Cystic Fibrosis Around the World returns with an interview coming to us from France! As always, if you or someone you know living abroad with cystic fibrosis would like to be included in #CFAroundTheWorld get in touch with me at GunnarsBlog@Esiason.org. I will be featuring several countries new to the blog series once a week over the next month or so!
Please note that the brackets  indicate edits made to correct grammar or adjustments made for language.
France – Anonymous child living with cystic fibrosis (parent completed interview)
- About how many people in your country have cystic fibrosis?
There are around 6,600 people who have CF in France. The adult population is growing a lot.
- Do people in your country know what CF is?
People usually know the name CF but not really what are the consequences for people with CF. 15 years ago, a boy won a French singing TV show (Gregory Lemarchal). He won the contest that lasted several months and became very famous. He was very open about talking about CF. Unfortunately, he was waiting for a lung transplant and did not get it His career was very short. Many people became aware about CF.
- When were you diagnosed? Why were you tested?
Blood spot test at birth (Guthrie). [You get] the results around 3 weeks after birth. [We] got a call form hospital to confirm the tests.
- Were you encouraged to be open about your CF? Do your friends and family know that you have CF?
The family is of course aware and they are very supportive. They help a lot in the daily organization as sometimes our daughter can be sick and then can’t go to school.
- 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?
CF is recognized has a chronic illness. All the medications costs are covered by social healthcare (drugs, physical therapists). Comfort drugs are not taken in charge. Drugs prices are not an issue here. Drugstores usually have all the medicines or they can order them. Sometimes, we need to go to the hospital pharmacy to get specific [meds]. Everything is taking in charge by the social insurance.
- Do you have access to drug studies/trials? Do you have access to new medications?
My daughter is a bit young. We have not been in a study yet. I know that some studies are conducted in France through the impulsion of the French CF association.
- Who is on your CF care team? (Doctors, nurses, etc.)?
We are [go to] a pediatric hospital that has a CF center. There are nurses, a [pulmonologist], a gastroenterologist, a physical therapist. Her [pulmonologist] can order sometimes extra exams with specialists. As it’s a hospital for children, we can usually do all the exams at the same place.
- How far away is your CF clinic? Is there a difference between adult/child clinic/care for CF?
We are 30 minutes drive from the CF clinic. It’s a child center as it’s inside a child hospital. Adult centers are in different hospitals.
- 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?
We usually met the doctors every 3 months for non-emergency. There are several children with CF that are followed by the same doctor. All appointments are taken for the year. For emergencies, we have a direct line to the nurses office. We can get an appointment within the day.
- If you need IV antibiotics, can you do them at home or do you need to stay in the hospital?
IV antibiotics are usually for 2 weeks. We start the [treatment] at the hospital to see if everything is going well and then continue at home. The CF [team] manages all the needs for [meds] at home.
- Is the Vest a typical treatment option? What other treatments are common in your area? Which are not?
The vest is not [used] at all. Since birth, we have physical therapist. When it’s OK, it’s 3 to 4 times a week. He / she makes blow and breath exercises. When [my daughter] is sick, it can be twice to three times a day. Usually it lasts 20 to 30 minutes? We have been included in a test for the Vest. We got one 3 weeks ago. We use it as a complementary technique with chest therapy. We have not enough experience yet to compare the different outcomes between the Vest and chest therapy.
- Are you encouraged to exercise? Specific?
2 decades ago, I think that patients were not encouraged at all to do exercises. As we do know better CF, since the beginning we were encouraged to exercise. All the family is involved in trying to transform everything as on occasion to exercise (climb the stairs, walk instead of taking the car or the bus…)
- What CF specific medications/therapies have been developed in your country? Does your country promote new drugs?
Many researches are done in France on CF and globally on genetic diseases. A lot of money is raised for research. I don’t know if some medicines used in the cares for CF were developed in France.
- What role does nutrition play in your CF care? Do you have a feeding tube? Do you have CFRD (diabetes)?
We know that nutrition is important to be stronger against bacteria. We give richer food and usually add oil, butter, cream and salt to every meal.
- What do you wish could be better about your nation’s care for CF patients?
- What do you know about CF Lung Transplants?
As this famous young singer with CF in France did get organs in time, it has awakened people conscience about transplants. It changes everything for CF people. They can basically leave many “new” years with new lungs. In January ‘17, a law was reinforced in France to develop organs donations. You have to register to say that you do not want your organs to be retrieved.
- Did you go to college/university or advance your education elsewhere (Or plan to go to college/university)? Were you encouraged?
- 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 a foundation called vaincre la muscoviscidose. They have 3 main objectives : develop CF awareness among people to explain what it is, help patients in their daily life and raise money to finance research.
The second one was created by Gregory’s Lemarchal parents. They have the same objectives.
- 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?
Today’s interview discusses the new French organ donation policy. I blogged about it back in January if you want to learn more!