The annual PHA Europe conference was held in Berlin September 13th to 16th. A patient, Viktoria Burbura, represented  the «Sister Dalila» Charity Foundation and PHURDA at the conference. Traditionally, the speakers at the conference are usually from pharmaceutical companies producing PH medication plus leading PH specialists. In this way, patients are able to find out the latest news and trends in the treatment of pulmonary hypertension in the world.

This year the following companies were present: Bayer (Tomas Ernst, Wolf-Dieter Rakutt), Actelion (Alessandro Maresta, Joelle Rebetez) and Arena (Jörgen Persson).

Bayer entitled their presentation «PAH: life to live». As indicated by the title, the focus was on the work Bayer does in order to support patients. They focused on the fact that PH instead of being a terminal condition now often turns into a chronic condition due to good medication. They pointed out that the patient’s voices have become louder over the years, and, as an example, referred to a patient who said: «There is still life to be lived with PAH!» Bayer is helping by creating online material for patients and carers. There will, among others, be many videos available to support this topic. 

Actelion also work on the same lines as Bayer. They have created an advocacy platform called PHuman. It’s divided into four parts: diary, eBook, careers and hobbies and self-management series. Here patients and carers will find a lot of useful information. Many patients have contributed to this platform – among others a young PH patient from Ukraine who talks about her hobby. Actelion has also given a lot of focus to young patients and presented a brochure about how to best support young adults living with PAH.

Arena is a new player in the PH market. They are developing a new medication which is an oral prostacyclin. This type of medication has great interest for PH patients as prostacyclin up till now has been administered by an cumbersome pump. By replacing this by a pill, the life quality of the patients increase. Actelion has already a comparable medication on the market (Selexipag), and Arena talked a bit about the expected advantages of their medication. The half life, for example, of the medication was much longer than the Actelion’s pill, and this means that the patient only needs to take one pill during 24 hours. The trial in ongoing at the moment and a result is not expected before the end of 2021. Hopefully the result is positive and we will then be able to welcome another effective treatment of PAH to the marked.

There were two PH specialists talking at the conference. The first was prof. Dr. Hanning Gall from Giessen’s clinic. The clinic has the largest biobank in the world, where samples from more than 3000 patients are collected and stored. They use this blood bank to, among others, try to find new biomarkers for PH. The goal is to find markers that would give 100 % accurate diagnosis of PH. In this way, it would be much easier to diagnose new patients and this would dramatically reduce the number of undiagnosed patients. Furthermore, life expectancy would increase as patients would be put on proper medication at an earlier stage than before. The Giessen clinic also runs a trial called «Pegasus». This tries to find out what effect airline travels have on PH patients. Anyone can register for this trial, and they will receive an oximeter for free that will be used to check the O2 level in the blood during flights. Simply write to pegasus.studie@gmx.de and get further instructions on how to participate in the study.

The other PH specialist that talked at the conference was Prof. Hanno H. Leuchte. The name of his presentation was: «Therapies in PAH, is your goal my goal?» He talked about that patients seem to have a different goal with therapies than health personnel. Patients want to feel better and have better quality of life when taking PH medication. Doctors are more concerned about biomarkers, pressure in the lungs, six minutes walk, etc. The conclusion of his speak was that the goals are really identical. Because if your medication condition improves, so will also the quality of life and energy level also.

Patient organizations also make valuable contributions at the conference. This time Ieva Plume from the Latvian association had a workshop entitled “National Progress in Access”. In essence it was a three-way masterclass: a patient organization that seeks to help critical patients, authorities who do not have the funds for expensive medicines and a pharmaceutical company that is interested in earning money on medication. This was a very useful workshop in order to understand the point of interest of the different stakeholders. This will make it easier when going through this type of negotiations in a real life situation.

Peter Bäärnhielm from the Swedish associations also gave an interesting presentation about their work with gaining more members from the patients community. He focused especially on gaining new young patient members. Peter also talked about the Swedish PH registry and about the yearly report that the health personell responsible for the registry makes. The report is available online and is very interesting reading.

Hall Skaara, staff member of PHA Europe and PH Norway, had a workshop on PHA Europe’s new program CBP. This program is meant to help and assist associations to mature. The program has been run in Ukraine with good results. In the workshop, he asked the associations to write down activities that they felt would help their respective associations to mature. He promised to look at the results from the workshop and consider if PHAE could run CBP actives in the given countries. 

Finally, Tamás Bereczky from EUPATI talked about patients in clinical research. The research is becoming more and more patient centric, and pharmaceutical companies often want patients as active members of their steering committees, etc. This is interesting and good news for the patients as these positions were only held by health personell before. With patients involved, the research will probably take a more patient centric approach and focus on issues that are important for patients like quality of life, etc. Tamás described how EUPATI offers training classes for patients that wants to become expert patient representatives that can work together with the pharmaceutical industry for the benefit of all patients.

The PHAE conference in Berlin was both interesting and useful. It is also a great way for PH leaders to meet and exchange ideas. Because as we all know, PAH does not know any country borders.