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Since three years we have been holding discussions with representatives of the Ministry of Health that the adoption of a cystic fibrosis treatment standard based on the current European consensus will finally allow a multidisciplinary approach in the follow up of patients and will help establishing a National Centre for Cystic Fibrosis. These combined measures would prolong survival 2, even 3 times. We have just got to the Minister of Health – and now there is a threat to get back to the starting point and then again to go explaining what the disease means, what specific treatment, cares and environment it requires. This is what Svetlana Atanasova, chairwoman of Cystic Fibrosis Association, has been telling the media since February. It is very stressful now, that with all the changes in the country, our problems may be left aside again, she said at a press conference in Plovdiv in February, when “Cystic Fibrosis – Let’s Add Life” campaign was launched. At particular moment Bulgaria was shaken by protests and the government resigned.
About a week later, on 21 February, a 12 year old child suffering from cystic fibrosis was gone. Teddy from the small town of Provadia was supposed to go for a treatment in Switzerland, which was planned for March in order to get stabilised and eventually be included in a waiting list for lung transplantation. Many people from across the country had contributed to a fund-raising campaign for the treatment of this boy. Unfortunately, he was just another cystic fibrosis patient that passes away in expectation and hope that the health authorities would take measures to solve these problems. These people, however, can not get out to a mass protest. They live with the feeling that their voice for equal access to adequate treatment would never be heard.
On February 14, on a meeting at the Ministry of Health with medical professionals it was decided to establish a working group to transfer and implement the much needed European consensus standard for the cystic fibrosis treatment. There is no evidence, however, that the cabinet has yet to officialise the work on this task force, Svetlana Atanasova says.
All these issues, together with the personal stories of patients with cystic fibrosis and their families has became the focus of a meeting with the candidates for the Bulgarian legislative elections in early May. During this specific occasion forum, F2F TV journalist Ekaterina Kostova tried to show the public whether a cause related to human health, may bring together policy makers particularly during the period of election campaign when anyone is ready to promise anything. 7 of the 17 invited parties and coalitions responded to the call to hear the voice of people with rare diseases. Now, when 3 of these parties are already in Parliament, patients and parents will insist legislators to do their job because of the public commitment they made not to sink cystic fibrosis problem down into the total disorder of the health system.
For the family of Pavlina and Dragomir Sivakovi these problems mean daily struggle. Not only because their 4 years old son Toshko suffers from cystic fibrosis, but also because of the inadequate treatment that the health system is offering to these children. Until he becomes 6, he can not use inhaled antibiotic by the National Health Insurance Fund. That means that bacteria would be “eating” away of his lungs for two more years, his father adds. All parents are in similar situation. Because of the inadequate treatment, life expectancy for cystic fibrosis in Bulgaria is about 12.5 years, while in Europe it is almost 50.
I’m tired of being positive. Every day is a similar type of struggle and nothing depends on me. It is the health system that takes the decision and does not allow me to change my medications, even if they are no longer efficient. I feel doomed, 29-year Boryana Lazova of Pazardzhik tells. Over the past two months she got a serious infection and urgently needed to be hospitalised. Her friends launched a campaign to collect funds for the expensive antibiotics and vitamins that she needs to take. She was firstly helped by Kamelia Atanasova, another cystic fibrosis patient, who gave her own medication.
And if there is no one to help gathering funds for expensive drugs in such an emergency? What happens, patients and families ask.
Cystic Fibrosis Association explains that the problem is that there is separate clinical pathway for cystic fibrosis and these patients are treated within the bronchopneumonia pathway. There is a penultimate resolution of the court on this case. Ministry of Health has allowed discrimination against patients with cystic fibrosis, as there is no independent clinical pathway for the treatment of this disease. That is the decision of the Sofia Administrative Court from March. It confirms a previous decision by the Commission for protection against discrimination. But the Ministry of Health is currently appealing it. What will decide the Supreme Administrative Court? This is the question that people affected by cystic fibrosis expect with a sinking heart. Every day means life for these patients.
Searching for institutional and public support, the “Cystic Fibrosis – Let’s Add Life” campaign created a Facebook page that tells stories of people suffering from the disease, as well as presents initiatives, helping the cause for the introduction of the so called European standard of treatment. It also organised a journalistic competition to persuade media to put the focus of attention on this subject, which is vital for many Bulgarian families. The good news is that more and more people are taking part in this campaign, as dozens of media are becoming aware of the cystic fibrosis treatment problems. It turns out that people want to help and contribute to the extent possible.
A charity sale of handmade cards in Total Sports Club collected 107.40 Levs that were used were for buying oxygen concentrators, without which in emergencies people with cystic fibrosis can not breathe. Another sale of charity cards donated funds for the treatment of Boryana Lazova. 1779.10 Levs for oxygen concentrators were gathered from three more charities: June 1st kids workshop, charity event “Sissy” in Kocho Chestimenski School, and rock concert of RENEGADE and IVORY TWILIGHT groups at the Plovdiv Theatre.
Within the “Cystic Fibrosis – Let’s Add Life” campaign, two patient rooms and a medical office for cystic fibrosis were renovated and quipped at the University Hospital “St. George” by donations. Svetlana Atanasova says that means a lot for the cystic fibrosis patients, because high hygiene standards and separate rooms help avoiding cross contamination. It shortens the period of treatment and improves therapy quality. Plovdiv Metropolitan Bishopship donated icons of the Virgin Mary to protect cystic fibrosis patients. In August Plovdiv Metropolitan Bishop Nikolay will personally support the campaign.
Sustainable solution of the problem of access to quality treatment follow-up of people suffering from cystic fibrosis, however, can only happen with the support of politicians. Therefore “Cystic Fibrosis – Let’s Add Life” campaign continues to seek wider and wider support. The Ombudsman of Bulgaria Konstantin Penchev has already stood beside the patients with cystic fibrosis and their legitimate quest.
The solution is not just about money, on the contrary – it can even save money. The legislative framework needs to be changed to provide a new approach to rare diseases, Vladimir Tomov, chairman of the National Alliance of People with Rare Diseases says. The Ombudsman assured that he will not only help Cystic Fibrosis Association meet the Minister of Health Dr. Tanya Andreeva, but he is also committed to implementation of the European consensus standard, as he has already supported other patient with rare diseases to solve their problems. He received the proposed changes that would help patients with cystic fibrosis get a chance to access quality treatment and have a better life. The Proposals were also sent to the new Minister of Health along with a request for a meeting.
And while people with rare diseases are waiting for their health and life to be finally put on the agenda of the Bulgarian politicians and lawmakers, the World Organization for Cystic Fibrosis is ready to help the Bulgarians cystic fibrosis patients and donate about $ 1 million for the creation of National Centre for Cystic Fibrosis. These funds are not in cash, but rather in medication, supplies, training of medical staff for one year, but if only the government ensures that it will continue supporting the Centre after that.
Now, it is health authorities’ and politicians’ turn. They must finally hear the voice of people with cystic fibrosis. And to do their job, so that access to quality healthcare in our country is guaranteed for everyone. “Cystic Fibrosis – Let’s Add Life” campaign will continue until that happens… You can start supporting by the liking its Facebook page.

Text and pictures are part of the “Cystic Fibrosis – Let’s Add Life”, campaign of Cystic Fibrosis Association to adopt the European consensus standard for the treatment of this disease in Bulgaria. Special thanks to Ms. Svetlana Atanasova, chairwoman of Cystic Fibrosis Association and to the journalist Ms. Ekaterina Kostova.
Facebook page of the campaign