As the Eighth International Congress of the Swiss Society of Pulmonary Hypertension was taking place in Zurich last month, a new challenge to treating people with PH was emerging in Europe.
The Russian invasion of Ukraine has disrupted the supply of food, medication and other essentials to people in Ukraine and Russia. The supply disruptions have caused life-threatening challenges for people with rare and chronic diseases, especially those with PH.
The Pulmonary Hypertension Association’s partner organizations have been taking action to provide aid and facilitate medical treatment ever since the invasion began. They are working with patient groups, health care providers and pharmaceutical companies throughout the world to improve treatment access for those affected by the war.
Recently, I heard from Martha, a volunteer for the Foundation Against Pulmonary Hypertension in Spain. Martha, whose son Daniel has PH, shared an example of the PH community’s outreach. The foundation recently welcomed two women from Ukraine: Olena, who has PH, and her caregiver daughter Hanna.
“We are very sad to leave our family and friends, but my mother’s health was in danger in our country,” Hanna told Martha.
The Pulmonary Hypertension Association of Ukraine, which assisted Olena and Hanna after they fled to Poland from Kharkov, contacted the Spanish foundation. The foundation secured residency permits, housing and health care for Olena and Hanna. Within a few days, Olena received a heart catheterization and genetic testing because other members of her family have died of PH. Olena also will receive free PH treatment in Spain.
Olena and Hanna’s experience is one of many similar stories throughout Europe, where the PH community has come together to help those affected by the war.
Thanks to a coordinated effort by the Pulmonary Vascular Research Institute (PVRI) in the UK, drug manufacturers have donated PH medications via the Cardiac Society of Poland. The medication will be delivered to people affected by PH in Ukraine and those seeking refuge in Poland.
PVRI Chairman Paul Corris stated: “The PVRI is proud to have used its global influence and collaborative approach with industry to facilitate the delivery of drugs to those affected by the conflict in Ukraine. We are expecting to have similar success working alongside other pharmaceutical companies in providing the full range of therapies available and to all patients affected by this terrible war.”
Those of you in the PH community know of the importance of continuing PH treatments. They are essential to sustaining health and quality of life. Patient organizations can’t provide drugs directly to people with PH, so we thank our industry partners – PH treatment manufacturers – for stepping up to providing critical treatment access.
PHA supports and applauds PVRI’s coordination, as well as humanitarian efforts by PHA UK, PHA Europe and its Ukrainian and Polish member organizations, European Reference Network-Lung, and numerous others.
In times of instability, efforts to provide medication, oxygen, durable medical equipment, food and housing are critical to our community.
As we look ahead to World PH Day in May, it’s important to remember that such efforts are critical not only in Ukraine and surrounding countries affected by the war. They also are crucial for PH communities from Afghanistan, to Ethiopia, Syria and Yemen, and other parts of the world affected by war, poverty and disasters.
As always, please feel free to share your own experiences and suggestions. I look forward to hearing from you.
With gratitude and respect,