We head to Skopje, Macedonia to open up the second week of Cystic Fibrosis Around the World.
Macedonia is a landlocked country located in the Balkans, just north of Greece. It is a relatively young country as it gained its independence from the dissolution of Yugoslavia in the early 90’s.
Somewhat of a language barrier did exist between my contact and I. Brackets  indicate places where I made an edit for spelling or language.
Skopje, Macedonia, Anonymous teenager living with CF (completed interview with help from a parent).
- About how many people in your country have cystic fibrosis?
Unfortunately in my country there isn’t [an] official CF register published. Unofficially there were about 124 CF patients few years ago and now the number dropped [to] 105 officially! There are between 12-15 newly diagnosed CF patients per year according CF doctors. CF [has been] known in Macedonia since more than 25 years ago. According [to this stat] there should be at list 300-350 registered CF patients.
- Do people in your country know what CF is?
I have a personal feeling that majority of the people still do not know. The doctors (especially most of the GP’S [general practitioners]) do know what CF is.
- When were you diagnosed? Why were you tested?
[My daughter] was diagnosed at 3 months of age due to our constant complaining about her huge appetite versus her weight gaining, [concern about] her constant crying (we have got the feeling that she [was] suffering a great pain) and we mentioned to her GP that she has got strangely salty skin. We even pronounced her our salty girl which was very unusual for our GP so she asked us how it comes in our minds.
- Were you encouraged to be open about your CF? Do your friends and family know that you have CF?
No, [we] were not. They said it is [a] personal decision. But we were told she might not live [long] enough to go to school. However we were very open and told everybody about her and her CF and what CF is straight away! I guess it was our cry for help for any optimistic news or cry for miracle treatment.
- Does your insurance/healthcare cover costs? Does it fully cover all medications and treatments available to patients with CF? Does the government provide your healthcare or is insurance offered privately?
[It is available in our country. Insurance only covers the cost for a few of the medications/antibiotics that we need for her treatment]. Recently the inhalation therapy (colistin, tobramycin and pulmozyme) is also available on regular bases. Only the basic IV treatment is covered as well. Everything else [for] more specific therapy (for MRSA, fungal infections, NTM, Cepacia…multivitamin supplements, mahnitol, pulmosal [hypertonic saline]…) we are supposed to buy on our own [expense] from EU countries and smuggle the [medication] and supplements [into] our country. It is also very risky as penalties are the same as smuggling opiates. We are also buying on complete private bases the physiotherapy devices and inhalation devices. Those devices are not covered by insurance. If [a] family cannot buy their children can not use. Majority of children do not have enough [financial resources] to buy these devices. We do not have oxygen support for in home. If the patient needs oxygen he needs to stay in hospital.
- Do you have access to drug studies/trials? Do you have access to new medications?
Unfortunately, we do not have access for drug studies nor do we have access to new medications. It is a real shame as for us. It would be the only chance to get any chance to meet the new medicines.
- Who is on your CF care team? (Doctors, nurses, etc.)
Since very recently there are few doctors, few nurses, few physiotherapists on the state level.
- How far away is your CF clinic? Is there a difference between adult/child clinic/care for CF?
There is only one CF clinic in the country. The longest travelling distance to CF clinic is about 200 km. Anyway it is very close to our home. There is no difference between adult/child clinic/care in my country. The same ward, the same nurses and the doctors.
There is no seperate ward for MRSA positive patients or for NTM [nontuberculous mycobacteria] patients.
- How often do you go to the doctor (non-emergency)? Is it easy to get an appointment? What do you do in case of emergency?
It is easy to make an appointment. We are visiting hospital approximately once in 3 months. They would accept us immediately if we [have an urgent medical need].
- If you need IV antibiotics, can you do them at home or do you need to stay in the hospital?
We do need to stay in hospital. The CF Association was working on this issue [for] many many years. However there was no positive response from authorities especially the doctors.
- Is the Vest a typical treatment option? What other treatments are common in your area? Which are not?
The Vest is definitely not a typical option. We do use Flutter or PEP system. It is much cheaper to buy. Many of the devices were donated to the families in few occasions.
- Are you encouraged to exercise? Specific?
No we were not. Contrary we were told from doctors and nurses to keep the children calm and not active so the children are not wasting their energy. [However], I always read what [people with CF are doing] abroad and [follow their advice]. My daughter doesn’t have a specific activity.
- What CF specific medications/therapies have been developed in your country? Does your country promote new drugs?
Nothing at all. Nothing is developed or is developing for CF in my country. We are using only few drug formulas and sometimes even those are not available. [However], we do have regular enzyme supplies for free of charge for CF patients younger than 26 years of age.
- What role does nutrition play in your CF care? Do you have a feeding tube? Do you have CFRD (diabetes)?
We didn’t have any nutrition suggestions, except the CF children must eat a lot of food and lot of fat, proteins and carbohydrates. We do not have an approach to a feeding tube option. We do not have [high calorie] supplements for free and easy to find. CF patients are covered with medications if they do develop diabetes.
- What do you wish could be better about your nation’s care for CF patients?
To be honest – everything. Mostly, I would like to have an approach to newer drugs and to have them covered by insurance or somehow else. I wish we could have an approach to all old antibiotics, not only to few of them. We are [a] poor country and majority of patients’ families don’t have enough money to buy [high calorie] meals not to talk about something else.
- What do you know about CF Lung Transplants?
I do know many things but CF Lung Transplantations. Transplantations are not available in my country. Transplantations are not covered by insurance even in the case a patient could have [it performed] abroad.
- Did you go to college/university or advance your education elsewhere (Or plan to go to college/university)? Were you encouraged?
Yes she is going regularly in secondary school now. She is planning to go to University. Hopefully, abroad! We keep our fingers crossed for that option as it can be the only chance for her to get closer to therapy she needs.
- What is the National CF Foundation (if there is one)? Does this Foundation (if there is one) provide assistance in every day life and education? (example: scholarships, transplant aid, educational materials, etc.)
There is no National CF Foundation. Nobody is helping the CF families in my country. They are left on their own financial credibility. However, there is a CF Association trying to lobby [the legal institutions] for [the patients] and their right to live. Yet there are a lot of obstacles to be overcome.
- Is there anything else you would like to add? Is there anything specific or unique about CF care in your country compared to the rest of the world that you know of?
No, unfortunately there is nothing bright or encouraging about CF treatment we can share with the world. Our CF patients (unofficially) live only 12 years in average. They used to live 13. There is not official [an] CF register. We have a lot of things to be done. [There is a long way ahead of us].