Rare but relevant A
round one in 17 1 people are likely to be affected by a rare disease at some point in their lives1, which amounts to 3.5 million people in the UK 2 and 30 million people across Europe3. Looking behind the numbers would no doubt reveal a multitude of patient voices, and also their wider support networks of family, friends, and carers who are also greatly affected by rare disease too; in totality rare disease isn’t actually so rare in terms of impact. Alongside this, the spectrum of rare disease is vast, with current estimates suggesting there are around 7,0002 rare diseases identified and recognised.
the healthcare system. Running through all of this there is a distinct human element, and a patient-centric approach is essential. CHALLENGING JOURNEY
In order to understand the complexities of rare disease marketing we have to understand the challenging journey a patient with a rare disease faces when seeking diagnosis, treatment or a wider intervention. When a disease is rare, knowledge of the symptoms, or collection of symptoms, and what that could indicate disease-wise is rare too, and a generalist healthcare professional (HCP) may not be aware of the signs associated with the rare disease – ultimately not realising the disease is present A comprehensive understanding of in a patient. the patient journey and the specific So, obtaining an accurate therapy area ecosystem is required diagnosis of a rare disease can be a lengthy and arduous process2. Each individual rare disease then, Looking at the approaches marketers by definition, has a small patient can take, traditional methods of population which means the affected pharmaceutical marketing aren’t patients don’t necessarily receive the generally as effective for rare disease attention and support they need from for a number of reasons. The patient
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What are the opportunities and challenges for pharma marketers in the UK rare disease environment? WORDS BY Craig Bradley
pool for rare disease is considerably smaller, which means finding patients who have been diagnosed with a rare disease can be a complicated process. This also applies to the number of treatment centres and associated expert HCPs. By definition, clinicians specialising in a rare disease are few and far between and any one individual can be responsible for a large patient population. The ecosystem for a rare disease includes not only the HCPs referring to expert centres, but a much wider and diverse group of stakeholders including the multidisciplinary team (MDT), payers and policymakers, plus patient advisory groups who play a vital role in representing the patient voice. A comprehensive understanding of the patient journey and the specific therapy area ecosystem is required. A thorough mapping of this ecosystem allows us to form a detailed picture of the different stakeholders involved, alongside the individual patient journeys and flows, which ensures interactions can be tailored to meet their needs at each touchpoint. Once this level of understanding is attained there’s a real opportunity to become a real partner to the key stakeholders, with tangible opportunities to improve patient care.
