In this episode, Tracy Slaney and Sevtap Savas talked to Barry Stein, the director of Colorectal Cancer Canada, a community support organization focusing on colon and rectal cancers in Canada.
Barry candidly shared his story with cancer and how this experience shaped his advocacy and leadership.
Dear Members of House of Assembly – Newfoundland and Labrador,
Cancer touches everyone.
When it strikes us, or someone close, we know that they need support, and we all want to help.
As an elected representative, your role is crucial, and your actions can save lives.
The Atlantic Cancer Consortium Patient Advisory Committee (ACC PAC) is part of the national Marathon of Hope Cancer Centres Network. Our membership includes 15 members from Atlantic Canada, 11 of whom are public members affected by cancer. I proudly lead this group.
We invite you to take a look at the priorities identified in our paper to explore ways to address them in our region, and reach out to us with suggestions about how you may be able to fast-track improvements.
We are happy to meet in person or virtually.
Thank you and kind regards,
Sevtap
Thanking Bev P. for her valuable help with the content.
Please join Stephanie Howlett chatting about ovarian cancer, being a cancer warrior and queer person affected by cancer in this new powerful podcast episode!
One great advocate I know in Newfoundland and Labrador (Tracy Slaney) once said that they need a “reliable car” to help travel to and from St. John’s for treatment of his husband, Jim.
I keep thinking about this. Especially on snow days.
Not just a car. A reliable car.
A car that will take you to your destination safely.
While I am not directly doing research in economic impact of cancer, nevertheless, the challenges faced by patients and families – including the financial cost and barriers while receiving care and surviving beyond cancer – are very important for my advocacy and my understanding of the cancer experience.
Here are some of the key points I gathered from this report:
The authors say that they focused on estimates which are based on most commonly diagnosed cancers only. In addition, these estimates may vary among people affected, as well as by province and territory. In addition, not all costs are included, such as those because of psychosocial effects of cancer. Hence, these should be kept in mind while interpreting this information (that is, the average cost per person could be actually higher than these estimates)
Cancer is the leading cause of mortality in Canada. As such, cancer has a substantial cost to Canadian society – both through its cost associated with the healthcare system delivery and the cost shouldered by patients and caregivers
The estimated cost of cancer in Canada for 2024 is around $37.5 billion. This cost is expected to increase in the coming decade, mostly because more people are expected to be diagnosed with cancer and more people are expected to survive cancer
Almost 80% of this cost is shouldered by the healthcare system, while the remaining is shouldered by patients and caregivers. Cost of cancer differs among cancer types, with most common four cancer types claiming almost 50% of all costs (lung, breast, prostate, and colorectal cancers)
Economic cost of cancer per person has been increasing due to factors, such as rising cost of treatment and support services. The overall economic cost of cancer in Canada may have been increasing due to aging population (which increases the risk of cancer) and growing population (the higher the number of people living in Canada, the higher the number of people affected by cancer in Canada)
The cost of cancer for each patient is estimated to be around $33,000 and is likely to mostly happen in the first year following the cancer diagnosis. However, cost of cancer can continue after that time period
Healthcare system costs associated with cancer include those like physician and hospital services/cancer care, some prescription cancer drugs, radiotherapy, chemotherapy and so on. On the average, per patient amount shouldered by the healthcare system is 4 times that of what a patient shoulder ($33,000 x 4 = $132,000)
Cost of cancer shouldered by cancer patients and caregivers include various costs.
For example;
those cost that are directly related to receiving care (prescriptions, devices such as walking sticks and colostomy supplies, home care services, travel and accommodation related expenses, time needed for traveling to and from, or waiting for treatment, insurance payments & copayments)
lost income or opportunities due to sickness/sick leave or caregiving obligations are within the costs associated with cancer, however indirect they may be
psychosocial impact, such as quality of life related costs
7. There are some communities facing systematic barriers to access care and clinical trials, for example, those living in rural areas, low income families, and marginalized communities – these communities may be at increased risk of having cost of cancer. Of note, Atlantic Canada has a high proportion of its population living in rural areas (around 45%).
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So what do we do with this information?
It seems that cancer will continue to rule our lives.
Is there a chance that we can help prevent this?
The authors state that this information will help planning by both the healthcare leaders and families affected.
I agree.
I think we should also focus on additional solutions:
collecting more systematic cancer-related data to come up with more precise estimates; for example, I suspect the cost associated with cancer to be a bit higher in Atlantic Canada than the rest of Canada (because of higher portion of the population living in rural areas) and concentrated cancer clinics/hospitals in urban regions)
preventing and early detecting cancer
removing barriers to access to care and reliable health-related knowledge
increased support to low income families and at-risk communities
removing systematic barriers experienced by marginalized communities
setting regional equity for cancer drug access and clinical trials within Canada
better synchronized inter-provincial and territorial drug coverage
better provincial and territorial insurance plans
better public awareness about cancer, its impacts, and resources/support available to help prevent, early detect, and treat cancers
For better days ahead, we need to combine our hands, hearts, minds, and forces.
Please advocate for yourself and others to prevent, early detect, and treat cancer.
THESE ARE WHAT I WANNA SAY TO FUTURE CANCER PATIENTS AND FAMILIES:
– Should we let cancer rule our lives?
– Are there things to do to prevent it? For example, thru addressing smoking, alcohol consumption, sedentary life style, diet & other exposures (including some infections)
– Screening and early detection can save lives
– Anything unusual? please see your healthcare provider, regardless of your age
– Please advocate for yourself and others
AND THESE ARE WHAT I WANNA SAY TO GOVERNMENTS AND HEALTHCARE SYSTEMS:
– address the social determinants of health
– solve the primary care access issues
– address the financial cost of cancer and other needs of affected families and individuals
– information campaigns on cancer are critical, especially in this age of misinformation and disinformation
– Invest in people and healthier population, so that we can be a stronger country, economy, society, and more
I was delighted to meet & speak with Minister Hogan and three other persons from the Department of Health and Community Services, Newfoundland and Labrador today as an advocate.
I appreciated the interest, warm welcome, and genuine listening.
Below is the 2-pager I left with them and what we talked during the meeting (mostly).
Two things I have emphasized during our meeting:
1. Reaching out to population and engage about health-related information where they are (not where we are)
2. Consulting and having patient and family ambassadors to connect with the population to engage in health-related information
In most cases what governments can do is all comes to the cost.
We need to invest on the wellbeing of our population, in terms of prevention early detection and support.
How much is your life worth? Our life? their life?
If there is anything that can be done, I am sure he will work on it.
One day at a time. Better days ahead. Sevtap Savas, PhD. St. John’s
The World Cancer Day is an opportunity for all us to remember, acknowledge, and honor those who are affected by cancer in and out of Newfoundland and Labrador.
The World Cancer Day will be celebrated on February 4th, 2025.
Late December, I submitted two requests within NL:
1 – Proclamation request with City of St. John’s,
2 – Building Lightening Request with the Confederation Building
I am pasting them here in download-able format in the hope that if any of you is interested in doing similar things but do not know how to start, they can give you an idea.