We head to Spain and Denmark in today’s Cystic Fibrosis Around the World blog post. The interviews that came back from each country were both a bit brief, so I felt it appropriate to combine the two. I think this way of doing things actually serves to point out some significant differences despite the relative proximity of both countries.
Denmark will appear in RED font.
Brackets [] indicate any corrections for language or document formatting.
Barcelona, Spain, Anonymous college age adult living with cystic fibrosis.
Denmark, Anonymous child living with cystic fibrosis (parent helped complete the interview).
- About how many people in your country have cystic fibrosis?
1000
450-500
- Do people in your country know what CF is?
No, unless they have known with CF.
Not really. Most people have only heard the name.
- When were you diagnosed? Why were you tested?
8 months. Failure to thrive
When I was newborn. Because I got ill (coughed) right after birth.
- Were you encouraged to be open about your CF? Do your friends and family know that you have CF?
Yes.
Yes, and yes.
- 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?
[Yes] Government provides my healthcare. Not all medications, there are new treatments that haven’t arrived yet to our country.
In Denmark all medication is covered by either the state or the regional officials.
- Do you have access to drug studies/trials? Do you have access to new medications?
Yes, but not all of them, doctors don’t give me a lot of information about drug trials.
Yes. My mum often reads about studies. Well, new medication – only when our clinic recommends it.
- Who is on your CF care team? (Doctors, nurses, etc.)
Pneumologist, gastroenterologist, physiotherapist, nutritonist, phsycologist if you ask for it or in some cases only.
Doctors, nurses, dietician, lung physiotherapists.
- How far away is your CF clinic? Is there a difference between adult/child clinic/care for CF?
60km. Yes, but I’m still in child’s unit so I don’t know what is different.
10 km away. I’m not aware of any difference.
- 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?
Yes [every month]. [In case of emergency] I write a whatsapp to my doctor and she tells me when can we meet or if I have to go to the hospital to get tests.
Once a month, relatively easy.
- If you need IV antibiotics, can you do them at home or do you need to stay in the hospital?
At home.
We always do IVs at home.
- Is the Vest a typical treatment option? What other treatments are common in your area? Which are not?
No [the Vest is not typical]. [Autogenic] drainage, flutter [are typical]. Vipap mask [is not typical].
In Denmark, the vest is not used. We use the PEP mask/flute and/or CPAP.
- Are you encouraged to exercise? Specific?
Not a lot, doctors and physiotherapists tell me that it is good to make exercise but I don’t have any special programs and they do not insist a lot. But my parents do encourage me.
Yes. Not specific
- What CF specific medications/therapies have been developed in your country? Does your country promote new drugs?
No.
Lots of research. One of our doctors has done a phd on achromobacter. I’m not aware of new drugs being invented in Denmark.
- What role does nutrition play in your CF care? Do you have a feeding tube? Do you have CFRD (diabetes)?
An important role, at home we have a very healthy nutrition, but not because doctors tell me to do it. The nutriotionist is very bad in my opinion, her only advice is that I eat food with a lot of calories. No [feeding tube or CFRD].
No tube. No diabetes. Diet is seen as separate from treatment.
- What do you wish could be better about your nation’s care for CF patients?
I think there could be more programs encouraging sport and healthy nutrition. Also there should be more available information about new drugs and trials for patients with CF and a better access to them.
More openness to alternative treatments.
- What do you know about CF Lung Transplants?
I know that people needs them when they have a very low FEV1 and that they are a little dangerous because of the surgery and the risk of rejection but if it works well they will have a lung capacity similar to a healthy person because these new lungs do not have CF.
Not much.
- Did you go to college/university or advance your education elsewhere (Or plan to go to college/university)? Were you encouraged?
Yes.
I’m still in school.
- What is the National CF Foundation (if there is one)? (if there is one) Does this Foundation provide assistance in every day life and education? (example: scholarships, transplant aid, educational materials, etc.)
Fundación española de fibrosis quística. No, I have never been offered any assistance of this kind and if they do I have not been informed about it.
Yes. But I don’t use it.
- 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?
N/A
We get everything paid! Our country has very high taxes. Our medical team is very well educated and nice. I feel lucky to be so well taken care of.
