Thursday, May 9, 2019

Public Engagement on Making Cancer Care Funding Fair and Sustainable: Day One

BC Research Institutes providing Funding for Cancer

About three months ago, after having read a book on innovative ways of approaching and dealing with cancer, I had just posted my book review when I got to know on the very same evening that my father had been diagnosed with prostate cancer. A few days later, I received an invitation in the mail regarding a public deliberation on fair and sustainable cancer funding in my province.

This event was funded by various health agencies, including the Canadian Institutes of Health Research, the Michael Smith Foundation for Health Research, and the Canadian Centre for Applied Research in Cancer Control of the Canadian Cancer Society. 

The idea of a deliberative public engagement was to invite a certain amount of people across the region to share their views and experiences so that cancer care and treatment could better reflect and realign with the consensus of the people. In other words, our voices mattered, and they would be distilled into a group of written recommendations that were then sent out to the government for possible consideration, if not downright implementation.

When I received the invitation in the mail, I did not hesitate, but immediately emailed the organizers of the event telling them how much I would appreciate to participate in this undertaking. In fact, since I do not necessarily believe in coincidences - I think the world works in synchronicity - I saw the triple connection with cancer as a kind of sign or omen. Things may come in random pairs, but when it happens three times within a very short time, a matter of two or three days, then it must be significant. And it certainly was.

After I filled out the online form, I was told to wait as they would select about two dozen people from the given candidates. Later I would be given the exact numbers, but at that time I simply had to wait. The days passed and no response materialized. I was told that we would hear back from them at a certain date, and I at times expected them to decline. Yet one night, I had a dream that they were working on a pamphlet that was to be sent out and it came with a letter of acceptance stating my inclusion in the upcoming public engagement.

Dreams can be at times prophetic, so that raised my hopes. I told my wife, and lo and behold, less than a week later, I received an email in which I was told that I had been selected. And yes, it came with a pamphlet that was attached to the email, a physical copy of which we would receive on the first day of the event.

Since it came attached with a confidentiality agreement, I was very careful about divulging any information about the event and shared it with only a few close people. I was not sure how much we could give away until we were given the heads up on the first day and were told that we could share our views and experiences on social media. This was a relief for me since before that, I had been very vague about my whereabouts regarding that given weekend.

The main issue was that due to the personal and sensitive nature of the topic at hand, some of the participants might not feel comfortable about being mentioned, but the experts, researchers, organizers and speakers were fair game, that is, we could freely quote from all of them as they were basically, due to the nature of their occupation and the situation, part of the public domain so-to-speak. I immediately warned them that they would show up on my blog, so here they are!

The first day I was impressed with how well it was all organized. There was a clear schedule and an established pattern on how things would work. We picked up our honorarium, which was a boon considering that each of us was willing to forgo two complete weekends for the event, and then we were given individual folders that included a name tag that would go in front of our seat at the table.

We were told that all our conversations and discussions would be recorded but not videotaped and that we should identify ourselves before speaking, so that they could trace back comments and opinions to the person who made them. This information would then be depersonalized and compiled to help understand the motivations and reasoning behind one’s comments and decisions. 

In fact, the discussion part was as important - if not more so - than the final recommendations as it gave insight into the thought processes, feelings as well as potential reservations that were associated with our votes and decisions.

As to the selection process, they had sent out 10,000 letters to people across the province. They used postal codes provided by Canada Post to select regions and tried to ensure to have a fair, balanced, and reasonable selection across the board of different criteria, such as ethnicity, education, income, gender, rural and urban living space and geography as well as age. By doing so, they would have access to views and values that were not specialized or relevant for a given section of the population but rather a more global snapshot of public opinion.

From those 10,000 invitations, there were 220 people who fully completed the online survey, and then slightly more than two dozen people were selected. In fact, the organizers insisted that we were specifically selected to come because they were interested in knowing more about our views and values. They encouraged us to participate as much as we can, and I immediately thought, oh boy, soon enough they would come to regret telling me that. Not that it mattered since I would have participated anyhow as these issues were lodged quite close to my heart.

Stuart Peacock sitting in front of his computer

One of the researchers who can be named and quoted because he is essentially part of the public was Stuart Peacock (pictured above in his trademark pensive mode). He is a Distinguished Scientist and is involved with BC Cancer, with the ARCC and Simon Fraser University, and he was available throughout the sessions for background information and expert advice regarding cancer care and treatment. He told us that there are 200,000 people diagnosed yearly in Canada and about 60 % of them will survive, while the rate of survival is higher among children, namely around 80 %. Traditional treatment included radiation, often a combination of chemotherapy and radiation as well as surgery.

There were also more innovative treatments on trial, such as gene therapy, but one of the main issues was that there was still not sufficient data regarding its effectiveness but more importantly, they were extremely expensive costing about $400,000 per patient. I immediately felt compelled to ask whether the prices were high because it cost that much to undertake such treatments or whether it was because pharmaceutical companies simply charged an inordinately high amount. 

