ICPCN calls for UNAIDS to recognise role of palliative care in global strategy

Categories: Policy.

The International Children’s Palliative Care Network (ICPCN) and the Worldwide Hospice Palliative Care Alliance (WHPCA) have submitted a statement to UNAIDS as part of the consultation on the UNAIDS 2016–2021 Strategy, calling on UNAIDS to include palliative care as an essential component of care and support for children and adults at regional and global levels. 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. You can read the full submission on the ICPCN website. 

In an interview with ehospice, Busi Nkosi, ICPCN’s Director of Advocacy explains 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.

eh: What is happening and why?

BN: The 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. The 2016 – 2021 strategy is being developed through an 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 Geneva from 22 – 23 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; to catalyse the next phase of treatment, care and support and to advance human rights and gender equality for the HIV response.

eh: What can palliative care offer consultations?

BN: They can point out the value of palliative in caring for people with HIV and AIDS which leads to retention of patients in antiretroviral therapy, which is one of their major challenges. It is also cost effective care which is important as funding for HIV and AIDS programmes is generally decreasing; it informs them about the Palliative Care Resolution as they don’t seem to have any knowledge of it and offers them experts to consult within the field of palliative care. 


eh: Why and how is it being ignored?
BN: Many people working in the AIDS field have no knowledge of palliative care and some have very wrong perceptions about it. There seems to be a predominant medical focus with emphasis on the importance of medicines such as ART. Their major objective is prevention and they do not understand the role that palliative care can play in prevention. Most importantly, pain and symptom control is not on their radar – ART is everything as far as HIV management is concerned.

eh: What are the results of this marginalisation?
BN: Exclusion of palliative care in the 2016 – 2021 strategy and it will be very difficult to try and get it in within the next five years. We will have to wait for the review in five year’s time.

eh: What can we do?
BN: We can ensure that we get hold of the interim strategy documents that are out for comments in the different regions and include palliative care. If we make enough noise they may realise the importance of palliative care. People should try to attend the Global Consultation in Geneva on 22 and 23 April. They must submit a request to attend the meeting – I don’t think they will refuse because civil society is one of their stakeholders. They should also insist on care and support for children.

Visit the International edition of ehospice for an interview with Busi and Joan Marston (CEO of ICPCN), and more ideas on how to get involved. 

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