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Canadian Cancer Survivor Network 

December 2019 Update

CCSN’s Pharmacare position

Error notice: We published the Health Coalition of Canada/Canadian Labour Congress Call for Action on Pharmacare to all newsletter subscribers. Note that this should have been in the Participate section of our website, where you will find it now.

To clarify CCSN’s position on Pharmacare, here is the executive summary of A Pharmacare Vision Based on the Healthcare Needs of Patients: CCSN Brief to the Advisory Council on the Implementation of National Pharmacare.

CCSN’s entire submission can be found at https://survivornet.ca/act/pharmacare/a-pharmacare-vision-based-on-the-healthcare-needs-of-patients/
.

Executive Summary

Canada is the only country in the world with a publicly funded healthcare system that does not include access to prescription medicines. Access to prescription medicines and/or therapies – Pharmacare for short – affects all Canadians.
There are two main issues that Pharmacare must address: the uninsured (coverage gap issue) and the underinsured (formulary-based issue).

Public drug plans are only available for specific populations. Those that are not eligible for these plans do not have coverage at all unless they are provided by their employer (if they are employed) or purchased through a private insurance company. With the exception of Ontario, children to those aged 64 years old do not have any form of unconditional coverage.
Often private drug plans have premiums that are increasingly more costly with yearly maximums decreasing and formularies that become restrictive or unavailable, especially when an employer discovers that its employee(s) have a chronic illness or rare disease.

For Canadians who are underinsured, the lack of access to medically necessary therapies has resulted in out-of-pocket expenses and non-adherence to prescription medicines. Canadians are either skipping their doses, reducing them, or not taking them at all. Statistics report that about one in ten Canadians are not filling their prescriptions due to cost, equating to nearly one in four Canadian households.(1)

 
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Biosimilar is NOT the Same

Some provincial governments across Canada are forcing patients with serious medical conditions to switch their medication to one that is similar but not the same, putting patients’ health and safety at risk.

Patients with diabetes, rheumatoid arthritis, inflammatory bowel disease (IBD) and other serious conditions are being forced by the government in British Columbia to switch from their current, stable biologic medication to a biosimilar drug. Patients with these serious conditions know the time it takes to stabilize their lives and conditions on medication that works. The government is now throwing them into uncertainty and risking their health by forcing this switch.

Patients and their physicians should be solely responsible for making serious decisions about their health and medical treatment.

Forcing patients to switch to a biosimilar medication, which is not the same as their original biologic treatment, can cause additional side effects, putting them in danger. The government has no place in forcing patients to put their health and wellbeing at risk.

Why is this happening?

The government in British Columbia is forcing patients to switch from medications that are working for them, claiming cost savings. However, manufacturers have committed to government providers that they will cover the cost differences between their original biologics and biosimilar treatments in order to maintain continuity of care for patients.

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CCSN’s Fifth Ontario All-Party Cancer Caucus Meeting Focused on Chronic Pain Issues

L to R: Representative for MPP Bhutila Karpoche, Damien Waddell legislative assistant to MPP France Gélinas, Representative for MPP Laura Mae Lindo, Representative for MPP Mike Schreiner, MPP Daisy Wai, MPP Andrea Khanjin, CCSN public policy coordinator Alex Wyatt, and cancer survivor Vinesha Ramasamy. 

On December 5, 2019, Canadian Cancer Survivor Network hosted its fifth Ontario All-party Cancer Caucus at Queen’s Park. The cancer rehabilitation series focused on cancer survivor rehabilitation and cancer pain management, and featured an in-depth conversation on cancer rehabilitative services in Ontario, and treating chronic patient pain in today’s healthcare.

MPPs, experts on cancer pain management and rehabilitation, cancer survivors, and caregivers all took part in sharing their perspectives on the topics. 

