In 1991, Kamil Hamidullah’s brother was the first person to be diagnosed with pulmonary hypertension in Turkey and, four years later, he was given the same diagnosis himself. Trading in his dreams of being a pilot, Kamil now heads up the Pulmonary Arterial Hypertension and Scleroderma Patient Association (PAHSSc). We caught up with him to find out more.
How does your pulmonary hypertension story begin?
My brother was a military officer and, although his case was the first to be diagnosed in
Turkey, we knew he was not the only one with the disease. At the time, Mom and Dad
started organising awareness activities with their own means and tried to reach other
patients. So that was how the first pulmonary hypertension patient support group was founded in our capital, Ankara, in 1991.
Back in those days, the illness was neither mentioned in books nor was there any information about its treatment methods. We lost my brother rather quickly in 1993. In 1995, it was my turn to be diagnosed with pulmonary arterial hypertension. Experts who were conducting research on the genetic mutation of pulmonary hypertension were looking for pulmonary arterial hypertension patients with no other conditions, which was a long shot at the time. All of a sudden, I became their pop star. As a family we supported these researchers over the following years, taking part in their research study on mutation at universities in the US. Together we strived against the bureaucracy of our country to get epoprostenol treatments approved in Turkey and I became the first patient here to receive a pulmonary arterial hypertension specific treatment. After all these struggles and fights, I found myself as the leader of this disease within our patient community. When I was young, I dreamt of becoming a pilot – but one who flies an airplane, not in the context of his flight forward in his disease.
How did the association evolve, and what does it aim to do?
Our first attempt to set up an association in 2001 was not successful, because of the high mortality rate of pulmonary hypertension patients and the economic crisis the country fell into. In 2007 we joined forces with patients suffering from scleroderma and in 2008 we set up our first association under the name of ‘Pulmonary Hypertension Association’. It survived for six years only and was dissolved in 2014. Finally, we got together once again in 2018 and set up the Pulmonary Arterial Hypertension and Scleroderma Patient Association (PAHSSc). Our aims is to build a more conscious community of patients and caregivers and advocate for correct diagnosis and the right treatments. We have been successful in our efforts to help the introduction of pulmonary arterial hypertension-specific therapies and lung transplantation procedures used in other countries also in Turkey, and our principal aim is to contribute to finding a cure for our illness.
Can you tell us a bit about the day-to-day work of your organisation?
In Turkey finding funds is very challenging so it is difficult to plan ahead, but every year we try to donate a portable oxygen concentrator to a patient in need. We organise online interviews with patients and their relatives to find out about their experiences of every aspect of the illness. We set up other online resources to provide them with information on pulmonary hypertension and we also organise symposiums, not only about the conditions we represent, but on different issues such as lung-heart transplantation. For example, we are trying to raise awareness of the ‘opt out’ organ donation system that is in place in the UK. We hope this will be implemented one day in Turkey. We have a quarterly e-magazine called ‘Nefes’ (which means ‘Breath’ in English) in which we share with our readers what is going on throughout the world via interviews with expert physicians and associations. We are a reliable information source, especially for those newly diagnosed. Also, for the sake of awareness, we have created a 6-Minute Walk game app for mobile phones. Needless to say, it was produced on a low budget and the moment it is only on Google Play.
We have set up a Rare Diseases Network by joining forces with nine other patient associations to find shared solutions to similar problems. In Turkey, we lack a national policy concerning rare diseases. We have accordingly presented all our issues together with our suggested solutions to the Grand National Assembly of Turkey. We may be a small rare disease association but thanks to our significant activities throughout the year, we are the only association among other lung patients’ associations from Turkey to have its voice heard in Europe through the European Lung Foundation.
How is the association funded?
We cannot raise funds , we can’t get support from bi companies; we rely only on individual donations. We are grateful and wish to thank all our donors. We mostly live off with what we can do with our own resources. Once we step outside to seek help, our dependency on others increases. Our association is run totally by the efforts of its patients. At times, we even tend to neglect our health so as not to delay our work. We are all tired warriors. Our first association didn’t survive; we do not wish to lose this one too and that is why we try to do our best.
What is access to pulmonary hypertension drugs / treatments like in Turkey?
As far as reimbursement of pulmonary hypertension medications are concerned, we are well ahead of most European countries, as nearly all our medications are reimbursed [paid for] by the national health service. We express our gratitude to relevant authorities and to those who have fought for this issue. On the other hand, organ donation figures are very low in Turkey. Prior to the COVID-19 pandemic, only 500 deceased donations were made each year and as we all know, not every organ is suitable for transplantation. Statistically, approximately 50 lungs were donated, and 22-30 patients could get a lung transplant. During the pandemic, there was a sharp decrease. Plus, no lung transplantation surgery can be performed on patients younger than 14. Organ donation here is so limited that patients in need of heart-lung transplantations are desperate.
We have a very large population, and our healthcare system is going through difficulties. Pulmonary hypertension specialist centres are few here in Turkey and families have to plan their trips and accommodation needs. As most people live on a minimum wage, the disease naturally becomes a heavy burden for those who live close to the poverty line. Patients do not pay for the treatment itself, but they need to spend at least six times more than the amount healthy people spend for their health in general. Families who depend on medical equipment, like oxygen concentrators, suffer from high electricity bills. In these hard times, people even must pay to get to breathe.
Interview courtesy of the PAHSSc, the Turkish pulmonary hypertension patient association
Cover photo: Kamil Hamidullah, President of the PAHSSc