Media Backgrounder
September 2012 - Myeloma Month in B.C.
MULTIPLE MYELOMA: STEADY PROGRESS TOWARDS A CURE DEPENDS ON CLINICAL TRIALS & INCREASED FUNDING
Medical science has dedicated some of its brightest minds to finding a cure. Yet there is still no solution to multiple myeloma, a devastating bone-marrow cancer that attacks the immune system.
The good news is that after a half century of making little progress, researchers in the last decade have developed breakthrough drugs that are extending lifespans and allowing patients to manage their symptoms more effectively.
The job now is to increase the relatively low numbers of patients participating in clinical trials and ensure better funding for cutting-edge research, explains Lillian Barton of the Multiple Myeloma Vancouver Island Support Group.
September is Myeloma Month in British Columbia. It’s an opportunity for those engaged in the fight to shine attention on this relatively little-known disease. The second annual Stroll For A Cure, a fundraising walk set for Sunday, Sept. 23 at Town Park Centre in Coquitlam, is the focal point for the month’s activities.
Barton notes that Myeloma Month is the time to celebrate the progress that’s been made to date and look towards a brighter future. She’s particularly excited about research undertaken by the University of Calgary’s Dr. Don Morris, who has identified a common virus that kills myeloma cells.
“It’s amazing news and the cause for a great deal of excitement in our community,” says Barton, who was diagnosed with myeloma herself in 1997 yet has long outlived her initial two-year prognosis thanks to treatments at the Vancouver General Hospital’s Hematology Research and Clinical Trials Unit.
“We’ve come a long way in a short period of time but there’s still much to be done,” adds Barton. “Clinical trials are the key. They’re crucial since it’s only through trials that patients can get access to new drugs when other treatments fail. Ensuring that our researchers are well funded and have patients to work with is our ongoing objective.”
Clinical Trials Pave A Path to the Cure
More than 6,000 Canadians are now living with multiple myeloma, a total that grew by 15 percent in 2011 with 2,300 new diagnoses counterbalanced by 1,350 deaths. The Vancouver Island support group, co-founded by Barton with Donna Dickinson, meets regularly in Victoria and Nanaimo. An independent group also meets in Campbell River under the direction of group leader Linda Latham.
Not to be confused with melanoma, a skin cancer, multiple myeloma affects blood cell formation and the immune system. Once considered a rare cancer mainly impacting seniors, it has been on the rise in B.C. in recent years and is now beginning to affect young adults as well. Environmental implications are a possible factor in the increase of cases.
While there is no cure, Barton notes that clinical research has entered a revolutionary and exciting phase in which myeloma has become a much more treatable disease. These are still early days, however. Despite high response rates, the majority of patients continue to relapse, particularly those with genetically defined high-risk disease.
New combination therapies and emerging novel agents under investigation offer potentially more effective treatments with less toxicity than currently used regimens, even among patients faced with a deteriorating prognosis. This is the direction of current clinical trial research and underlines its importance.
What is a Clinical Trial?
A clinical trial is simply a research study that involves people, explains Barton. It is the final step in a long process that begins with laboratory research. Clinical trials try to answer specific scientific questions in finding better ways to prevent, detect, or treat diseases like multiple myeloma as well as improve care for patients.
Myeloma researchers have made tremendous headway with 21st century drugs like Velcade and Revlimid, both of which were run through extensive clinical trials before earning Health Canada’s stamp of approval. There are literally hundreds of other potential “wonder” drugs awaiting testing, however.
As funding rolls in, VGH researchers can systematically investigate the worth of each of these drugs in turn. “Some of the best cancer treatments today are based on previous study results,” notes Barton. “Clinical trials have helped many people with myeloma and other cancers live longer. The more people who participate in clinical trials, the faster research questions can be answered that will lead to better treatment choices.”
Reality Checks: Funding and Participation
The clinical trial process in B.C. and nationally faces major roadblocks. Thanks to a lack of information, patients have traditionally been wary about joining a clinical trial. Only 7 percent of Canadians with the disease are currently undergoing trials compared to the U.K. accrual rate of 17 percent, one of the highest in the world.
Many with the disease express anxiety about the side effects of new drugs. Others believe they will be treated as “guinea pigs,” says Barton, when in fact research facilities deliver high-quality care and follow-up.
In B.C. another major factor is the lack of provincial funding for myeloma research. While substantial funds have been raised for the VGH through private donations and fundraising concerts featuring Nanaimo, BC jazz icon Diana Krall, full and proper research can’t proceed without additional funding.
