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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Hall Skåra - phaware® interview 301

Nov 22, 2019

Hall Skåra is a pulmonary hypertension patient from Norway. He became part of PHA Europe’s staff after his diagnosis. He has helped develop their “White Spots” program, which establishes new PH patient associations in countries where they don’t exist.

In this episode, Hall discusses the first ever PAH Patient Charter that was launched on November 12, 2019 to coincide with PH Awareness Month. The Charter was facilitated and sponsored by Actelion, a Janssen Pharmaceutical Company of Johnson & Johnson and a PAH-expert Steering Committee made up of patients, patient advocates and healthcare professionals. #PAHPatientCharter #phawarenessmonth 

My name is Hall Skåra and I live in Norway. I was diagnosed with PH in 2005. At that point, there was no patient association in Norway, so I started one a couple of years later. A couple of years after that, I joined the European PH community, (PHA Europe). I've been working as a staff member there. During this last period, I was the interim president for PHA Europe.

Today, I would like to talk about the PAH Patient Charter, which I think will be important for the global PH community.

But let me just talk very briefly about pulmonary hypertension first. PH is also referred to as the other high blood pressure. You measure the blood pressure on your arm, which is the regular pressure, but then also you have blood going through your lungs, and sometimes this blood pressure is elevated. [If so] then you get a disease called pulmonary hypertension [PH]. This can be caused by many different things. In my case, they don't know why I have this, so they call it idiopathic.

It is really difficult to detect. It does require an invasive procedure. You have to put the instruments inside your heart and lungs in order to get 100% accurate diagnosis. This is called a right heart catheterization. One of the reasons why it's difficult to detect is that the symptoms can easily be confused with similar symptoms to less serious illnesses. The symptoms could be one or more of, for instance, shortness of breath, water retention, fatigue, chest pains, dry cough, blue lips and fingers, et cetera.

When a patient goes to a doctor and complains about shortness of breath, the first thing the doctor will think about this, that this patient is out of shape, maybe has asthma, maybe he has COPD, et cetera. So that's why it often takes a long time to get an accurate diagnosis. Unfortunately, [for patients,] their disease gets worse and by the time they get their final diagnosis, they are often in quite bad shape.

I was invited by Actelion, which is one of the pharmaceutical companies, to take part in a meeting. I was there as the patient but also as a representative of PHA Norway and PHA Europe. Together with me,[there] were other patients. There were representatives from the PH Association communities around the world and also healthcare professionals. We were invited there to make a PAH Patient Charter. This Charter that's based on the ESC/ERS international guidelines for diagnosis and treatment of pulmonary hypertension. It was developed from the output of this meeting. The reason we developed this is that we want to create an easy-to-read overview of what you can expect as a patient when it comes to diagnosis and care of PH.

This PAH Patient Charter can also be used by the patient to enable simpler communication with their healthcare professional so that you together can make decisions and agree on a care plan that is appropriate for you as a patient. I think this PAH Patient Charter will be important for many reasons. Today we are moving towards a more patient-centric care, and the patients themselves, they play an increasingly bigger role in the treatment and management of his or her illness. This PAH Patient Charter will empower the patients since the Charter outlines the standard of wholistic care that everyone would PAH should receive. So, I think this is a first and very good step towards the universal standardized care for people suffering from PAH.

I think there are different ways to use this PAH Patient Charter. One way is, as I mentioned, is for the patient to enable him to talk better to the healthcare professionals. In Europe, there are many countries which struggle a lot when it comes to the treatment of PH. For instance, in some countries they don't even have access to medication. I think maybe the patient associations in these countries can use this, with the support of PHA Europe, to talk to the health authorities and show them what expectations the patient will have to the treatment of his and her disease.

In the past, the doctor would give the patient a pill, and then that's it. We also see when it comes to PH, that other aspects of treatment it’s very important for the outcome and also quality of life of the patient. As this PAH Patient Charter outlines, you need a wholistic approach when dealing and treating with PH patients. This is something that is described in the document. We talk about, for instance, rehabilitation. We talk about what kind of food or diet people should be on. We talk about psychosocial support, guidance when it comes to traveling, et cetera, et cetera.

My hope for this PAH Patient Charter is that it will be to the benefit of the patients and that it will enable them to get even better care that they get today. My hope is also that in some countries where they don't receive optimal care, that this document can be used to achieve better care for the patients.

My name is Hall Skåra and I'm aware that I'm rare.

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