13 July 2021

What two patients taught me about how much a life is worth

By

Joe was a six-week-old baby, struggling to breathe and on the brink of having a respiratory arrest when I was called to attend him as a junior doctor on an intensive care unit in Cambridge 20 years ago. He had spinal muscular atrophy (SMA), a genetic condition that causes muscle weakness and paralysis. Even if I could stabilise him, he would die an infant, as have all other babies born with this rare condition – until now.

The NHS has secured a new gene therapy, Zolgensma, which will dramatically improve the prospects for children with SMA. It involves an infusion with a replica of the missing gene, and can help babies breathe on their own, sit up, crawl and even walk after just one injection. The problem? It costs over $2m.

Another of my patients, Sam, was born with a different inheritance. His mother was an alcoholic, which had affected his brain while he was still in the womb. He grew up in a dysfunctional family without the skills to avoid getting sucked into the trouble that stalked his neighbourhood. He took drugs, in part to numb the psychological pain, and got a brain abscess from an infected needle. I was asked to treat the resultant epilepsy of someone now brain damaged and requiring lifelong care, paid for by his local authority.

These case histories illustrate two of the NHS’s key problems: financing and coordination.

Firstly financing. When I started my career, the NHS budget was £25bn. It is now £150bn. If I’d been told I could have that gradual funding increase over 25 years, I’d have put some into year-on-year growth in equipment and staff, but a major proportion would have gone into preventing diseases, making it a National Health Service, not a National Sickness Service. Instead we’ve improved life expectancy, but healthy years lived is terrible and 40% of NHS spend is for reversible risk factors.

By far the biggest returns can be made from investment in the earliest years of life. As Sam illustrates, this is not just in terms of health benefits, but also economic productivity, local authority costs, and costs to society and the justice system resulting from criminality. But these returns fall beyond the election cycle, arise in different department’s budgets, and are hard to pin to a single intervention.

History shows this. The Wanless reports in 2002 and 2004 said the NHS would collapse if we didn’t address overall well-being. But instead money was just pumped in to meet short term targets. Since then we’ve had Health and Wellbeing Boards linking NHS and local authorities, and the Five Year Forward View and Seven Ways to Wellness at the beginning of Simon Stevens’ tenure. But none of these have yet delivered the systemic change we need.

There are similar problems in procuring new drug treatments. How does the NHS, with its limited resources, make the case that an expensive drug like Zolgensma should be available on the taxpayer? Details of the deal the NHS struck with the manufacturers are confidential, but it is thought we got a substantial discount. Whatever the costs, they are more affordable when spread over a lifetime. And when you make such an intervention in the very earliest years, the returns are greater – especially if you place a high premium on extending the lives of very small children. But what about older patients?

SMA is very rare, Alzheimer’s is not. Last month, Aducanumab, the first ever disease-modifying treatment for Alzheimer’s was approved in the US. The problem? It costs $55,000 per year, and with much less clarity on how effective it is. Also, there are many additional factors that might influence cognitive decline in some patients, like blood pressure, so how do you know if a change is due to the treatment or something else? That information is essential if you want to know how cost-effective a drug is and link payment to future outcomes. The answer is bigger and more complex data sets.

Data provides the incentives to bring different actors together. We need longitudinal population datasets that cut across the NHS, social care and the Treasury. If only we had a National Innovation Centre for Data adjacent to the NHS business authority, the DWP and the new ‘Treasury North’ campus in Darlington. If only we had a Health Secretary who had insights from being Communities Secretary and Chancellor.

We should create a unit that can model the financial envelope for a particular local area, and as we do with new expensive drugs, trace the impact of a particular intervention. Then we should share the rewards of favourable deviation from the default with those effecting the change. We must also leverage capital markets’ upfront cash and expertise. As the most deprived areas have the biggest costs and lowest productivity, they would have the biggest potential return on investment. A levelling up bazooka.

The second problem is coordination. Healthcare is highly complex and unpredictable, especially with psycho-social complexities added to the mix. There are some basic rules of biology that also apply to health systems: things respond to incentives, there are always trade-offs, and changes to a system have unintended consequences. So whilst command and control works in certain situations, like vaccine rollout, in general we want decentralised, flexible and adaptive.

Humans are also programmed to be relationship-based, rather than transactional, and an optimum size for coordination is a group of 100-150 people. This is Dunbar’s Number, named after the Oxford anthropologist who suggested there is a cognitive limit to the number of people with whom humans can maintain stable social relationships. It also happens to be the size of the Primary Care Networks that have recently been formed from clusters of GP practices. I would not allow them to expand beyond this, and would encourage inclusion of non-traditional actors such as the local policeman, headteacher or councillor.

Of course, some things are best done regionally or nationally – and if we build on the new ways of working with tech that Covid forced through, we can allow more sophisticated interactions, break down the silos between specialists and generalist, and separately conceptualise buildings, facilities and clinical provision, overcoming the MPs’ dilemma of the local hospital being shut down – because the clinical support could be provided by different groups and increasingly from anywhere.

At the national level we need both the overarching goals and the right incentives to make sure we achieve them. We need data that provides quality assurance but also to remove the bureaucratic burden of producing it, so clinicians do useful checklists, not wasteful box-ticking

By finding new sources of finance, and harnessing data to make different areas of government more joined up, flexible and creative, we can save many more Joes and Sams in the future.

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Dr Paul Goldsmith is President of Closed Loop Medicine, a clinician and a fellow at the Centre for Policy Studies.

Columns are the author's own opinion and do not necessarily reflect the views of CapX.