In January 2006, the Government launched its consultation on reform of the welfare benefits system: A New Deal for Welfare – Empowering People to Work. There are a number of documents and links on the buttons adjacent setting out various responses and information current available relating to the needs of people living with HIV. We have focussed here on the proposals relating to Incapacity Benefit (IB) reform. However, we recognise that people living with HIV may also be lone parents and older people. Many of the responses of other organisations with expertise in these areas will apply to people living with HIV who retain membership of these groups. We have also concentrated on broader issues of policy, recognising that other organisations are better placed to comment on the detailed technicalities.

There are currently around 58,300 people living with HIV in the UK, of which approximately a third are undiagnosed. The numbers of people infected continues to rise yearly.The majority of people living with HIV are of working age. Due to developments in HIV treatment and care, many people living with HIV enjoy productive working lives that do not require the support of the benefits system. However, it remains the case that others cannot fully benefit from the advances in medical treatment, or experience debilitating side effects (either in the short or longer-term) that can lead to periods of ill health and incapacity. As well as physical limitations, mental health problems can also manifest, related to the stresses of living with a long-term and highly stigmatised condition.

In some cases, physical and mental health problems are such that people living with HIV are unable to work and become eligible for disability benefits such as IB. The status of HIV as a disability was formalised by the Disability Discrimination Act (DDA) 2005. This stated that HIV automatically met the definition of a disability for the purposes of the Act from the point of diagnosis.

It is difficult to quantify the numbers of people living with HIV in receipt of benefits. However, poverty is an increasingly documented problem. In December 2005, the charity Cruisaid, which administers an HIV hardship fund, estimated that over a third of people living with HIV in the UK had experienced extreme poverty. Cruisaid estimated that it had helped 26,346 of the 74,977 people who had been diagnosed with HIV in the UK to that period. It further reported that the average income of applicants fell from £93 to £54 per week over a five-year period.As well as health problems and poverty, people living with HIV may also face discrimination, which acts as a barrier to employment. This can be related to prejudice against social groups most affected by HIV in the UK, or erroneous fears about the risk of HIV transmission in the workplace. Although unlawful according to the DDA (1995, 2005), cases of discrimination in employment continue to come to light.

It is important not to paint an entirely bleak picture. Many people living with HIV will not encounter the difficulties described. However, any informed debate about welfare benefits reform as it affects people living with HIV must acknowledge these issues.