Jennifer M. Jones, PhD, spoke on the challenges facing cancer survivors.
Dr. David Flemer, MD FRCPC, spoke on the need for specialized cancer pain management, and the need for rehabilitation and wellness programs for patients.
Bone cancer survivor Vinesha Ramasamy - pictured with her mother Jeyamalini Rita Ramasamy, addressed the Ontario All-Party Cancer Caucus on her experience as a survivor, and how dealing with chronic pain and side effects from cancer treatments, impacted her day-to-day life as both a patient, and survivor. 
Alex Wyatt of CCSN, spoke on behalf of lung cancer survivor John Peachy, who was unable to attend the day's cancer rehabilitation series. Alex shared John's journey with cancer that covered his diagnosis of stage 4 non-small cell carcinoma, various chemo, immunotherapy, and bone strengthening IV treatments - and how John's support system helped him with managing his pain as a patient.   
IN THIS ISSUE

Bladder Cancer Support Group in Ottawa

Canadian Cancer Survivor Network’s  Mona Forrest visited the Bladder Cancer Support Group in Ottawa November 28 at the invitation of Support Group Coordinator Snookie Lomow.

The group, about 20 people, meets the last Thursday of every month and is composed of Bladder Cancer Survivors, those in treatment, those waiting to determine what type of surgery they will choose and those newly diagnosed. The group members spoke about their type of treatment, length of time they have been well, and any complications.
 
Bladder Cancer support group Ottawa prepared for their September awareness walk
Mona gave a short history of the CCSN and described the CCSN Public Policy Program and then current issues in public policy affecting cancer patients and survivors. The group was particularly interested in the moves being taken by the U.S. to purchase drugs from wholesalers in Canada, and that individuals are also arriving by the busload from the U.S. to Canadian border towns, mainly to purchase diabetes medications and devices. The group will be writing to their political representatives to express opposition to this practice.

The Bladder Cancer Support Group agenda for the near future includes creating a document to help Bladder Cancer Patients deal with post op and will soon start planning their Ottawa Bladder Cancer Walk.

Some statistics about bladder cancer:
 Each year, approximately 9,000 Canadians are diagnosed with bladder cancer, making it the 5th most common cancer in the country, yet it ranks 19th in terms of research funding. Bladder Cancer Canada is working hard to change this disparity.

BCC relies on the September Bladder Cancer awareness walks for 60% of their annual funding—this year, they raised close to $600,000 which helps fund patient support and education programs, the new ‘See Red’ awareness campaign, and critical bladder cancer research. BCC currently serves 6,000 people living with bladder cancer, yet there are 80,000 Canadians facing bladder cancer today. It’s BCC’s goal to reach and support thousands more through their diagnosis, treatment, and recovery. 

The next meeting of the Ottawa Support Group is December 12, 2019. For further information you can contact Snookie Lomow at 613 863 0212.    

Have you had proton beam therapy?

Health Quality Ontario is conducting an assessment on Proton Beam Therapy for the treatment of cancer, and they have asked the Canadian Cancer Survivor Network to help find patients and caregivers who have experience with this type of treatment.

If you like to provide information on this treatment, please email CCSN President & CEO Jackie Manthorne at jmanthorne@survivornet.ca.

What do you know about radiology? 

The Canadian Cancer Survivor Network (CCSN), in partnership with Bayer Radiology, would like to hear from you about a topic that affects so many Canadians affected by cancer. Despite being such a common part of the cancer journey, discussions around diagnostic imaging (MRI, CT scans, ultrasounds, etc.) are almost non-existent and there are some important details you might not be aware of that could have impact your health outcome. Please take a few minutes to participate in our quick survey; your responses will help us better understand knowledge gaps so that we can work to address myths and ensure that you have all the information you need about diagnostic imaging.

To complete the survey, go to https://www.surveymonkey.com/r/ccsnudis

Coming soon – The Science of Cancer online course!

CCSN's Science of Cancer course will provide individuals who have been affected by cancer with the necessary tools, skills, and background knowledge in science, research, and cancer so that they may be able to confidently participate on peer review research funding committees, clinical trial design teams, patient and family advisory councils, and other such bodies where important decisions are being made about cancer diagnosis, treatment, and research funding.

Before the official launch, we will be looking for a variety of patients, caregivers and survivors to review the course and provide some feedback. If you are interested in volunteering, please send an email to elearning@survivornet.ca and we will get back to you with more information when the review period is ready to begin. Reviewers who successfully complete the course will also receive the certificate of completion.

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