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News Archives2003 Archives
2002 Archives
2001 Archives
Lorna Stevens Receives Furthur Recognition For Her Dedication What comes to mind when we hear the name Lorna Stevens. As the President and Co-Founder of The Neutropenia Support Association Inc., many of us know her, or know of her and her mission. Her intense drive and dedication to help increase the knowledge and research with respect to many diseases and disorders is exemplary. The dedication, passion and commitment Lorna Steven's brings to all her causes is well recognized and appreciated by many. Over the last year Lorna has received 3 new recognitions to add to her vast collection of awards, certificates, and memorable news articles. Read more. National Heart, Lung And Blood Institute The National Heart, Lung, and Blood Institute (NHLBI) has convened it's fourth annual meeting of public interest organizations (PIOs) that are concerned with heart, lung, and blood diseases. Again they invited Lorna Stevens to attend as they valued Lorna's ideas, respected her viewpoints, and needed her support. This meeting offered an opportunity for the Institute to learn more about our interests and concerns and for us to become better acquainted with the Institute's mission and programs. There were a variety of presentations and discussions, opportunity to interact with other PIO representatives, ask questions, voice opinions, and offer recommendations. Lorna Stevens was a panelist for one of the sessions and found it to be a valuable learning experience. This meeting was followed by a public session of the National Heart, Lung and Blood Advisory Council meeting - which Lorna Stevens also attended. Stakeholder Consultatative Regulatory Workshop On West Nile Virus Health Canada’s Biologics and Genetic Therapies Directorate held a Stakeholder Consultative Regulatory Workshop on West Nile Virus which Lorna Stevens attended. The workshop focused on state of the art science in this area and addressed risks to the blood supply and transplantation in Canada. The meeting included a plenary session, including guest speakers from the industry, blood operators and international groups. Opinions were sought on the following topics: What are the key messages to be about transfusion and transplantation risks? What strategies should be considered to reduce risk of WNV transmission through transfusion or transplantation? Pros and cons will be considered for each strategy. What processes can be put in place to facilitate development of testing for WNV? What measures should be considered to reduce risk if tests for WNV are not available? What areas of WNV research need focused attention? Canadian Blood Services’ Scientist Discovery May Lead to Improved Treatment for HIV/AIDS Ottawa, February 4, 2002 — Canadian Blood Services’ Dr. Donald Branch together with other researchers in Toronto and Winnipeg have discovered a new protein that helps HIV to infect cells. The protein called VPAC1 is found on the surface of many cells, including those that can.... Read more Pegfilgrastim is now approved in the U.S. only The long acting version of Neupogen, pegfilgrastim is now approved in the U.S. only. The brand name is Neulasta and it is a once per cycle fixed dose of 6mg in a prefilled syringe. The press release and more information can be found at www.Amgen.com. It has been filed in Canada but is not yet approved. We do not expect approval this year. The product has not yet been tested in SCN patients. CORD Aims To Assist With Canadian Orphan Drug Policy CORD News, Fall 2002 - Many of our readers may know only too well that rare disease sufferers often have few or no options for treatment. As the Ottawa Citizen observed in an article this year, "the dearth of drug treatments for (rare disorder patients) is a reflection of basic economics. The profit-driven pharmaceutical industry has little incentive to pour research money into discoveries that will not return big dividends. Small patient populations hold our little potential reward" (January 21, 2002). For this reason, CORD (Canadian Organization for Rare Disorders) is currently invesigating the validity and possibility of developing an Orphan Drug Policy in Canada.Read more... Counterfeit Neupogen© Poses High Health Risk Amgen Inc. Recently became aware of the existence in the U.S. of a counterfeit drug product labeled as NeupogenÒ 300 mcg vials in ten-pack boxes. In cooperation with the U.S. Food and Drug Administration (FDA), Amgen is informing patients, physicians, pharmacies, and wholesalers about this serious health risk. The counterfeit vials examined to date contain a clear liquid but no active ingredient. The counterfeit product, which is definitely not Neupogen (Filgrastim), was neither manufactured nor distributed by Amgen and may pose a serious health risk to patients. For more information contact your health care provider or visit http://www.amgen.com/news/news01/release010510.html Excerpt from Letter to
