ICPCN and the Worldwide Hospice and Palliative Care Alliance (WHPCA) have made a joint submission to UNAIDS requesting that palliative care be included as an essential component of their response to HIV and AIDS.
The submission reads as follows:
We call for Palliative Care to be included as an essential component of the global and regional UNAIDS response to HIV and AIDS
Palliative care is recognised as an integral part of the continuum of care for people living with HIV and their carers. The World Health Assembly Resolution 67 on palliative care adopted in May 2014 calls for the provision of palliative care across all age and disease groups, including those requiring chronic and long-term care such as HIV.
We believe that prevention of infection and access to ART and other essential medicines can be strengthened by palliative care. We also recognize that many people who are HIV infected are not receiving ART at present, especially children, and that even on ART many are experiencing distressing physical, psychosocial and spiritual symptoms that could be relieved by palliative care.
Only a fraction of those that need palliative care can access it. In 98 countries, there are no specialised palliative care services at all. The WHO and the WHPCA in the Global Atlas on Palliative Care at the End of Life (2014) estimate that over 1.2 million people died of AIDS needing palliative care at the end of life in 2011. While we estimate that less than 10% of the need for palliative care is being met, we don’t know exactly how many people with HIV actually receive palliative care. Given that 98 countries worldwide have no identified palliative care services and a further 74 have only isolated provision the unmet need is great. Access to ART and palliative care is considerably lower in children. It is estimated that only 3 in every 10 children who need ART are receiving this (UNICEF), and the ICPCN estimates that only 1 in 10 children has access to palliative care globally. Despite the success in reducing MTCT in 2012, 280 000 children were born with HIV (UNICEF)
It is evident that there is insufficient access to palliative care. The response to the pressing need to provide access to medication has come at a cost of withdrawal of funds from palliative care and other psychosocial support services. In addition, a lack of attention and acknowledgement of the importance of the provision of care and support despite the evidence that these programs improve retention in care and adherence to treatment. A preliminary external review of a 4 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.
HIV/AIDS is a manageable chronic disease in the developed world but severely lags behind in the developing world.
As people living with HIV age, there is increasing incidence of co-morbidities, such as cancer and organ failure, bringing additional palliative care needs, which are often not being met.
Opioid medications are critical for addressing the moderate and severe pain of people living with HIV. It is estimated that pain prevalence is approximately 80% for people living with HIV at the end of life. (Global Atlas). Access to opioid medications is particularly problematic with 80% of the world’s population lacking adequate access to controlled medicines for pain control and 80% of the need for palliative care is in low and middle income countries.
Very little work has been done looking at the specific needs of key populations living with HIV and the extent to which their palliative care needs are being met. UNAIDS should play an important role in building the evidence and addressing this major programmatic gap.
Caring for people living with HIV, both physically and emotionally, is often done by friends, family members and community members, particularly in developing countries with weak health systems. These carers need to be supported with training, equipment, advice and support from health care professionals. The palliative care approach recognises the need to provide support to carers in order that people receive quality care and carers own health needs do not get neglected. However, palliative care services are rarely available.
Despite improved access to ART HIV mortality remains high especially in the developing world. Many millions of children have become orphans, and bereavement needs of adults and children are often unmet.
We therefore call on UNAIDS to include palliative care as an essential component of care and support for children and adults at regional and global level.