National cystic fibrosis centre

Russia needs a national cystic fibrosis


said Elena Amelina, head of the Institute of Pulmonology’s cystic fibrosis
laboratory at a round table discussing how to deal with the actual problems of
patients suffering from cystic fibrosis in Moscow and the Moscow region. She
stated that the average life expectancy of such patients was increasing (in
Moscow and the Moscow region by up to 35 years). At the same time there were
only four beds for adults in the whole country.


Sherman, head of the cystic fibrosis department at the Moscow cystic fibrosis
centre, said that the problems with hospitalisation were not confined to adult
patients. Only four medical institutions in the capital made routine provision
for children. She went on to say, however, that the basic problem concerned
emergency admissions. Children were directed to various hospitals in Moscow and
region. ‘In many of them specialists cannot give patients the level of help
needed’, she observed. Furthermore, she went on to say that the doctors at
these institutions did not work with specialists in cystic fibrosis. Often the
help given to patients on emergency admission was confined to resolving an
acute situation. Patients were discharged without being told what they needed
to do to prevent their condition worsening and some time later they were again
admitted to hospital. The expert thought that when cystic fibrosis patients are
admitted to city and regional hospitals the specialists there should work
together with specialists in the disease. Furthermore, conferences, seminars
and lectures should be arranged for them. There should be more clinics
available to help such patients.

problem, according to Ms Sherman, is the supply of drugs. She emphasised that
orders for supplies were decided in the middle of the current year for the
following year, too early to know how many new patients there would be. In 2010
a further 33 patients had appeared after the order had been submitted. As a
result, it was noted that drugs were scarce at the end of the year. She
suggested buying extra during the year or adding a ‘contingency’ amount to the
original order to avoid such a situation being repeated. ‘Free medication is
directly linked to recognition of disability. If medication were to be given
out free without this being necessary, many patients would reject the status’,
observed Ms Amelina. She thought that many problems met with by adult patients
suffering from cystic fibrosis could be resolved if the ministry of health and
social development were to have a specialist on its staff to deal with them.

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