Advocacy

Partners in Prevention

The Giant Colon Tour greeted over 1,300 health and safety professionals at the Partners in Prevention 2015 Health and Safety Conference and Trade Show at the International Centre in Mississauga.

It is Canada’s health and safety industry’s largest and longest running conference and trade show, where over 4,000 health and safety professionals connected to do business.

From Rockstar To Fundraiser

For Steve Mastroianni (aka VØID), 2013 was a year he won’t soon forget.

After touring all over the world with top Rock Bands such as KISS, Our Lady Peace, and Finger Eleven, Steve’s life took a devastating turn for the worse when his father, Anthony Mastroianni, told him that he’s just been diagnosed with Stage 4 Colon Cancer.

“When my father was diagnosed last Spring, I knew right away that I would put my music career on hold and stop at nothing to get him back to 100% and onto the golf course. I didn’t know exactly how we would do it, but I knew that his passion would be a KEY component to his recovery.” said Steve.

Shortly after the diagnosis, the Mastroianni family was approached by Fil from the Colorectal Cancer Association of Canada (CCAC), offering to coach everyone involved through the difficult time.

“Fil answered EVERY single one of our questions about the upcoming process, educated us about how Colorectal Cancer functions in the body, and connected us with all the people who helped my father fully recover and return to the golf course.” said Steve.

Despite the emotional rollercoaster ride that was 2013-2014, after two surgeries, countless visits to the hospital, and the horrors of spending more time in the emergency room than his previous 28 years combined, Steve is proud to say that they achieved their goal on July 22nd, 2014, just over one year after the diagnosis.

Photo: Steve Matroianni (aka VØID) and father Anthony Mastroianni

Photo: Steve Matroianni (aka VØID) and father Anthony Mastroianni

Photo: “The path that Fil and the CCAC set out for us in 2013 was the crucial element that ensured my Dad spent this summer out of the hospital and on the golf course. I may have toured with KISS, but Fil is the real Rockstar here!” said Steve.

So WHY VØID Cancer?

After traveling the world for 10 years with a guitar on his back, Steve is no stranger to communicating his message to large crowds.

However, it was his experience with his father this past year that would help to put everything in perspective and inspire him to use his guitar to make an even bigger impact in the world.

His goal is to Teach and Inspire new Guitar Players around the world, while donating proceeds to the CCAC to further Cancer Research and introduce new programs for those who are suffering from this horrible disease.

He calls this movement VØID Cancer and his mission is to Eliminate Cancer: One Note at a Time.

He plans to accomplish this by selling his online coaching platform & digital products as well as through LIVE workshops for patients, caregivers, and anyone else who would like to learn how to create beautiful music and lasting change.

If you or someone you love has always dreamed of playing guitar, or just wants to give it a try, then there is no better time to learn than now.

“I can’t think of any better incentive to practice than knowing that proceeds will be going to further Cancer research.” said Steve.

Even his Rockstar mentor Gene Simmons approves of his new venture: “VØID is a special guy and what he is doing with VØID Cancer is admirable.” – Gene Simmons

Photo: Gene Simmons from KISS and Steve Mastroainni (aka VØID) We couldn’t agree more.

Photo: Gene Simmons from KISS and Steve Mastroainni (aka VØID) We couldn’t agree more.

Please click the link below and sign up to find out how you can get started today.

www.voidcancer.com

Are Provinces taking too long to approve potentially life-saving cancer drugs in your opinion? Tell us what you think about these delays,.

Provinces taking too long to approve potentially life-saving cancer drugs: study

 

Author of the study, Nigel Rawson says while the organization is doing its job, provinces are not required to take up the recommendations.
Christina Commisso

Christina Commisso, CTVNews.ca Writer

Published Thursday, July 17, 2014 10:02AM EDT
Last Updated Thursday, July 17, 2014 10:44AM EDT

Canada’s two-tiered process of approving potentially life-saving oncology drugs is preventing cancer patients in some provinces from accessing medication that’s readily available in other parts of the country, according to a new study.

The study, released by conservative think-tank Fraser Institute on Thursday, looks at the effectiveness of the pan-Canadian Oncology Drug Review (pCODR), which was established in 2010 to recommend new cancer drugs to all the provinces and territories, except Quebec.

While pCODR recommends drugs for approval, provinces are not required to accept their recommendations. The result is certain cancer drugs are covered by provincial health care plans in some provinces, but not others.

Canada AM: Cancer drug delays

Nigel Rawson appears on Canada AM, Thursday, July 17, 2014.

