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This time last year the Government was introducing the Universal Credit and Personal Independence Payment Bill. Included in the proposed legislation were harsh reforms and drastic cuts to the social security system. The proposals would have made it harder for many disabled people to access support, leaving many people financially vulnerable. The Bill was stopped and an independent review called, with Sir Stephen Timms announced as the lead for an independent review of whether the system for Personal Independence Payments (PIP) is fit for purpose.
For people living with HIV who need to access the benefits system, PIP continues to play an important role in helping them manage the hidden additional costs and financial anxiety associated with living with a long-term health condition.
People living with HIV can live happy healthy lives with antiretroviral treatment but they are not exempt from symptoms including fatigue, poor mental health, cognitive impairment, nerve pain. These symptoms can get worse as people age, creating real burden on their mental and physical health, which can impact their ability to work and their financial stability.
Even though HIV treatment is free on the NHS, there are costs to managing a lifelong conditions – travel to appointments, carers, nutritious food, therapists and mobility aids all cost money, and access to them can impact how well people are able to manage their HIV and adhere to treatment.
Because of our commitment to make sure people living with HIV have better quality of life, National AIDS Trust submitted evidence to the Timms Review co-developed with people living with HIV who have experience of applying for PIP. Our response also reflected interviews we had with HIV support workers who regularly help people through the assessment process.
The main concern for people living with HIV who are assessed for PIP is how it doesn’t take into account fluctuating symptoms. Across many conditions, people with fluctuating symptoms are seen as ‘requiring less support’ when being assessed because they don’t experience the worst of their symptoms everyday. The reality is that these symptoms are just as severe and the burden of planning your life around fluctuating symptoms is still exhausting for people living with HIV. The Timms Review released its interim report which agreed that PIP assessments are less likely to adequately capture the needs of people with fluctuating conditions.
There also continues to be fear from people living with HIV about cuts to disability benefit spending, including plans to require claimants to score at least four points in a single daily living activity to have successful claim. This was especially concerning after data in 2025 estimated that just over half working-age PIP claimants living with HIV could be at risk of losing some or all of their support under the proposed changes. In our evidence we make clear that an effective benefits system must make sure people are not excluded from support simply because just their needs do not fit neatly within a single assessment measure.
We have also contributed to joint evidence through the Disability Benefits Consortium. This collaborative approach is not only for solidarity across civil society – it reflects the reality that many people living with HIV who claim PIP are not applying solely because of HIV. Working together with disability organisations helps strengthen calls for a fairer benefits system while ensuring the specific experiences of people living with HIV are embedded in every step.
The Timms Review will help shape the future of disability benefits, and impactful reform can only happen if the lived experiences of people with disabilities steers the Government’s decision-making on PIP. National AIDS Trust will continue to work with people living with HIV as we advocate for a fit for purpose welfare system and champion the recommendations that lets people living with HIV thrive
Improving quality of life for people living with HIV is central to the HIV Action Plan but achieving that goal requires action across Government. If the Government is serious about improving quality of life and reducing health inequalities, every department must play its part in ensuring people living with HIV have the support they need to remain healthy, financially secure and able to participate fully in society.