ABPI publication: How to make sure patients get faster and fairer access to new medicines

26 February 2024

NRAS CEO Clare Jacklin is a member of the ABPI Patient Advisory Council which has produced this report.

UK governments and NHS leaders need to start with a holistic view of patient need and improve fair access to the latest medical advances which could help improve patient outcomes, wherever someone lives, and whatever their social or economic background.

A new report, ‘How to make sure patients get faster, more equitable access to innovative treatments’ brings together real life examples of good practice from patient organisations and companies, and makes local and national recommendations on how to fix those parts of the system which are failing patients when it comes to access to the latest treatments [1].

The report, compiled by eight leading charity CEOs working with the Association of the British Pharmaceutical Industry (ABPI) [2] explores the human cost of NHS decisions and processes that fail to ensure fair and timely patient access to clinical trials and proven treatments. These costs can be significant and go on to compound already deep-seated health inequalities across the UK. It also explores the opportunities for patient care when the system gets it right.

Many major causes of poor health and unnecessary death disproportionately impact people from lower socio-economic backgrounds. For example, 86 per cent of northern local authorities in England have a lower population life expectancy than the England-wide average [3].

A joint ABPI and PwC report published in May 2022 demonstrated that more equitable use of just 13 medicines in line with NICE recommendations across four treatment areas – stroke prevention, kidney disease, asthma and type 2 diabetes – could bring significant economic benefits to the UK, in addition to wider individual and community benefits for patients, carers and families. For these four medicine classes alone, 1.2 million patients are missing out on innovative treatments [4].

Today’s report demonstrates the impact of inequitable access on patients at three key stages along the pathway: during the clinical trial stages of a medicine’s development, when the NHS adopts medicines after approval is given by regulators, and at the point of patient access to treatment.

Clinical trials
Variation in access to clinical trials is common – by their nature, clinical trials are not available in every health system and setting. However, how and where they are designed and set up can add to the built-in inequity of access. There is ongoing work to explore how access to clinical trials can be improved by careful design of studies focusing on key demographics and tackling logistics and practical barriers.

Adoption of innovation by the NHS
NICE and its devolved nation equivalents undertake a robust evaluation of clinical effectiveness and cost-effectiveness of new innovations.

However, the speed at which local decisions are made can be variable and slow. There are examples where local decisions either limit use or do not adhere to NICE guidance, creating inequity of access for patients. The Welsh Government’s New Treatment Fund is one example of how patients can get fast, consistent access to new and innovative treatments.  

Patient access
Even when a treatment has been approved for use and access to it agreed upon in theory, how it is delivered affects the extent to which access is ensured or restricted.

Once an innovative therapy is established as one of the accepted and effective treatment approaches, systemic inequity remains stubbornly present, with geographical disparity challenging the concept of a ‘national’ health service. The report highlights one project for inflammatory bowel disease that helped improve faster access to treatment for patients.

Tom Nutt, CEO of Meningitis Now, said: “When the system gets it right, fast access to proven treatments transforms people’s lives. Sadly, all too often, the system gets it wrong, to the detriment of people and their families.

“With this report, we want to demonstrate what not to do, as well as best practice examples that could help national and local NHS and government leaders tackle the challenges of equity, uptake, and health inequalities more widely.”

The report sets to help accelerate and enhance the implementation of government and NHS initiatives already in progress that tackle the challenge of inequity in access to innovative treatment and care.

Ben Lucas, ABPI Board member and Managing Director, MSD in the UK and Ireland

“This report reminds us and policymakers of the need to put the patient voice first in everything we do.

“We should never lose sight of the fact that positive or negative decisions on medicines have a huge impact on people and their families. It’s good to have that reinforced with the examples the Patient Advisory Council has laid out.

“I hope their insights are a constructive contribution to initiatives to tackle health inequalities and improve standards of care for everyone.”

Key areas to focus efforts locally:

• taking a holistic view of patient need and lived experience to understand and determine what is needed to make any given treatment more likely to succeed
• plan the treatment pathway from the patient perspective to minimise the shuttling and delays between primary and secondary care
• plan the treatment approach using all health professionals – specialist nurses, pharmacists, paramedics, as well as doctors – to make best use of workforce expertise and availability
• use digital, remote, home-based and self-management treatment options alongside in-person care
• beyond the therapies themselves:

        – prioritise clear and open communications with patients

        – consider the physical aspects of access – practicalities and cost          for the patient

        – plan the timing, frequency and locations of clinics and       diagnostic centres to meet patient needs

Key areas to focus efforts nationally:

• explore how to make funding available for the running costs of essential medical equipment that patients can use at home and that is integral to their care and keeps them out of hospital
• review how local decision-making fits with national evaluation and guidance from NICE and its devolved nation equivalents
• align the levers of legislation, incentives, funding and accountability to improve equity of access

Taken together, the ABPI’s Patient Advisory Council believes these steps can show how equitable and timely access to innovative treatment can improve outcomes and the standard of care for patients and save vital resources.

Notes to Editors
[1] How to make sure patients get faster, more equitable access to innovative treatments – a report from the Patient Advisory Council and the ABPI, February 2024
[2] The Patient Advisory Council has been created to enable ongoing full, frank and open discussions and information sharing between senior patient representatives and ABPI Board and Executive team. Learn more about them here.

Council members who oversaw the report were Tom Nutt, CEO, Meningitis Now, Nicola Perrin, CEO, AMRC, Hilary Evans, CEO, Alzheimer’s Research UK, Samantha Barber, CEO, Gene People, Jacob Lant, CEO, National Voices, John James, CEO, Sickle Cell Society, Claire Jacklin, CEO, National Rheumatoid Arthritis Society and Sarah Woolnough, CEO, Asthma + Lung UK. Sarah Woolnough has since left the role and her successor will be joining the Council in the spring.   

[3] ONS, ‘Health state life expectancies, UK: 2016–2018’, December 2019, available at https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthandlifeexpectancies/bulletins/healthstatelifeexpectanciesuk/2016to2018

[4] PwC and the ABPI, ‘Transforming lives, raising productivity’, May 2022, available at https://www.abpi.org.uk/publications/pwc-transforming-lives-raising-productivity