CCSN Attends Ontario Health Coalition Conference

Tiffany Glover, CCSN Policy & Public Affairs Manager, attended the Ontario Health Coalition (OHC) Assembly and Conference in Toronto on November 17-18, 2012.

The discussion topic for the first day of the conference was protecting health care in the face of austerity, and included briefings on charting the electoral landscape, key issues and strategies of the political parties, opportunities and challenges under a minority government, charting OHC’s progress on the Key Issues as well as caucus meetings, and the approval of the OHC’s Action Plan for the coming year. Discussion ensued on several topics, including the increasing transfer of money from public to private interests in the province.

The OHC noted that one successful campaign had resulted in a halt in competitive bidding by CCHC’s across the province, which is important to preventing a race to the bottom with contract bids for services. In terms of the political landscape, the current Ontario Liberal leadership race and a possible upcoming election were seen as two key opportunities to raise issues related to health care reform and ensuring that health care in Ontario remains public.   

CCSN participated in the lunchtime caucus on home care, with Glover stating that patients going through treatment need more holistic support, such as expansion of the eligibility for the Compassionate Care benefit, so that caregivers can receive financial support.

On the second day there were three keynote speakers who addressed the theme From Tax Loopholes to the 1 %: Funding Health Care in the Public Interest. The first, Dr. Michael Rachlis of Doctors for Fair Taxation, gave the keynote speech in which he discussed the recent Canadian Institute for Health Information report and some of the numbers regarding spending on public health related to GDP.  He also presented the idea that doctors can change how they deliver services, and in doing so create a better system that will bring down health costs. 

Hugh Mackenzie spoke on Closing the Loopholes: The Employer Health Tax, followed by a session on a session on Funding Implications of P3s, long-term care reform, home care reform, hospital funding changes, other key reforms.

Finally, Professor Neil Brooks from Osgoode Hall Law School discussed his book The Trouble with Billionaires.  The main idea throughout the speech was that the tax system is an appropriate and necessarily policy instrument for achieving a more just society by taxing the top 1% and reducing income inequality.  

Thermography not authorized to screen for breast cancer

Thermography has been in the news lately it is increasingly being used for breast cancer screening although it has been called into question by a recent CBC News investigation, which showed that some clinics offering thermography, which uses a heat-sensitive infrared camera, can detect indications of breast cancer much earlier than mammography.

Health Canada is advising Canadians and health care practitioners that no thermography (thermal imaging) machines have been approved to screen for breast cancer in Canada.

Health Canada is not aware of any clinical evidence that thermography can be used effectively as a screening technique for the early detection of breast cancer. As such, it may present a potential risk to women relying on the results.

Health Canada would also like to remind consumers that thermography machines are not a replacement for routine monitoring and screening for breast cancer. Patients who have relied on these types of machines for breast cancer screening should contact their physician for appropriate follow-up and testing.

The Department is following-up with the manufacturers of these devices to help ensure they are aware that it is illegal to advertise or sell these types of machines to screen for breast cancer in Canada. This could result in a stop sale of any unlicensed product. Health Canada is also working with the Canada Border Services Agency to stop any unlicensed devices from entering Canada.

Health Canada will be communicating with the provincial and territorial ministries of health to advise them that clinics falling under their responsibility should not be promoting or using these devices to screen for breast cancer.


There is more information on breast cancer, available through the Public Health Agency of Canada at http://www.phac-aspc.gc.ca/cd-mc/cancer/breast_cancer-cancer_du_sein-eng.php. To confirm whether a device is licensed in Canada, please refer to the Medical Devices Active Licence Listing at www.mdall.ca.

Complaints involving thermography machines used in the screening of breast cancer can be reported to the Health Products and Food Branch Inspectorate by calling the toll-free hotline at 1-800-267-9675, or by writing to:

Health Products and Food Branch Inspectorate
Health Canada
Address Locator: 2003D
Ottawa, Ontario K1A 0K9

Consumers requiring more information about this advisory can contact Health Canada’s public enquiries line at (613) 957-2991, or toll free at 1-866-225-0709.

Pour les hommes souffrant du cancer de la prostate, le sexe a toujours de l’importance

Les Canadiens sous-estiment les difficultés associées aux repercussions du cancer de la prostate sur la vie sexuelle

TORONTO, le 29 nov. 2012 : Selon deux sondages récents de la firme Léger Marketing sur les perceptions qu’ont les Canadiens des situations les plus difficiles à vivre pour un homme lorsqu’il est confronté à un diagnostic du cancer de la prostate, il existe un écart considérable dans l’appréciation de la qualité de vie découlant de la maladie.

Par exemple, selon le sondage, les Canadiens en général (32 %) et les hommes ayant été atteints ou souffrant actuellement d’un cancer de la prostate (37 %) s’entendaient pour dire que l’inquiétude et le désespoir sont les deux éléments les plus difficiles à affronter, mais les deux groupes avaient une perception très différente de l’importance des répercussions du cancer de la prostate sur la vie sexuelle d’un homme.

Le sondage suggère aussi que les hommes souffrant ou ayant souffert du cancer de la prostate ont place leur vie sexuelle au deuxième rang des éléments les plus difficiles à affronter au moment où le diagnostic du cancer de la prostate est tombé (23 %), tandis que les autres Canadiens l’ont placé au sixième rang (4 %). Parmi les hommes atteints du cancer de la prostate, ceux des provinces de l’Atlantique (32 %) et de l’Ontario (28 %) sont plus susceptibles de se préoccuper de leur vie sexuelle à la suite du diagnostic que ceux vivant au Québec (15 %).