Lorna Stevens, President, Neutropenia Support Association Inc., July 2001 Health Canada proposes to strengthen its current Policy on blood donor deferral to mitigate the theoretical risk of transmission of vCJD through blood transfusions. The draft sent to you proposes shortening the deferral period for residing in or travel history to the UK and France from the current 6 months to 3 months. In addition, new measures are proposed to defer donors with 5 years or more travel/residency in the following European countries: Germany, Italy, Netherlands, Switzerland, Austria, Belgium, Spain, Republic of Ireland, Portugal, Denmark, Luxembourg, Liechtenstein. Response from The Neutropenia Support Association Inc. Our organization has commented to Health Canada over the phone regarding this issue that needs to be addressed. We requested further information, unfortunately, this has delayed our response. However, we feel your proposal continues to balance the need to ensure optimal access for Canadians to safe blood and the need to allow for optimal blood transfusion practices. We are still concerned about the potential risk that mad cow disease, or B.S.E., may be incubating in cattle and humans, and therefore may pose a theoretical risk of transmission though blood transfusions. It is our hope the ventures to license blood purification methods and research with new drug therapy, now in clinical trial, will halt the progression and reverse its damage. In our opinion, until positive conclusive data through research supports a different proposal, we feel your current vCJD proposal is a timely and precautionary action. We know the blood operators will have to deal with the negative impact on their donor bases thus affecting the supply of blood. We look forward to any future developments as you continue to analyze the vCJD risk. Sincerely, Lorna Stevens, President, Neutropenia Support Association Inc. Provincial Hepatitis C Compensation Package Applications Now Available. From "Hemophilia Horizon" newsletter Fall 2001 - 1 Application forms are now available to Manitobans infected with Hepatitis C through the Canadian blood supply before January 1, 1986 and after July 1, 1990. The Manitoba Hepatitis C Assistance Package (MHCAP) consists of a one-time payment of $10,000 from the Manitoba government. To apply for compensation, individuals must complete a form which requests information on how the virus was contracted, when they were diagnosed, plus information from their doctor or specialist. There is also a form that the applicant’s doctor must complete. To obtain an application package and/or assistance in filling out the application, or for more information regarding MHCAP, call 788-6339 (in Winnipeg) or toll free 1-866-357-0196. All information will be handled confidentially in accordance with the strict provisions of Manitoba’s Personal Health Information Act. F.Y.I. From The NHLBI (Public Interest from the National Heart, Lung, and Blood Institute Fall 2001) On August 9, President Bush announced that Federal Dollars may be used to fund important basic research on human embryonic stem cells. Dr. Ruth Kirschstein, Acting Director of NIH, expressed the NIH community’s enthusiastic support of the President’s decision, and stated "The approach he has outlined is sound, and we understand the President’s clear desire to move forward with care. Using the more than 60 existing cell lines from around the world, many more re- searchers will now be able to explore the potential of human, embryonic stem cells, in addition to the extensive work already sponsored by NIH using adult stem cells. We believe this combined research has high potential both for opening new doors in basic scientific understanding and for discovery of new treatments for some of our most devastating diseases." To help you understand what is know, and what is not known, about stem cells, the NIH has prepared a comprehensive, yet comprehensible report that is available at: www.nih.gov/news/stemcell/scireport.htm In addition to a glossary and descriptions of different types of stem cells, the report contains examples of how stem cell research may bene- fit patients with specific diseases, including conditions affecting the blood or cardiovascular systems. Other chapters describe how stem cells could be used to deliver gene therapies and the safety issues that need to be considered before stem cell-based therapies are developed.
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