After a lengthy pause, Cystic Fibrosis Around the World returns with some help thanks to our friends at CF Europe. Cystic Fibrosis Around the World is the longest standing series on the blog. It started in the beginning of 2017 with the goal of showing our mostly North American audience how CF is cared for in countries all over the world. Today kicks off a fresh new series of countries across the European continent. Remember, if you know someone who would like to be featured in our Cystic Fibrosis Around the World series from a country that has not yet been featured, we want to hear from you at [email protected] [The below interview had slight edits applied to conform to the format of prior posts]!
Finland, Anonymous 17 year old boy living with cystic fibrous (interview completed by mother).
- About how many people in your country have cystic fibrosis?
- Do people in your country know what CF is?Generally the vast majority have never heard of it.
- When were you diagnosed?
At the age of 2 yrs 2 months in February 2005
- Why were you tested?
Prolonged cough, low weight, problems in digestion (fatty stools), vomiting mucus on meals
- Were you encouraged to be open about your CF?
In kindergarten and primary school, the other children knew I had to take these capsules, but kids are adaptable and uncomplicated. When they have the answer, that’s it! I have never declared having CF. It’s quite a low-key thing. These days, if asked, I answer why I’m taking enzyme capsules, for instance. My closest friends know, but my classmates and teammates don’t necessarily. The coaches know but most of my teachers at school don’t, and why should they? There hasn’t been the need for me to be hospitalized since I was seven, so I’ve been lucky.
- Do your friends and family know that you have CF?
Yes, they do.
- Does your insurance/healthcare cover costs?
(Mom) Finland has public health insurance for each citizen. We didn’t take private health insurance prenatally for any of our children.
- Does it fully cover all medications and treatments available to patients with CF?
No, it doesn’t.
- Does government provide your healthcare or is insurance offer privately?
Finland has public health insurance for each citizen.
The patient pays 41.70 € for each appointment at the CF clinic, and 49.70 € for a day in a hospital ward. The maximum pay is 683 euros per year, after which the appointments and hospital days will not be charged. Subscription medications have a three-step reimbursement process. Basically, the patient pays their own share for each medicine up to a total of 577 euros a year. After that, each 3-month-quantity purchase of subscription medicine costs 2.50 euros for the rest of the year. Physiotherapy is paid by the health care district in most cases.
- Do you have access to drug studies/trials?
Luckily, exactly today June 11th, the first Finnish patient was accepted in the early access/compassionate use programme that Vertex has started on Trikafta. A couple of others are very close to starting the same medicine in the same programme.
- Do you have access to new medications?
See above, only through the CUP so far. The reimbursement applications for Orkambi® and Symkevi® treatment were not approved in March 2020. The pharma submitted a new application for reimbursement for them in April 2020. We are hoping the decision will be different this time.
- Who is on your CF care team? (Doctors, nurses, etc.)
A pulmonologist, CF nurse, gastroenterologist, dietician, physiotherapist, a social worker and a rehabilitation nurse. (At least I think that’s the American translation of that job).
- How far away is your CF clinic?
I visit two: Tampere Pulmonology Clinic, 85 kms away, and Helsinki Joint CF Outpatient Clinic once or twice a year, 100 kms.
- Is there a difference between adult/child clinic/care for CF?
So far there has been, but it is gradually changing since the emergence of the Joint CF Clinic at Helsinki University Hospital opened in September 2019.
- How often do you go to the doctor (non-emergency)?
3-5 times a year
- Is it easy to get an appointment?
The next appointment is usually scheduled at the time of each visit.
- What do you do in case of emergency?
Fortunately, we haven’t been there yet. The first would be to go to the A&E in our regional hospital. They would contact the pulmonologist-on-call in either Tampere or Helsinki, and a CF specialist as soon as possible.
- If you need IV antibiotics, can you do them at home or do you need to stay in the hospital?
You stay in the hospital when starting the course; then visit the ward for each individual infusion. It’s probably possible to do a home IV now too. This would vary in different areas/cities in Finland.
- Is the Vest a typical treatment option?
No, it isn’t.
- What other treatments are common in your area?
Mucociliary clearance methods at home with nebulizer, mucolytes, exercise and physiotherapy.
- Are you encouraged to exercise? Yes, very much so.
Specific? Basically any sport except swimming in pools.
- What CF specific medications/therapies have been developed in your country? None
- What role does nutrition play in your CF care?
A major role: fat-enriched healthy diet.
Do you have a feeding tube? No, I don’t.
Do you have CFRD (diabetes)? No, I don’t.
- What do you wish could be better about your nation’s care for CF patients?
Access to modulator medicines, their reimbursement
- What do you know about CF Lung Transplants?
They are performed in Helsinki, Finland. The latest [several] weeks ago on a 30+ male.
- Did you go to college/university or advance your education elsewhere (Or plan to go to college/university)?
I’m planning to go.
Were you encouraged? As much as any Finn; this goes without saying.
- What is the National CF Foundation (if there is one)?
The CF Association in Finland (Suomen CF-yhdistys)
Does this Foundation (if there is one) provide assistance in everyday life and education? (example: scholarships, transplant aid, educational materials, etc.)
They do on a small scale. A CF Day is arranged every autumn for families and close relatives of PWCF where a CF doctor gives a talk on recent developments. CF families can apply for funds to acquire sports/exercise equipment for a CF child or teen from the association’s scholarship fund.
There is also peer support from the members of the board with contact details available on the association website. Hopefully some educational material will also be published in the coming year.
- 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?
The active work and efforts of the first Finnish doctor specialized in pediatric pulmonology, and trained at the CF clinic of the Great Ormond Street CF Clinic in London, has recently made it possible for the first Finnish specialized CF Clinic for all Finnish CF patients to open at Helsinki University Hospital, called Joint CF Outpatient Clinic (September 2019). Her research is also contributing to the realization of a Finnish CF Patient Registry, and after that we will be able to join the European Cystic Fibrosis Society Patient Registry (ECFSPR), hopefully within the next 12 months. Then Finland will no longer be one of the few blank spots on the map of the ECFSPR. The CF community in Finland also hopes we can have access to medical trials after being part of ECFSPR.
An edit was applied on 9/16/2020 to the answer for question 11 at the request of the interviewee