« Le cancer de la prostate peut affecter les hommes sur bien des plans », affirme le Dr Jean-Baptiste Lattouf, M.D., uro-oncologue et laparoscopiste membre du CRMCC, et professeur adjoint au Département de chirurgie du Centre hospitalier de l’Université de Montréal (CHUM). « La maladie a bel et bien des répercussions sur les relations sexuelles de l’homme avec sa ou son partenaire, mais je crois également que l’espoir joue un très grand rôle. Voilà qui nous incite à mieux saisir de quelle façon nous pouvons venir en aide aux hommes, que ce soit en leur offrant des renseignements plus clairs, des traitements nouveaux ou améliorés, ou un meilleur soutien dans leur combat contre le cancer. »

Jackie Manthorne, présidente-directrice générale du Réseau canadien des survivants du cancer (RCSC), abonde dans le même sens. « Ce sondage met en lumière plusieurs points importants », declare adame Manthorne. « Nous savons que l’intimité sexuelle est une préoccupation constante despatients atteints du cancer de la prostate et, à vrai dire, de toute personne atteinte de cancer. Les professionnels de la santé doivent donc prendre le temps d’encourager leurs patients à exprimer leurs inquiétudes. Pour les patients atteints du cancer de la prostate et pour les survivants, les questions liées à la qualité de vie sont bien réelles et elles doivent être mieux comprises et prises en charge. »

Les résultats mettent en lumière les éléments figurant aux cinq premiers rangs des choses les plus difficiles à vivre pour les hommes souffrant du cancer de la prostate : le sentiment de gêne, le fait de savoir que leur maladie a des répercussions sur les personnes qui leur sont chères et la crainte de ne pas pouvoir accéder aux meilleurs traitements.

Parler du cancer de la prostate

Selon le sondage, la majorité des hommes sont à l’aise de discuter avec d’autres personnes du fait qu’ils souffrent ou ont déjà souffert du cancer de la prostate, et ils ne sont pas gênés de l’avouer. De plus, 83 % des sondés s’entendent pour dire que leur entourage est sensible à leur état de santé.

Cependant, le sondage démontre que jusqu’à 30 % des Canadiens ayant eu un diagnostic du cancer de la prostate ont l’impression que leur entourage croit que cette maladie n’est pas grave. De même, 44 % des sondés admettent que leur famille et leurs amis ne comprennent pas à quel point un cancer de la prostate est sérieux.

« Nous devons continuer d’éduquer la population sur la gravité de cette maladie », explique madame Manthorne. « Il est vrai que plusieurs personnes vivent longtemps et pleinement avec un cancer de la prostate, mais d’autres n’ont pas cette chance. Le cancer de la prostate demeure tout de même un cancer. Il ne doit pas être pris à la légère. »

Résultats du sondage par région :

• 87 % des hommes sont à l’aise de discuter avec d’autres personnes du fait qu’ils souffrent ou ont déjà souffert du cancer de la prostate et ne sont pas gênés d’en parler.
• Les hommes mariés sont moins enclins à discuter de façon ouverte avec d’autres personnes du fait qu’ils souffrent ou ont déjà souffert du cancer de la prostate, comparativement aux hommes célibataires, veufs, divorcés ou séparés (85 % vs 93 %).
• Les hommes des provinces de l’Atlantique semblent être les plus à l’aise d’en discuter avec d’autres personnes (98 % vs 86 % dans le reste du Canada).
• Les hommes du Québec sont les plus susceptibles de vivre un sentiment de gêne par rapport à leur diagnostic (40 % vs 15 % dans le reste du Canada).
• 83 % des hommes souffrant ou ayant déjà souffert du cancer de la prostate s’entendent pour dire que leur entourage est sensible à leur état de santé.
• Les hommes de la Colombie-Britannique (92 %) ont davantage tendance à affirmer que leur entourage est sensible à leur état de santé que les hommes du Québec (81 %) et des provinces de l’Atlantique (77 %).

« Nous continuons à faire de grands progrès dans notre compréhension de la maladie, tant du point de vue médical que social », déclare le Dr Lattouf. « Un dialogue soutenu ne pourra que nous aider à progresser vers une meilleure compréhension des besoins des hommes afin qu’ils relèvent avec success les nombreux défis qui les attendent pendant et après leur traitement. »

À propos du sondage

Le sondage, commandé par Astellas Pharma Canada, Inc., a été mené en ligne par la firme Léger Marketing du 3 au 9 octobre 2012, auprès d’un échantillon de 603 Canadiens souffrant ou ayant déjà souffert du cancer de la prostate. Un autre sondage en ligne avait aussi eu lieu du 30 juillet au 1er août 2012, et les résultats ont été utilisés à des fins comparatives.

La marge d’erreur d’un tel échantillon d’hommes qui ont ou ont eu cancer de la prostate est de ±2,5 %, 19 fois sur 20. La marge d’erreur d’un tel échantillon de Canadiens en général est de ±4,0 %, 19 fois sur 20.

À propos du Réseau canadien des survivants du cancer (RCSC)

Le Réseau canadien des survivants du cancer a été créé par un groupe de Canadiennes et de Canadiens préoccupés par le cancer. La mission du RCSC est d’encourager la collaboration entre les patients vivant avec le cancer, leur famille et la communauté. Le Réseau sera ainsi plus apte à détecter et à franchir les barrières qui se dressent devant l’accès à des soins optimaux; il pourra également s’assurer que les survivants du cancer ont accès à de l’information et peuvent agir, de façon à ce que leurs voix soient entendues dans la planification et la mise en œuvre d’un système de santé optimal. Le RCSC s’engage à éduquer le public et les décideurs en matière de cancer en ce qui concerne les répercussions de celui-ci sur les coûts financiers, émotionnels, et sur ceux de la santé, à offrir des solutions et des idées positives, et à faire des recommandations dans le but d’atténuer ces répercussions. Pour en savoir plus, visitez le www.survivornet.ca/fr.

Astellas Pharma Canada, Inc.

Astellas Pharma Canada, Inc., dont le siège social est à Markham, en Ontario, est une filiale canadienne d’Astellas Pharma, Inc., basée à Tokyo. Astellas est une entreprise pharmaceutique déterminée à améliorer la santé des gens partout dans le monde en leur offrant des produits pharmaceutiques fiables et novateurs.

