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Letter to Minister Flaherty February 14 2011

Letter to Minister Flaherty February 14 2011

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Published by Amy Gaylord-Preston

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Published by: Amy Gaylord-Preston on Feb 16, 2011
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03/03/2011

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Hon.
UJJALDOSANJH,
P.C.,
Q.c.,
M.P.
VANCOUVER SOUTH
Minister of FinanceThe Honourable James M. FlahertyDepartment of Finance Canada140 O'Connor StreetOttawa, Ontario KIA OG5We are writing to you today to request that your government provide in the up-coming budget:(1) $10 million to undertake clinical trials for the liberation procedure, as requested bythe Multiple Sclerosis Society of Canada (MSSC)'s on May 5th, 2010;(2) funding for a registry to track patients who have received the liberation therapy,whether inside or outside Canada;(3) the initial start-up money to establish a national, public cord blood bank; and (4) sustainable funding for such a bank hereafter.A brief background to each of the requests follows:
Request for Funding for Clinical Trials and a Registry for the Liberation Therapy
The MSSC called on governments across Canada to take action on chronic cerebrospinal venousinsufficiency (CCSVI) on December 17th, 2010:(1) 'Earmark funds for a pan-Canadian therapeutic trial on CCSVI, so that animmediate infusion of funding will be available when such a trial is developed andapproved.'
Room 250, Confederation Building Ottawa,Ontario KIA OA6 Tel: (613) 995-7052 Fax: (613) 995-2962 6408 Fraser Street Vancouver, British Columbia V5W 3A4 Tel: (604) 775-5323 Fax: (604) 775-5420
 
(2) 'Create registries for patients who have obtained the CCSVI procedure abroad, ormore broadly, for people living with MS, and to work with the MS Society of Canada toadvocate to the federal government to playa coordinating and funding role of similarregistries across Canada.'Canada has one of the highest rates of MS in the world, with between 55,000 and 75,000Canadians living with the disease. MS is a devastating, unpredictable disease, which affectsbalance, hearing, memory, mobility and vision.Its effects are physical, emotional and financial -and they last a lifetime. MS steals futures from families, and there is no cure.While, MS has been largely recognized as an autoimmune disease, a new theory suggests thatMS may, in fact,be caused by CCSVI, which is a narrowing of the veins in the chest, neck andspine that does not allow for the efficient removal of blood from the brain. As a result, there maybe a weakening of the endothelium and either blood may leak into the brain or other unwantedproducts that trigger inflammation and an immune response.A procedure known as venous angioplasty or angiography is used to open up veins. Many MSpatients who have had this procedure report an improvement in 'brain fuzziness', circulation,mobility, a reduction of fatigue and, over time, a marked improvement in the quality of life.It is estimated that since September of 2009, that over 12,500 liberation procedures have beenperformed in over 50 countries, and (2) Bulgaria, Canada, Italy, Kuwait, Poland, and the UnitedStates report that 80 to 97% of MS patients show one or more venous abnormalities whenangiography is used to treat the patients. Interventional radiologists at recent conferences havesuggested that roughly one-third of people treated have shown at least short term significantbenefit, and another one-third, some benefit.Longer term outcomes remain to be investigated.Based on the mounting scientific evidence as outlined above, the fact that more trials are about tobegin in the United States,that neurologists are quietly admitting their patients are improving, and that advances in treating diseases come only through clinical trials, we believe there is a
Room 250,Confederation Building Ottawa, Ontario KIA OA6 Tel: (613) 995-7052 Fax: (613) 995-29626408 Fraser Street Vancouver,British Columbia V5W 3A4 Tel: (604) 775-5323 Fax: (604) 775-5420
 
moral obligation to provide clinical trials to Canadian patients.This is a matter of utmosturgency,as many MS patients are experiencing a rapid decline in their health.
Request for Funding for a National, Public Cord Blood Bank
Blood that is found in the umbilical cord of a newborn infant is composed of stem cells, whichcan be collected without controversy.Umbilical cord stem cells have been used for over 20 years in the treatment of many conditionsand diseases, including aplastic anemia, Hurler's syndrome, lymphoid and myloid leukemia,sickle cell disease, and thalassemia, and at an experimental level, for the treatment of autoimmune disorders such as diabetes, multiple sclerosis, and vascular disorders.Canadians would benefit from the broad collection of umbilical cord blood,which reflects thegenetic diversity of Canada that can be used to treat HLA matched recipients.The Provinces and Territories of Canada have determined the need for such a national collectionof cord blood to be managed by Canadian Blood Services and Hema-Quebec,but have notallocated financial resources to support its establishment. A Canadian bank would be subject to our own safety standards--rather than having to rely onthose of other countries--; and wouldincrease the probability of a match inside our country,substantially reducing the current cost of US$25 000 per cord for importing stem cells (adulttransplants usually require cells from at least two cords).Moreover, by establishing a Canadianbank, we would participate as an equal partner in the exchanges of ideas and best practicesamong the approximately 60 foreign banks.It is important to note that Canadian Blood Services already funds and operates a registry of donors for bone marrow stem cells.The same technology, informatics and communicationnetworks could be readily adapted for a public cord blood bank.
Room 250, Confederation Building Ottawa, Ontario KIA OA6 Tel: (613) 995-7052 Fax: (613) 995-29626408 Fraser Street Vancouver, British Columbia V5W 3A4 Tel: (604) 775-5323 Fax: (604) 775-5420

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