Keith Valentine - Fighting for Sight

In a career in journalism, there have been too many occasions when I’ve had to stifle a yawn midway through an interview, desperate for the tech CEO or politician or economic analyst in front of me to say something pithy and interesting. But every now and then I have met someone who breaks free of their media training straitjacket and lets their passion and their personality shine through.

So it was the other day with a charity boss Keith Valentine, whose fury at how the world worked and determination to change it threatened to burst the screen of my laptop as we met on a Zoom call. We had set up the call after Keith had read my post about the rise in myopia - I think eye conditions are an underreported area of healthcare and I am looking for more stories about them.

Keith runs a small charity called Fight for Sight, which aims to be a catalyst for research into preventing and treating sight loss, maintaining that it is chronically underfunded. He immediately launched into a diatribe about what he sees as the main issue - the medical establishment and the regulators are focused on a very narrow view of sight loss and how it should be treated, one based on how far down a vision chart a patient can see.

Keith Valentine with his guide dog Dottie

I should explain here that Keith has a condition called retinitis pigmentosa, which means he has lost most of his sight. “It's an inherited retinal degenerative disease…..I'm from multiple generations of people that go blind. My mum's blind, my daughter will go blind.”

He says regulators assessing the efficacy of treatment don’t look at visual function, just visual acuity. Asked to explain the difference, he says visual acuity is based on “how many lines you can see on a chart.” He can’t see an eye chart but he can see the light coming from it: “So visual function is all the things that your eyes are doing in order to absorb the information that's coming through. And for people with degenerative conditions past a certain point, you haven't got any visual acuity, but you still have visual function.”

He gives me an example of an instance where he says this attitude by the regulators did real harm. The charity had helped to fund a radical gene therapy treatment for choroideremia, a rare degenerative condition affecting mostly men who end up blind in their forties, and it appeared to be very promising. Joe Pepper, a Fight for Sight employee who took part in a clinical trial, was able, in Keith Valentine’s words, “to put away his white stick” - his vision actually improved.

Others on the trial saw no improvement but also no worsening in their condition. But, says Keith, the gene therapy was never given approval because the regulators did not think bringing a degenerative disease to a halt was enough - they wanted evidence in the form of eye tests that it actually put the condition into reverse.

“It feels to me,” he says,”that what the environment is saying is that actually, below a certain level of sight, your sight doesn't matter.”

Unsurprisingly, he feels particularly strongly about this apparent abandonment of people with the most serious eye conditions when it comes to his family. It is not inevitable that retinitis pigmentosa is passed on from parent to child - and when a child is free of the condition so will their children be. But for the children of people like Keith that brings with it what he calls the cruelty of hope.

With mounting fury he tells the story of how his daughter was told in her early twenties during the pandemic that she did have the condition. “She overheard the people working in the consultant’s clinic, talking about her file and how they were going to tell her.” Then when the moment cam to tell her she was going to go blind “they said there's nothing we can do for you, and they discharged her.”

Whatever the exact circumstances of his daughter’s appointment at that clinic, it is this last point - that the system gives up on people with “incurable” degenerative conditions - which is so striking. Keith himself draws the parallel with my condition: “It's almost - like in Parkinson's - once you get to a certain point in the condition, well, that's you done.”

But Keith Valentine isn’t giving up, indeed one thing gives him hope - technology. He has been trying out smart glasses with AI built in and says they are amazing, offering up possibilities such as having the person in front of him recognised or telling him that a taxi that is approaching has its “for hire” sign on, so he can step forward and hail it. “That's the most important thing in tech that's happened since the iPhone,” he says - and he means important for people with a visual impairment for whom the Apple’s phone was a huge step forward.

Summing up, he tells me that the charity is both ambitious and pragmatic - wanting to explore cures for incurable sight conditions, while helping people with those conditions to live their best lives:

“The point of our organisation is to do something really, really bloody simple - save sight, change lives. Can you stop it happening? Well, let's figure out if we can.”

Changing the popular - and indeed medical - view of any long-term condition for which there is no cure is a tough business. But I can’t think of a better person to lead the fight for sight than Keith Valentine.