Stoll For A Cure 2012
Raising cash for the Vancouver General Hospital’s Haematology Research and Clinical Trials Unit is the objective of Myeloma Vancouver’s second annual Stroll For A Cure on Sept. 23 at Town Centre Park in Coquitlam. The family-friendly event involves a five kilometer (shorter or longer) hike around Lafarge Lake.
Organizer Francesca Plaster, founder of the Vancouver Myeloma Support Group, understands the significance of a robust clinical trial program in BC. Despite documented savings of $50 million to the government since the unit was launched in 2004, public funding remains minimal and largely depends upon the philanthropy of a handful of key people and patients.
“It is important that every person affected by multiple myeloma become engaged in the process of finding a cure for this devastating cancer,” says Plaster. “New drugs are being trialled every day across North America. We need to ensure that every person in British Columbia has access to the most cutting edge research.”
Plaster hopes to raise at least $50,000 in doubling last year’s tally and would like to attract at least 400 participants for the pleasant, communal walk in the park. Fundraising to date has netted $9,063 towards that total.
Demystifying Clinical Trials
Clinical trials are usually classified into one of four phases, explains Barton. Volunteer patients are needed in varying numbers at each of these four stages. The care and health of the patient is always paramount in clinical trials.
Understanding what phase a trial is in can be helpful as patients determine the risk/benefit ratio of participation at one stage or another.
Phase 1: Safety This is the first step in testing a new cancer agent in humans. In these initial small-group studies (20 to 80 people), researchers explore how the drug works best (by pill or injection), its optimal frequency and dosage, and how it works in the body.
Phase 2: Efficacy of the New Treatment. Now is the time to test the safety of the new agent and begin to evaluate how well it works against a specific type of cancer. In these trials, the new agent is given to groups of people using the dosage found to be safe in phase 1 trials. Phase 2 cancer trials usually have less than 100 participants.
Phase 3: Comparisons with Standard Treatment. Is the new drug better, the same or worse than current best-available treatments? These trials are large, multi-centred and involve hundreds of people. “Blinded” trials involve patients who don’t know whether they’re receiving the agent or a placebo. “Double blinded” ensure that neither the patient nor the researcher know who gets the treatment until completion of the trial, thereby guaranteeing unbiased results. Important note: If the trial is not working, patients will be switched to another treatment.
Phase 4: Post-Approval Follow-up. Once Health Canada has approved the drug and it begins to be widely used, research continues into how well it’s working in terms of its risks, benefits, and optimal use over the long haul.
Why is it important to support local myeloma research?
Vancouver General Hospital’s Hematology Research and Clinical Trials Unit is a successful and active centre serving B.C. patients. Even though its staff is underfunded and overworked, it has so far conducted 76 trials – 11 in the last year alone – and is considered the hub of some of the most exciting multi-centre clinical trial research in the world.
Promoting and funding research on the west coast is especially critical to patients living in the region. The VGH’s clinical trial program is open to all B.C. residents with a blood cancer who meet the medical criteria. Trials conducted outside the province are not an option for many since the majority of patients are either physically or financially unable to travel to other provinces or the U.S.
Just as importantly, patients will get the help they need in dealing with the disease. Improved overall survival for cancer patients is a proven result of clinical trials, which can be essential if a current treatment fails and new ones are not yet approved by Health Canada.
For further information please contact …
Lillian Barton, Multiple Myeloma Vancouver Island Support Group
Vancouver Island Donations to clinical trials: http://www.myelomavancouverisland.ca/donate.html
250-743-2693; email: [email protected]
Links for Further Research
Myeloma Canada: http://www.myelomacanada.ca
BC Cancer Agency: http://www.bccancer.bc.ca
Myeloma Vancouver Support Group: http://www.myelomavancouver.ca/events.html
Multiple Myeloma Vancouver Island Support Group: http://www.myelomavancouverisland.ca/
Multiple Myeloma Research Foundation: http://www.themmrf.org/
Stroll For A Cure On-Line Donations: http://my.e2rm.com/teamPage.aspx?teamID=283832&langPref=en-CA&Referrer=http%3a%2f%2fwww.worldclasshealthcare.ca%2fEvents%2fICE_mp.html
Quick Facts
< September is Myeloma Month in BC
< 2011 Canadian stats: 2300 newly diagnosed people with myeloma and 1400 deaths reported annually. (source: Myeloma Canada)
< 2011 BC stats: 260 myeloma patients were diagnosed in BC and 170 people died from this form of cancer in the province that year. (source: BC Cancer Agency)
< Every year in B.C. there are approximately 2,000 new adult cases of blood cancers and 4,000 new adult cases of thrombosis (abnormal or excessive blood clotting).
< Adella Krall passed away from multiple myeloma in 2002. The Krall family has raised more than $6 million for the UBC & VGH Foundation to improve the care for patients and families living with blood-related cancers.
