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The Work and Pensions Secretary, Liz Kendall, has announced the Government’s plan to ‘shake up’ the welfare system. If the proposals go through as they are, many people living with HIV will be put in a more vulnerable situation – the PIP support is critical to help them to stay on treatment and have the quality of life that everyone deserves.
Thousands of people living with HIV rely on the Personal Independence Payment (PIP) – a welfare benefit meant to support people with long term conditions to overcome barriers they face with daily living activities. While it might be the Government’s intention to use these cuts to motivate more people into work, restricting PIP and other benefits will only make it more difficult for people living with HIV to prioritise, seek, and stay in employment.
A person living with HIV who experiences fluctuating conditions has to exert more time, energy and expenses to complete everyday tasks and maintain their health. This leaves them with less time and resources to focus on finding and maintaining employment. And while antiretroviral treatment has been free for everyone in England for over a decade now, the costs that come from living with HIV continue to be a significant source of stress and challenge for many people with fewer than half (48.6%) of the people living with HIV surveyed for the 2022 Positive Voices report saying they always had enough money to meet their basic needs.
When coproducing a response to the previous Government’s PIP Green Paper, National AIDS Trust heard some of the ways peer advisers and other community members spent their PIP payment. The reality is, for many people living with HIV, the payment goes towards covering non-medical essentials: nutritious food, additional gas and electricity costs, travel costs for appointments and accessing peer support. People also told us they spent PIP payments on mobility aids, supplements and house adaptation and that even people with jobs needed additional support to cover essential costs. The rapidly increasing cost of living has forced many people living with HIV to make difficult financial decisions, even when they do receive PIP, so these proposals are causing anxiety and concern for people about how they will manage in the future.
The financial stability that PIP provides for many people living with HIV is critical to their ability to adhere to treatment and access HIV care. The ability to get to appointments and afford personal assistance to remind you to take medication can be the difference between living well with HIV and experiencing poor mental and physical health. By raising the minimum number of points needed when scoring for PIP eligibility, the Government will be not taking into account the fluctuating nature of how HIV is experienced and the impact it has.
While many disability charities like National AIDS Trust welcome promises of long term PIP reform and increasing opportunities for face to face assessments, we have serious concerns that these proposals if implemented will be detrimental to the health of millions, and go counter to the Government’s aim of achieving zero new HIV transmissions and improved quality of life for people living with HIV by 2030.
National AIDS Trust will continue to call for an equitable and fair welfare system that properly understands the true experience of what it is like to live with HIV and recognises the need for appropriate support for people with disabilities to ensure that they have the same quality of life as the general population.