Rabat, Morocco, 10-year-old boy, Abdou, living with cystic fibrosis (interview completed with help from mom)
- About how many people in your country have cystic fibrosis?
According to a study made back in 2008, Moroccan population is at risk of this pathology and CF prevalence could be of the order of that observed in European populations (Ratbi et al., 2008). Therefore, there should be around 3500 people affected by CF. Nevertheless, due to lack of CF diagnosis while the disease is almost unknown in the country only some 100 CF individuals are known by the Moroccan CF foundation.
- Do people in your country know what CF is?
Cystic Fibrosis is not well known in Morocco. Nevertheless, when Moroccan CF foundation started advertising about it since 2017, there are more and more people diagnosed with CF. There are plans to practice Newborn Screening in public hospitals as today this test is only made by people who are well informed about its importance, while it is not reimbursed by health insurance.
We also see more laboratories offering sweat tests while there was only one able to do it in the past.
- When were you diagnosed? Why were you tested?
I was diagnosed when I was 4 years old. Since I was born, I’ve had a lot of health issues obliging me to stay many times in the hospital. Initially I was suspected to carry another rare disease called “Bartter syndrome” as I was often having dehydration episodes. At age 4 I had a lung infection that couldn’t go away despite all oral antibiotics I’ve had, at that moment my pediatrician suspected CF and asked for a sweat test that showed no doubt about it. Only then we understood that the dehydration I was having in my childhood was due to the lack of salt in my body as I was sweating a lot. This used to happen in summer when temperatures exceeded 30°C.
- Were you encouraged to be open about your CF? Do your friends and family know that you have CF?
I’ve always been encouraged to be open about my illness. I already participated to some TV spots in the news or in some internet TV media in order to talk about how I feel and what I do to improve my health condition. My mother tells me I’m a hero as I help other children who don’t have the chance to be treated in our country.
- Does your insurance/healthcare cover costs? Does it fully cover all medications and treatments available to patients with CF? Does government provide your healthcare or is insurance offer privately?
Unfortunately, public healthcare systems don’t cover any cost related to CF, even the mandatory antibiotics needed to treat lung bacteria or pancreatic enzymes (PE) which are vital to people with CF. PE are even not available in the country and we are obliged to bring them from abroad, which is a real nightmare. People who have private health insurance can get their medications and treatments reimbursed but unfortunately this is not an option for all families who usually don’t have enough income to go for such expensive expenses.
- Do you have access to drug studies/trials? Do you have access to new medications?
No, nothing is being done in our country to go for studies/trials. New medications are even a dream here!
- Who is on your CF care team? (Doctors, nurses, etc.)
There are very few doctors knowing about CF in Morocco, while there is no dedicated CF center in the country. I’m being treated by a CF care team in Belgium. It’s not very simple as I need to travel abroad to meet them. Hopefully we are in touch with the team via email or phone whenever I need their support or advise.
- How far away is your CF clinic? Is there a difference between adult/child clinic/care for CF?
As I said, there is no CF clinic in the country at all, while the few doctors who know about CF are pediatricians.
I know many Moroccan families who are in the same situation -getting their children follow up by a CF team abroad-.
Moroccan hospitals having pediatricians knowing about CF are either in Rabat, Casablanca or Marrakech, meaning that for families not living in any of these 3 cities they always need to travel (sometimes hundreds of kilometers) to meet their doctors.
- 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?
In case of emergency I get in touch with my doctor via email or phone, while I have an annual appointment to do the complete check-up.
- If you need IV antibiotics, can you do them at home or do you need to stay in the hospital?
I always do them at home. Families being treated in Morocco need sometimes to stay in the hospital to do their treatments. Unfortunately, hospitals sometimes don’t have the needed antibiotics to treat children, it’s really a sad situation.
- Is the Vest a typical treatment option? What other treatments are common in your area? Which are not?
Vest is not a treatment option here as they are not sold in the country and bringing them from abroad is very expensive.
We are being trained to practice autogenic drainage which seems to be a well-known physiotherapy technique in European countries.
- Are you encouraged to exercise? Specific?
I’m encouraged by my care team to practice sports as much as I can. I know that studies showed that CF people who practice a lot live longer and better. I love playing football.
- What CF specific medications/therapies have been developed in your country? Does your country promote new drugs?
As I mentioned earlier, there is no research about CF medications or therapies in Morocco.
- What role does nutrition play in your CF care? Do you have a feeding tube? Do you have CFRD (diabetes)?
I don’t have CFRD and don’t have much troubles with my digestive system, my weight is correct. I just have stomach pain sometimes, usually it happens when I forget to take pancreatic enzymes before snacks. It’s painful because I always need this even if I just take a small chocolate piece.
In Morocco no one has a feeding tube as an alternative for weight gain although many children need it. This method is sometimes practiced only when children are staying in the hospital.
We are lucky in Morocco because a CF mommy changed her job when she knew her son was affected by CF, she studied nutrition and helps a lot of families whose children need a deep nutrition regimen. Results are very satisfactory in those who follow carefully nutrition guidance provided by this nutrition specialist.
- What do you wish could be better about your nation’s care for CF patients?
I wish there was more focus given by authorities to people with CF as today it is very difficult to live with this illness in Morocco. We need at least one CF care center. We wish we could get the medications from any pharmacy in the country instead of being obliged to buy it from abroad. We wish to get reimbursed about all expenses incurred by CF. We wish there were more specialist/doctors expert in CF… lot of wishes as even basics are not available in our country.
- What do you know about CF Lung Transplants?
CF Lung Transplants is the very last alternative for people who have a very damaged lung function. This medical act is not practiced in our country. A lot of children still die very young because of the poor CF care system in the country.
- Did you go to college/university or advance your education elsewhere (Or plan to go to college/university)? Were you encouraged?
I’m still studying in the primary school but plan to go to the university when I get older.
- 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 national CF foundation called “Association Marocaine de Mucoviscidose”. It assists families so that they get to know about their children’s illness and how they could improve their quality of life. It also provided free of charge medications to those who are in need as it can’t be bought locally. The foundation also makes a lot of advertisement about CF (TV, radio, webinar, medical congress…) so that more people know about 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?
As indicated here above, in Morocco people with CF are very far from having an acceptable support to their health condition. Children die too early due to lack of: diagnosis, CF care centers, medications, … The foundation is doing a lot to help moving in the right direction talking to authorities (health ministry, laboratories, doctors) but still the road is too long to reach what a lot of countries achieved. We are hopeful that the new drugs/therapies arrive to our country to save Moroccan CF patients lives