In the 1980s, the AIDS epidemic burst onto the public consciousness. The disease was new and, at the time, invariably lethal. In my work as a broadcast journalist in the early 90’s, I recall the fear and stigma that accompanied the disease.
More than 30 million people have died from AIDS over the past 40 years, but I am pleased to say the situation is dramatically different today. Antiretroviral therapies, advances in diagnostics and other risk reduction measures have, for three decades now, transformed survival rates for people with HIV.
Science has helped to take much of the fear out of a once-dreaded disease and to deliver a new era in which HIV is no longer a death sentence. As a result, people living with HIV can now expect to live as long as the wider population. This allows to now focus on ensuring that they can enjoy a full and sustainable quality of life.
This shift demands a matching policy response at regional, national and European level. We need to put the spotlight on the physical and mental wellbeing of people with HIV, to take concrete steps to end stigma and discrimination and to share good practice on integrated and person-centred care.
“We need to put the spotlight on the physical and mental wellbeing of people with HIV, to take concrete steps to end stigma and discrimination”
To do this, the European Parliament’s Environment, Public Health and Food Safety Committee backed my proposal to the European commission for an in-depth study on effective practices in Europe.
The report will inform policy discussions by highlighting policy gaps that Member States can correct by learning from one another. This work will put people at the centre of the policy conversation and provide a basis for improving lives.
As policymakers, we are well aware that what gets measured, gets done. That is why I was pleased to host an HIV Outcomes event on World AIDS Day on 1 December, where the spotlight was on health-related quality of life.
Listening to stakeholders, including HIV experts and civil society representatives, I am confident that Europe can play a meaningful leadership role in the next chapter of HIV policymaking.
This will be driven by the new Global AIDS Strategy adopted at the UN General Assembly in June. With strong backing from the EU and Member States, it sets out a bold vision for a world without AIDS. Crucially, it is built around concrete targets for 2025 which include a strong focus on health-related quality of life.
“We should be firm in our condemnation of governments that are taking backward steps on human rights in areas that directly affect people living with HIV”
When Member States submit their reports to the Joint United Nations Programme on HIV and AIDS (UNAIDS) in the spring - the first such report under the new Global AIDS Monitoring Guidelines - I expect to see significant variation between and within countries.
If we are to improve the lives of people living with HIV, a vital part of the challenge will be to tackle stigma and discrimination. We must be frank about the need to address discriminatory practices which remain on the statute books at regional and national level across Europe.
More than that, we should be firm in our condemnation of governments that are taking backward steps on human rights in areas that directly affect people living with HIV. These include efforts to erase or exclude LGBTIQ communities from public discourse, and policies targeting groups such as migrant communities, sex workers, and drug users who are at elevated risk of HIV.
Vulnerable populations need support, not condemnation.
While there is still much work to do, Europe is well-placed to write the next chapter in the story of humanity’s triumph over HIV. By working with people living with HIV, by sharing best practices and by collecting data on health-related quality of life, we can build on the tremendous progress we have witnessed since the first AIDS cases were reported.