Hello!
My name is Evgeniy Senkin, I am 47. I work as an engineer and teacher of technical sciences.
My family is my mother, my wife and my son Roman aged 13. Roman has been disabled since
childhood: his diagnosis is inborn autosomal recessive spinal amyotrophy. My son is on homeschooling
since he can only move around by crawling. He cannot do many things on his own and needs constant
care by a physically strong person. Roman is in the 8th grade at school and is doing very well.
Life has never been easy for us, but in 2003 it got even harder: I was diagnosed with chronic myelogenous leukemia.
Then there were difficult months of treatment: Hydrea, Reaferon, Cytozar. Hematological remission was only achieved at
the end of 2004 when I began to be administered Glivec which I was getting free of charge due to a federal program.
In 2007 Glivec even led to a cytogenetic response.
But in April 2008 I had a blast crisis (43.5% of blasts). For any person that's a death sentence. However, thanks to
the correct treatment tactics and a new drug called Tasigna which I had been receiving through a charity program
for about a year my condition became stable. Then charity help was turned down, and the federal program does
not cover this drug and is not going to (a pack for one month costs 230,000 roubles). So I began to turn to
government agencies and write letters. Finally money was allotted from the Krai budget for a 5-months' supply
of this drug. At present I have no money to buy the drug.
I have had a consultation with Professor Afanasiev in St. Petersburg where he told me that Tasigna only gives
short-time support and delays a relapse, and that I need an urgent bone marrow transplantation.
I paid for the matching process myself, and matching donors were found in the international registry. I received an
invoice for 15,000 euros from Germany. Delivery of the transplant to St. Petersburg will cost another 2,500 euros.
Our family does not have such money, nor will it ever have it. Above all, I am worried not about myself but about
my disabled son whom I need to prepare for grown-up life.,br>
Thank you all in advance for your compassion and help.
Update as of June 23, 2011.
I underwent examination to prepare for BMT, during which I was
diagnosed with a giant cyst in my brain. I told R. Gorbacheva Institute
about that and received their opinion that the cyst is an absolute
contra-indication for transplantation. As maintenance therapy, I
was recommended Tasigna for the rest of my life. This medication is
not covered by federal program for free medications, and it
costs 230,000 rubles a month.
I had to visit many government offices. At the regional administration,
I was told that they could buy this drug if they have money in the budget.
For now, they only bought enough for a month.
I do not know what will happen next.
Update as of September 19, 2011.
The regional administration purchased me enough Tasigna to last until
the end of the year. I talked to Alexei, my supporter who donated 668,046
rubles, and he suggested that I keep the money to buy the drug. But I
told him that I cannot hold on to this amount, as I don't know whether
I will use the money. Then he offered me to transfer this money to
AdVita fund so that it decides where to use the money - and
that's what I plan to do.
I will be very grateful if the fund decided to buy more Tasigna
in case there are issues with availability of this drug.
I am enormously grateful to everyone for their emotional and
financial support. Be well and do well.
Evgeniy
Update as of April 20, 2012.
The regional administration purchased 8 more boxes of Tasigna for me.
It should last me until December 27, 2012.
Evgeniy
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation"
acc. 40703840712001000468 Beneficiary Bank:
JSC Bank Otkritie, Moscow
SWIFT: RUDL RU MM
For Petrovskiy branch,
St.Petersburg
SWIFT: RUDL RU M1PET Adress of Beneficiary Bank:
191186, Saint-Petersburg Russia,
Nevsky pr. 26
Correspondent Bank #1:
Bank of New York Mellon,
New York, USA
SWIFT: IRVT US 3N Correspondent Account No:
8901003069
Correspondent Bank #2:
JP Morgan Chase Bank,
New York, USA
SWIFT: CHAS US 33 Correspondent Account No:
822839205
*,**
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation"
acc. 40703978312001000468 Beneficiary Bank:
JSC Bank Otkritie, Moscow
SWIFT RUDL RU MM
For Petrovskiy branch,
St.Petersburg
SWIFT RUDL RU M1PET Adress of Beneficiary Bank:
191186, Saint-Petersburg Russia,
Nevsky pr. 26
Correspondent Bank #1:
Deutsche Bank AG,
SWIFT: DEUT DE FF Correspondent Account No:
9477134
Correspondent Bank #2:
Commerzbank AG,
Frankfurt am Main, Germany
SWIFT: COBA DE FF Correspondent Account No:
400886482900
*,**
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