Most people involved in orphan drugs, are passionate about the business. Despite the fact that problems with financing is an issue that never goes away:
– There is no lack of ideas. What is lacking is the finance to take them forward, says biotech enthusiast Jean Nordström of Sixera Pharma.


It’s no secret that around 7 000 known rare diseases in the world today have no treatment. It is no secret either that lack of money is the main reason, that more orphan drugs are not being developed. But that is not stopping drug development enthusiasts, like Jean Nordstrom, Swedish CEO of Sixera Pharma in Spain. A man of vast experience in the pharmaceutical world, who has had a special interest in orphan drugs, for the past ten years. And Jean points out, that contrary to what many people believe, developing the drug itself is not where most of the financing goes.

– Everyone is talking about development costs, but that’s nothing compared to the cost, when you ‘have to go out’.

Jean explains that, as far as rare and uncommon diseases are concerned, a large part of the medical community is still in the dark, including the actual practitioners. And this cost, is usually something that the developers of orphan drugs have to cover as well.

– You will have to do what is not done in the medical schools. You will have to educate the doctors, how to diagnose, how to treat. You educate them, you do things that society should have done.

This is an energy-, time- and money-consuming process:

– You will have to put the doctors into committees, where they can exchange ideas, and so on.

Jean Nordstroms company Sixera Pharma, is currently working on a drug for a rare skin disease called Nethertons syndrome. This is a condition, that a maximum of 15 000 people in the world have, it is estimated.

– The majority of dermatologists, have not heard of this disease, they do not know what it is,how to diagnose and how to treat.

The disease is inherited and recessive:

– A person will have to have the bad luck, to have two parents that have the same mutation in the same gene. Small kids die from it. Inadequate topical, palliative treatment with fats and grease is what is available to treat this at the moment. Children born with this ailment, are called ”red babies”.

Jean believes that ”someone” has to be out there, looking for a cure to diseases like this:

– When you see the patients, it’s horrible.

Like everyone else, Jean Nordstrom who is the co-founder and a shareholder of Sixera Pharma, has to look for investors, who are willing to fund his project.

– There are very few venture capitalists, who are interested in pre-clinical projects.

Jean explains the bottom line:

– On a normal banking scale, biotech is impossible. If everything goes to hell, there is nothing there to sell… It’s a question of using traditional finance criteria, on something that is very odd.

– The venture capitalist should have the possibility of either having the competence to judge, if the project is realistic, if it has a good chance. Or somebody in between, who is retained to dedicate time and efforts and have special competences., who looks at the project and says, ”This is feasible”. But you never know.

In the end, it is always difficult for small biotech companies, to keep going:

– Most of the small biotech companies, will end up being acquired by a larger company.

But despite the difficulty in finding investors, the drive to keep going is still there, for people like 71-year old veteran Jean:

– I am interested in working with the most difficult things. I am not interested in working with new packages of aspirin, in order to sell more…

Robert Okpu, Editor, Copperberg