September 2012 - Myeloma Month in B.C.
MULTIPLE MYELOMA: STEADY PROGRESS TOWARDS A CURE DEPENDS ON CLINICAL TRIALS & INCREASED FUNDING
Medical science has dedicated some of its brightest minds to finding a cure. Yet there is still no solution to multiple myeloma, a devastating bone-marrow cancer that attacks the immune system.
The good news is that after a half century of making little progress, researchers in the last decade have developed breakthrough drugs that are extending lifespans and allowing patients to manage their symptoms more effectively.
The job now is to increase the relatively low numbers of patients participating in clinical trials and ensure better funding for cutting-edge research, explains Lillian Barton of the Multiple Myeloma Vancouver Island Support Group.
September is Myeloma Month in British Columbia. It’s an opportunity for those engaged in the fight to shine attention on this relatively little-known disease. The second annual Stroll For A Cure, a fundraising walk set for Sunday, Sept. 23 at Town Park Centre in Coquitlam, is the focal point for the month’s activities.
Barton notes that Myeloma Month is the time to celebrate the progress that’s been made to date and look towards a brighter future. She’s particularly excited about research undertaken by the University of Calgary’s Dr. Don Morris, who has identified a common virus that kills myeloma cells.
“It’s amazing news and the cause for a great deal of excitement in our community,” says Barton, who was diagnosed with myeloma herself in 1997 yet has long outlived her initial two-year prognosis thanks to treatments at the Vancouver General Hospital’s Hematology Research and Clinical Trials Unit.
“We’ve come a long way in a short period of time but there’s still much to be done,” adds Barton. “Clinical trials are the key. They’re crucial since it’s only through trials that patients can get access to new drugs when other treatments fail. Ensuring that our researchers are well funded and have patients to work with is our ongoing objective.”
Clinical Trials Pave A Path to the Cure
More than 6,000 Canadians are now living with multiple myeloma, a total that grew by 15 percent in 2011 with 2,300 new diagnoses counterbalanced by 1,350 deaths. The Vancouver Island support group, co-founded by Barton with Donna Dickinson, meets regularly in Victoria and Nanaimo. An independent group also meets in Campbell River under the direction of group leader Linda Latham.
Not to be confused with melanoma, a skin cancer, multiple myeloma affects blood cell formation and the immune system. Once considered a rare cancer mainly impacting seniors, it has been on the rise in B.C. in recent years and is now beginning to affect young adults as well. Environmental implications are a possible factor in the increase of cases.
While there is no cure, Barton notes that clinical research has entered a revolutionary and exciting phase in which myeloma has become a much more treatable disease. These are still early days, however. Despite high response rates, the majority of patients continue to relapse, particularly those with genetically defined high-risk disease.
New combination therapies and emerging novel agents under investigation offer potentially more effective treatments with less toxicity than currently used regimens, even among patients faced with a deteriorating prognosis. This is the direction of current clinical trial research and underlines its importance.
What is a Clinical Trial?
A clinical trial is simply a research study that involves people, explains Barton. It is the final step in a long process that begins with laboratory research. Clinical trials try to answer specific scientific questions in finding better ways to prevent, detect, or treat diseases like multiple myeloma as well as improve care for patients.
Myeloma researchers have made tremendous headway with 21st century drugs like Velcade and Revlimid, both of which were run through extensive clinical trials before earning Health Canada’s stamp of approval. There are literally hundreds of other potential “wonder” drugs awaiting testing, however.
As funding rolls in, VGH researchers can systematically investigate the worth of each of these drugs in turn. “Some of the best cancer treatments today are based on previous study results,” notes Barton. “Clinical trials have helped many people with myeloma and other cancers live longer. The more people who participate in clinical trials, the faster research questions can be answered that will lead to better treatment choices.”
Reality Checks: Funding and Participation
The clinical trial process in B.C. and nationally faces major roadblocks. Thanks to a lack of information, patients have traditionally been wary about joining a clinical trial. Only 7 percent of Canadians with the disease are currently undergoing trials compared to the U.K. accrual rate of 17 percent, one of the highest in the world.
Many with the disease express anxiety about the side effects of new drugs. Others believe they will be treated as “guinea pigs,” says Barton, when in fact research facilities deliver high-quality care and follow-up.
In B.C. another major factor is the lack of provincial funding for myeloma research. While substantial funds have been raised for the VGH through private donations and fundraising concerts featuring Nanaimo, BC jazz icon Diana Krall, full and proper research can’t proceed without additional funding.
Stoll For A Cure 2012
Raising cash for the Vancouver General Hospital’s Haematology Research and Clinical Trials Unit is the objective of Myeloma Vancouver’s second annual Stroll For A Cure on Sept. 23 at Town Centre Park in Coquitlam. The family-friendly event involves a five kilometer (shorter or longer) hike around Lafarge Lake.
