Rare Retinal Disease

Edward Argar Excerpts

Thursday 23rd January 2025 Westminster Hall

[Edward Argar (Melton and Syston) (Con)]

It is a pleasure to serve under your chairmanship, Dame Siobhain, and to do so debating a health matter, as we have spoken many times in the past about health issues. I am very grateful to the hon. Member for Strangford (Jim Shannon), who I call my friend, for bringing forward this debate.

I am equally grateful for the opportunity to serve opposite the Minister. She and I have served opposite one another on many occasions in the past—previously with me on the Government side and her on the Opposition side, but I am getting used to this side of the Chamber now. It is encouraging that she is responding because she engages with these debates and gives genuine answers. The debate will be the better for her being the Minister.

The hon. Member for Strangford has brought forward a hugely important debate, as he so often does. Many important issues rarely get brought before the House, yet we are the poorer for that. This debate might not otherwise have been tabled, but it is right that we debate the issue. I pay tribute to the hon. Member for Battersea (Marsha De Cordova), who is not in the Chamber but has done a lot in the House to highlight the issue in her work with the APPG—it would be wrong not to recognise that in this debate. I also pay tribute to the Royal National Institute of Blind People for its work and to all those who have contributed to raising awareness.

Before I became a Minister in 2018, I was the vice-chairman of the APPG on eye health and visual impairment, so I took an interest in this important issue back then, and it crossed my radar on a number of occasions when I was Health Minister. As the hon. Member for Strangford and the hon. Member for Leicester South (Shockat Adam) set out, while individual rare conditions may be exactly that—they occur rarely, with few people getting them—collectively, rare conditions account for a significant number of the conditions that individuals in this country have.

The hon. Member for Leicester South brought his background and knowledge to bear on the subject, as he does when speaking about these matters. He highlighted the potentially devastating impact that optical and retinal diseases and illnesses can have on someone’s life. A few years ago I did something very trivial; somehow—heaven knows why—a tree branch went right across my eye and cut it. I recovered fully, but for the few weeks that I had the treatment and the cream, it had an impact on my daily life. It was trivial in the great scheme of things—although if untreated, it may not have been—and I can only begin to imagine the impact of some of those conditions, as the hon. Member elucidated.

[Shockat Adam]

The right hon. Member should not feel bad, as that is the most common reason for eye trauma—gardening is the most dangerous sport for eye health. I have met people who lost their sight from a branch scratching their cornea.

[Edward Argar]

In which case, I remain very grateful to the clinicians at the Leicester royal infirmary. The hon. Member will be pleased to know that my wife shares his view about the dangers of gardening, particularly when I am doing it.

As right hon. and hon. Members can see, I am increasingly reliant on my reading glasses and my regular eye tests at Specsavers—other opticians are available. As the hon. Member for Strangford said, that is a reminder of the importance of the issue. A regular eye test not only can detect optical and retinal illnesses earlier, but can potentially spot other more serious conditions that are not directly related to eye health, but of very great significance.

[Jim Shannon]

I had two constituents in Newtownards who came to me complaining of a really sore head and a terrible colour. I said, “Have you been to the doctor?” “Yes,” they said. “Go and see your optician,” I said. On both occasions, they had tumours—one of them was the size of a golf ball; the other was growing. When they got to the A&E at Ulster hospital, they were retained and had emergency operations. With a simple interview and appointment, an optician can diagnose that early on, which can save someone’s eyesight and their life as well.

[Edward Argar]

The hon. Gentleman is absolutely right. He and I have known each other since we came to this House, and he has read my mind, because I was about to say that there are examples of life-threatening tumours being detected through a regular eye test and a referral onwards, which has saved people’s lives. As he set out, an estimated 25,000 or so people in the UK are affected by inherited retinal diseases. As the hon. Member for Leicester South said, the most common, which I will mispronounce, is retinitis—

[Shockat Adam]

Pigmentosa.

[Edward Argar]

I am grateful to the hon. Gentleman. As a professional optometrist, I am sure his bill will be in the post. Inherited retinal diseases can lead to a gradual loss of vision and can have potentially devastating effects.

[Lee Pitcher (Doncaster East and the Isle of Axholme) (Lab)]

My wife lives with retinitis pigmentosa. We have been together for 30 years, and over that time, I have seen how that degenerative eye disease can change the way that we live, adapt and care for each other as a family. Although there is a massive place, as we have talked about, for innovation and research and for access to investigation for treatment, once she got the white cane that she has now, that became a symbol for everybody else. People notice that she has a condition and they are much more attentive to her for that reason.

It is in the period before that where we could make an intervention around inclusion and education. Does the right hon. Gentleman agree that we could do something at that point to identify to others that somebody has a condition, which they might not be able to see, in order to help them?

--- Later in debate ---

[Edward Argar]

The hon. Gentleman is absolutely right. One of the key themes of this debate has been the importance of raising awareness and of societal understanding. Before I was a Minister, I co-chaired the APPG on dementia. I think we are making progress, but a large part of the challenge that we face as a society is raising the awareness and understanding of hidden conditions or things that might not be immediately apparent to people, particularly before there is a diagnosis or some sort of visual sign, such as a white cane, or other measures. This debate will play a small but important role in helping to raise awareness of those conditions.

