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Case study: Sasha Goodman: Changing perceptions of HIV research

Patient Research Ambassadors are our public champions. They help promote health research in their local communities. This voluntary position is supported by our local engagement teams.

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Sasha answers our questions about her experience of being a Patient Research Ambassador

I’m 30 and I was born with HIV; I grew up very poorly and was only just able to survive it. Medication got a bit better in my teens. When I was 20, I lost my mum to HIV, Hepatitis B and Hepatitis C. I’m now probably the healthiest I’ve ever been since I’ve been on medication. I have two children who don’t have the condition. I’m a HIV activist for different charities and I’m helping the Milton Keynes clinic out to support other people with HIV.

How did you first hear about Patient Research Ambassadors?

I was referred as the ideal candidate for the role by the HIV doctor at Milton Keynes University Hospital. I’m quite a public person and I volunteer for lots of events, so that’s why he thought I would suit the role.

What made you decide to become a Patient Research Ambassador?

It sounded intriguing from the description I was given. It sounds like I can learn something from this and make a difference for other people with HIV and help change attitudes towards it through promoting research.  

Why do you think NHS research is important?

I grew up as a volunteer for new HIV treatments. The biggest problem we have now is HIV and ageing. There are becoming so many co-infections for people with HIV. We’re more at risk of conditions such as HIV-related dementia and diabetes, because one of the side effects of our medication is that we don’t get the nutrients that we should do. I want to look into that, because treatments will come further forward through research.

What activities have you been involved with?

I volunteered for a campaign to change the public’s perception of HIV. I was a speaker for the launch of this campaign. I’ve also been involved in a catwalk about empowering women with HIV. I want to do more in this role to promote HIV research and find out why people are being newly diagnosed and to encourage more people to get tested.

What would you say to others who are considering getting involved in research?

Research is all about learning and finding out how to best treat conditions, which I would love to do. People need to volunteer for research for medical progress to be made.