Patient Access 2021

Access to Orphan Medicines

The MAP Policy and Public Affairs team consider how the current and future policy landscape will impact on the market access function for innovative medicines, and host an insightful panel discussion with rare disease patient organisation and industry representatives. Panellists reflected on the potential for the NICE methods review, proposed Innovative Medicines Fund and other policy levers to improve access to orphan medicine arrangements.
MAP Patient Access Conference 2021 Session 2: Access to Orphan Medicines

The MAP Policy and Public Affairs team consider how the current and future policy landscape will impact on the market access function for innovative medicines, and host an insightful panel discussion with rare disease patient organisation and industry representatives. Panellists reflected on the potential for the NICE methods review, proposed Innovative Medicines Fund and other policy levers to improve access to orphan medicine arrangements.

Speakers

Tracey Bowden, Head of Policy, Public Affairs and Communications, MAP

Tracey is a senior level healthcare policy expert with significant experience influencing and networking with key stakeholders on market access strategies that support shaping the healthcare environment.

Gerald Chan, Associate Director, MAP

Gerald has a solid background in healthcare communications, policy and public affairs gained while at a royal medical college and a medical device manufacturer specialising in chronic care.

Previously, Gerald has led on relationship building and advocacy with a wide range of stakeholders including health bodies, charities and civil society. He builds strong working relationships with patient organisations, helping them to lobby Parliament on unmet needs and quality of life issues. Gerald also has expertise working with trade associations, the NHS, government and clinical bodies to influence policy and legislation.

Dr Thomas Kenny, CEO Rare Disease Research Partners, MPS Society

Tom Kenny is Chief Executive Officer at Rare Disease Research Partners (RDRP). In this role, he oversees all aspects of the organisation. Before joining RDRP, Tom worked in a wide variety of roles in the public and private sector. Tom is dual qualified as a GP and Public Health Physician, has an MBA and a Master in Public Health. He can regularly be found digging into the technicalities of rare disease evidence and constructing innovative strategies for improving things for people with rare diseases.

Natalie Frankish, Policy and Engagement Manager for Scotland, Genetic Alliance UK

Natalie has been responsible for delivering Genetic Alliance UK’s work in Scotland for the last ten years. Natalie has worked to develop a Virtual Involvement Panel for people living with rare, genetic and undiagnosed conditions in Scotland and is committed to ensuring that their views are at the heart of policy and service development. She has been involved in a number of campaigns, including Genetic Alliance UK’s public petition on access to new medicines for rare diseases in Scotland, and she is particularly passionate about improving access to high-quality information and coordinated care. Natalie provides the role of secretary for the Cross Party Group on Rare, Genetic and Undiagnosed Conditions in the Scottish Parliament and is currently supporting the Scottish Government, as Chair of the Rare Diseases Patient Voices Advisory Group, as they develop the new Scottish Action Plan for Rare Diseases.

She is currently working on a new project ‘Why Medicines Matter’ which seeks to highlight the importance of timely access to new medicines for rare conditions and to consider how Scotland’s new Rare Diseases Action Plan can deliver improved access to services, treatments and drugs.

Samantha Barber, CEO, Gene People

Samantha Barber joined Gene People in September 2020. With over 20 years’ experience in the voluntary sector, Samantha’s interest in genetic conditions was sparked during her time as Interim CEO of the Batten Disease Family Association, where she secured funding for the first-ever treatment for the condition. Samantha has also been Interim Joint CEO of the Tuberous Sclerosis Association. Samantha achieved a Distinction in her MSc in Voluntary Sector Management from City Business School.

Jess Hobart, Trustee, UK Masto

Jess Hobart is co-chair of The UK Mastocytosis Support Group. She has been active in the rare disease community in the UK and US for 25 years, beginning shortly after her diagnosis with systemic mastocytosis. Jess is passionate about teaching people with mast cell diseases to advocate for themselves, about ensuring they receive high-quality care, and that they have access to effective medicines (whether innovative medicines like the one just approved by NICE or older generics with a poor supply chain). She holds an MPP from Harvard’s Kennedy School of Government and an MPH from Johns Hopkins University.

