Paul
Goble
Staunton, December 8 –The fate of Russians
who suffer from cystic fibrosis and can’t now get the medicines they need has
become so dire that not only have they taken to the streets to protest (newsru.com/russia/29nov2019/mukopills.html)
but even government media have been forced to take note (1tv.ru/shows/vremya-pokazhet/vypuski/zagovor-protiv-pacientov-vremya-pokazhet-fragment-vypuska-ot-06-12-2019).
Angelina Skrypnikova of St.
Petersburg’s Gorod-812 news agency spoke with Tasya Sheremet, an
18-year-old blogger who suffers from cystic fibrosis and has been at the center
of the campaign to force the government to provide the medicines she and others
with this diagnosis need (gorod-812.ru/tasya-sheremet-gosudarstvu-vsyo-ravno-chto-myi-umryom/).
The protests by victims and their
parents have been important, Sheremet says; but perhaps even more influential
has been a petition demanding that laws and policies be changed so that those
with this disease can survive. That petition now has 212,000 signatures (change.org/p/верните-лекарства-больным-муковисцидозом).
Until the protests and the
petitions, Sheremet continues, “only opposition media” would talk about the
problem. Now, “federal outlets have had to cover this” too. That is a major victory but it is not a final
one. The problem is that many can’t get medicines, those available are often
poor substitutes, and the government doesn’t care.
Its officials simultaneously deny
there is a problem and promise to get more medicines into the hands of
sufferers. But all too often, the victim says, the medicines they offer are
untested generics that don’t even correspond chemically to the original
versions and are now effective.
And under current Russian law, the
government can insist that those medicines do work without doing the necessary
tests; and sufferers have to prove that they don’t on their own. That is no
easy thing, and many just give up. As a result,
they die because without adequate medications, those with cystic fibrosis are
at risk of premature death.
“In the 1990s,” she says, “everything
was bad, there weren’t any medicines and children died at 15. Then the level of
supply rose until about 2013” when the government adopted a law designed to
reduce corruption in the pharmaceutical industry but that has resulted in a
dramatic decline in the availability of effective medicines.
As Sheremet notes, quoting
Chernomyrdin’s famous remark, “’we wanted better but it turned out like always.’”
Recently the situation has
deteriorated to the point that one can’t buy the necessary medicines even if
one has the money. As a result, those
with cystic fibrosis are simply dying off. “This became the last straw. We
understood that if we do not act, they will kill us. It can’t be worse.”
The statements of Russian officials
like Health Minister Veronika Skvortsova are absurd and offensive. One has to
ask how they got or keep their jobs. Import substitution and generics are fine,
but they have to be high quality. In Russia for cystic fibrosis, they aren’t.
The government doesn’t care whether we live or die.
The situation for those who suffer
from other “orphan diseases,” as illnesses which relatively few people have are
known, is equally bad. What must be
done, Sheremet says, is to revise the 2013 law which has limited the availability
of effective medicines and requite the government to make quality drugs
accessible.
Sheremet says she fears the current
attention her disease is getting may be a way of distracting people and will
not lead to any real solution. Consequently, she, her fellow sufferers, and their
parents and friends will continue to protest until real change has
occurred.
At the end of the interview, the 18-year-old
pointed to another problem with Russian medicine: doctors didn’t identify her
illness. She did herself, using articles on Wikipedia to do so. If Vladimir
Putin closes that off as he has threatened to do, even more Russians with
cystic fibrosis will die: they won’t even know the illness they suffer from.
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