He carefully phrased his answer that implied it was more a case of the latter than the former. In fact, cancer drug prices approved by the Food and Drug Administration were increasing rapidly making it more difficult for many countries and health care systems to afford them.

Mike Burgess standing

The other researcher among our group who called himself “Mike” was Michael Burgess (pictured above in his moderating pose), Professor and Chair in Biomedical Ethics at the University of British Columbia, and he was another expert moderating our discussions. Public engagement or deliberation was a rather new concept in current politics, and there were initiatives to experiment with possible ongoing citizen advisory boards and committees. 

In a debate, the goal was to win by questioning and challenging the other person’s point of view, such as presidential election debates, but deliberations had a somewhat different mindset, namely one of being inclusive, civic-minded and respectful of other points of view. I was reminded of the ancient Greek councils where philosophical and political discussions were held, except that they were not inclusive since the ancient Greeks purposely barred women, slaves, and foreigners from their councils.

On the first day of the public engagement and before any deliberation took place, we were treated to three different speakers. Two of them were cancer survivors, one of them, a young female, had survived colorectal cancer, while the other, a male, had survived prostate cancer and was now the chair of a prostate cancer support group. 

The latter strongly promoted PSA (Prostate-Specific Antigen) tests to be covered by BC health care because that test essentially saved his life leading to an early detection of his cancer. PSA screening is often not undertaken; although it may spell out diagnosis, it can also lead to misdiagnosis, and hence cause unnecessary stress and anxiety in the tested individual.

Yet when prostate cancer is detected in time, it can have a nearly 100 % survival rate among patients. In his case, it was a fortunate array of circumstances that led to the early detection of prostate cancer. In fact, his general practitioner had been reluctant to do the test, but accidentally ticked it off on an unrelated blood test as it was supposed to measure his cholesterol.

When the speaker was asked (I believe it was me who did the asking, but that could be easily verified by those who have access to the audio recordings) how much it cost to do the screening test, we were rather shocked to find out that it was only $30 per patient. And equally shocking was the fact that the tests were covered everywhere in Canada except in BC and Ontario. In fact, prevention and screening were themes that were important for all of us participants throughout the deliberations.

The final speaker of the first day was Malcolm Moore, a Medical Oncologist and current President of BC Cancer. One would think that as a president he would wield significant powers, but the impression we got were that his hands were tied in various matters, including decision-making, especially when pertaining to budgets and funding. In the end, it was bureaucracy that would have the final word and make the ultimate decision.

Dr Moore started off by giving us various statistics regarding cancer. In terms of deaths in Canada, 30.2% of deaths are attributed to Cancer, in comparison 19.7 % die of Heart disease, 2.8% of Diabetes, and 4.6% of accidents. In British Columbia, 1 in 2 people will develop cancer at some point in their lives, and 1 in 5 will die from it. In 2017, there were 27,000 people diagnosed with cancer and 10,500 died from it. Currently, 5% of our population is living with a diagnosis of cancer.

The cancer treatment system started with radiation and was then combined with chemotherapy. In fact, our province of British Columbia has lower incidents compared to other parts of Canada as well as other countries in the world, which he assumed was mainly due to our healthy lifestyle.

The budget that BC Cancer receives from the government is 700 million dollars per year. Most of the funds are spent on treatment, such as radiation and chemotherapy, which are completely covered by BC Cancer. In total 400 million dollars, more than half, is spent on cancer drugs, and only 4 % of the budget is spent on prevention and screening, and a mere and meager 1% on Research. BC Cancer, however, is not the only institute spending money on prevention as it contributes less than 20% of the overall budget on prevention; some prevention programs are covered through different agencies.

As a matter of fact, about 50 to 60 % of cancers are preventable. One can effectively and significantly reduce the risk of cancer by not smoking since cigarettes are directly related to incidents of lung cancer (90% of lung cancers are due to smoking), by maintaining a normal body weight, which can protect you against various types of cancer, and by regularly screening for cancer since early detection can increase your likelihood of survivorship. It was indeed most interesting to be given statistics about cancer care and funding and to be given details not only about the budget but also about certain obstacles and hindrances, including pharmaceutical companies, also known as Big Pharma.

But more about the latter in my upcoming posts. Since there is much more information I would like and in fact even feel the need to share with you, I shall break it all down into three parts – again the number three being my symbolic guide throughout. 

The second part of my experience of the Public Engagement series will be about Big Pharma, Innovation and Prevention, whereas the final concluding part would be my own personal reflections and opinions on and about the event and the topic of cancer. So please stay tuned, subscribe to my blog or merely come back for Parts Two and / or Three!


Unknown said...

how could you remember all the details. what a great post!

Arash Farzaneh said...

Thank you so much for your comment! I very much appreciate it!

Well, I took copious amounts of notes during the event and was able to decipher most of my scribbles ; )

Will post more on it soon!