What is the power in collaboration?
At Alzheimer’s Research UK, we pride ourselves on being collaborative in how we work with each other and other organisations to drive change.
There are currently no treatments available in the UK that slow or stop the diseases that cause dementia, but we’re at a tipping point for progress, and once licenced, we must ensure people living with dementia are able to access these life changing treatments. Our work leading the Charity Medicines Access Coalition (CMAC) has shown us the importance of bringing people together in the policy world to make progress in this area.
Working together with other health charities on areas of shared priority, like access to new treatments, can amplify and strengthen our voice.
Alzheimer’s Research UK chairs CMAC, which brings together organisations who jointly represent millions of people around the UK with different health conditions. Together, we want to help overcome the barriers that can delay or prevent these individuals from accessing new, innovative medicines. We share insight, discuss challenges, and seek opportunities to influence decision-makers to improve the access environment for those living with different health conditions, particularly those areas with high unmet need like dementia.
We have a strong reputation for being a fair, evidence-based voice in the policy development process. This reputation has provided member organisations with the opportunity to play a key role in developing new and improved initiatives alongside key decision makers, including the National Institute for Health and Care Excellence (NICE), the body in England responsible for assessing whether drugs are both clinically and cost effective enough to be made available on the NHS – ultimately deciding which treatments can reach the people that will benefit from them.
“The group is a great forum with direct access to the highest levels of medicine access discussions, and the views and information shared amongst the members helps all disease areas progress in getting their patient groups access to the latest medicines.” – Bradley Price, Policy and Public Affairs Manager at Sarcoma UK
Access to life changing treatments
To meet our vision of a world free from the fear, harm and heartbreak of dementia, we must ensure that the people who will benefit from new, life-changing dementia treatments are readily able to access them on the NHS.
There are nearly one million people living with dementia in the UK, which has an already aging population, yet there have been no new treatments licensed in Europe for more than two decades. There are several dementia medicines progressing through the late stages of clinical trials, but concerns about their cost and challenges with recognising their ‘value’ could delay or prevent their availability on the NHS and therefore their ability to reach the right people.
We need decision-makers to properly consider the impact of a future treatment on the lives of those living with dementia, their loved ones, and the wider economy as a whole when weighing up whether to approve a new treatment. This should include greater consideration of the health and wellbeing of carers, and the cost to the economy of ‘informal’ dementia care. Many of these challenges are present in other disease areas, giving common cause for CMAC members to work collectively and drive change at a national level.
Building on our reputation for fair and evidence-based insights informed by extensive expertise across disease areas, CMAC were invited by NICE to help shape how they review future treatments. This review was focused on delivering improvements to the way NICE decides what medicines are made available to NHS patients.
A successful outcome of our collaborative work on this review will be seeing more conditions, such as dementia, given greater flexibility in terms of how the costs and benefits of new treatments are weighed up. This flexibility was previously only given to a more limited number of conditions.
A look to the future – what will CMAC do next?
We’re continuing to work collaboratively to identify examples of where access to life changing medicines has been or may be delayed or prevented.
As a group, we recently met with the new Chief Executive of NICE, Dr Sam Roberts, to discuss her plans for the organisation and how we can support the development of policy and engagement with patients and patient organisations.
It was excellent to hear her confirm that she wanted to work with CMAC moving forward, and the Policy and Public Affairs team here at Alzheimer’s Research UK will continue to seek ways to work in step with other organisations with shared policy aims.
If you’re interested in getting involved with CMAC or have questions relating to the potential barriers that could delay the roll-out of new treatments for dementia, email George.Lankester@alzheimersresearchuk.org
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