L'organisation s'est engagée à devenir un chef de file mondial dans des domaines ciblés en combinant d’exceptionnelles ressources en recherche et développement et en marketing. Au Canada, Astellas concentre ses activités dans les cinq secteurs thérapeutiques suivants : l’urologie, l’immunologie, les maladies infectieuses, la dermatologie et l’oncologie.

Pour de plus amples informations au sujet d’Astellas Pharma Canada, Inc., veuillez visiter le www.astellas.ca

For Men with Prostate Cancer, Sex Still Matters

Canadians underestimate difficulty of coping with prostate cancer’s impact on sex life

TORONTO Nov 29, 2012: Two recent Leger Marketing surveys probing Canadians’ perceptions of the most difficult things to deal with if faced with a diagnosis of prostate cancer illustrate a significant gap in appreciating quality of life issues associated with the disease.

For instance, according to the surveys, while Canadians in general (32%) and men who have had, or currently have, prostate cancer (37%) both rated worrying or losing hope as the hardest single thing to deal with, the two groups had a significantly different understanding of the importance of the impact of prostate cancer on a man’s sex life.

The surveys also suggest men who have or had prostate cancer rated their sex life as the second most difficult thing to deal with when facing a diagnosis of prostate cancer (23%) whereas Canadian men ranked sex life as sixth overall (4%). Of those affected by prostate cancer, men from Atlantic Canada (32%) and Ontario (28%) are more likely to worry about their sex lives after their prostate cancer diagnosis compared to those in Quebec (15%).

“Prostate cancer can affect men on a number of levels,” says Dr. Jean-Baptiste Lattouf, MD, FRCS (C) uro-oncologist, laparoscopist, assistant professor at the Surgery Department of the Hospital Center of the University of Montreal (CHUM). “The disease can most definitely impact a man’s sexual relationship with his partner, but I also think the issue of hope is an important one. It challenges us to better understand how we can help men, whether it’s through better information, new or improved treatments, or stronger support, during their cancer journey.”

Jackie Manthorne, president and CEO of the Canadian Cancer Survivors Network (CCSN), concurs. “This survey highlights a number of important points,” says Manthorne. “We know that sexual intimacy is an ongoing challenge for many prostate cancer patients, and indeed, cancer patients in general. Healthcare professionals need to ensure they take time to encourage patients to express their concerns. Quality of life issues are very real for prostate cancer patients and survivors and they need to be better understood and managed.”

The results indicate feeling embarrassed, knowing their illness has an impact on loved ones, and being unable to access new and better treatments round out prostate cancer sufferers’ top five ranking of their most difficult issues.

Talking about prostate cancer

According to the survey, most men are comfortable discussing with others the fact they have or have had prostate cancer and are not embarrassed to tell people about it. In addition, 83% of respondents agreed that people around them are sympathetic about their condition.

But for the Canadians who have had to deal with a diagnosis of prostate cancer, the survey reports as many as 30% feel that the people around them do not think that prostate cancer is important.    

Additionally, 44% of respondents agree that their family and friends don’t understand how serious a disease prostate cancer is.

"We need to continue educating people about the seriousness of the disease," says Manthorne. "It is true that many people live long and fulfilling lives with prostate cancer, but others aren't so lucky. Prostate cancer is still cancer. It needs to be taken seriously."

Regional findings from this survey:

• 87% of men are comfortable discussing with others that they have or have had prostate cancer; the same proportion says they are not embarrassed to tell people about it.

• Men who are married are less likely to be comfortable discussing that they have/had prostate cancer with others compared to men who are single, widowed, divorced or separated (85% vs. 93%).

• Regionally, men from Atlantic Canada are the most likely to feel comfortable discussing this with others (98% vs. 86% rest of Canada).

• Men from Quebec are the most likely to feel embarrassed about their diagnosis (40% vs. 15% rest of Canada).

• 83% of men who have or have had prostate cancer agree that people around them are sympathetic about their condition.

• Regionally, men from B.C. (92%) are more likely to agree that people around them are sympathetic towards their condition compared to men from Quebec (81%) and Atlantic Canada (77%).

“We continue to make strides in our understanding of the disease from both a medical and social perspective,” says Dr. Lattouf. “Ongoing dialogue will only help our progress to better understand what men need to successfully address their challenges during and after their treatment.”    

About the Research

The survey, commissioned by Astellas Pharma Canada, Inc., was completed online by Leger Marketing from October 3, 2012 to October 9, 2012 with a sample of 603 Canadian men who currently have or have had prostate cancer. A previous survey completed online from July 30, 2012 to August 1, 2012, with a sample of 1500 Canadians, was used for comparison.

A probability sample for men who have/had prostate cancer of the same size would yield a margin of error of ±2.5 %, 19 times out of 20. A probability sample for Canadians in general of the same size would yield a margin of error of ± 4.0%, 19 times out of 20.

About the Canadian Cancer Survivor Network (CCSN)

The Canadian Cancer Survivor Network was created by a group of Canadians concerned about cancer.  CCSN's mission is to empower collaborative action by cancer patients, families and communities to identify and work to remove barriers to optimal patient care, and to ensure that cancer survivors have access to education and action opportunities to have their voices heard in planning and implementing an optimal health care system. CCSN is committed to educate the public and policy makers about the financial, emotional and health costs of cancer and offer considered, positive ideas and recommendations to alleviate their effects. To learn more, visit www.survivornet.ca.

Astellas Pharma Canada, Inc. 

Astellas Pharma Canada, Inc., headquartered in Markham, ON, is a Canadian affiliate of Tokyo-based Astellas Pharma Inc.

Astellas is a pharmaceutical company dedicated to improving the health of people around the world through the provision of innovative and reliable pharmaceutical products. The organization is committed to becoming a global category leader in focused areas by combining outstanding R&D and marketing capabilities.

