.
- Email UNAIDS directly at firstname.lastname@example.org
- Post to the UNAIDS Facebook page
- Join the discussion on Twitter by using the hashtag #UNAIDSstrategy2021 or tweeting at @UNAIDS.
- Submit a request to attend the Global Consultation in Geneva on 22nd – 23rd April
- Insist on care and support for children, as they are currently completely unrecognised.
You can access the WHPCA/ICPCN submission to UNAIDS online.