We are now in the fourth decade of the HIV epidemic: giant advancements in medical treatment mean that people living with the virus, like myself, can expect to live to old age if we have access to treatment, support and care, and we are treated with dignity and respect. I would have never imagined this to be possible when I was diagnosed in the late 90’s, a few days before my 30th birthday. As much as I rejoice that I will soon be turning 50, I still cannot say that the future is bright for myself and the other 107,000 people estimated to be living with HIV in the UK.
So what are the main concerns of those of us living with HIV? Well, as a starter, many of us are living with multiple conditions, such as diabetes, cardiovascular disease, hepatitis C, renal complications and mental health problems to name a few. This is a challenge as we have to navigate through several doctors and services to maintain our health. We are the first generation to take a potent cocktail of antiretroviral (ARV) medication over decades. The combined effect of medications and having the virus in our bodies for a long time is still not fully known. However, there is definitely a link between HIV, long-term ARV use, ageing and developing other conditions. So we need to access care for many of those issues from different places, often locally, from our GPs, on top of visiting the HIV clinic. This can make our lives very complicated and filled with anxieties, as we have to move between several doctors, ensuring that they all communicate with each other, and that the medications we are prescribed don’t interact.
To enable us to make the best decisions in this complex landscape, access to peer support, guidance and advice from others who have faced similar situations is essential. Peer support can act as the glue that joins up the different issues we face and services we need to access. NHS guidelines recommend that as patients we should be involved in all decisions about our health. However this is not easy – we need to have clear, accessible information in order to make informed choices, as well as to develop a good level of confidence to make our views heard, as many of us find speaking to doctors intimidating. There is good evidence that peer support can increase understanding of HIV and give people the confidence to better manage and improve their health and wellbeing. I find the fact that it is still unclear who is responsible for funding peer support at local level incredibly worrying.
Another major concern for people living with HIV is the cuts to health budgets and the consequence on access to medications. There is real anxiety that our hospitals will not be able to purchase the best and least toxic HIV medications, as recommended by the British HIV Association (BHIVA) guidelines, but will have to make their decisions on economic savings, rather than what is best for our health. Another concern which can have an impact on the quality of care we receive is that research in new HIV drugs is slowing down, and pharmaceutical companies are moving away from research about HIV into more lucrative diseases.
Moreover, people living with HIV have felt very heavily the impact of the austerity measures that have characterised the UK for the past five years, especially the reforms of welfare support. Just through the day-to-day work we do at Positively UK, we have witnessed a huge increase in people needing emergency financial support, benefit advice, referral to food banks or who are homeless. We know that there are pockets of incredible poverty, and disadvantage. A report byCounterpoint Policy Alliance (2014) highlighting the impact of welfare reform on people living with HIV in England showed that older gay men and women from BME communities are among the hardest hit.
Finally, as people with HIV, we still have to face high levels of stigma and discrimination, sometimes even when accessing health services. Stigma in our communities means that many people still fear talking about HIV with family and friends. Many experience great isolation linked to anxiety and depression, and this has a profound impact on health and wellbeing. Isolation, lack of disclosure of HIV status and poor mental health are linked into difficulties adhering to medications, and can lead to HIV treatments being less effective.
So, despite the advances, it is definitely not a bright picture. What can be done at local level? I think three things are extremely important: firstly increasing HIV knowledge among GPs and other local health and social care providers, secondly, ensuring peer support is funded so that people can have the advice and guidance to make informed choices about their health, overcome isolation and develop the confidence and skills to communicate effectively with doctors; finally much more needs to be done aroundstigma and discrimination.
In four decades of the HIV epidemic we have never had a major campaign that directly addresses HIV stigma in the UK. Stigma and silence around HIV mean that many of us still live under a dark shadow that deeply impacts on our mental and physical health. Fear of HIV related stigma and discrimination make some of us very anxious about accessing services outside the HIV clinic. Stigma translates into incredibly high levels of gender based violence for women living with HIV. Moreover silence and ignorance about this virus make people more vulnerable to acquiring it, and lead to people avoiding testing and being diagnosed too late, with huge consequences for their own health, and at higher price for our health budgets.
As people living with HIV at Positively UK we have created a campaign to increase our voice and visibility under hash tag #WeArePositive. We have produced a short film in which people with HIV and our friends talk openly about the myths and the reality of living with HIV. Increasing the visibility of people with HIV and dispelling ignorance is obviously a powerful step to overcome stigma: however, we cannot do, and we should not do, this by ourselves. An anti-stigma campaign, at local level, in our communities, in our local health facilities, in our schools, is something we urgently need.
This article was originally published on Medfash Ebulletin: http://www.medfash.org.uk/efeature