2011 Award Winner Profile
Norwegian PH Association
by Hall Skåra
PH Patient and Founder of the Norwegian PH organization
Hall Skåra (far left) and attendees of the first PH patient meeting in Norway
In September 2011, the Norwegian PH organization ran its first patient meeting which brought together 14 PH patients and eight caregivers. “It was great to meet some of the other PH patients,” one of the participants expressed. “I have had PH for many years, and I have never met another person with the same disease. It is wonderful to meet and talk to other people that understand me and my situation!”
The Norwegian PH Association developed a comprehensive two-day program with several prominent speakers. However, the greatest benefit of the conference was the opportunity to meet with other PH patients and caregivers. Valuable friendships were formed and lots of information was exchanged.
A leading Norwegian PH specialist gave a presentation about the disease and the treatments available in Norway. Patients in Norway are fortunate that they do not have any restrictions as to which medications are available. Moreover, the medications are free of charge due to the centralized public healthcare system. One method of PH treatment that received particular attention was the implanted pump. One of the attendees had this pump installed and demonstrated it in front of the group. The implanted pump is working very well for this patient, and it has enabled her to continue her work as a full-time nurse at a clinic for people with lung and heart diseases.
In addition to the lecture by the PH specialist, leaders of a rehabilitation clinic discussed their rehabilitation program. Although patients with other heart and lung diseases primarily attend the program, they also have experience in helping PH patients. In spring 2012, they will run a rehabilitation program consisting only of PH patients.
Other presentations included the psychological challenges of living with a chronic illness, a patient’s private survival guide, PH medications of today and the future, and resources for newly diagnosed patients and their caregivers.
Another goal for this first patient meeting was to increase awareness of PH since it is estimated that there are many people living with the disease in Norway who have not been diagnosed. Current media successes have included an article about PH that was featured in a local newspaper which has 36,000 subscribers. The leader of the Norwegian organization and the leading PH specialist were also recently interviewed in a radio program that was aired nationwide.
The patient meeting was a great success and will be repeated next year. The meeting was made possible through a contribution from Actelion Pharmaceuticals US, Inc. and a Tom Lantos Innovation in Community Service Award supported by Gilead Sciences.