Today we head to Northern Europe – the Netherlands.
Please note the brackets [] indicate an edit for spelling or language.
the Netherlands, Anonymous child living with CF (parent completed interview).
- About how many people in your country have cystic fibrosis?
On average 1500 people
- Do people in your country know what CF is?
Some do, but this is not a known disease
- When were you diagnosed? Why were you tested?
Born with meconium ileus, so within two days in the hospital and in three weeks after sweat test and [genetic testing to confirm the diagnosis] of CF
- Were you encouraged to be open about your CF? Do your friends and family know that you have CF?
Yes, most do. I held a lecture about CF and our fundraising event Skate4AIR.
- 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?
The insurance covers all costs, first years not the vitamins, but since two years, when we order the vitamins by the hospital pharmacy this is also covered.
- Do you have access to drug studies/trials? Do you have access to new medications?
Not all drugs trials are for kids, and a lot of drugs trial for kids only run in US, not in EU. At the moment we are waiting for covering of Orkambi. Kalydeco is covered two years ago, but there is a great struggle for covering of Orkambi because of the balance of ‘effects’ vs ‘price’.
- Who is on your CF care team? (Doctors, nurses, etc.)
Doctors, nurse practitioner, physiotherapist, psychologist.
- How far away is your CF clinic? Is there a difference between adult/child clinic/care for CF?
Yes, we have a CF team for kids and CF team for adults. The hospital is one hour away.
- 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?
Regular appointments are once [per] three months. It is easy to get an extra appointment or to discuss the health situation by phone.
- If you need IV antibiotics, can you do them at home or do you need to stay in the hospital?
Differs [based on] the antibiotics [used].
- Is the Vest a typical treatment option? What other treatments are common in your area? Which are not?
No, here we don’t use the vest because [the doctors are] not sure If it is worth it. We do pulmozyme, hypertonic, flutter and PEP
- Are you encouraged to exercise? Specific?
Yes, but no specific sports.
- What CF specific medications/therapies have been developed in your country? Does your country promote new drugs?
Here in the Netherlands there is a lot of research of ‘[personalized] medicines’; they are using the organoids (tests of prepared cells of rectum [biopsy]) to predict the effect of (new) medicines.
- What role does nutrition play in your CF care? Do you have a feeding tube? Do you have CFRD (diabetes)?
Yes, she has a feeding tube and severe eating problems. Long treatment for the eating problems, but still a big problem.
- What do you wish could be better about your nation’s care for CF patients?
Access to new medicines!
- What do you know about CF Lung Transplants?
This is a possibility in our country.
- Did you go to college/university or advance your education elsewhere (Or plan to go to college/university)? Were you encouraged?
N/A – [too young at this point]
- 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.)
Yes, it is called the Dutch Association of Cystic Fibrosis, they provide a lot of information, like financial, information to connect with others.
- 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, I don’t think so.
