Thought Leadership - Putting Patients First

Through MAP’s engagement with hundreds of healthcare companies, we have observed common systemic patient access challenges. We have made it our mission to actively address these.

Addressing systemic challenges causing access delays for patients and ultimately saving lives.

Through MAP’s engagement with hundreds of healthcare companies, we have observed common systemic patient access challenges. We have made it our mission to actively address these. Why do we do this? Because ultimately our actions can have a positive life changing impact on patient recovery.

MAP may recommend company specific programmes, identify external initiatives that companies may become involved with, and we also consider MAP-led activities that seek to address the challenges in a coordinated, evidence-based way.

We also actively respond to consultations on issues that will have an impact on access to medicines and health technologies. Our community of MAP Online members will often have an opportunity to comment.

See MAP’s thought leadership process in action. Read our improving access to orphan medicines case study.

Discover how MAP is supporting patient groups with the creation of the MAP Patient Access Award.

If you’re facing access challenges and would like to discuss your options, please contact MAP’s policy and public affairs team on

Access to Orphan Medicines A Case for Change

Case study: Improving Access To Orphan Medicines

In 2018, MAP convened a Steering Group of MAP Online members who had a shared interest in addressing the challenges that make it difficult for medicines for rare diseases (often described as orphan medicines) to receive a positive recommendation from NICE.

Our particular focus was on making the case for change in the way that orphan medicines routed to NICE’s Single Technology Appraisal programme are evaluated. We believed these structural changes would have a transformative positive impact for patients and their families. 

Our approach

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Achievements to champion the Patient’s cause

  • One national and six pharma sector news pieces for the report

  •  8 mentions in the UK Parliament of the report and its findings

  •  References to the report from the Chief Executive of NICE and Director of Specialised Commissioning at NHS England during Parliamentary Select Committee evidence sessions

  •  At least 9 mentions in other stakeholder documents, including those from Genetic Alliance UK, Office of Health Economics, PWC and BioIndustry Association

  •  Teleconferences with 12 key stakeholders and decision-makers

  •  Regular engagement with key patient groups

  •  Participation from more than 10 Parliamentarians at events

  •  Active reference within NICE’s consultation on the methods review to the challenges associated with evaluating orphan medicines and encouraging proposals for change

What next?

There were some proposals in the latest consultation from NICE on its methods review that could make a difference but there is still more to do! MAP is continuing to work collaboratively with the patient group community, Parliamentarians and our supporting companies to drive forward this important issue.

MAP BioPharma is our ‘go to’ company for market access expertise and knowledge. Their team combined with the MAP Online portal provides a wealth of information and insights saving us a lot of time. I have no hesitation in recommending their services!

Zogenix, Head of Market Access, Europe

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