Have you ever felt like the only person in the whole world with a pituitary disorder? Well, you’re not, as we were all reminded at the 2nd Annual Global Pituitary Patient Advocacy Meeting held in Zurich, Switzerland, September 20-21st, 2013. I was honored to be among 18 representatives of organizations supporting patients with Cushing’s and acromegaly from Australia, Bosnia & Herzegovina, Brazil, Canada, France, Germany, Italy, Japan, Malaysia, Russia, Switzerland, the UK, and the USA. Sponsored by Novartis Pharmaceuticals, this meeting was an opportunity to learn about pituitary patient advocacy all over the world, to hear from experts in the field, and get to know one another and share experiences which are in many ways different, but in many other ways, the same.

Here are some of the highlights of the meeting:

Addressing the Psychological Needs of Patients with a Pituitary Condition: At a previous meeting, attendees felt that this was an extremely important aspect of treatment for pituitary disease which is all too often overlooked. This year Catherine Jonas, a psychotherapist who counsels pituitary patients and their families at Cedars Sinai Hospital in Los Angeles, spoke about her work.

Substandard Drug Copies: the Scope of the Problem: Dr. Atholl Johnson of the University of London, UK, spoke about the issues of quality and safety in generic medication. In the USA, the pharmaceutical industry is more closely regulated than in many other parts of the world, but we are still not without the occasional concern. As medications become more easily available through internet pharmacies, these are issues we cannot ignore.

We shared information about how best to maintain useful and accurate databases of our members, and how to leverage social media such as Facebook and Twitter to raise awareness of rare diseases. The internet can be a powerful tool for raising awareness and funds, and for connecting patients, but there are important considerations regarding members’ privacy and the potential for abuse.

Dr. Deigo Ferone, an endocrinologist from the University of Genoa in Italy, spoke about the need to develop clear, consistent clinical guidelines for the diagnosis and treatment of pituitary disease, and the criteria for centers of excellence for pituitary treatment. Here there were real differences in the availability of treatment in different countries, depending on the type of health care system which is in place, the geographic size, and comparative wealth of a country. Establishing centers in large countries such as Australia, Canada, and Russia and the USA can be challenging for patients who must travel great distances. The health care systems throughout the world differ in how a patient can consult with a specialist. In smaller countries such as Bosnia and Herzegovina, not every region has a center of excellence for such rare illnesses. How can standards be set which would best serve patients in a wide range of circumstances?

I was also pleased to be invited, along with our Australian colleagues, to participate in a European Roundtable with General Practitioners. In Europe, most systems require patients to be referred to a specialist through GPs, so it is especially important raise awareness among these doctors about rare diseases such as pituitary disorders. We discussed the barriers to accurate early diagnosis, such as the slow progression of the disease, the fact that symptoms resemble those of more common ailments, and the fact that these diseases are indeed rare. Still, it is often the GP who first identifies a rare disorder, so the value of reaching these doctors is significant.

The event concluded with a strong agreement that through a global joint effort, advocates for pituitary patients can share our resources and build on each others’ strengths to advocate more effectively for our members, and to know that we are not alone anywhere in the world.

Author: Ellen Whitton, Director, CSRF
Date: Winter, 2013