How can I access NewFill while not living in London?
18 May 2022. Related: Access to treatment, All topics, Living with HIV long-term, Support.
I’ve got a good friend who is HIV positive who doesn’t have great access to the internet.
He’s been living with HIV for several decades, and used to access NewFill treatments for his facial lipoatrophy. He’s now moved away from London and his current HIV specialist team are not really concerned about his lipoatrophy or the impact it’s having on his quality of life and self image.
He could possibly pay privately for treatment, but doesn’t know where to begin. He lives a 4 hour drive from London and is on a low income.
Can he pressure his local NHS to provide NewFill or something similar?
Hi, how are you and your friend doing?
NewFill clinics in the UK are not common. There are 4 that we are aware of at i-base (not to say there are not more). There are 2 in London, and the other 2 in Brighton and Manchester.
The two in London are I think coordinated by the Chelsea and Westminster Hospital, or at least they work collaboratively. Is this where your friend had access to NewFill previously?
NewFill is probably accessed much less than it should be. It should still be available regardless of where you are in the UK.
As you have mentioned that your friend is having difficulty with their local trust (even though they should be offering support), there is the option to self-refer for their care to one of the above-mentioned clinics. In some instances, this can also be accessed via a GP and this may be a suitable avenue for your friend to explore.
Accessing NewFill privately is difficult. While there may be people who offer the treatment, NewFill requires experienced practitioners with an understanding of how HIV has caused lipoatrophy. This is in part due to requiring greater volumes of treatment and this is not commonly practised in the private sector due to how specialist this is.
Private NewFill services that are specific to HIV are unlikely to still be running due to COVID-19. NHS services closed during COVID but are now opening again. A major difficulty is that NHS clinics are coping with a COVID backlog, so there is a wait, but it is best to get on this list as soon as possible.
As for putting pressure on your local clinic, this is important. The access should be from any point in the UK as this is a corrective procedure from early ART. However due to the difficulty and possible barriers, it would be best to self-refer to a known waiting list to ensure treatment. Then to also pressure the local clinic alongside.
At one point, New-Fill was commissioned by London Commissioners to make sure that anyone in London could access New-Fill. This London-wide service is still available, although i-Base still hears of people who are not being told this by their doctor,
We have heard that some GPs can be persuaded to refer to New-Fill services. This is possible because it is a higher cost referral and covered by a differenet centralised budget. This was a while ago though.
Josh, you are a wealth of information. My friend will now know how he can advocate for what he needs, thank you so much!