“For negative recommendations, the provinces generally agree. For recommendations that are favourable, for provinces it’s sort of a ‘maybe,’ or whenever (the provinces) can actually afford to fund these drugs,” study author Nigel Rawson told CTV’s Canada AM on Thursday.

Rawson said, in many cases, the key factor keeping drugs from being approved is cost.

“They are expensive because they are (used) for difficult cancers or cancers that are late-stage,” he said. “There are often not a lot of patients projected for these drugs, and they take a long while to develop.”

The study also found that, while the pCODR’s aims to take between five and eight months to review a drug, some reviews take up to 10 months.  It could then take a province up to a year to conduct their own review of the drug before deciding whether it will be covered.

The average time between a pCODR recommendation and provincial approval is the longest in Newfoundland and Labrador, where it was measured at 366 days. The average time spans in the other provinces:

  • New Brunswick, 339 days
  • Prince Edward Island, 309 days
  • Manitoba, 249 days
  • Nova Scotia, 218 days
  • British Columbia, 197 days
  • Alberta, 183 days
  • Saskatchewan, 154 days
  • Ontario, 150 days

“A lot of these patients, they’re projected life expectancy isn’t too great,” Rawson pointed out.

The study referenced the struggle of an Ontario mother suffering from late-stage brain cancer who lobbied the provincial government to fund a cancer drug that could have prolonged her life.

Kimm Fletcher, a 41-year-old mother of two, went public with her fight to have the province help cover the cost of Avastin — a cancer drug that’s covered for brain cancer treatment in Manitoba, British Columbia and Saskatchewan.

In Ontario, however, the drug is only covered for patients with colon cancer.

Fletcher died of cancer earlier this year.

Rawson said many cancer patients are forced to turn to donations from family and friends to pay for unfunded drugs, while others forego the treatment all together.

The study recommends some ways to improve the current system.

Rawson recommends that provinces make a commitment to accept a “reasonable proportion” of these drugs.

“The pCODR has provided positive recommendations for just over 80 per cent of these products,” he said. “It would be appropriate, in my opinion, for the provinces to make a commitment to take a high proportion of these products within a reasonable amount of time — like 120 days.”

Rawson added that the drug approval process in Canada is fragmented, as Ottawa is responsible for looking at the safety and efficacy of the drug, while the provinces look at the drug’s cost-effectiveness and makes the ultimate decision on whether it will be funded.

“The alternative is to take a national approach to providing funding for these drugs,” he said. “That’s more ideal, but more difficult.”

In a statement to CTV News, the pCODR says it welcomes the Fraser Institute assessment.

Read more: http://www.ctvnews.ca/health/provinces-taking-too-long-to-approve-potentially-life-saving-cancer-drugs-study-1.1918021#ixzz387GMeJjt

National Dress in Blue Day


Did you know that colorectal cancer is the second-leading cause of cancer deaths in Canada? This year 23,900 men and women will be diagnosed with the disease and sadly over 9,200 individuals will die from it. However, this cancer is preventable, treatable and beatable in 90% of cases if discovered early.

March is Colorectal Cancer Awareness month, and the Colorectal Cancer Association of Canada (CCAC) will be hosting its second-annual, Dress in Blue Day on Friday, March 7th. We have been asking schools, business, and organizations all across Canada to show their support for colorectal cancer awareness by dressing in blue.

Partaking in Dress in Blue Day is easy. Similar to Denim Day where participants wear denim to benefit the CURE Foundation, on Dress in Blue Day participants wear blue to support The Colorectal Cancer Association of Canada and those affected by colorectal cancer. The CCAC would like to partner with you to spread awareness and fundraise for colorectal cancer. Please encourage your colleagues, friends & family to participate as well.

The CCAC is dedicated to increasing awareness of colorectal cancer, supporting patients, and advocating for accessible services, and would be happy to provide resources for you. These include healthy-eating pamphlets and informational posters which can be displayed in your office or distributed to your staff. There is no cost to participate in this event, but the CCAC strongly encourages everyone to donate to help support colorectal cancer; even a few dollars can truly make a difference. To register for this event, for more information or to make a donation please visit: ccac.donordrive.com

University of Ottawa Imagination Session

A team of volunteer student consultants from the Telfer School of Management’s MBA program is currently working with the CCAC to develop new event ideas and provide the framework in which the event will be successful and sustainable. To that end, an Imagination Session was held on July 24th at the Telfer School of Management on the University of Ottawa’s main campus. A total of 16 students participated in the event. Seven different faculties were represented at the event; Arts, Common Law, Civil Law, Engineering, Management, Medicine, and Science. 61 original ideas were generated at this morning-long session.

