Today is World Aids Day and is a day that I always mark as important and one which many organisations dealing with health and social care also mark, as well as those organisations working with those communities particularly affected by the disease - LGBT people, the African community and drug users. First the good news - the numbers affected by HIV/AIDS in the UK are going down after a number of years when the UK had one of the highest rates of infection in the EU. But the disease continues to rage in Africa and Eastern Europe in particular and many of those affected still do not have recourse to treatment because of the non-availability of cheap generic drugs and medical care.
But I want to be particularly personal now about this illness and how it is affecting many people who have been living with HIV for many years here in the UK. Tonight I am meeting a friend who is a gay man who has been living with the virus for 24 years. He has been very ill in the past and thanks to a support network of organisations such as the Positive Place in South London (where I was a trustee from 1998 to 2001) and which tragically closed down recently, he has managed to keep going. He is in receipt of DLA (Disability Living Allowance) and suffered scarring of his brain as a result of the illness.
Over a year ago the DWP in its wisdom decided to review the cases of hundreds of people who were HIV+ and who had been given 6 months to live in the 90s when the disease was untreatable. Many of these people had lost everything - homes, life insurance policies, jobs etc when they were ill and their only lifeline was DLA. They also suffered incredible psychological stress believing that they were going to die. The new drugs only came online in the mid 90s and it was uncertain for several years as to how effective they would be. Many of them had terrible side effects - hallucinations, paranoia, incontinence, dizziness etc and many patients were forced to change drug regimes many times.
Suddenly last year the DWP decided to review all of these people's cases - some were in their 60s and 70s. Many had their DLA reduced or removed. On what basis was this done? HIV is not curable and many of these people had no other income. Are they able to return to work with variable states of health and having been out of the labour market for years. None of this was of concern to the bureaucrats of the DWP and many have been plunged into poverty, including my friend. The latest development is that he is being called to an interview by his local council (Lewisham) about his Freedom Pass, which allows him some measure of mobility in using public transport. The reason, of course, is that because his DLA has been reduced this has given the green light to the Council money savers to try and remove his pass as well.
So for many of these people living long term with HIV and with all of the former social networks gone (work, HIV support groups etc) they are expected to disappear from the scene, to be housebound and to live in penury. This is their reward for having lived beyond their 'sell by date' and for struggling for years against illness and depression. It is not surprising that some of the survivors I have known have committed suicide or had breakdowns. This caring sharing country regards them as being excess to requirments and a burden on the system. Not much different really to what the survivors of World War 1 discovered when they returned to a country which they had bene promised would be "a land fit for heroes". What they found instead was poverty, disabiliy and neglect.
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