Johan Prevot, International Patient Organisation for Primary Immunodeficiencies

Life changing

Johan Prevot, executive director of the International Patient Organisation for Primary Immunodeficiencies (IPOPI), tells Rob Spalding why he takes such personal interest in his job

RS How long have you worked in healthcare?

JP How time flies! It has actually been 18 years now. Prior to joining IPOPI in 2010 I held various positions at the Plasma Protein Therapeutics Association (PPTA) a Brussels-based trade association.

RS How long have you been with IPOPI and how did you get the job?

JP I joined IPOPI in June 2010 as Director of Global Development and became Executive Director the following year. When I was with the PPTA the most satisfying side of that job was the liaison work I did with stakeholder organisations, in particular patient organisations like IPOPI. I found their dedication towards improving the lives of the patients they represented truly remarkable and I discovered the biggest personal satisfaction at the end of the day was the work I did with them. Patient organisations can bring about life changing outcomes for their communities. Getting diagnosed and on the right treatment is life-changing for PID patients and their families. The impact goes well beyond their health on social, economical, professional, educational and psychological levels.

RS Which specialisation attracts you most?

JP My academic background is in communications and PR but I quickly specialised into public affairs and more specifically into health policy. Patients are experts in their own condition and patient advocates have become experts in ensuring the viewpoints of patients are taken into account in healthcare decision-making. In the field of primary immunodeficiencies (PIDs) we are confronted with many different issues, such as the low diagnosis rates and suboptimal access to treatments and care. Patient advocates bring invaluable experience and expertise into health policy discussions and are at last being recognised as equal partners with other involved stakeholders.

RS What is your main target for the development of IPOPI?

JP IPOPI is an international association representing national member (patient) organisations (NMOs) many of which are run by patients or parents on a purely volunteer basis. In the last few years IPOPI has developed into a truly global organisation with 63 NMOs in all regions of the world. Whilst this is a great number compared to a few years ago, we know there are many more PID patients in other countries whose interests and rights are not yet represented. Making sure that they are one day is our ultimate development goal.

RS What is IPOPI’s reason for existence?

JP The mission of IPOPI is to improve awareness of PIDs and optmise access to early diagnosis and care for PID patients worldwide. Our activities include advocacy, awareness, development, and, more recently, clinical care educational projects. One of the highlights of our advocacy campaigns is Severe Combined Immunodeficiencies (SCID) newborn screening. We are advocating for the global implementation of newborn screening which provides a unique opportunity to diagnose babies born with SCID, one of the most severe forms of PIDs (often referred to as the ‘bubble boy’ disease). Early diagnosis enables the administration of life-saving bone marrow transplantation or gene therapy within the first three to five months. This treatment actually cures, meaning babies, who might otherwise have died, have a chance for a normal life.

RS What is the set-up in the office?

JP Eight years ago I was the only full-time staff member. Now we have a great staff of seven, a fantastic board of directors, medical advisors and of course our network of NMOs. We also work with consultants on specific projects.

RS Apart from improving the fortunes of IPOPI, do you have any secret personal ambitions for your career?

JP Contributing to the larger cause of rare diseases has always been and will continue to be a strong personal ambition. Investing myself into the cause of the Down Syndrome community is a more personal ambition. I am the proud father of a wonderful little boy called Lucas who, when he was born, brought with him an extra chromosome 21. This has turned out to be one of the most humbling and rewarding experiences of our life. My wife and I have discovered the huge potential of Lucas who is a brilliant, curious and joyful three-year-old, currently learning a third language! It is very important for us to improve people’s perceptions of Down Syndrome and help them realise the huge contribution those with Down Syndrome can make to our society.