Organizer Francesca Plaster, founder of the Vancouver Myeloma Support Group, understands the significance of a robust clinical trial program in BC. Despite documented savings of $50 million to the government since the unit was launched in 2004, public funding remains minimal and largely depends upon the philanthropy of a handful of key people and patients.
“It is important that every person affected by multiple myeloma become engaged in the process of finding a cure for this devastating cancer,” says Plaster. “New drugs are being trialled every day across North America. We need to ensure that every person in British Columbia has access to the most cutting edge research.”
Plaster hopes to raise at least $50,000 in doubling last year’s tally and would like to attract at least 400 participants for the pleasant, communal walk in the park. Fundraising to date has netted $9,063 towards that total.
Demystifying Clinical Trials
Clinical trials are usually classified into one of four phases, explains Barton. Volunteer patients are needed in varying numbers at each of these four stages. The care and health of the patient is always paramount in clinical trials.
Understanding what phase a trial is in can be helpful as patients determine the risk/benefit ratio of participation at one stage or another.
Phase 1: Safety This is the first step in testing a new cancer agent in humans. In these initial small-group studies (20 to 80 people), researchers explore how the drug works best (by pill or injection), its optimal frequency and dosage, and how it works in the body.
Phase 2: Efficacy of the New Treatment. Now is the time to test the safety of the new agent and begin to evaluate how well it works against a specific type of cancer. In these trials, the new agent is given to groups of people using the dosage found to be safe in phase 1 trials. Phase 2 cancer trials usually have less than 100 participants.
Phase 3: Comparisons with Standard Treatment. Is the new drug better, the same or worse than current best-available treatments? These trials are large, multi-centred and involve hundreds of people. “Blinded” trials involve patients who don’t know whether they’re receiving the agent or a placebo. “Double blinded” ensure that neither the patient nor the researcher know who gets the treatment until completion of the trial, thereby guaranteeing unbiased results. Important note: If the trial is not working, patients will be switched to another treatment.
Phase 4: Post-Approval Follow-up. Once Health Canada has approved the drug and it begins to be widely used, research continues into how well it’s working in terms of its risks, benefits, and optimal use over the long haul.
Why is it important to support local myeloma research?
Vancouver General Hospital’s Hematology Research and Clinical Trials Unit is a successful and active centre serving B.C. patients. Even though its staff is underfunded and overworked, it has so far conducted 76 trials – 11 in the last year alone – and is considered the hub of some of the most exciting multi-centre clinical trial research in the world.
Promoting and funding research on the west coast is especially critical to patients living in the region. The VGH’s clinical trial program is open to all B.C. residents with a blood cancer who meet the medical criteria. Trials conducted outside the province are not an option for many since the majority of patients are either physically or financially unable to travel to other provinces or the U.S.
Just as importantly, patients will get the help they need in dealing with the disease. Improved overall survival for cancer patients is a proven result of clinical trials, which can be essential if a current treatment fails and new ones are not yet approved by Health Canada.
For further information please contact …
Lillian Barton, Multiple Myeloma Vancouver Island Support Group
Vancouver Island Donations to clinical trials: http://www.myelomavancouverisland.ca/donate.html
250-743-2693; email: [email protected]
Links for Further Research
Myeloma Canada: http://www.myelomacanada.ca
BC Cancer Agency: http://www.bccancer.bc.ca
Myeloma Vancouver Support Group: http://www.myelomavancouver.ca/events.html
Multiple Myeloma Vancouver Island Support Group: http://www.myelomavancouverisland.ca/
Multiple Myeloma Research Foundation: http://www.themmrf.org/
Stroll For A Cure On-Line Donations: http://my.e2rm.com/teamPage.aspx?teamID=283832&langPref=en-CA&Referrer=http%3a%2f%2fwww.worldclasshealthcare.ca%2fEvents%2fICE_mp.html
Quick Facts
< September is Myeloma Month in BC
< 2011 Canadian stats: 2300 newly diagnosed people with myeloma and 1400 deaths reported annually. (source: Myeloma Canada)
< 2011 BC stats: 260 myeloma patients were diagnosed in BC and 170 people died from this form of cancer in the province that year. (source: BC Cancer Agency)
< Every year in B.C. there are approximately 2,000 new adult cases of blood cancers and 4,000 new adult cases of thrombosis (abnormal or excessive blood clotting).
< Adella Krall passed away from multiple myeloma in 2002. The Krall family has raised more than $6 million for the UBC & VGH Foundation to improve the care for patients and families living with blood-related cancers.