[Hopespringpcsg] FW: Canadian Cancer Survivor Network December Eletter

Wed Dec 16 20:12:42 EST 2015

Hi all:

See CCSN newsletter below.

Take care,

Glen

Subject: Canadian Cancer Survivor Network December Eletter

Welcome to the Canadian Cancer Survivor Network's monthly newsletter! 

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In this issue... 

*	Support cancer survivors <> 
*	Cervical cance <> r portal <> 
*	Edmonton meetings <> 
*	Webinars <>  on YouTube
*	Partner spotlight <> 
*	Happy Holidays from CCSN!

CCSN December 2015 Update

The  <http://survivornet.us8.list-manage1.com/track/click?u=318d4e052fdd9593317146113&id=3b9bfdfd1f&e=79f909daf9> Canadian Cancer Survivor Network (CCSN) works with patients, survivors, families, partner groups and sponsors on collaborative action to identify and remove barriers to optimal patient care; to ensure access to education and action opportunities and survivor involvement in health care decision-making, and to support evidence-based research on ways promote equal access to early diagnosis, timely treatment and follow-up care.

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Cancer patients and survivors 360: fighting the disease and overcoming the financial, emotional, spiritual, social and work-related issues during and after cancer.  

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There are one million cancer survivors in Canada – so there is an “after cancer” life for so many. 

How will we live that life? Lifelong medications are expensive, fear of recurrence is pervasive, economic impact can be long-lasting - what can we do about it? 

The Canadian Cancer Survivor Network is a strong voice to help policy makers understand life after cancer and work on shorter wait times for diagnosis, for the time between diagnosis and treatment, and understand the need for a survivorship plan of care.

We need performance indicators for shortening the long, long process of acceptance of new cancer diagnostic methods, new drugs, innovative technologies, and a fairer way to make essential medications available consistently across Canada.

Patients need a voice to bring issues to the decision-making tables.

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The Canadian Cancer Survivor Network asks you consider cancer patients and survivors for your holiday giving. Help put improvements in treatment and after treatment on the “important” list, to encourage people, nationally and locally, to help support patients and survivors to raise awareness about patient participation and challenges of life after cancer.  

With your help, we are able to work together to continuously provide support for cancer patients and survivors to better their quality of life.

 <http://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=126e46018d&e=79f909daf9> Donate Now! 

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The Canadian Cancer Survivor Network is pleased to announce the launch of its newest  <http://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=8786cec2df&e=79f909daf9> website portal on cervical cancer.

CCSN recognizes the heavy burden a diagnosis of cervical cancer places not only on women who are diagnosed with it, but on their families and extended support networks. In response, CCSN has created an online portal recognizing and addressing the experience of cervical cancer, whether in its early or more advanced stages. 

About the Portal

The Cervical Cancer Portal provides a trusted and accurate source of information and resources. Like the spokes of a wheel, sections on the portal centralize information on the diagnosis and treatment of cervical cancer, provide information and resources on financial planning and address the issues that caregivers face. It also provides detailed information that the HPV test for cervical cancer is more accurate than the Pap test in that it detects cancer risk earlier and prevents more deaths than the Pap test.

The Cervical Cancer Portal includes the following sections:

*	Cervical Cancer Screening: the HPV and Pap test
*	HPV and cervical cancer risk factors
*	Diagnosis of cervical cancer
*	Cervical cancer treatment
*	Living well with cervical cancer
*	Caregiving and cervical cancer 
*	Financial information and resources

Social media platforms include a cervical cancer Twitter account,  <http://survivornet.us8.list-manage2.com/track/click?u=318d4e052fdd9593317146113&id=acde644e51&e=79f909daf9> @cervicalcanca, as well as the Canadian Cancer Survivor Network’s general Twitter account,  <http://survivornet.us8.list-manage1.com/track/click?u=318d4e052fdd9593317146113&id=a46d0b7baa&e=79f909daf9> @survivornetca.

Click here <http://survivornet.us8.list-manage1.com/track/click?u=318d4e052fdd9593317146113&id=59fd1b2525&e=79f909daf9>  to check out the portal!

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Canadian Cancer Survivor Network president and CEO Jackie Manthorne recently visited Edmonton, where she met with Dr. Bob Turner, MLA Edmonton-Whitemud; Dave Rodney, MLA Calgary-Lougheed; Ric McIver, MLA-Calgary-Hays and interim leader of the Progressive Conservative Party of Alberta; and Dr. David Swan, MLS Calgary-Mountainview.

Photo: CCSN President & CEO Jackie Manthorne (left) & Dr. Bob Turner, MLA Edmonton-Whitemud (right).

During these meetings, Manthorne raised several issues facing the nearly one million cancer survivors living in Canada today, including: 

*	Fear of cancer spreading or coming back.
*	Physical side effects of treatment or surgery or the cancer itself.
*	Psychosocial or mental health issues.
*	Changing family dynamics.
*	Difficulty transitioning back to work.
*	Financial problems.