The structure of the Imagination Session was developed based on the study of research carried out by academics and practitioners. A number of subtle nuances were critical for the event’s success. While the group should not be too large or too small, there should also be an open flow of ideas. However, too open of a setting can prove intimidating for some participants, so there should be clear guidelines but they should not be restrictively specific. In this context, the structure of the event was developed.

The event started with an introductory presentation, necessary for providing the background and context in which the session fits. The background information included a presentation of CCAC as well as an overview of colorectal cancer. Idea information was then provided, including other events currently run by CCAC as well as the full range of creative to traditional events currently held in Canada. Finally, the session agenda was presented, with a strict timeline and objectives, and session rules were provided.

Small groups of four participants developed original ideas, while a designated scribe recorded the ideas on poster board. After 15 minutes of brainstorming, the scribes switched groups and presented the ideas generated by the previous group. These existing ideas were then built on by the new group and used as inspiration for new ideas. This process continued until the scribes had rotated amongst all groups. This structure allowed ideas to flow freely through the use of smaller groups, but also allowed all participants’ ideas to influence and inspire other ideas by having scribes that switched groups.

The ideas, frameworks for success, performance management techniques, as well as high-level implementation plans will be presented to the CCAC in the consultants’ final report, to be delivered and presented by mid-August.

Written by Guest Blogger:
Vincenzo Sposato
JD/MBA Candidate 2014 (uOttawa)

“CANCER AND CULTURE: A DIFFERENT APPROACH” Symposium

On May 15, 2013 The Colorectal Cancer Association of Canada participated in the symposium titled “CANCER AND CULTURE: A DIFFERENT APPROACH” sponsored by la Coalition Priorité Cancer au Québec and l’Alliance des communautés culturelles pour l’égalité dans la santé et les services sociaux (ACCÉSSS). The symposium discussed the various differences of ethnocultural clients, patient-caregiver relationships in the intercultural context, focusing in particular on ways to improve the understanding and participation of patients and their families in public health programs for prevention and screening, and cancer treatment.

For more photos, please visit our Facebook page.

Annual Ostomy Education Day Success

The annual Ostomy Education Day organized by The Ostomy Care and Supply Center’s Andrea (Andy) Manson,RN ET and staff was held at the Metrotown Hilton Hotel in Burnaby on October 27, 2012. Each year the Center gives back to customers, patients, and families with a day of information, networking, and support.

The topics included:

• Updates in treatments for colorectal cancer presented by the Director of Education & Clinical Information from the Colorectal Cancer Assoc. of Canada.
• New treatments and research into Inflammatory Bowel Disease was outlined by Alison Obrecht from Crohn’s and Colitis Foundation of Canada.
• And, after a wonderful buffet lunch, Allison Mindlin, Genetic Counselor, explained the intricacies of Genetic Counseling.

This was also an opportunity to see products and talk to the manufacturers of ostomy products and accessories:

• Coloplast,
• Hollister,
• Convatec,
• Salts and
• NaScent.

Other exhibitors included: I.D.E.A.S, United Ostomy Association of Vancouver, Bladder Cancer Canada, Colorectal Association of Canada, and BCCA Hereditary Cancer Program. The response from the 300 attendees was very positive and they look forward to next year’s event!

BC Launches Provincewide Colorectal Cancer Screening Program

Last week, Health Minister Margaret MacDiarmid announced that British Columbia is launching a co-ordinated provincewide colorectal cancer screening program to assist in early detection of the disease and help save lives. “In its earliest stages colorectal cancer can have absolutely no symptoms, but catching it early greatly increases the survival rate,” said MacDiarmid. “This is why regular screening and detection are so important. This new program recognizes that family physicians are key influencers for patients in deciding to participate in cancer screening programs and physicians are also well equipped to speak to their patients about risk factors and prevention.”

The provincewide colorectal program will launch on April 1, 2013, with the introduction of the publicly-funded fecal immunochemical test (FIT), which is easier for patients to complete at home and requires no medicinal or diet changes. The complete provincial colorectal screening program will be phased in, with all health authorities on board during the spring and summer of 2013.

The new program will build on the experiences of the pilot Colon Check colorectal cancer screening program, which has been running in a number of B.C. communities since 2009.

It will be primary-care-based, with general practitioners referring patients between the ages of 50 and 74 without symptoms for a screening test once every two years. Patients with a significant family history of colorectal cancer will be referred to their regional health authority for a screening colonoscopy.

