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While we all follow what happens to coronavirus patients, people with chronic illnesses who previously needed constant medical supervision remain on the periphery. It happens that hospitals cannot accept patients with other complaints due to their COVID wards. What is it like to have a chronic illness in times of health crisis and what are the old problems of the system that are now even more pronounced?
Will chronic disease patients be left untreated?
The answer to these questions is given by the story of Rosi Malinova. Debt and burden. Words that Rossi, 22, uses to describe how he feels today.
“It is a duty to protect their doctors, a duty not to overload the system, which is overloaded and works at full speed. Above all, strange not to be the burden that I am now for my parents, for the system, obviously,” he said.
For her, the journey through the clinical paths of Bulgarian healthcare started 10 years ago, when she was 12 years old. He was diagnosed with cystic fibrosis, the most common of the rare diseases. 3 are the turning points that place her in her position today. When you turn 18, you lose some of your health rights.
“I was a student. I studied public administration at the University of Sofia and this year I would be in my third year. I was a normal 20-year-old who likes to go to the theater, to the cinema, to concerts,” he said.
A year later, she was placed on the waiting list for a lung transplant and, at the end of last year, her condition drastically deteriorated.
“Simultaneously with the onset of the corona epidemic, my condition began to progress. I am currently being monitored on my own. People like me with cystic fibrosis have gained experience over the years and can cope with such situations. My parents are my second caregivers. It’s quite different than at the beginning of the year, when there was still pure pulmonology, “explained Rositsa.
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Most pulmonologies now become COVID wards.
“A person in my condition cannot be admitted because there is no COVID. The path to hospital care is only with a proven test,” he added.
Is our health system fully focused on COVID-19? This is demonstrated by the observations of Stanimir Hasardjiev, president of the National Patient Organization. In the last month, the number of signs of limited access to medical care due to coronary crisis has increased many times.
“Many such examples. Yesterday I tried to help a friend whose father has a lung disease. With 3 negative COVID tests. 7 hospitals in a row refuse to treat this person who is really helpless with a very serious illness. A form of hardship to breathe with extremely high blood pressure. Some hospitals refuse because the patient does not have COVID and others refuse because they do not have places. At the same time, relatives cannot contact anyone, including the general practitioner, “Hasardjiev explained. .
According to him, the problem is not that the hospitals are full, but that the resources in them are poorly distributed.
“We are witnessing a great paradox. We are the country with the highest number of hospitals per capita in all of Europe. We lost many golden months. During this time we were able to make the system so that people with chronic diseases did not have to walk the streets”, said.
Do patients with chronic Pernik’s diseases go untreated?
The patient organization proposes to regulate remote consultations. Become an official practice and not depend on the good will of a certain specialist. Also to consider green corridors for chronically ill or clean hospitals from COVID, adds Hasardjiev. While people with chronic illnesses struggle with chronic accumulated problems. Rossi has been waiting for a lung transplant for three years and his condition is deteriorating.
Lung transplants are not performed in Bulgaria. Our country had a bilateral agreement with a hospital in Vienna for the treatment of Bulgarians, but it was terminated in early 2017. Who is to blame for this, to this day it is a question whose answer depends on who you ask . After two years of scandals and patient protests, and the death of several awaiting a lung transplant, in January 2019 the contract was renewed. But for a short time. The Vienna clinic announces that it will not accept any more Bulgarians so that it can take care of the Austrians themselves. Since then, the Health Ministry has said it will negotiate with other countries, but to no avail. However, last year, a Bulgarian donor performed a lung transplant in Bulgaria, which is considered a great long-term step. Currently, 20 people are waiting for a transplant.
The Medical Oversight Agency, which is responsible for these transplants, told Rossi that they were looking for clinics but turned them down. Even though Kiril Ananiev is Minister of Health, it has been said that by the end of 2020 there will be medical teams in Bulgaria that will be able to perform lung transplants. They receive training in hospitals in Vienna and Hannover. But that promise was made before COVID invaded.
At just 22 years old, Rossi is battling an entire health care system. He also faces another problem: he needs constant gene therapy to stay alive until transplant time. Unfortunately, for Rossi, the drug is not available, precisely because he is 22 years old. After coming of age, it is not covered by the Sickness Insurance Fund nor is it available on the Bulgarian market. In the case, the Health Insurance Fund told us that the specific drug Rossi was looking for in Germany was new. At the European level, it was approved for use in August this year. At this stage, our country has held discussions with the manufacturer and is expected to initiate a reimbursement procedure.
Is there a delay in the care of cancer patients in the crisis?
“Currently, the cost of a month of treatment with the drug is 20,000 euros. I have very severe respiratory failure and now, thanks to a donation drive, I am raising funds for treatment, and the ministry has time to respond and take responsibility. because I am left without the possibility of a transplant, without the opportunity to receive medication and … I can’t find a word to describe how disappointed I am, “Rossi said.
After a query to the Ministry of Health, Minister Kostadin Angelov wrote on Facebook that the manager of the Ministry of Health said that Professor Petko Salchev and the president of the Supervisory Council Jeni Nacheva promised him that in a few days Rossi and another woman with fibrosis cystic will go away. treatment in Slovenia. Discussions are under way with hospitals and therapy will be provided from the Fund’s budget. At this stage, Slovenia is the only country in the European Union where the local health insurance fund reimburses the specific medicine. If Slovenia refuses, the ministry has a plan B for other countries.
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