Manthorne also spoke about the physical and psychosocial side effects of treatment which are wide-ranging and primary concerns for cancer survivors: 

*	Dealing with a wide range of physical side effects from treatment and surgery years after treatment ends. These side effects include facial and intestinal reconstruction, neuropathy, and other debilitating physical issues.
*	Lymphedema, or swelling in the arms or legs, a serious and frequent concern among survivors of breast and other cancers. Aside from the physical problems it creates, lymphedema is also a barrier to returning to work and the cause of financial stress.
*	Pain which can result from nerve damage, from scar tissue and from surgery is a continuing cause of distress for many survivors.

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CCSN would like to thank the MLAs for making time for meeting and for being receptive to our message about the unmet needs of cancer survivors. CCSN plans to continue to raise awareness and to dialogue with Alberta legislators and decision-makers.

Photo: CCSN President & CEO Jackie Manthorne (left) & Dr. David Swann, MLA Calgary-Mountainview (right).

CCSN would also like to thank Amgen Canada Inc. and Hill+Knowlton Strategies for their support for these meetings. 

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If you missed our webinars earlier this year, they are all available for viewing on our YouTube channel! Click on any webinar title below to start watching. Be sure to  <http://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=617c58a365&e=79f909daf9> subscribe to our channel to make sure you never miss another webinar from us! Stay tuned for information on upcoming webinars. 

M <http://survivornet.us8.list-manage2.com/track/click?u=318d4e052fdd9593317146113&id=44f296ca8e&e=79f909daf9> arijuana for Medical Purposes Regulations: What Do I Need to Know? <http://survivornet.us8.list-manage2.com/track/click?u=318d4e052fdd9593317146113&id=f3f75c9688&e=79f909daf9> 
Presented by: Kaivan Talachian, CannTrust

W <http://survivornet.us8.list-manage1.com/track/click?u=318d4e052fdd9593317146113&id=8688faf5fb&e=79f909daf9> hat Chronic Disease Advocacy Can Offer Cancer Survivors <http://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=7763d7434d&e=79f909daf9> 
Presented by: Gerry Jeffcott/Rachael Manion, 3Sixty Public Affairs
Panelists: Gail Attara, Gastrointestinal Society; Shelagh Ross, Canadian Congenital Heart Alliance; Linda Wilhelm, Canadian Arthritis Patient Alliance

U <http://survivornet.us8.list-manage1.com/track/click?u=318d4e052fdd9593317146113&id=740deccf7a&e=79f909daf9> nderstanding Your Health Insurance at Work <http://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=08f0d37bce&e=79f909daf9> 
Presented by: Suzanne Lepage, Private Health Plan Specialist

Developing an Advocacy Plan <http://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=397d953076&e=79f909daf9> 
Presented by: Ryan Clarke, Advocacy Solutions

Federal Election - What Are the Parties Saying About Healthcare  <http://survivornet.us8.list-manage2.com/track/click?u=318d4e052fdd9593317146113&id=b1c01f3a93&e=79f909daf9> & Cancer?
Presented by: Gerry Jeffcott, 3Sixty Public Affairs
Panelists: Colleen Savage of the Cancer Advocacy Coalition of Canada and Kathy Barnard of the Save Your Skin Foundation

What is a Biosimilar? All You Need to Know About the Current Biologics  <http://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=a40530928d&e=79f909daf9> & Biosimilars Landscape in Canada
Presented by: Karen Burke, PhD., Amgen Canada

Challenges and Innovation in Canadian Access to Treatment and Innovation <http://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=c641918920&e=79f909daf9>  (Live from the Expert Patient Advocates & 21st Century Therapies Forum in Toronto)
Moderated by: Bill Dempster, 3Sixty Public Affairs

The Cancer Medication Geographical Roulette in Canada <http://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=888ab06afd&e=79f909daf9> 
Moderated by:Gerry Jeffcott, 3Sixty Public Affairs & Susan Turner, Turner & Associates Inc.

New Directions in Drug Approval in Canada <http://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=b39c1a9f93&e=79f909daf9> 
Moderated by: Bill Dempster, 3Sixty Public Affairs & John-Peter Bradford, Life Saving Therapies Network 

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The Life Saving Therapies Network (LSTN) is an international network of patients, patient groups, oncologists, researchers, regulators, medical ethicists, corporations and others that is focused on solving a major problem in the fight against lethal diseases such as widely metastasized cancer. LSTN is also a call to action… LISTEN… we will be heard.

Although we will contribute generally to crafting an international personalized medicine strategy, LSTN’s focus is on creating progress-centred regulations that facilitate: 

*	Clinical research reform to permit faster, less expensive access to new therapies for lethal diseases, and
*	Reforming regulatory frameworks for the development and approval of treatment for lethal diseases.

LSTN’s work is to provide thought leadership and educational resources for network members about these issues… and the need for timely reimbursement of effective treatments for lethal diseases on a nationwide basis.

Contact Information

173 Heath Street,
Ottawa, Ontario
Telephone: 613-912-4087
Website: http://www.lifesavingtherapies.com/ <http://survivornet.us8.list-manage1.com/track/click?u=318d4e052fdd9593317146113&id=5f9a71e649&e=79f909daf9> 
Email: info at lifesavingtherapies.com 

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Follow our blog focused on asbestos and mesothelioma: Canadian Meso Blog <http://survivornet.us8.list-manage1.com/track/click?u=318d4e052fdd9593317146113&id=3134a25d87&e=79f909daf9> 

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