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Great expectations: the urgent need for common purpose in Alzheimer’s disease

By Andrew Harrison

Andrew Harrison

A few years ago, when communicating the phase 3 data of a major trial in Alzheimer’s disease (AD), our prime goal was focused on accuracy of reporting of the hugely complex science and nuanced data.

Securing coverage was never going to be a problem. We did not know the trial results in advance, but we knew it would be front-page news whatever it said, and we were right. The story ran for days. Thankfully, the intensive scientific educational work to support key media paid off.

The challenges ahead

Bringing clarity out of complexity is the strategic and communications challenge for new disease-modifying treatments that are so desperately needed to help reduce the huge unmet need in AD. The science, the expectations and the readiness of health systems to use and pay, create multiple layers of complexity.

The science is incredibly difficult. After decades of research and billions invested, we do not yet have a clear understanding of the role the different hypothecated disease and treatment mechanisms play in AD. Trial results are often not a simple fail or succeed, with data being re-analysed and products re- tested.

Hopes have been repeatedly raised and then dashed, but there is now fresh progress. Biogen surprised the world last autumn by announcing a re-evaluation of its latest aducanumab trial and the company is now expected to apply for regulatory approval.

If people are hoping for any of the molecules under investigation to be a cure or to halt or reverse disease progression, they will be disappointed. There is a vital job for communicators to inform audiences and balance expectations.

Managing high expectations

We all want a treatment equivalent to the latest smartphone, with its enormous functionality, but there is a risk that uninformed audiences will instead feel like they are receiving something akin to a more basic mobile phone – a real advance, but less than hoped for.

Communicators will need to manage the often unrealistically high expectations of the media and public, while empowering HCPs and payers with an understanding of a treatment’s role and value. Corporate reputation in the AD community and share price sensitivity are also crucial considerations.

How disease-modifying treatments can be best used also requires education. Unlike many areas where novel therapies are first introduced later within patient pathways, the AD treatments under investigation will need to be given to those with no or very mild symptoms if they are to have benefit.

Health systems will be faced with demands to introduce completely new pathways to diagnose, treat and monitor a potentially large and generally ‘healthy’ patient population.

The cost burden

Payer opinion in AD has shown high levels of concern at the expected cost burden that new treatments and pathways could place on health systems. Budgets have not been routinely set aside for new AD treatments and many payers will be reluctant to establish significant new treatment pathways overnight.

The access landscape is further complicated because many health technology assessment (HTA) methodologies are currently not geared up to evaluate these treatments.

Effective AD treatments will be a cost to health systems but in return will bring relatively little cost benefit to those health systems – by reducing or delaying the level of care people need, they will offer most benefit to social care systems and wider society.

Yet NICE and many other HTA bodies limit their assessment to the cost-effectiveness of treatments to health systems alone, so their methodologies are more likely to report negatively and reduce willingness to pay.

There is a need for dialogue between payers, health system leaders and industry to plan and develop pathways, as well as to agree individual win-win managed access agreements so that new medicines, when available, can reach the right patients quickly.

Long-term sustainability

Deals must be win-win because it is important to create a true long-term partnership between payers and industry. Payers must positively want to use new treatments and industry must feel its investment is rewarded. It will take multiple evolutions before we get an AD treatment equivalent to today’s smartphones.

We can imagine a world where future AD treatments play a major role in health and care system sustainability, but research investment will fall away and future breakthroughs may never be discovered if payers do not back earlier waves of treatment.

Most of us will have experience of family or friends with Alzheimer’s or wider dementia, and it is encouraging to see the continuing scientific progress. Yet a product only succeeds if patients can access it, and smooth market entry in AD
is not guaranteed.

It requires a strategic and connected approach across communications, policy and access to bring all audiences to a common understanding and shared purpose.

Andrew Harrison is Managing Director at Hanover Health

In association with


16th March 2020

From: Research



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