INTERNATIONAL FACES OF PH
Todor Mangarov, Bulgaria
My name is Todor Mangarov, and for 13 years, I was an officer in the Bulgarian army. During this time, I was very physically active and often went scuba diving and skydiving. I played football for two hours at a time, but by late 2005, I started feeling short of breath. I didn’t think too much about my breathing problem; at the time, I smoked about 40 cigarettes a day and thought that the cigarettes were causing my health problems. In the summer of 2006, I stopped smoking, but my symptoms did not improve. My office was on the fifth floor, but I could no longer climb the stairs all at once.
It was at that moment that I understood something was wrong, and I went to the doctor on Sept. 20, 2006. I was also admitted to the hospital with another problem — an abnormal heartbeat. The doctors could not find a cause, so I met with a cardiologist in Pleven, Dr. Tsvetemira Chorbadzhiyska, and after only three days, she diagnosed me with pulmonary hypertension. I went to the best military hospital in my country, the Military Medical Academy Sofia, where they confirmed on Oct. 10, 2006, that I had chronic thromboembolic PH (CTEPH).
The Bulgarian Health Act stipulates that medications for patients with rare diseases are free, but at the time of my diagnosis, the Bulgarian Ministry of Health did not provide free medications for patients with PAH. The average salary in Bulgaria is about $357 per month, and the treatment of patients with PAH costs from $1,000 to $3,570 per month. By 2010, patients with PAH were still not treated because they could not afford their medication.
For an entire year, I wrote letters to the Bulgarian Ministry of Health about providing free drugs for the treatment of PAH. The Ministry did not respond positively, and in 2008, I began a lawsuit against the Minister of Health because of the discrimination against PH patients in Bulgaria. In January 2011 I won the case, and from March 2011 onward, all patients with PAH are being treated with free drugs, which include RevatioTM, Iloprost, TracleerTM and VolibrisTM.
I also created the Pulmonary Hypertension Association of Bulgaria (APH Bulgaria) in 2009. APH Bulgaria helps patients with PH obtain more information about their disease and get medical attention at the nearest PH center. In 2010, our group helped to establish criteria for PAH and identify four PH centers in Bulgaria.
Unfortunately, Bulgaria does not offer financial help to patient associations because these associations represent errors and gaps in healthcare. APH Bulgaria is supported only with funds from donations, but the global financial crisis strongly affected our country. In 2010 and 2011 we had very few donations, and Bulgaria is the poorest EU country. APH Bulgaria does not have an office or office associates. My friend, Vanya Toteva, helps APH Bulgaria free of charge. Although we don’t have much money for projects, we do what we can for PH patients.
Currently, there are about 40 diagnosed PH patients in Bulgaria, and we are connected to 37 of them. According to statistics in Bulgaria, there should be about 150 patients diagnosed with PH at this time. The fact that there are only 40 diagnosed patients indicates that PH is not well known here. In 2012, our goal will be to focus on specialists — cardiologists and pulmonologists — and educate them about PH.
From diagnosis to now, I have been treated with RevatioTM. In July 2011, I had a successful operation to remove my blood clots in Vienna in the clinic of Prof. Walter Klepetko. The surgery is known as a pulmonary thromboendarterectomy (PTE). In October 2011, APH Bulgaria helped a second patient with CTEPH to undergo a successful operation in the same clinic. We will continue to help others with this disease.
By Todor Mangarov