Five new patient organisation leaders to join ABPI Patient Advisory Council

Five new patient organisation leaders have been appointed to the ABPI’s Patient Advisory Council, which provides advice and insight on the patient perspective to the ABPI Board and leadership team.

Launched in 2021, the Council comprises a mix of charities which represent a diverse range of disease areas and patient communities and aims to ensure the needs of patients are embedded in ABPI decision-making.

The new members are:

• Clare Jacklin, Chief Executive, National Rheumatoid Arthritis Society
• Hilary Evans, Chief Executive, Alzheimer’s Research UK
• John James, Chief Executive, Sickle Cell Society
• Samantha Barber, Chief Executive, Gene People
• Sarah Woolnough, Chief Executive, Asthma + Lung UK

The new cohort will be joining existing members:

• Sarah Sweeny, Interim Chief Executive, National Voices
• Tom Nutt, Chief Executive, Meningitis Now
• Nicole Perrin, Chief Executive, the Association Medical Research Charities.

Welcoming the new members, Colette Goldrick, Executive Director of Strategy, Research and Partnerships at the ABPI, said: “We are thrilled to welcome this new cohort of members to our Patient Advisory Council. Their input on behalf of their respective charities will help inform the ABPI Board and ensure the patient perspective is front and centre of industry decisions.”

Since its inception, the Council has worked with the ABPI Board to advise on issues including health data, equitable access to innovative medicines and clinical research in the UK.

Clare Jacklin, Chief Executive of National Rheumatoid Arthritis Society (NRAS) said: “I am delighted and honoured to be asked to join the ABPI Patient Advisory Council, it is a great opportunity for me to represent the more than 430,000 people with rheumatoid and 12,000 children with juvenile arthritis and it will hopefully ensure that the concerns of those living with all inflammatory arthritis conditions are elevated. I am really looking forward to networking with so many patient organisations and industry representatives.”

Hilary Evans, Chief Executive of Alzheimer’s Research UK, the UK’s leading dementia research charity said: “We are at a critical point in dementia research, with scientists on the cusp of making some of the biggest breakthroughs in medical history. But there are numerous hurdles ahead that need to be cleared before these drugs, once approved, can reach the people who so desperately need them.

“That’s why it’s never been more important for industry to take onboard the opinions of people living with dementia and their caregivers when making decisions that will directly affect them. I’m delighted to join the Council and look forward to sharing the voices of our supporters. Their insight and knowledge will help to shape the critical work of the UK pharmaceutical sector and ensure people with dementia can benefit from the fast pace of scientific progress and innovative medicines in the pipeline.”

John James, Chief Executive at the Sickle Cell Society said: “The Sickle Cell Society aims to improve the quality of life of those affected by sickle cell disease by working with health professionals, parents, and people living with the Sickle Cell. I am so pleased to be joining the ABPI’s Patient Advisory Council and look forward to ensuring that the patient voice of those living with sickle cell influences the strategic agenda of the ABPI.

Samantha Barber, Chief Executive of Gene People said: “I am delighted to be part of the ABPI Patient Advisory Council. Gene People provides information and support to people living with genetic conditions, their families and carers, and wider support universe including our Network of over 140 condition-specific support groups. Patient organisations and the medicines industry are two vital parts of the ecosystem that bring innovative medicines to people living with genetic conditions and I am honoured to be able to contribute to our collective endeavours in this way.”

Sarah Woolnough, Chief Executive of Asthma + Lung UK, said: “I am delighted to be joining the ABPI’s Patient Advisory Council to help put the voices of people with lung conditions at the centre of its important work. Lung disease affects 1 in 5 people and is the third biggest killer in the UK. We urgently need more research and innovation to find better ways to prevent, diagnosis, treat and manage lung conditions. We know research into new treatments has the power to transform lives, and I look forward to working with the Council to develop patient-centred research and ensure people with lung conditions can access the latest treatments.”