Euromedica | Rare diseases, rare characters – Why the Orphan sector differs when recruiting for top positions
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Rare diseases, rare characters – Why the Orphan sector differs when recruiting for top positions


Rare diseases, rare characters – Why the Orphan sector differs when recruiting for top positions

What qualities should top the list when orphan drug companies recruit senior talent in clinical, medical, regulatory and commercial functions?

The obvious answer is expertise. Because orphan diseases are so rare, often involving complex pathologies, and the regulatory pathways so complex, people with relevant experience can be difficult to find and are therefore doubly prized.Although this will become easier with time, as the market grows, it will remain a key challenge for the foreseeable future.

But there are two other qualities that are crucial to consider, even though they are far harder to pin down.

First, compassion for patients. Yes, this is often cited as a key value across the Pharmaceutical industry. But when it comes to companies in the orphan sector, we need to really mean it, because the level of interaction with individual stakeholders is almost unique in the industry.

The patient population for orphan diseases can be tiny, with many rare diseases affecting less than 10,000 people in the US and just one in 2,000 in the EU.[1] While standard clinical trials can involve thousands, and even tens of thousands of people, speciality drugs for orphan diseases have been tested on a hundred or even fewer.

Because of their rarity, the diseases can be very hard to diagnose and understand, even for specialists, and treatment is often extremely expensive. One drug – uniQure’sGlybera, a gene therapy for lipoprotein lipase deficiency – costs $1.6 million (euro 1.16 million) for a single treatment. At least 10 others cost over $200,000 per patient per year.

Together, these factors mean that orphan companies often engage directly with individual patients. Not only may they know their names and medical history, they might even maintain contact with them over the course of their treatment.

Many companies also become involved with the relevantphysicians and other stakeholders such as patient advocacy groups, who have important roles to play supporting families, finding patients for clinical trials and raising awareness of the condition and its treatment.

Naturally, utmost sensitivity is called for, and orphan drug companies must make a special effort to find team members with a suitable temperament to deal with people who may be suffering from poor quality of life and poor prospects.

As “compassion” does not appear on any CV, try to find evidence that candidates have applied it in previous positions. If they are moving from a more generic area, or if they have an academic background but no industry experience, find out why they want to move to a rare disease company. Do not let clichéd statements about patients being “important” slip away unexamined. Dig deeper, to understand why they feel this way.

A second trait to search for is creativity, particularly when it comes to candidates who will be involved in the regulatory process. Because orphan diseases are – by definition – so rare, there is often a lack of regulatory precedent, and the regulatory agencies often do not understand the illnesses (why should they, when even specialists may have trouble?).

To forge a path through unchartered territory, original thinking is crucial. This will only become more important as the orphan drug market matures, and the agencies toughen up on regulatory standards, which are still sometimes relaxed to help patients with chronic and degenerative conditions, who are short on time.

Again, look for signs that your candidates have thought outside the box before, even if they do not come from an orphan company background.Ask how they would handle theoretical cases, or overcome difficulties you have encountered in the past.

Technical skills are a must, but they are not enough. Look for exceptional, rare characters – as only befits companies dealing with exceptional, rare diseases.

Michael Ade and Frank Lippens are senior partners at Euromedica, an international Executive Search Consultancy specialising in global leadership search in life sciences. Both have extensive experience in recruiting for senior leadership roles in the Orphan drug sector.