In Canada, Astellas has an intense commercial focus on five therapeutic areas – Urology, Immunology, Infectious Disease, Dermatology and Oncology. For more information about Astellas Pharma Canada, Inc., please visit the corporate website: www.astellas.ca

New study shows elevated risk of breast cancer in auto plastics, tooling, foundries and metal-related industries

Examining workplace Risk for Breast Cancer: Canadian Breast Cancer Foundation Funded Researchers Share New Findings

WINDSOR, ON (November 19, 2012) – A multi-year research project funded by the Canadian Breast Cancer Foundation (CBCF) finds an average increase in breast cancer risk of 42 per cent for women who work for a ten year period in environments with high exposure to carcinogens and hormone disrupting chemicals. 

 

CBCF-funded lead researchers Dr. James Brophy and Dr. Margaret Keith along with an international team of co-investigators gathered occupational histories from more than 2000 women in Essex and Kent counties in Southern Ontario, including both those diagnosed with breast cancer and women unaffected by the disease. 

 

“Over the last 25 years mortality rates for breast cancer have declined by nearly 40 per cent but incidence rates have remained the same, with one in nine Canadian women getting breast cancer in her lifetime,” said Sandra Palmaro, CEO, Canadian Breast Cancer Foundation – Ontario Region. “This research provides new evidence about workplace risks associated with breast cancer that we hope will lead to a better understanding of how to prevent the disease.”

 

The findings also indicated further elevated risk in certain workplaces or industries.  For example, women working in: 

• Automotive plastics and food canning industries are approximately 500 per cent (five times) more at risk to develop breast cancer before reaching menopause
• Tooling, foundries and metal-related manufacturing are 73 percent (1.73 times) more at risk of developing  breast cancer 
• Bars and gambling facilities are 228 percent (2.28 times) more at risk of developing breast cancer 
• Farming are 36 per cent (1.36 times) more at risk of developing breast cancer 

“This study contributes to the growing evidence regarding the importance of preventing exposures to agents that increase breast cancer risk.  It also points to the value of considering women’s occupational histories when we are searching for modifiable risk factors,” said Dr. James Brophy, co-principal investigator on the project.

 

“For too long researchers have ignored women’s workplace conditions in their quest to understand why some women develop breast cancer and others do not.  These findings reveal that we need to revamp our occupational health regulatory system to take into account women’s breast cancer risk. Such preventive measures could have a significant impact on the breast cancer incidence in Canada,”said Dr. Margaret 

Keith, co-principal investigator on the project.

 

This landmark research provides new evidence to help inform discussions with governments, industry, health care providers and stakeholders about the serious effects occupational risk factors can have on the development of breast cancer, which impacts women everyday in Ontario, across Canada and around the world.

 

“This research reminds us that we need to continue to demand a precautionary approach to dealing with toxic substances,” stated Dayna Nadine Scott, Director of the National Network on Environments and Women’s Health. “There is a growing understanding that when it comes to endocrine disrupting chemicals, even low doses can be dangerous.”

 

About the Canadian Breast Cancer Foundation

 

CBCF is the largest non-governmental funder of breast cancer research in Canada and one of the largest in the world. Its investments in research and fellowships are changing the landscape of what is known and understood about breast cancer and have supported more than $274 million in research projects and fellowships since 1986.  This study was funded by Canadian Breast Cancer Foundation - Ontario Region.

CCSN calls for timely access to targeted bone therapies for patients with advanced prostate cancer in BC

November 12, 2012 - The Canadian Cancer Survivor Network is deeply concerned that men, in British Columbia, with advanced prostate cancer that has spread to their bones are not receiving the same evidence-based care as patients in other provinces.  Patients in British Columbia are being denied access to bone targeted treatment at the appropriate time in therapy.

Men whose cancer has spread, or metastasised, to their bones are at risk of developing serious, debilitating complications such as fractures, spinal cord compression or the need for surgery or radiation. These complications can cause mobility issues, disability, hospitalization and even death.

To reduce the risk of developing bone complications, patients with advanced prostate cancer need to receive a bone-modifying agent at the earliest confirmation of metastases. However, such patients in BC with must wait until they are considered palliative, or have six months to live, before BC Pharmacare will pay for treatment to prevent complications. Even at this stage, physicians are limited in their choice of treatment as the government will only pay for older agents and not the newer approved treatment option.

The Canadian Cancer Survivor Network believes that patients with advanced prostate cancer in British Columbia deserve the same access to treatment and standard of care as patients in other provinces. BC Pharmacare must allow physicians the freedom to choose the most appropriate treatment at the earliest sign of metastases, when the agent can be most helpful, to prevent debilitating complications in men with advanced prostate cancer.

If you would like to assist us in our efforts to help men with advanced prostate cancer receive the same evidence-based care as patients in other provinces, please contact me atJmanthorne@survivornet.ca.

Together we can make a difference.

Managing chemo's side-effects

Check out the article in yesterday's Vancouver Sun entitled "Managing chemo's side-effects," which includes a quote from me.

The article is about febrile neutropenia (FN), which is one of the most common side-effects of chemo. FN is the combination of a low white blood cell count 

and fever of 38.3 degrees or higher. 

Left untreated, it can be life-threatening. 

Go tohttp://www.vancouversun.com/health/Managing+chemo+side+effects/7425676/story.html for the entire article.

Mayor officially opens office for Canadian Cancer Survivor Network

Ottawa – Mayor Jim Watson cut the ceremonial ribbon to officially open the office of the Canadian Cancer Survivor Network Wednesday October 3, 2012, surrounded by cancer survivors, families, community organization representatives and funders.

The Mayor presented a framed declaration to commemorate the occasion to Jackie Manthorne, President and CEO. He spoke of the dedication of Board, staff, and volunteers and acknowledged the valuable role of the Canadian Cancer Survivor Network in serving as a voice for cancer patients, survivors, their families, and other community stakeholders.

