World Dementia Council China Summit
Thank you very much Sen. Thank you for everything you have done to pull together this meeting.
It is a pleasure to be here in Guangzhou. To be back here actually. I was last here in 1997. Almost 30 years ago! Guangzhou has changed a bit since then. So have I! Thank you also to the co-chairs of this meeting who have with us organized the speakers for this meeting.
- Professor Ning, Secretary of the Party Committee of The Affiliated Brain Hospital of Guangzhou Medical University
- And Dr Carrillo, Chief Scientist at Alzheimer’s Association in the United States. And her colleague Dr Edelmayer who is also here today.
World Dementia Council
As Sen said I am Lenny Shallcross the Director of the World Dementia Council. We are delighted to have co-programmed this meeting. Before I get going, let me say something about the Council. It was set up by the government of the United Kingdom following a meeting of the G8, as was, on dementia that the then UK prime minister David Cameron hosted back in 2013. It brings together global policymakers and leaders in dementia to explore solutions to new and emerging challenges facing people living with dementia. The Council works to promote a shared understanding about the challenge facing the field and how to make progress.
This meeting
With that, let me walk you through the programme for the next couple of days. As you will see, we have now a number of welcoming remarks to open our two days together. We have an introductory talk on the dementia landscape here in China. Then we spend the remainder of the day on the related topics of research and the development of treatments and the development of biomarkers. On day two we have talks on real world evidence and neurological disease more broadly. Before an afternoon on prevention then concluding with a talk on traditional Chinese medicine. Now here’s the thing, I know when you ask an academic for four slides they will give you forty and insist they can get through it in five minutes but then take fifteen. But over the next couple of days is not people being talked at but dialogue. Now that requires restraint from the people speaking here at the podium, but it also requires you sat there to ask questions, to make observations. So, participate. Where do people say we are Over the next couple of days, we’re talking about diagnostics, treatments, prevention.
But while I have the podium here, I just want to set out an argument that HOW you talk about science impacts on how everyone from policymakers through to the public PERCEIVES this disease area. Years ago I trained as a doctor. Actually, last time I was in Guangzhou I was a young medical student at Cambridge University backpacking from Hong Kong to Moscow. But I spent a lot of time working in politics in the UK. And it think sometimes it can feel the arc of progress is broken. It can certainly feel like that in our field. You know, after all these years of research, after billions of dollars have been spent, at the end of the day, for an individual sat in their physician’s office, whether they have Alzheimer’s or Vascular Dementia, or FTD or whatever, the core message remains unchanged. This disease you have, we can’t shift the odds, we can’t give you a fighting chance of beating in, we can’t stop it. For everyone, rich or poor, wherever you are in the world, whatever the health care you can access, from diagnosis there is only one path stretching ahead. There is only one direction. Only one end point.
And I hear it all the time. And you’ll all have experienced it no doubt: the shrug of shoulders, the roll of the eyes, the frustration, the cry of anger. The policy maker, looking into our field, the potential donor or funder, the patient at the start of their journey. Their take: nothing has changed.
And my response? Nonsense
Treatments
Because the moment we are in, is for our field, for patients, a moment of hope. A moment of optimism. The story of the last few decades has been about taking small steps along the road. And you can be focussed on each small step you miss that they have taken you to a whole new place.
And that new place is that we CAN treat Alzheimer’s Disease.
- The FDA in the United States says we can
- The MRHA in the UK says we can
- The PMDA in Japan says we can
- The NMPA in China says we can
- And the EMA in Europe may well say we can after all.
Now regulatory approval is not the same as public access. To give you one example, in the United Kingdom while our regulator, the MRHA, has approved the treatment, NICE, our payment agency has not. But payers have a different set of questions from regulators. And as Alzheimer’s Association has shown in the United States payers move. So yes, while it is frustrating that access is so limited, the big step is from a world where they are no approved treatments, to a world where they are approved treatments.
Direction of travel
Now you might look around the world and ask have we really taken such a big step? We have. First because it signals the direction of travel. Even if the impact of treatments is limited and, at the moment, is available in only a few countries, this signals the direction of travel for the field. Over the years ahead there will be more treatments, for Alzheimer's and other forms of dementia, both to manage symptoms and to modify the course of the disease. These will be easier and cheaper to deliver and bring greater benefits for patients and caregivers. There will be new diagnostics of disease used routinely in clinical practice. And so on.
And it is not as if we didn’t know this before. The journey from untreatable to treatable that Alzheimer’s is on, is much like any other disease area. You just have to look at something like MS. Others have been here before. But the advent of the first treatments is a public affirmation of that direction of treatment. It is a reason to double down on hope.
Discourse
As an opportunity to frame the discourse, the introduction of the first treatments for AD did not go as smoothly as we might have hoped. Risk is an issue. I don’t want to down play side effects. But it is a risk that an individual can choose to take or not. On another topic, my body my choice, has been a slogan. But it is as true for dementia. In the end there is only one person who can decide on risk and effectiveness. And that is not the physician. It is the patient. Public policy needs to enable the individual to have the choice on treatment. The physicians to help and guide. But it is the patients, and only the patient, who can make a choice on the risk and benefit of treatment.
And there are those that have said that treatments distract. Treatments will not remove the need for care and support. People need psychosocial interventions to help manage the disease. But I think treatments do the opposite of what some people feel. They don’t drag attention away from these issues. Rather treatments shine a spotlight on everything from prevention through to end of life. Wherever you are in the world you manage disease through health systems through the steps of diagnose, treat and then provide care and support, from diagnosis through to death, as necessary. Without the first bit – diagnose and treat – you are always going to struggle with the second bit.
And when the untreatable becomes treatable patient behaviour changes.
None of this happens overnight. But the big step is the first one. From untreatable to treatable. And we should celebrate that we have made it.
The context
I say all of this because it is the context of our conversation over the next couple of days. And before I end let me make one observation. Science is slow. No one would claim an Alzheimer’s clinical trial is speedy. We do need to speed up the pipeline, and there are lots of ways of doing that, which is why things like AlzNet are important. But we are fundamentally developing things for those that are following. And what people want in the future, how they behave, might be different. The relationship between physician and patient is something that has remained unchanged for centuries. But digital is changing that. If not yet, it will do. And it is in things like diagnostics you are going to see the impact first.
Conclusion
So with that our story is one of science advancements, and the question for the next two days is how you make advances faster. Lecambi and Donamamab have not shatters our glass ceiling. But they have cracked it. And when the glass hasn’t shattered, you don’t stop hammering. You keep going. It is will shatter. Our responsibility is to champion the story of progress. Our story of hope. And to do that in collaboration. At the heart of progress is collaboration. The sharing of knowledge and ideas. Alzheimer’s Association International Conference, that next year is in Toronto Canada, next July. Bringing together thousands of scientists working in the field from around the world. We need more collaboration not less. The passport you carry might influence many things in life but for sure the one thing is doesn’t influence is the biology of your brain. We have a common problem. We are advancing. We are making progress. Science is delivering. Thank you.
Lenny Shallcross is Executive Director of the World Dementia Council