Bill C-280: An Act to establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI)

C-280 First Session, Forty-first Parliament, 60 Elizabeth II, 2011 HOUSE OF COMMONS OF CANADA BILL C-280 An Act to establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) first reading, September 21, 2011 Ms. Duncan (Etobicoke North) 411365 SUMMARY This enactment requires the Minister of Health to convene a conference with the provincial and territorial ministers responsible for health for the purpose of establishing a national strategy to ensure clinical trials are started for the treatment of chronic cerebrospinal venous insufficiency (CCSVI) and to estimate the funding necessary to undertake those clinical trials in Canada and to track individuals who have been treated for CCSVI. Also available on the Parliament of Canada Web Site at the following address:http://www.parl.gc.ca 1st Session, 41st Parliament, 60 Elizabeth II, 2011 house of commons of canada BILL C-280 An Act to establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Whereas there is increasing scientific study of chronic cerebrospinal venous insufficiency (CCSVI), as demonstrated by published peer-reviewed articles, as well as presentations at major scientific conferences on CCSVI — name­ly those which took place in Hamilton, Canada (February 2010), New York, United States (July 2010), Washington, United States (October 2010), Katowice, Poland (March 2011), Bologna, Italy (March 2011), Chicago, United States (April 2011) and San Diego, United States (May 2011); Whereas many different groups in countries all over the world (e.g. Greece, Poland, Jordan, United States) have shown, by means of gold standard catheter venography, the presence of CCSVI in more than 90% of individuals who have multiple sclerosis (MS), and an international, multicentre study of more than 705 cases has shown, using echo-colour-Doppler, the presence of CCSVI in 86% of individuals who have MS; Whereas over 12,500 individuals with CCSVI have been treated in over 50 countries, and individuals who received treatment for CCSVI have reduced brain fog, reduced fatigue and improved circulation and motor skills, as demonstrated by improved Expanded Disability Status Scale scores, improved MS Quality of Life scores and improved Modified Fatigue Impact Scale scores; Whereas clinical trials have demonstrated the safety of using balloon angioplasty in treating CCSVI; Whereas every individual with MS is different, with different venous anatomy, a different course of MS and a different length of illness, and some individuals experience an improvement in symptoms after receiving the treatment for CCSVI; Whereas multiple clinical trials on the treatment for CCSVI are underway in the United States and in other countries; Whereas the cancelling of medical appointments and mandatory tests, the denial of treatment and the threatening of individuals following treatment for CCSVI is continuing; And whereas the Parliament of Canada recognizes that every year 400 Canadians who suffer from MS die, many by taking their own life, and that any delay in starting clinical trials on the treatment for CCSVI may mean more damage to individuals suffering from MS, and possibly the difference between walking and not walking, living independently and living in care, or living and dying; Now, therefore, Her Majesty, by and with the advice and consent of the Senate and House of Commons of Canada, enacts as follows: SHORT TITLE Short title 1. This Act may be cited as the National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act. INTERPRETATION Definitions 2. The following definitions apply in this Act. “CCSVI”« IVCC » “CCSVI” means chronic cerebrospinal venous insufficiency. “Minister”« ministre » “Minister” means the Minister of Health. “treatment for CCSVI”« traitement de l'IVCC » “treatment for CCSVI” means the medical procedure that uses balloon angioplasty to widen constricted veins in order to improve blood flow from the brain. NATIONAL STRATEGY Conference 3. The Minister must, within 30 days after this Act comes into force, convene a conference with the provincial and territorial ministers responsible for health for the purpose of establishing a national strategy for CCSVI in order to, among other things, (a) ensure that proper health care is not refused to a person on the ground that the person is seeking, or has obtained, the treatment for CCSVI outside Canada, whether or not that treatment is offered in Canada; (b) identify the most appropriate level of clinical trials for the treatment of CCSVI to undertake in Canada in order to place Canada at the forefront of the international research; (c) estimate by January 1, 2012 the funding required to (i) undertake, by March 1, 2012, clinical trials for the treatment for CCSVI in multiple centres across Canada, and (ii) track individuals who have received the treatment for CCSVI, whether or not that treatment was received in Canada; (d) establish, by December 1, 2011, an advisory panel, to be composed of experts who have been or are actively engaged in imaging or treating individuals with CCSVI and of an individual who has been treated for CCSVI, to (i) advise the Minister on the treatment for CCSVI, (ii) identify criteria for a call for further research proposals on clinical trials for the treatment for CCSVI, (iii) advise on the basis for selecting the best research proposals to fund, (iv) advise on the development of appropriate standards for diagnosing and treating CCSVI, (v) advise on the appropriate training and expertise required for individuals performing that diagnosis and of those providing that treatment, and (vi) advise on the most appropriate and efficient mechanisms for tracking individ­uals who undergo the treatment for CCSVI to ensure the accumulation of knowledge relating to the treatment’s efficacy, its effect on the individual’s quality of life, the duration of that effect, the need for any repeat treatment for CCSVI and whether there were any side effects or risks that should be considered in future decisions to provide that treatment; and (e) ensure that clinical trials referred to in paragraph (b) begin in Canada by March 1, 2012. Preparation and publication of report 4. The Minister must prepare a report setting out the national strategy and publish it on the departmental website within one year after the conclusion of the conference referred to in section 3. Report to Parliament 5. The Minister must cause a copy of the report referred to in section 4 to be laid before each House of Parliament on any of the first 90 days on which that House is sitting after the report has been published on the departmental website. REVIEW AND REPORT Review and report 6. The Government of Canada must (a) complete a review of the effectiveness of the national strategy no later than five years after the day on which the report referred to in section 4 is published on the departmental website; and (b) table a report of its findings before each House of Parliament within the next ten sitting days after the day on which the review is completed. REGULATIONS Regulations 7. The Governor in Council may make regulations for carrying out the purposes and provisions of this Act. Published under authority of the Speaker of the House of CommonsAvailable from:Publishing and Depository ServicesPublic Works and Government Services Canada