Patient co-ordinators will provide patients who are referred for a colonoscopy with support to help make the experience easier and ensure colonoscopy resources are used most effectively. Recognizing that early detection saves lives, the program will focus on increasing patient participation in colorectal screening and will have a centralized system for data collection and monitoring in order to assess patient uptake and outcomes.

The program will send reminders to patients and physicians to let them know when rescreening is needed.

“There is no doubt that timely screening and detection of colorectal cancer can save lives. This is a disease that is preventable, treatable and beatable. Coupled with healthy lifestyles, screening will not only help prevent the disease, but will catch more people with early stage disease and provide them with a better opportunity for a cure,” said Barry D. Stein, president of the Colorectal Cancer Association of Canada, who is also a survivor of late-stage colon cancer.

“A provincewide screening program is something we have advocated for and we are pleased that B.C. has made the commitment to move forward with this program,” said Stein.

In the coming months, the Provincial Health Services Authority and the BC Cancer Agency will develop a governance structure and implementation plan for the new screening program. They will also work together to enhance public awareness, develop a centralized participant registry and patient recall system, create quality assurance standards for the program and implement a system for data collection and outcome monitoring.

The Ministry of Health, through the Medical Services Plan, will support general practitioner and specialist (colonoscopist) fees, and the laboratory fee for the FIT. The BC Cancer Agency will provide overall leadership and provincial oversight of the new model.

“I just thought that I was having a recurrence of a hemorrhoids issue. I was only 43 years old, seven years younger than the primary risk group, so I decided to speak to my doctor about this,” said colorectal cancer survivor, Deb Imada. “Having this discussion with my doctor has likely saved my life, which is why a provincewide screening program to support early detection is of key importance for helping to save others from this silent killer type of cancer.

“People don’t think about these cancers developing, and a lot of times there are no symptoms,” added Imada. “But one simple test can literally save your life. It’s a win, win situation and I am excited that our province has recognized the great importance and need for screening. Thanks to my early diagnosis and treatments that followed, I am now able to look forward to a future with my young son.”

“I was diagnosed with colorectal cancer in 2006, which was within the first year of my retirement,” said colorectal cancer survivor, Doug Shirlaw. “I have now been out of treatment for almost six years and am doing well, but I am one of the fortunate few. I saw a number of members of my colon cancer support group die because their diagnosis came too late.”

“An early screening program will save lives and certainly turn this serious disease into one that is both treatable and beatable. I am extremely pleased and supportive of this early screening program,” added Shirlaw.

For more information on colorectal cancer and screening, please visit: http://www.bccancer.bc.ca/PPI/TypesofCancer/Colorectal/default.htm

HAI In the Management of Unresectable Liver Metastases Meeting

On September 7, 2012, the Colorectal Cancer Association of Canada (CCAC) hosted a highly successful Advisory Council Meeting focused on Hepatic Arterial Infusion (HAI) in the Management of Unresectable Colorectal Liver Metastases at the Marriott Eaton Centre Hotel in Toronto.

In attendance were hepatobiliary surgical and medical oncologists from across Canada and the U.S. These experts, including Dr. Nancy Kemeny, came together to identify barriers, document and advance solutions with the aim of introducing and promoting the use of HAI in Canada to improve the experience and outcomes of the colorectal cancer patient with confined, unresectable metastatic disease to the liver.

The expert panel reached consensus on all proposed statements focusing on the various aspects of HAI in the management of colorectal liver metastases and a meeting manuscript is forthcoming. The manuscript will ultimately be submitted for publication in a prominent Journal and utilized for the promotion of HAI in appropriate circumstances in Canada.

Stay tuned as the CCAC continues to advocate for education and awareness of HAI as a therapeutic option in the treatment of unresectable colorectal liver metastases as well as assist in the introduction of HAI in Canada.

CCAC Partners With Mt. Sinai

The CCAC is collaborating with Mt. Sinai’s bioethicist Dr. Kerry Bowman who is working on a research project involving the development of synthetic antibodies aimed at treating colorectal cancer and other cancer sites. We continue to deliver presentations on disease trajectory, ethical issues facing colorectal cancer patients and families resulting from drug costs and disease burden. The CCAC will continue to provide assistance and support in the project’s next phase by helping to recruit individuals who have had colorectal cancer to explore their lived experience in relation to contemporary drug costs. Stay tuned as the CCAC continues to partner with Mt. Sinai on this pivotal project.