Our society and our healthcare system must be prepared for a disease that no longer belongs to young people alone
With World AIDS Day having taken place this month, I have been pondering the subject of living with HIV in 2013. As is (or at least should be) common knowledge, a diagnosis of HIV is no longer considered a ‘death sentence’, but is viewed more as a chronic, but manageable illness. With the advent of new and improved highly active antiretroviral therapy (HAART), people are able to live near-full and healthy lives with much fewer side effects. These statements, however, are limited to the UK and USA, and I make the assumption that those diagnosed are able to access these life-saving drugs.
HIV-related mortality peaked in the early 1990s, with almost half of new diagnoses dying within a very short period of time – the average life expectancy being approximately two years. Most people that were diagnosed became incredibly sick, with little medical therapy to help counter the effects of the disease. However, death rates from AIDS have been falling across Europe since 1995, when HAART became readily available. This had a dramatic impact on death rates, reducing them to less than a fifth of their previous levels by 1998.
As we continue to observe fewer deaths from AIDS, the number of people living with HIV is steadily rising. It is estimated that there are between 76,000 and 120,000 people living with HIV in the UK. This means that HIV prevalence has more than doubled since 1994. There are reports that almost a quarter of all people with HIV are aged 50 and older. Medicine is enabling us all to live much longer lives, including people with HIV. What we now see is people dying with HIV not because of HIV.
This poses deep questions about the preparedness of future healthcare systems, and society more broadly, when dealing with HIV-positive patients: how should our healthcare systems respond to these changing dynamics, and should we be formulating different models of care?; indeed, how are ethical questions concerning dying and terminal care going to manifest for patients with HIV? Unfortunately it seems that the majority of healthcare professionals do not feel prepared for the evolving realities.
Despite vast improvements in scientific understanding and treatments over the past twenty years, we have yet to see such progress in social attitudes. A recent study suggests nearly 70 per cent of people feel that stigma around HIV is still a problem in the UK. This stigma continues to rear its ugly head across the western world.
A story which perfectly demonstrates the severity of the situation, is that of Reverend Dr. Robert Franke, a retired university provost and minister in his mid-70s. Rev. Dr. Franke moved into an assisted living facility in Arkansas, USA, to be closer to his daughter when he became unable to live independently. Within 24 hours however, he was evicted from the facility because he has HIV.
Despite respecting the facility’s demands, he and his family took legal action. He took a stand for all the people who have felt the weight of overt discrimination silence their legitimate protests and sense of alienation. Recent reports suggest that people living with HIV aged over 50 are further stigmatised because of their age, with prevailing perceptions that HIV is still a disease of young people. This is the first generation to age with HIV and such apparent stigma leaves people feeling isolated and afraid.
Healthcare professionals are situated at the forefront of social views towards HIV, and play a crucial role in reflecting or challenging sociocultural attitudes. While one would hope that professionals within healthcare environments reflect an ethos of non-discrimination and respect, ignorance still exists. Some healthcare workers hold negative connotations of people living with HIV because there are fundamental shortfalls in knowledge in the sector per se.
Charities such as Streaming Well and the Terrence Higgins Trust are required to deliver vital information and provide much-needed educational tools to such professionals. These charities are working hard to debunk the deeply-rooted myths among those who are meant to be at the forefront of medical knowledge and leading the way to diminish such beliefs.
In the UK, we will continue to see a growing ageing population with residential and nursing home care needs, a number of whom will have HIV. It is our responsibility to pave the way for justice and to stamp out HIV discrimination. Although we have robust specialised care systems in place for people with HIV and AIDS, it is our generation’s responsibility to ensure that we all do what we can for those affected, including their loved ones, regardless of where they receive their care. They deserve to age and live their lives without fearing those in whom they place their trust, those who should be providing the safe, fair and caring environment in which they come to for support.
Image from: http://blogs.voanews.com/photos/files/2012/02/reuters_india_valentines_day_14Feb12-878x517.jpg