The next challenge, as was alluded to, is diagnosis and what more can be done to deliver better and earlier diagnosis. Again, real progress is being made, but, as so often in these spaces, we can do more. It is a pleasure to be taking part in this debate, because although we often to and fro across the Dispatch Box or across the Chamber, I suspect that there is a fair degree of consensus today about where we are, what progress we have made and what more needs to be done, which is all to the good.

As has also already been alluded to, when there is a diagnosis, the next challenge is the treatment and what is possible in the way of treatment. In 2019, as has been said, NICE recommended the use of a new gene therapy called—again, I will use the abbreviation rather than the technical term—the Luxturna approach; I am sure that the hon. Member for Leicester South would be able to correct me, if necessary. It was recommended to treat inherited retinal dystrophies that are caused by a specific type of gene mutation. We are seeing real progress with that type of viral vector-based gene therapy. There are also potential new treatments that we have heard about, including further gene and stem cell therapies, artificial vision therapies, electrical stimulation therapies and indeed the use of growth factors and retinal transplants.

I have sat where the Minister is sitting now, so I know that there is always a challenge in this space. One of the great successes of our country is in innovation, including the rapid development of new therapies and new treatments. However, there must always be a process to make sure that they are safe and effective, and we must strike the appropriate balance in recognising that there is no infinite pot of money for any Government.

In August 2024, Retina Today, a respected journal, reported that there are currently over 30 gene therapies in development for the treatment of a range of retinal diseases, so we can look forward with a degree of cautious confidence to what is being done in that space. The challenge will always be, of course, how we translate such treatments into effective, deployable and—if I am being honest—affordable solutions for people who have such conditions. The situation is similar with artificial vision technologies, including the implanting of microchips. Therefore, there is reason for us be hopeful about treatment and research.

I now turn to the UK rare diseases framework, which hon. Members have spoken about today. It was first published in January 2021 and there have been a number of action plans since: there was one in February 2022, with 16 actions; one in February 2023; and one in May 2024. I was encouraged that in December 2024 the Minister’s colleague—the Under-Secretary of State for Health and Social Care, the hon. Member for Gorton and Denton (Andrew Gwynne)—reaffirmed the Government’s commitment to the rare diseases framework. I am also encouraged that there is talk of a 2025 refresh. I hope that the Minister can give a little more information on how she sees that process playing out when she speaks.

Some progress was made with those action plans, but if we are being completely honest, it was perhaps not as much progress as we might have wished. There are a range of external reasons for that, but there is now an opportunity for the new Government to continue to take the process forward. From what I see and hear, they are committed to and willing to do that, which is deeply encouraging.

With regard to NICE, I have already alluded to the challenges that it always faces. It has a difficult role to assess the clinical and cost-effectiveness of medicines and treatment, which is challenging because if someone is in need of a treatment—indeed, if they are desperate for a treatment—they will obviously want that treatment to be trialled. We therefore need to recognise that NICE does a difficult job in striking the right balance.

NICE uses the HST—highly specialised technology—programme. As we heard, refinements to the routing criteria have been proposed, including that

“The disease is ultra-rare and debilitating…having a point prevalence of 1:50,000 or less in England…is lifelong after diagnosis with current treatment, and…has an exceptional negative impact and burden on people with the disease”;

that there is the

“aim to encourage innovation and research”,

which is a good thing that we can all support; that

“The technology should be limited to the population in its licensed indication… No more than 300 people in England are eligible for the technology for its licensed indication, and the technology is not an individualised medicine”;

and that there are “no effective treatment options”.

I understand that just before Christmas NICE launched a public consultation, ahead of updating the HST eligibility criteria. That consultation is due to report later this year, following the closure of the consultation on 30 January. As I look at the date on my watch, I can see that hon. Members and other individuals have about a week or so in which to make any representations or put any views to that consultation, should they wish to do so.

I hope that the Minister will be able to update right hon. and hon. Members on each of those aspects—where she sees us going with diagnosis, treatment and access to treatment, and where she sees that research going in the long term. I hope the hon. Member for Torbay (Steve Darling) will forgive for not mentioning him before, but I pay tribute to him for bringing to his role and to this subject—as he does to his other speeches in this Chamber and the main Chamber, and to other debates since he has arrived in this House, not limited to this subject—a measured, thoughtful and knowledgeable approach. The House is all the better for those contributions.

Once again, I am deeply grateful to the hon. Member for Strangford for bringing forward this hugely important debate. This House is at its best when Members debate not the to-ings and fro-ings that we all put in our election leaflets, but consensual matters where there are genuine points of interest and where we can make a real difference for people. That is one reason why I was very keen, despite being the shadow Secretary of State, to speak in this debate—but also, of course, because it is a pleasure to serve opposite the Minister again for old time’s sake. I very much look forward to what she has to say and I am grateful to have had the opportunity to speak.