President and CEO Jackie Manthorne thanked the Mayor and talked about the collaboration and support of the founding Board of Directors: Garth Bulmer, Vanessa Compton, Mike Fletcher, Mona Forrest, Ross Hammond, and Albert Klein.

Reverend Doctor Dana Fisher blessed the new office and read an Irish poem related to all things to be thankful for.

Takihiro Hirasawa, President of Eisai Limited, spoke about commonalities between Eisai starting their Canadian office about a year ago when the Canadian Cancer Survivor Network was in development, and he noted the CCSN web site opened on the same date as his birthday. He wished the organization much success.

Other supporters present included Trina Fraser of Brazeau Seller, Tony Di Iorio of Bradda Printing Services, Elise Giasson  of Merck, and Mike Murphy of Canada’s Research-Based Pharmaceutical Companies (Rx&D).

Over seventy attendees celebrated at the Open House.

About the Canadian Cancer Survivor Network

The Canadian Cancer Survivor Network (CCSN) is a national network of patients, families, survivors, friends, community partners and sponsors. Its mission is to work together by taking action to promote the very best standard of care, support, follow up and quality of life for cancer patients and survivors. It aims to educate the public and policy makers about cancer survivorship and encourage research on ways to alleviate barriers to optimal cancer care in Canada.

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Contact: Canadian Cancer Survivor Network – Media Relations, Mona Forrest, 613-898-1871

​Canadian Cancer Survivor Network announces website launch just in time for breast cancer awareness month

Website features video testimonials and information about chemo-induced nausea and vomiting

OTTAWA, Ontario – October 3, 2012 – Just in time for Breast Cancer Awareness Month, the Canadian Cancer Survivor Network (CCSN) is pleased to announce the launch of their website (www.survivornet.ca) and their new Ottawa office at an open house that will be attended by Ottawa Mayor Jim Watson. Among other subjects, the website tackles an important issue that they believe is not being appropriately addressed across Canada: chemotherapy-induced nausea and vomiting (CINV).

Part of CCSN's vision is to ensure cancer patients and survivors have access to current knowledge about treatment, options and outcomes. Concerned that there is a lack of information about managing CINV, CCSN is working hard to close this knowledge gap in order to help end disparities in patient care and treatment.

"Nausea and vomiting is the most feared side effect of chemotherapy. When uncontrolled, it can have a severe impact on patients, including loss of appetite and weight loss, even broken bones and re-opening of surgical wounds in extreme cases,” says Dr. Kylea Potvin, Medical Oncologist at the London Regional Cancer Program. “As a result, some people even decide to stop treatment that can prolong their survival."

Approximately 70 to 80 per cent of cancer patients experience CINV[1]

Although chemotherapy regimens have been very useful to treat cancer it can come with debilitating side effects such as nausea and vomiting. This is an unfortunate but common side effect of chemotherapy regimens.

“CINV can be debilitating but can also be prevented. Patients should speak to their doctor about treatment options before they start chemotherapy,” says Jackie Manthorne, President and CEO of CCSN. “Cancer is already a difficult journey and patients should be able to focus on healing while spending quality time with their loved ones. By preventing CINV, there is one less thing to worry about”.

There is hope for Canadian patients to live a better life with cancer

CCSN believes that with access to the right treatment options, there is hope for Canadian patients to live a better life with cancer. “We reached out to those in our network who has undergone, or who are undergoing, chemotherapy and who have experienced nausea and vomiting to share their stories with us. We chose three people who volunteered to participate in video testimonials to explain how access to treatment helped them regain control of their life, and we have posted them on our website,” adds Manthorne.

“Fifteen years ago, I was diagnosed with breast cancer and suffered from severe nausea and vomiting during my treatment. I felt like I had completely lost control over my body,” explains Catherine Mooney, a cancer survivor. “Last year, I was diagnosed again with breast cancer. This time, my doctor provided me with an option to help control the nausea and vomiting. This enabled me to spend more time with my friends and family and it really helped me to be more positive about my treatment because I didn’t feel so sick all the time.”

CCSN’s new video testimonials are from:

• Catherine Mooney, from Charlottetown, PEI, battled breast cancer twice. To see her story: http://youtu.be/V5GDkcII-6U
• Marlo Taylor, an ovarian cancer survivor from Toronto, Ontario. To see her story: http://youtu.be/vfLh73OjDek
• Isabelle Barrette, a young mother from Montreal, Quebec, who is currently undergoing breast cancer treatment (in French). To see her story: http://youtu.be/2hYeYwiOCPg

To learn more about CINV treatment options, speak to your doctor, or visit be www.survivornet.ca/en/cancer_issues/chemo_induced_nausea_and_vomiting for more information.

About the Canadian Cancer Survivor Network (CCSN)

The Canadian Cancer Survivor Network was created by a group of Canadians concerned about cancer. CCSN's mission is to empower collaborative action by cancer patients, families and communities to identify and work to remove barriers to optimal patient care, and to ensure that cancer survivors have access to education and action opportunities to have their voices heard in planning and implementing an optimal health care system. CCSN is committed to educate the public and policy makers about the financial, emotional and health costs of cancer and offer considered, positive ideas and recommendations to alleviate their effects. To learn more, visit www.survivornet.ca.

The CCSN acknowledges Merck Canada for its support of the launch of the CCSN website and its campaign to raise awareness about CINV.

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INFORMATION:

Toronto Kristen King 416-848-1427 kking@national.ca

Montreal Dominique Quirion / Roch Landriault 514-843-2302 / 514-843-2365 dquirion@national.ca / rlandriault@national.ca

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[1] NCCN Clinical Practice Guidelines in Oncology; Antiemesis, Version 2.2010.

Giving a Voice to Men with Metastatic Prostate Cancer: Awareness Reception at Queen’s Park on September 27, 2012

TORONTO, September 20, 2012 – In recent years, prostate cancer awareness and research has made significant headway with global educational campaigns focused on prevention and survivorship; however, less attention has been given to prostate cancer in the advanced stages – for men whose cancer has spread, or metastasized – and who are running out of time.

