Dear MEPs, dear all,

My name is Hall Skaara, and I am here to share my story as a respiratory patient.

For most of my life, I lived very healthily. I exercised, ate well, and took good care of myself. That’s why it felt almost like a betrayal when my body suddenly failed me. I was diagnosed with a serious, chronic, and life-threatening lung disease called pulmonary hypertension.

It was a shock. At that time, the average life expectancy after diagnosis was only five years.

Pulmonary hypertension means high blood pressure in the lungs. This creates strain on the heart, because the right side of the heart struggles to pump blood through the lungs. In the end, patients don’t die of the lung disease itself, but of heart failure.

The EU is working on a cardiovascular plan. I want to ask you to please make sure that lung diseases are included in this plan. My case shows why: I have a lung disease, but will most likely die of a heart disease. The two are deeply connected.

My disease was not preventable — I still don’t know what caused it. But I have done everything I can to prevent deterioration. And maybe I’ve done something right, because I am still alive and kicking 20 years later. In fact, I just finished writing a book about my experiences — about how to live with this disease and how to prevent deterioration. It will be published later this year, and I hope it will help others with pulmonary hypertension or other chronic illnesses.

PH affects both men and women, young and old, but about 75% of patients are women.

I live in Norway, where I am fortunate to have very good healthcare. I have access to all treatments free of cost. But it breaks my heart to see patients in other parts of Europe who do not. I remember a patient, a young mother, who was diagnosed after me. She once said: “It’s like being invited to a wonderful dinner, seeing all the good food, but not being allowed to eat any.” But in her case, unequal access meant much more than frustration — she died prematurely, many years ago.

Another important group is patients who develop pulmonary hypertension because of an underlying lung disease. This disease group is called PH-ILD. These patients have no treatment options today, and their prognosis is extremely poor. This is why we need to support pharmaceutical legislation that encourages drug development. Fortunately, several companies are now conducting trials in this area, and I truly hope these medicines will be approved in Europe and made available to all patients, in every country.

The most common symptoms of PH are shortness of breath and fatigue. Because these symptoms are so unspecific, it is difficult to diagnose. At our patient association, PHA Europe, we work hard to raise awareness so that patients can be diagnosed earlier. A recent survey showed that the time from first symptoms to diagnosis is now around 18 months. That is still far too long — but it is about half of what it used to be 10 or 20 years ago. Progress is possible.

Finally, I want to stress the importance of rehabilitation and holistic care. In Norway, we have created programs that combine medical treatment with support from psychologists, nutritionists, social workers, and even legal advisors. Treating the whole person — not just the disease — makes a huge difference.

Dear all, pulmonary hypertension is a rare disease, but it teaches us broader lessons: the connection between heart and lung, the devastating consequences of unequal access, the urgent need for drug development in neglected patient groups, and the importance of holistic care.
And one last point: we cannot ignore climate change. Patients with lung disease struggle with extreme heat, and pollution makes our situation even worse. Environmental policy is also health policy.

Please keep us in mind when you shape the future of healthcare in Europe.

Thank you.