SVETLANA KARIMOVA
The National Association of patients with rare diseases "Genetics"
RUSSIA
Istituto Superiore di Sanità
Rome (Italy)
“Update
on Eastern European Countries”, EUROPLAN FINAL CONFERENCE Rome, Italy - February 25, 2011
Policy on rare diseases
• Currently, there is no special legislation about rare diseases in Russia.
It is expected to be adopted a law “About citizen’s health protection” in
April 2011, in which there will be a special part about rare diseases.
This topic is actively discussed among all stakeholders – medical
professionals, researchers, government and patients – and results are
becoming visible.
• Most of medical practitioners have insufficient information about rare
diseases, diagnosis and treatment.
• There are no functioning mechanisms about inclusion of rare diseases
into the centralized governmental funding system and all patients are
lobbying on personal basis.
• There is no coordination among the medical and social services,
patients and health authorities.
All these issues lead to an inadequate and not effective system for
medical and social care in Russia.
Istituto Superiore di Sanità
Rome (Italy)
RUSSIA
Educational programs
and prevention
• Educational and target programs about rare diseases are still
missing in Russia. The lack of qualified primary health care
doctors, pediatricians, therapists and other specialists is a
problem for the adequate rare disease management.
• A national program for prevention exists, including folic acid
supplementation and prenatal screening
• In the framework of national project “Health”, a nationwide
neonatal screening is organized for 5 diseases (PKU,
galactosemia, CF, adrogenital syndrome and pituitary nanism)
Istituto Superiore di Sanità
Rome (Italy)
RUSSIA
Diagnosis
• There are several major diagnostic centres, where rare diseases
diagnosis can be done – Moscow, St. Petersburg, Novosibirsk,
Chazzan. However, their number is too small having in mind the
size of the country.
• We experience many problems with the logistics that lead to delay
in diagnosis and treatment
• Currently, a new program “Modernization of healthcare” just
started in Russia, that give us a hope a lot of positive changes,
related to diagnosis will happen. It is to much extend dependent
on us to get better results from this program.
Istituto Superiore di Sanità
Rome (Italy)
RUSSIA
Treatment
•
In Russia there is not a functioning system, allowing a rare disease
patient to have a complete and consecutive pathway from diagnosis to
treatment.
•
Most of the diagnosed patients do not receive adequate treatment.
However, there is a national special program for medical management of
only 7 rare conditions, funded by the federal budget – multiple sclerosis,
Gaucher disease, hemophilia, cystic fibrosis, pituitary nanism,
oncohematology diseases and transplanted patients.
•
Regions have a lack of experience working with new orphan and
innovative therapies. Generally, there are no protocols and standards for
treatment. There is no effective system for monitoring and outcome
assessment of the treatment.
Istituto Superiore di Sanità
Rome (Italy)
RUSSIA
Treatment
•
Patients, outside the mentioned program have the right for free
treatment, paid by the federal budget. Usually, regional
healthcare authorities deny access to expensive treatment with
the reasons for insufficient regional budgets
REHABILITATION
• The system for rehabilitation services for rare diseases is not
very well developed. There is no individual approach in the
rehabilitation of patients with rare diseases. They receive a
general recovery procedures, not specific to their particular
disease.
• There is a tendency, that some public organizations try to initiate
individual rehabilitation programs, but they need more active
governmental support.
Istituto Superiore di Sanità
Rome (Italy)
RUSSIA
Patient organizations
Besides our umbrella organizations, there more than 20 active rare
disease specific organizations in Russia:
• PKU, immunodeficiency, cystic fibrosis, hemophilia, iTTP, primary
pulmonary hypertensions, cystinosis, porphyries, Gaucher
disease, organic acedemia, lymphoedema, Crohn disease and
coeliacia, Wilson disease, CML, LSD, spina bifida, MPS, Fabri
disease, PNR, multiple sclerosis etc.
Istituto Superiore di Sanità
Rome (Italy)
RUSSIA
National plan/strategy
A list of activities, that we have undertaken with the aim to establish
a strategy, plan and legislation for rare diseases in Russia
•
•
•
•
First all Russian conference on rare diseases and rare medical
technologies, together with the Fifth Eastern European
Conference on Rare Diseases and Orphan Drugs (2010)
Active work with the governmental authorities on drafting the
articles, concerning rare diseases in the new law “About citizen’s
health protection”
A close collaboration with Ministry of health on drafting a list of
rare and life-threatening diseases
Initiated work on establishment of registries of some diseases by
our Information centre for rare diseases and orphan drugs,
sending data also to the Ministry of health
Istituto Superiore di Sanità
Rome (Italy)
RUSSIA
How EUROPLAN can support us?
In the framework of EUROPLAN project, many conferences and events have
been organized, recommending establishment of national plans for rare
diseases in different countries. Russia has reached the same level of
awareness about the necessity of specific national strategy on rare diseases
in support of pateints.
We will benefit a lot from the EUROPLAN results and possible future
development by:
• Expert collaboration and advice on rare diseases plan development,
priorities, indicators and specific isuues, having in mind the regionalization
of the country
•
•
Workshops with European and Russian experts in public health, about
possible optimization of the healthcare system in Russia, in order to
adapt for the specific needs of rare disease patients.
Supporting events towards increasing the Russian public and
governmental awareness of the Europlan results and best examples from
EU countries.
Istituto Superiore di Sanità
Rome (Italy)
RUSSIA
Thank you for the attention!
Istituto Superiore di Sanità
Rome (Italy)
RUSSIA