September is Prostate Cancer Awareness Month and on Thursday, September 27, the Canadian Cancer Survivor Network (CCSN) will host its first breakfast reception at Queen’s Park to help raise awareness about metastatic prostate cancer and offer support to this patient population that is often overlooked.

Prostate cancer is the most common cancer to afflict men in Canada and approximately 26,500 men are diagnosed with prostate cancer annually.i Once the tumour spreads beyond the prostate, there are very few treatment options available for these men. As recent advances offer these patients and their caregivers the value of time, promise and hope, the province must continue to take action to improve the support available for this patient population.

Please join us at this breakfast reception, featuring:

• Jackie Manthorne, President and CEO of the Canadian Cancer Survivor Network, who will provide an overview of prostate cancer in Canada and the unique challenges faced by the metastatic prostate cancer population.
• Dr. Sandeep Sehdev, a medical oncologist who will share his experience in treating metastatic prostate cancer and the changing treatment landscape.
• Ron Grant, a Cornwall resident living with metastatic prostate cancer who will share his action to promote the very best standard of care, support, follow up and quality of life for patients and survivors. It aims to educate the public and policy makers about cancer and encourage research on ways to alleviate barriers to optimal cancer care in Canada.

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For more information, or to arrange an interview with Jackie, Dr. Sehdev, or Ron, please contact:

Marsha Rosenberg

416-849-3192 (O)

647-834-8889 (C)

Marsha.Rosenberg@edelman.com

References

i

Canadian Cancer Society. Available at: http://www.cancer.ca/Canadawide/About%20cancer/Cancer%20statistics/Stats%20at%20a%20glance/Prostate%20cancer.aspx?sc_lang=en.

Last accessed August 24, 2012.

World Cancer Congress Report 1, August 27, 2012

Three Canadian Cancer Survivor Network Board members are attending the UICC World Cancer Congress in Montreal, August 27-30: CCSN President and CEO Jackie Manthorne, CCSN Board Secretary Mona Forrest, and CCSN Director Albert Klein.

Manthorne will be presenting on Wednesday afternoon; the title of her presentation is Involvement of patients and survivors in advocacy and public policy development at the Canadian Cancer Survivor Network.

The theme for the Congress is Connecting for Global Impact - and highlights the need for continued support and momentum in translating the benefits of knowledge gained through research and practice to those living with and affected by cancer.

This morning we explored the Colorectal Cancer Association of Canada's giant colon! the picture below shows Mona Forrest at the entrance to the colon.

There are four tracks participants can follow:

Track 1: Prevention and early detection (including tobacco control): The standard definition of primary and secondary prevention sets the scope for this track, methods targetting behavioural risk factors as well as underlying factors such as social and economic disadvantage will be explored in these sessions. Tobacco control is a vital and specialized aspect of cancer control, and is an established field with knowledge and experience that can be transferred to other risk factors. Including tobacco control in a broader sense will facilitate an important exchange between participants with the goal of improving prevention outcomes for all risk factors.

Track 2: Cancer care and survivorship: This track includes proven medical treatment of the disease in the context of a desire to provide active treatment and comprehensive care for those affected by cancer, including measures to improve side-effects of treatment, psychosocial assessment and support and rehabilitation. This track will explore in depth what "survivorship" means to people affected by cancer, what they want and need, how the health system can meet those needs, and what survivors themselves can contribute.

Track 3: Palliation and pain control: As over one third of patients die within five years of a diagnosis (even in the most advanced health systems), dying, and humane methods to ease the psychological and physical burden of impending death will be explored, as will the challenges (and benefits) of an early introduction of palliative care into the patient's journey. In terms of equity, giving palliation and pain control importance helps address the inequity arising in resource-constrained countries where end of life interventions are often all that can be offered.

Track 4: Systems in cancer control: Emphasizing systems solutions builds upon the theme of the 2010 Congress - "Systems to make it happen" - and is a priority for those who wish to make an impact at the community level to improve the access to care. A broad definition of the term "system" will be used to allow for the discussion of issues, and solutions for improving national, regional and local health systems. Surveillance systems, including cancer registries, and population risk factor monitoring will be a key focus, as will how to advocate for the cancer cause, creating an infrastructure around fundraising and the distribution of resources.

More info: http://www.worldcancercongress.org

Check for tomorrow's report HERE!

Support for Cancer Patient and Survivor Voices

The Canadian Cancer Survivor Network (CCSN) was launched on January 31, 2012 with our first Board Meeting after almost one year of consultation with stakeholders; an environmental scan; input from patients and survivors across Canada; building an organizational framework, including mission and vision; drafting and submitting papers of incorporation as a non-profit group; development of a website; and a process of consultation with funders.

A group of cancer survivors, their families and friends, and concerned individuals from the wider community are worried about diminishing cancer advocacy activities undertaken by Canadian groups, leading to fewer opportunities for a voice and involvement in cancer care decision-making for patients and survivors.

We would all like to reach the day when cancer patients and survivors are included in any and all decision-making committees, commissions, task forces, research institutes, government agencies and any other bodies discussing and implementing policy about cancer care. The Canadian Cancer Survivor Network will work collaboratively with other groups to ensure that this happens. We will also work on public policy issues that impact optimal cancer care.

Dr. Ellen Warner, medical oncologist at Sunnybrook Health Sciences Centre, professor of Medicine at the University of Toronto and founder of the PYNK Breast Cancer Program for young women, told us:“I don’t know whether there is LESS advocacy than before, but the need is infinitely greater as the cost of new cancer drugs has risen exponentially and resources are being cut (for example there is no longer primary nursing at Sunnybrook or PMH [Princess Margaret Hospital], and this is having a huge negative impact on patient care). Ultimately what good is investing hundreds of millions of dollars in research in Canada if the drugs being studied are ultimately unavailable to most Canadians or if essential infrastructure is being eroded for all patients?”