Charlie Galvin, General Manager, UK and Ireland, Amicus

Charlie has held a number of senior commercial, market access and business development roles at Global pharmaceutical companies including Pfizer, Amgen and currently is the General Manager, UK and Ireland at Amicus.

Tracey Bowden


Tracey Bowden, Head of Policy, Public Affairs and Communications, MAP

Tracey is a senior level healthcare policy expert with significant experience influencing and networking with key stakeholders on market access strategies that support shaping the healthcare environment.

Gerald Chan


Gerald Chan, Associate Director, MAP

Gerald has a solid background in healthcare communications, policy and public affairs gained while at a royal medical college and a medical device manufacturer specialising in chronic care.

Previously, Gerald has led on relationship building and advocacy with a wide range of stakeholders including health bodies, charities and civil society. He builds strong working relationships with patient organisations, helping them to lobby Parliament on unmet need and quality of life issues. Gerald also has expertise working with trade associations, the NHS, government and clinical bodies to influence policy and legislation.

Dr Thomas Kenny


Dr Thomas Kenny, CEO Rare Disease Research Partners, MPS Society

Tom Kenny is Chief Executive Officer at Rare Disease Research Partners (RDRP). In this role, he oversees all aspects of the organisation. Before joining RDRP, Tom worked in a wide variety of roles in the public and private sector. Tom is dual qualified as a GP and Public Health Physician, has a MBA and a Master in Public Health. He can regularly be found digging into the technicalities of rare disease evidence and constructing innovative strategies for improving things for people with rare diseases.

Natalie Frankish


Natalie Frankish, Policy and Engagement Manager for Scotland, Genetic Alliance UK

Natalie has been responsible for delivering Genetic Alliance UK’s work in Scotland for the last ten years. Natalie has worked to develop a Virtual Involvement Panel for people living with rare, genetic and undiagnosed conditions in Scotland and is committed to ensuring that their views are at the heart of policy and service development. She has been involved in a number of campaigns, including Genetic Alliance UK’s public petition on access to new medicines for rare diseases in Scotland, and she is particularly passionate about improving access to high-quality information and coordinated care. Natalie provides the role of secretary for the Cross Party Group on Rare, Genetic and Undiagnosed Conditions in the Scottish Parliament and is currently supporting the Scottish Government, as Chair of the Rare Diseases Patient Voices Advisory Group, as they develop the new Scottish Action Plan for Rare Diseases.

She is currently working on a new project ‘Why Medicines Matter’ which seeks to highlight the importance of timely access to new medicines for rare conditions and to consider how Scotland’s new Rare Diseases Action Plan can deliver improved access to services, treatments and drugs.

Samantha Barber


Samantha Barber, CEO, Gene People

Samantha Barber joined Gene People in Sept 2020. With over 20 years’ experience in the voluntary sector, Samantha’s interest in genetic conditions was sparked during her time as Interim CEO of the Batten Disease Family Association, where she secured funding for the first-ever treatment for the condition. Samantha has also been Interim Joint CEO of the Tuberous Sclerosis Association. Samantha achieved a Distinction in her MSc in Voluntary Sector Management from City Business School.

Jess Hobart


Jess Hobart, Trustee, UK Masto

Jess Hobart is co-chair of The UK Mastocytosis Support Group. She has been active in the rare disease community in the UK and US for 25 years, beginning shortly after her diagnosis with systemic mastocytosis. Jess is passionate about teaching people with mast cell diseases to advocate for themselves, about ensuring they receive high-quality care, and that they have access to effective medicines (whether innovative medicines like the one just approved by NICE or older generics with a poor supply chain). She holds an MPP from Harvard’s Kennedy School of Government and an MPH from Johns Hopkins University.

Charlie Galvin


Charlie Galvin, General Manager, UK and Ireland, Amicus

Charlie has held a number of senior commercial, market access and business development roles at Global pharmaceutical companies including Pfizer, Amgen and currently is the General Manager, UK and Ireland at Amicus.

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