TWO SUCESSFULLY SET MILESTONES
There are many countries where haemophilia care and treatment needs improvement and many long roads
to reach solutions. The NNHF is pleased to report that the first two of its projects – Uzbekistan and Venezuela
– have successfully reached completion meanwhile and made an impact.
UZBEKISTAN
The first NNHF project to be completed was in
Uzbekistan. Uzbekistan is a double-landlocked
Central Asian country about 1,000 km long
by 500 wide, located between Afghanistan,
Turkmenistan and Tajikistan to the South and
Kazakhstan, the Aral Sea and Kyrgyzstan to the
North. It has been a republic since 1991 and is
rich in several natural resources, such as natural
gas, petroleum, coal, gold, uranium and metals.
Vast prairies are home to grain and cotton.
Uzbekistan has a population of about 27 million.
Uzbekistan has 1,138 haemophilia patients,
compared with 2,700 expected, who have an
approximate life expectancy of 38 years. Today,
88% of patients are infected with the hepatitis
C virus and 9% with the hepatitis B virus.
However, only 2 patients are seropositive for
HIV. Haemophilia treatment is in its infancy and
cryoprecipitate and plasma are the main sources
of treatment, with a level of consumption of
less than 0.002 I.U. per capita.
The NNHF project in Uzbekistan was designed
to last one year. The goals of the project were to
improve haemophilia diagnosis, build capacity
and create a national patient registry. In fact, the
project achieved much more, due to leveraged
funding and great local participation.
The project ran from May 2006 to May 2007,
and was executed by a small, highly motivated
team around Dr Aziza Makhmudova of the
Institute of Haematology, Tashkent. A National
Reference Laboratory was established and a set
of guidelines was composed, written and printed
for the diagnosis, treatment and prevention of
haemophilia. A national registry was initiated
with the help of Medical Data Solutions
and Services (MDSAS), UK, using the British
Haemophilia Centre registry programme.
13 scientific expeditions were organised to the
far corners of the country to train healthcare
professionals, educate patients and collect blood
samples from patients who had been invited for
testing. In the end, 1,138 samples were collected,
analysed, confirmed for haemophilia and entered
into the first computerised national registry.
After the guidelines were published education
programmes were carried out for healthcare
professionals. 38 physicians, 71 haemophilia
nurses and 2 laboratory technicians throughout
the country were trained.
Education programmes for patients and their
families based on a newly-created manual about
haemophilia and a young patients’ book, “What
I know about myself”, succeeded in reaching 500
patients and 923 parents and family members.
The project brought a number of significant
benefits to the haemophilia community of
Uzbekistan. Throughout the project, the Ministry
of Health was informed at regular intervals. This
proved advantageous in achieving endorsement
and later support. The project partner was
active in local communication. A third party
Kazakhstan
Uzbekistan
Tashkent
Kyrgyzstan
Turkmenistan
China
Tajikistan
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REPORT 2007 / 2008
sponsor took note and made a large personal
donation towards building a hospital for treating
haemophilia. Seed funding of the NNHF was
matched by an amount estimated at 10 times
the original for the construction of the first
specialised hospital in Uzbekistan for bleeding
disorders, a modern building on the grounds of
the Institute for Haematology.
Makhmudova: “Imagine a small child in hospital
away from his normal life for up to 8 months;
something that will feel like a lifetime for him with no school, no sports and no other activities.
But this haemophilia school will change all of
that. It will restore “normal“ life, tremendously
improve the chances for better social integration
and return lost time.”
The success of this project has paved the way
for a second project in Uzbekistan, this time
for the schooling of about 100 haemophilia
children per year who have to remain in
hospital for extended periods for treatment
or after operations. In the words of Dr Aziza
NOVO NORDISK HAEMOPHILIA FOUNDATION
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