UK: All-Party Parliamentary Group on HIV/AIDS inquiry into Quality of Life and HIV with a global focus

The All-Party Parliamentary Group on HIV/AIDS (APPG) is putting out a call for written evidence on Quality of Life and HIV.

2021 marks the 40th anniversary since the first cases of AIDS were reported. HIV is no longer necessarily a death sentence and substantial progress has been made since 1981. However, people living with HIV still do not enjoy the same health-related quality of life (HRQoL) as the rest of the population.

To date, the HIV pandemic has resulted in an estimated 75 million adults, adolescents and children acquiring HIV and has claimed the lives of over 32 million people worldwide. Today, with access to the right interventions, HIV infection can be suppressed, making it a manageable long-term condition rather than a fatal disease.

However, even with effective viral suppression people living with HIV experience poorer HRQoL than the rest of the population. Far from the WHO definition of health being a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity, people living with HIV still find themselves facing stigma and discrimination along with the challenge of dealing with comorbidities and healthy ageing.

We would like to hear from as many organisations and people across the globe on this issue. If you can share this email with your stakeholders that would be much appreciated.

We know that quality of life for someone living with HIV will be different in every corner of the world. We hope this report will have recommendations that will better the quality of life of someone living with HIV beyond.

When answering the call for evidence please be advised that all questions can relate to heterosexual, gay and bisexual men, msm, women, trans, non-binary, gender diverse people, older people, children and young people, people who use drugs and formerly used drugs, people from diverse religious backgrounds and migrants (refugees and asylum seekers).

The APPG does not expect you to answer all questions only those you feel you can.

Please use the questions below to inform your response and send to Mark Lewis at  by 5pm 4th March 2022.

The call for evidence will look at the following areas:

What do we mean by Quality of Life for those people living with HIV?

• Humanize the issue

What are the key determinants for Quality of Life for people living with and affected by HIV?

How do we ensure the inclusion of Quality of Life and Health Related Quality of Life as aims/objectives/targets/measures for issues impacting people living with HIV beyond viral suppression?

How do we measure Quality of Life and Health Related Quality of Life to help understand the care response to HIV and assess gaps in the Quality of Life and Health Related Quality of Life of people living with HIV?

How do we measure and record the impact of stigma and discrimination on people living with HIV?

What is the impact of stigma and discrimination on people living with HIV?

How can governments help faith leaders to join in the fight against HIV stigma and discrimination?

How can people living with HIV who are members of faith communities be supported to reduce HIV stigma in the faith communities to which they belong?

How to best include people living with HIV as an integral part of all “Ending the Epidemic” approaches?

How to involve the emerging communities and the changing faces of HIV? How can we support these emerging communities, those who are coming forward with their own HIV lived experience?

Why is gender equity an important aspect of Quality of Life?

Why is ending LGBTQ+ discrimination an important aspect of Quality of Life?

Why is ending discrimination towards sex workers an important aspect of Quality of Life?

Why is ending discrimination against people who use drugs an important aspect of Quality of Life?

Why is ending discrimination against migrants an important aspect of Quality of Life?

What are the gender-specific inequalities that affect women living with HIV?

How do development actors, including UNAIDS and the Global Fund, advance equality and equity of access to healthcare?

• Punitive Laws

What impact would ending punitive laws against the lgbt+ community, women, sex workers and drug users have in helping members of those communities have a good quality of life.

How best could we map legal discriminatory practices and repercussions for people living with HIV?

How do we end those punitive laws?

What role do the UN, EU, African Union, Commonwealth and other development actors including the Global Fund have in ending these punitive laws?

How do we engage with jurisdictions with different approaches to punitive laws?

How can we hold those countries and organisations who discriminate against people living with HIV accountable? How can this apply to virtual spaces especially in light of the pandemic?

What outcomes are needed from the International LGBTQ+ “ Safe To Be Me” Conference to advance the HIV response and combat the punitive laws that fuel the epidemic?

How can UK Overseas Development Aid and The Foreign, Commonwealth & Development Office diplomacy be best used to challenge punitive laws globally?

• Access to healthcare / Community systems

How do stigma and discrimination impact on access to healthcare for people living with HIV?

How do we ensure and improve access to healthcare?

How do we ensure retention in healthcare?

What works?  What doesn’t work?

How do community-led initiatives improve HIV health outcomes?

How can integrating clinical and social pathways enhance HIV outcomes?

How can HIV care cater for the mental health needs of PLHIV?

How can we best track and measure the funding of HIV within integrated HIV-SHRH and broader health spending for bilateral, multilateral and national government programmes?

Should Quality of Life be used a central framework in global health policy for ensuring access to and funding for quality HIV services; integrating HIV and the needs of people living with and affected by HIV with SHRH and broader physical and mental health; and tackling structural barriers by advancing the wider social, cultural and economic rights of people living with and affected by HIV?

• Investment

What kind of investment does there need to be in health professional education and training to reduce stigma and discrimination in health settings and to address the complex psychological burdens that living with HIV can present?

What kind of investment does there need to be in developing Quality of Life and Health Related Quality of Life tools and measures such as: PROMs and PREMs as well as national health and well-being surveys to fully assess the Quality of Life of people living with HIV?

Literature on Quality of Life shows that to enhance Quality of Life requires attention to three core components: prevention, care, support and treatment for HIV and co- infections; prevention, care, support and treatment for non-HIV- specific physical and mental health issues; well-being and wider social, cultural and economic rights. Given this, how have people living with HIV’s Quality of Life been affected by the Overseas Development Aid cuts announced by the UK Government in 2021?

• UNAIDS targets beyond viral suppression

Who should be the national actors accountable to monitor progress against new UNAIDS 10/10/10 targets?
How can we achieve the new UNAIDS targets?

How do we better improve the understanding and knowledge of HIV in health care settings?

How do we better improve the understanding and knowledge of HIV in the general public?

What are the new needs and issues that we must address to better health related quality of life of those living with HIV?

If we are to make progress on this, what is the main thing Governments need to do?

Do we need universal metrics on measuring quality of life for those living with HIV?

Do we need metrics embedded in national and regional responses to measure the quality of life of those living with HIV?

How can other global stakeholders meaningfully include Quality of Life related approaches and commitments in global and national HIV and health policy and programming?

What are key opportunities for advancing the holistic quality of life approach in the implementation plans and activities of these strategies and through specific events and processes in 2022?

• Pandemic Preparedness

With the HIV and COVID-19 responses both seeing stark treatment inequity, what learning should we take for future pandemic preparedness and response?

Incidence of Covid and Long Covid within HIV communities?
How better to understand the interrelationship between Covid and HIV?

What is the Impact of COVID-19 on the HIV response and what are the interventions that are proven effective to mitigate against any damage?

How have responses to COVID-19 and pandemic preparedness built on the infrastructure created for the HIV response and wider interventions like the Global Fund?

Impact of Long Covid on physical health, mental health, access to treatment and care for people living with HIV

How do we prepare the system for innovation and rapid adoption of new technologies/treatments (as seen with the Covid vaccination programme)?

Do we need to build inclusive telemedicine and telehealth approaches?

COVID-19 has underlined the critical importance of supporting people holistically from a person- and community-centred approach with strong resourced community-led responses – fostering greater connectivity between health and broader social and economic needs in times of emergency. How can we build on this and ensure that plans for more effective pandemic preparedness consider Quality of Life?

What role should the HIV sector and organisations play in pandemic preparedness and response?