Cystic Fibrosis Around the World takes us to Russia today.
Please note that the brackets [] indicate an edit I made for spelling or language.
Moscow, Russia – Anna 6 years old living with cystic fibrosis (parent completed interview)
- About how many people in your country have cystic fibrosis?
In 2015 officially 2916 patients were registered in CF register in Russia. Doctors say that the real number of people with CF is 10 times higher; the majority of CF patients stay undiagnosed and not treated correctly.
- Do people in your country know what CF is?
Only families and patients and their inner circle know about the condition. And CF doctors, of course. Sometimes it is better to hide CF from others. I hide the [diagnosis] from her current gymnastics trainer: I had bad experience with her previous trainer, which found obsolete information about CF [on] the internet and made all possible things to see off Anna from her group (regardless of the fact that I brought CF doctor’s approval and recommendations for gymnastics).
- When were you diagnosed? Why were you tested?
Anna was diagnosed at the age of 8 months. She had elevated IRT level, 1 negative (false negative?) sweat test, pseudo-Barter syndrome at the age of 7-8 months, second sweat test revealed positive, [then] we found 1 DF508 mutation and later – another rare mutation.
- Were you encouraged to be open about your CF? Do your friends and family know that you have CF?
We weren’t encouraged to be open about Anna’s CF, I even try to avoid discussing CF with her. Only close friends know the diagnosis, we became good friends with few moms, whose children have CF, and with few adults with CF.
- 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?
There is a government insurance for CF (and other rare diseases) in Russia. Sadly, it doesn’t cover all medications and treatments. Only [Pulmozyme] is covered at the federal level and is provided regularly. Other medications and treatments should be financed by regional authorities, which normally refuse [to buy] original CF antibiotics, enzymes, special nutrition products, etc. These items are normally purchased by the patient and its families.
- Do you have access to drug studies/trials? Do you have access to new medications?
No access to drug studies/trials in Russia and/or new medications.
- Who is on your CF care team? (Doctors, nurses, etc.)
CF doctors, nurses. Normally patients/parents pay for physician by themselves.
- How far away is your CF clinic? Is there a difference between adult/child clinic/care for CF?
CF clinic is 15 km away from our place. Adults clinic is situated separately from children clinic.
- 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 go to the doctor 1 time in 3 months. I schedule each next appointment straight after/on current appointment in advance. I call/text message [with] previous CF doctor, which left CF center, we keep good relations with her.
- If you need IV antibiotics, can you do them at home or do you need to stay in the hospital?
Unfortunately, Russian patients have to do IV antibiotics at clinic, those patients, which do IVs at home, are to take responsibility for any problems.
- Is the Vest a typical treatment option? What other treatments are common in your area? Which are not?
Vest is NOT typical treatment option. I bought it by myself. Exhaling exercises are popular here (because they might cost nothing).
- Are you encouraged to exercise? Specific?
Anna does gymnastics since the age of 3,5 y.o. Russian CF doctors recommend any sport activities especially swimming, which we haven’t started yet because of dirtiness in all public pools in Moscow.
- What CF specific medications/therapies have been developed in your country? Does your country promote new drugs?
There was nothing developed in Russia and this country doesn’t promote new drugs. No Kalydeco or Orkambi and Vertex is quite reluctant coming into Russian market.
- What role does nutrition play in your CF care? Do you have a feeding tube? Do you have CFRD (diabetes)?
Since my daughter has had Pseudo-Barter Syndrome I know how complicated it is to keep her in normal weight when she has no appetite and refusing to eat, sleepy all day long.
No feeding tube and no CFRD (but some problems with her intestines).
- What do you wish could be better about your nation’s care for CF patients?
- Original antibiotics
- New drugs (genetic, other)
- Home IV
- Special treatments like Vest, etc
- Psychological help to parents and patients
- Special nutrition
- What do you know about CF Lung Transplants?
A little. They started doing such surgeries recently in Moscow.
- Did you go to college/university or advance your education elsewhere (Or plan to go to college/university)? Were you encouraged?
N/A.
My daughter is 6.5 y.o. I do everything I can to give her good/excellent education and socialization without harm to her health.
- 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.)
No national CF Foundation in Russia.
- 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 level of CF care in Russia is extremely low. I buy drugs, vest, compressors and disposables, HTS in ampules, etc. By law all this stuff should be provided by the government from taxes which I pay.
