Palliative care and HIV: Let’s close the gap to end AIDS, but don’t ignore the reality of people’s experience now

Categories: Policy.

In 2013, there were 2.1 million people who became infected with HIV, 240,000 of these were children; 1.5 million people died from HIV related causes. All of these figures have significantly decreased from 2005.

Yet, the reality is that globally only 37% of people get anti-retroviral treatment (ART) and 76% of children living with HIV do not get the HIV treatment that they need.

The World Health Organization (WHO) and Worldwide Hospice Palliative Care Alliance’s (WHPCA) Global Atlas on Palliative Care at the End of Life estimated that over one million people could benefit from palliative care at the end of life each year, but many more require palliative care through the course of the condition.

The fact remains that regrettably many people living with HIV worldwide, both on ART and not, require hospice and palliative care, and unfortunately the services are often not available. While universal access to care and support, including hospice and palliative care, by 2015 was a target of UNAIDS and the international community, little focus was ever actually paid to this and it was referred to as the ‘forgotten pillar’ of the response.

Pain control

Pain control is an important issue in the treatment of people living with HIV, particularly at the end of life but estimates vary on the need. Treat the Pain estimate approximately 50% of people living with HIV require pain control, some estimates rise to over 90%.

Either way, the inequity in access to medications including oral morphine is without question. Treat the Pain highlight that while 99% of HIV deaths happen in low and middle income countries, these countries only account for 7% of the consumption of medicinal opioids. Whereas 1% of the worldwide HIV deaths happen in US, Canada, UK and Australia yet these four countries consume 69% of the world’s medicinal opioids.

These figures show an appalling inequality of access to pain medications and highlight a serious gap that needs closing. However, this issue very rarely gets mentioned in UNAIDs reports and rhetoric.

Quality of life

It is arguable that the ‘end of aids’ rhetoric is not particularly helpful in advocating successfully for improved quality of life and support for people living with, and dying from HIV related conditions.

Of course we would like to say that hospice and palliative care services are no longer needed for HIV and AIDS because people are not living with and dying from AIDS and HIV related illness with uncontrolled pain and symptoms. But we know that they are, all over the world.

And, as funding and focus appears to be shifting away from this area, hospice and palliative care services continue to treat and care for people living with HIV, often struggling to find the resources they need to provide care free at the point of delivery, often outside the mainstream health system.

The harsh reality is that access to hospice and palliative care, including medications for pain treatment, remains patchy, including in countries where HIV prevalence is high.

In the three countries with the highest HIV prevalence rates worldwide – Swaziland, Botswana and Lesotho – Botswana and Lesotho only have isolated provision of hospice and palliative care services while Swaziland has more generalised provision but it is not integrated into the mainstream health services (WHO/WHPCA Global Atlas on Palliative Care at the End of Life).

Hospice and palliative care

So, on World AIDS Day, I remind those reading ehospice, that while the political and funding agenda may be shifting away from the HIV response, millions of people continue to live with, and die from, HIV related conditions and become HIV positive.

People living with HIV continue to need hospice and palliative care. Hospice and palliative care organisations worldwide continue to provide vital services for people living with HIV and their carers, providing critical clinical, social, psychological, legal and economic support.

We may hope for, and work towards the end of AIDS but we must not forget the continued need for hospice and palliative care and the continued work of the hospice and palliative care providers, often with limited resources.

So our message is this:

  • We want to see the gap closed to end HIV and AIDS by 2030.
  • We want to see NO people needing hospice and palliative care services because of HIV or HIV related conditions.
  • While we are on this journey, we MUST  NOT lose sight or focus of the needs of people who are living with HIV, of those who will become HIV positive.
  • People living with HIV and AIDS must have access to hospice and palliative care services, including pain medications. This gap needs closing too.

The HIV epidemic has not ended, the work of hospice and palliative care services for people living with HIV has not ended and people living with HIV continue to live with the condition. The rhetoric may not tell that story but we must.

On World AIDS Day, we encourage you all to watch the following short films: ‘We are positive’ by Positively UK and ‘Jethro’s story in Kenya’ by Human Rights Watch.