The Canadian Cancer Survivor Network is:

• Soliciting partnerships with disease-specific cancer organizations, health care organizations, support group members, research institutions, and corporate and foundation partners interested in optimal patient care and patient centered care. We currently have over 25 partners and if your group would like to join us, email jmanthorne@survivornet.ca ,
• Establishing a regular series of educational opportunities through webinars, action groups, conferences, in-person training sessions in different parts of the country and eletters and other publications.
• Supporting and engaging in awareness and action involving policy and decision makers and other stakeholders, issuing action alerts, undertaking social media campaigns on our website, Facebook page, Twitter, and development of special apps for iphones.
• Conducting research and encouraging others to conduct research on ways to alleviate barriers to optimal patient care and follow-up and development of tools for enhanced medical as well as emotional, social, financial and spiritual aspects of life after cancer.

Board members include men and women with skills in grass roots organizing, community development, spiritual tools for cancer patients, the science of breast cancer, public policy, financial, business and project management, governance, marketing, fundraising, and social functions and special events. 

HPV vaccine’s benefits extend beyond those already vaccinated

A new study has demonstrated that the effectiveness of the Human Papillomavirus (HPV) vaccine in young women has a much greater impact on the broader community than once thought. Researchers following several cohorts of young women over the last six years have not only noticed substantial reductions of the virus’ most lethal types within the vaccinated segment of their sample population, but have also witnessed a large decline in the level of infection among unvaccinated women as well. These findings are significant, given that HPV is one of the most common sexually transmitted infections in the world, and the highest risk factor for cervical cancer (CVC) among women.

The study was conducted by researchers at the Cincinnati Children’s Hospital, where two groups of sexually active young women, aged 13-26, were followed across two time periods. The first group was observed in 2006 largely before the vaccine became widely available. The second group was observed in 2009-10, with around 60% of those being vaccinated against HPV. All of them were tested periodically for 37 different strains of HPV.

There are over 100 types of HPV, most of which are either benign or cause genital and anal warts. About 90% of HPV infections resolve themselves within several months to a year regardless of age.[1]The more persistent and aggressive strains, such as Types 16 & 18, are strongly linked to CVC. These two strains are not as easily detected through conventional screening methods, where treatment could still be effective and minimally invasive.[2] There are two vaccines approved in Canada, both of which prevent these two strains; one of which also protects against two other strains directly responsible for genital warts.

The researchers’ observations over those four years showed that the prevalence of these four HPV strains dropped by 60%.[3] Among vaccinated women, there was a 70% drop in the rate of infection.[4] More remarkably, the unvaccinated group showed a 50% drop in infection rates, indicating that health officials’ hopes for ‘herd immunity’ were being realized.[5] The findings are quite surprising, given that these young women were sexually active prior to being vaccinated, and some had only received one shot out of the entire set, yet the study provided health officials with real-world insight into the impact of the vaccine, which can’t always be reproduced in the lab.

There are some questions about how easily these results can be generalized at the national level. Participants in this study were from one community in Cincinnati, all of whom were African American and from low-income families, yet were covered by U.S. Medicaid. In addition, HPV infection rates were still increasing overall[6], indicating that while the vaccine is effective, it has yet to incorporate additional, albeit less riskier HPV strains that cause the remaining 30% of CVC.

Nevertheless, this research demonstrates that the HPV vaccine is making headway into lower socio-economic communities, which are at much higher risk of developing the CVC, and it speaks to the importance of both administering the vaccine to women at a young age, while removing barriers to greater protection against the third most common form of cancer in women.

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[1] Debbie Saslow, et al., “American Cancer Society, American Society for Colposcopy and Cervical Pathology, and American Society for Clinical Pathology screening guidelines for the prevention and early detection of cervical cancer,” CA: A Cancer Journal for Clinicians  62, no. 3 (2012): 166, accessed June 14, 2012,http://journals2.scholarsportal.info.proxy.library.carleton.ca/tmp/8837026343413225143.pdf

[2] 5. Muhieddine Seoud, Wiebren A.A. Tjalma and Veerle Ronsse, “Cervical Adenocarcinoma: Moving Towards Better Prevention,” Vaccine 29, no. 49 (2011): 9153, accessed June 15, 2012,http://journals2.scholarsportal.info.proxy.library.carleton.ca/tmp/18192141686225267042.pdf

[3] Jennifer Goodwin, “HPV Vaccine Reducing Infections, Even Among Unvaccinated,” Winnipeg Free Press (Winnipeg, MB), July 9, 2012. http://www.winnipegfreepress.com/arts-and-life/life/health/hpv-vaccine-reducing-infections-even-among-unvaccinated-study-161776435.html

[4] Ibid.

[5] Ibid.

[6] Goodwin, 1.

Survey Highlights Ontarians' Perceptions on Access to Medications in Canada

Only one-fifth believe that if they were diagnosed with cancer today, all their medications would be covered by their province's healthcare system or medical insurance¹

TORONTO, June 14, 2012 /CNW/ - Ontarians know what they want from their healthcare system when it comes to medication.  According to the results of a recent survey, the vast majority of Ontarians (76 per cent) strongly feel that if they were diagnosed with cancer, they should have access to the most appropriate medications, regardless of what their medical benefits cover.²

The reality is that access to new and effective medications is not always offered to patients who need it in every province, despite therapeutic benefits. Jim Walsh, a resident of Brantford, Ontario, living with metastatic prostate cancer, illustrates the current reality faced by men living with this condition in Ontario. After decades of fundraising for treatments for children's cancers, Jim finds that he is now advocating for his own cancer treatment.

"I was diagnosed with prostate cancer about 10 years ago, and on Valentine's Day this year, we found out that the cancer spread to my bones. I was just taken off a chemotherapy treatment because it's no longer helping me, and I'm running out of time. Knowing that there are treatments available that could help me, but I can't access, is frustrating to me and my family and friends."

