Patient organisation interview, Danijela Pešić from Pulmonary Hypertension Serbia
Danijela Pešić, CEO and founder, tells us about the main challenges facing people with pulmonary hypertension and the efforts of Pulmonary Hypertension Serbia to tackle them.
Picture: Pulmonary Hypertension Serbia at the 2016 PHA Europe Conference in Barcelona
Can you tell us about Pulmonary Hypertension Serbia and your area of work?
I'm 40 years old and have been living with pulmonary hypertension (PH) for 38 years. At the end of 2015 I founded PH Serbia in order to try to help all those affected by the condition. I wanted to do something to ensure that young people should not have to live the way my family and I have lived for so many years.
Raising awareness of PH is the main activity of most PH organisations worldwide, including ours. This is the only way to make the problems for people affected by PH visible, and to move towards a solution.
What are the main challenges for people affected by PH in Serbia?
PH is a rare, severe, progressive and deadly condition. Worldwide, there are 14 different types of medication to treat the condition available. However, there is ultimately no cure. In Serbia, only one of those 14 medications is available.
This lack of treatments increases a person’s likelihood of dying as a result of their condition – especially among young people and children. If a person with PH is not treated, they will die within 2.5 years on average. Every day of not having treatment cannot be given back. People affected by PH live in fear, with no drugs, without basic medical supplies, such as oxygen, and without hope for a better tomorrow.
A person with PH can only be cured through lung transplantation – and sometimes lung and heart transplantation. But lung transplantation is not yet available in our country – as with many countries in our region. The biggest challenge for a person with PH is to survive and stay optimistic in such inhumane conditions and without adequate treatment and medical care.
What are your recent achievements?
Forming national registry of PHA patients
We have taken the first steps towards creating national registry of people with PH.
Establishing an association of PH doctors in Serbia
We organised a meeting with PH medical experts and the directors of four clinics. We agreed on the importance of forming a doctors’ PH association to help put pressure on the Serbian government about important PH-related issues.
SMS fundraising service for PH centres
We have received about 1,700 SMS messages, raising around 1,400 euros for our cause. It will be used to buy equipment, including oximeters and sphygmomanometers for measuring blood pressure, for PH centres in Serbia. Oximeters will be also given away to emergency departments centres in Serbia.
- Almost all people diagnosed with PH started using sildenafil medication
- All people with PH who need to use oxygen therapy can now get stable oxygen concentrators on their health insurance
- All 20 registered children with PH in Serbia are now getting bosentan therapy.
- We won the Pulmonary Hypertension Association (PHA) Europe’s 1st prize in Barcelona this year for best project on raising awareness of PH.
- We participated and represented the PH community in the biggest regional seminar for rare diseases in Split, Croatia.
Do you work with other organisations?
PH Serbia is a member of PHA Europe, an organisation with members in 33 European countries and 39 national organisations. We are also active members of National Organization for Rare Diseases Serbia (NORBS), and we collaborate with the European Patients’ Forum, the European Respiratory Society and the European Lung Foundation, and we are using the European Patient Ambassador Programme.
Could you tell us about your plans for the Sahara ultramarathon next year?
Our main project for 2017 is ‘PH Serbia Team – inspired by hope’. We want to raise awareness of PH during the Sahara ultramarathon on 30 April, 2017. Two runners in the team –a world champion and a European champion – will run in honour of people with PH and other lung conditions in Serbia and around the world. We want to show everyone how people with lung problems feel – as we are often out of breath. Our competitors will film the whole race, and then we will make a movie out of it. Currently, we are focusing all our energy to find sponsorship for the race so that we can realise this difficult project.
What else does 2017 hold for you?
We want to actively raise awareness about pulmonary hypertension – through media and the publication of books for young children, to help with the inclusion of children with rare diseases.
Each year, we also organise big events with the support and involvement of the Serbian football and basketball teams to provide sporting activities for children.
Training for healthcare professionals, as well as seminars and meetings for patients are also planned for 2017.