38.4 million people living with HIV and growing – But what’s does quality of life mean for them.
Today the All-Party Parliamentary Group HIV and AIDS publishes its report “ HIV and Quality of Life – What do we mean? And how to we achieve it?” during the HIV Outcomes World AIDS Day 2022 event, launch of HIV Outcomes Policy Asks.
Since the discovery of HIV at the beginning of the 1980s, it has been one of the greatest global health problems. HIV and AIDS places an increasing burden on the health of the population, and causes further socioeconomic problems for individuals, families, communities, and governments in many countries.
Thanks to significant improvements in scientific understanding, medical innovation and clinical management of HIV for many people in the developed world, HIV is now considered a manageable chronic condition. With increasing numbers of people with the condition living into older age than ever before, HIV is now recognised as one of the greatest health success stories in recent times.
In 2020 it is estimated by UNAIDS that 38.4 million people world wide are living with HIV, with 6.1 million people living without knowing their status. It is also estimated that three quarters of all people living with HIV have access to antiretroviral treatment, approximately 10 million people do not. Only half (52%) of children living with HIV have access to life-saving medicine, and the inequality in HIV treatment coverage between children and adults is increasing rather than narrowing.
The AIDS pandemic took a life every minute in 2021, with 650 000 AIDS-related deaths despite effective HIV treatment and tools to prevent, detect and treat opportunistic infections.
The following main measures should be introduced to make progress on global targets:
o People living with HIV are not a homogenous group; it is important that individual concerns and needs are considered when implementing measures and actions.
o Data collection should be improved to include a greater cross-section of society, including lesbian and bisexual women, transgender and non-binary communities, ethnic minority groups, people who use drugs and people who are homeless.
o Specific measures should be introduced to tackle areas of concern for people living with HIV such as mental health, social care, stigma and discrimination and education for healthcare professionals.
o Universal recognition and agreement on how we define quality of life for HIV
- alongside clear national target setting to drive improvements.
o Universal recognition and agreement on the tools that should be used and implemented to drive improvements in quality of life.
o Annual measurements to assess improvements on a population basis.
o Technology appraisal bodies must ensure that their appraisal methods consider the role of technological innovation in delivering improved Health Related Quality Of Life and Quality Of Life outcomes, so that their true value can be recognised and so that patients can continue to receive access to them.
o Adopt an integrated, outcomes-focused, and patient-centred approach to long-term HIV care.
o Combat stigma and discrimination within health systems.
Steve Brine MP Co Chair All Party Parliamentary Group HIV and AIDS
“We have come a long way in the past 40 years and with 2030 so close, now is the time to double our efforts to eliminating new transmissions of HIV, the stigma that surrounds HIV and to ensure the 38.4 million people living with HIV can live the same quality of life as those who don’t live with HIV.
As the response to ending AIDS and HIV continues into its fourth decade, our work is not just about prolonging the lives of people living with HIV. It is about ensuring that those lives are healthy, happy and fulfilled. Quality of life is not a ‘luxury’ or ‘optional extra’. It is a human right – one that is more important than ever. “
Rt Hon David Mundell MP Co Chair All Party Parliamentary Group HIV and AIDS
“Particular attention should be given to the needs of key populations. These are vulnerable or most-at-risk groups that may face specific challenges requiring targeted responses from policy makers and care providers.
Public health goals are not served by denying people their individual rights have been shown to block HIV service access and increase HIV risk.
We must reform these discriminatory laws if we are to win the fight against HIV.”
Jeff Lazarus - Barcelona Institute for Global Health (ISGlobal), Spain and HIV Outcomes Europe Co-Chair
“Whilst 2022 represented a landmark year for health-related quality of life among people living with HIV as it was included as an outcome in the new World Health Organisation 2022-30 Global Strategy for HIV, no indicator has been proposed to measure it.
Without institutionalised targets, health systems may not recognise the significance of reporting on health-related quality of life of people living with HIV. Governments should, therefore, determine how they will best gauge it and decide to do just that. I hope the UK will continue doing so, because it boasts the resources, knowledge and experience as a leader in the field.
I welcome this report with the desire that the many recommendations made will be implemented and serve beyond the borders of the four nations. The vision set out in the report underpins our current path towards a much-needed transformation of health systems into person-centred healthcare delivery models that promote optimal well-being.”
ENDs
Notes to Editor
The APPG put out a call for written evidence on 10th February 2021 and we received 23 submissions. This inquiry deals with Quality of life globally.
We understand that every country has a different health care system and therefore the recommendations will be generic that each country could adopt.
The APPG held three oral evidence session to hear from a wide range of organisations who are working on difference aspects of quality of life.
o 28.2 million people were accessing antiretroviral therapy as of 30 June 2021.
28.7 million people were accessing antiretroviral therapy as of 30 June 2021.
38.4 million people globally were living with HIV in 2021.
1.5 million people became newly infected with HIV in 2021.
650 000 people died from AIDS-related illnesses in 2021.
84.2 million people have become infected with HIV since the start of
the epidemic.40.1 million people have died from AIDS-related illnesses since the start of the epidemic.