Prostate cancer is the most common cancer to affect Canadian men and approximately 26,500 men will be diagnosed this year.³ Once the tumour spreads beyond the prostate, or metastasizes, there are few treatment options available.

"As an oncologist responsible for the care of men with metastatic prostate cancer, being able to offer my patients the best treatment options available based on demonstrated safety and efficacy is paramount to my practice," says Dr. Sebastien Hotte, a medical oncologist based in Hamilton. "This community has received exciting news lately with the approval of new treatments that not only extend life, but also offer a better quality of life. The sooner late-stage cancer treatments are funded for patients, the better."

According to Ontarians, when governments are making decisions about what treatments to fund for late stage cancer, the quality of life of a patient, overall survival rate and the outcome of therapy should weigh heavier on their decision than the cost of the treatment. The majority of Ontarians (86 per cent) feel the government should readjust its priorities to ensure that more funds are in place to ensure people have access to cancer medications when needed.⁴

"All Canadian cancer patients, regardless of where they live, are entitled to timely access to medication that can improve their quality of life and slow down disease progression," says Jackie Manthorne, President and CEO, Canadian Cancer Survivor Network. "It's especially important that patients with advanced cancer receive necessary treatments that may give them more time to spend with their family and friends, enjoying life."

The survey found that 78 per cent of Ontarians believe that you cannot put a price on time when it comes to extending their or a loved ones' life. Ontarian respondents indicated spending more time with family and friends (81 per cent), ability to do everyday activities like shopping or doing things around the house (41 per cent), and greater independence (40 per cent), when describing the value in delaying the progression of cancer for a loved one.⁵

About the Access to Medications Survey

The survey was conducted from November 29 to December 5, 2011, by Leger Marketing on behalf of Janssen Inc., through an online questionnaire among a sample of 1,831 Canadians 18 years of age or older, including 251 Canadians affected by prostate cancer (206 patients and 45 caregivers). A probability sample of the same size would yield a margin of error of +/- 2.3%, 19 times out of 20.

About Janssen Inc.

At Janssen, we are dedicated to addressing and solving some of the most important unmet medical needs of our time in oncology, immunology, neuroscience, infectious diseases and vaccines, metabolic and chronic diseases and women's health.  Driven by our commitment to patients, we bring innovative products, services and solutions to people throughout the world.  Janssen Inc. is a member of the Janssen Pharmaceutical Companies of Johnson & Johnson.  Please visit www.janssen.ca for more information.

References 
_________________________

¹ The Access to Medications survey was conducted from November 29 to December 5, 2011 by Leger Marketing through an online survey among a sample of 1,831 Canadians 18 years of age or older.
² Ibid.
³ Prostate Cancer Facts.  Prostate Cancer Canada.  Available at:http://www.prostatecancer.ca/Prostate-Cancer/Prostate-Cancer/Prostate-Cancer-Facts.   Accessed June 7, 2012.
⁴ The Access to Medications survey was conducted from November 29 to December 5, 2011 by Leger Marketing through an online survey among a sample of 1,831 Canadians 18 years of age or older.
⁵ Ibid.

Prostate Cancer Screening North of the 49th Parallel

The U.S. Preventative Services Task Force (USPSTF) recommendation against the use of Prostate-Specific Antigen (PSA) blood tests sets a dangerous precedent for all patients seeking preventative measures in the fight against cancer. Prostate cancer is the most common form of the disease, representing one quarter of all new cases diagnosed annually in Canada. A PSA test is the most common tool to detect prostate cancer when it is still localized and asymptomatic. All men should have the option to educate themselves about the merits and risks of PSA screening. The Task Force’s recommendation to deny discussion on this subject effectively removes this fundamental right from the patient. The Canadian Cancer Survivor Network (CCSN) is deeply concerned about the potential spillover effects of this recommendation on screening policies in Canada.

The Task Force’s report was recently touched upon on this side of the border by André Picard in the May 21^st edition of the Globe & Mail. Mr. Picard is incorrect when “sadly” claiming that the recommendations of the Task Force will be ignored. They will most certainly not be, especially if Canada takes a page out of the Task Force’s book and aligns its own policies to match a U.S. health care system with a very different type of funding structure. Picard has effectively confused the qualities of a risk-adverse Canadian public with risk-adverse U.S. insurance companies.

While prostate cancer may not be the most lethal variant of the disease, it is damaging to simply label it as harmless. It can be gradual in its development, but there are no other means of detecting its existence prior to it metastasising. Prostate cancer will kill an estimated 4,000 sons, fathers, brothers and uncles in Canada this year.  But this figure doesn’t take into account the number of lives saved because of screening practices. Even if patients choose not to immediately act upon elevated PSA levels, they have an inherent right to establish the means by which to monitor those levels and respond accordingly. Over 90% of prostate cancer cases are curable when detected early.

The Task’s Force’s recommendations to eliminate screening will not sustain this success rate. While they claim that abandoning the PSA-test won’t have a huge impact on mortality rates, this statement is only true for patients well into their mid-70s. It does not reflect the reality facing young Canadians or males in the high risk 50-65 age range. This report does not take into account continuing observational studies occurring now, instead placing its weight behind several major studies with self-declared methodological limitations. There were also a number of major players not represented within the Task Force’s membership, including the American Urological Association and the American Cancer Society, both of whom strongly advocate for increased use of PSA tests on the grounds that other methods can’t detect the cancer until it spreads. It should also be noted that there are no prostate cancer patients or survivors on the Task Force.

PSA tests are currently covered by seven out of ten provinces in Canada for screening purposes, however the federal government’s decision not to renew the 2014 Health Accord could jeopardize coverage for PSA tests, as provinces will face continuing pressure to reduce their spending on health care. The CCSN encourages all concerned patients to contact their provincial Minister for Health to remind them of the importance that PSA tests play in ensuring the health and safety of all Canadians.

For more information on PSA tests, please visit Prostate Cancer Canada’s website at: http://www.prostatecancer.ca/Prostate-Cancer/About-the-Prostate/PSA