Tuesday, June 11, 2019

Margaret Trudeau: Perpetual Teenager and Advocate for Mental Health Awareness

People awaiting Margaret Trudeau in Hotel Room
Last week I had the pleasure to attend a talk given by Margaret Trudeau at the Fairmont Hotel in Vancouver. Margaret Trudeau is in a unique position when it comes to Canadian politics (the closest to her would be Barbara Bush south of the border): she was not only wife to the ex-Prime Minister Pierre Elliott Trudeau, but she is also the mother of the current one, namely Justin Trudeau (she gloated that the latter won by a much wider vote margin than her ex-husband).

But Margaret had not come to talk about her relationships and position within Canadian politics, she was here to talk about her personal struggles and experiences with bipolar disorder as well as to shed some light upon the dark and negative stigma surrounding mental health. Her talk was entitled “Changing My Mind” – also the title of her third published book. The event was sold out, and we all eagerly awaited Margaret to take the stage.

However, there were a few presenters before the main talk. The most impressive introduction was given by the President of UBC Santa Ono wearing his trademark colored bow tie. I was impressed that he was not only advocating for mental health but also making it a priority at the university. He confided to us that he himself had suffered from clinical depression as a young adult and that he was about to take his life at one point. This was not only very brave and courageous on his part, but at the same time it felt uplifting since he demonstrated to us that despite it all (or perhaps because of it all), he had achieved an impressive position and status in life as the president of a renowned university.

Margaret was then formally introduced, and we got our first glimpse of this woman who occupied such an enviable as well as difficult position in life. She told us that because of her disorder, she was like a “perpetual teenager” - a term I very much appreciated and that sat well with her as she was bubbly, energetic, engaging and funny throughout the evening.

However, she was talking very rapidly, and there were times the abundance and overflow of words and information made my head spin. Ten minutes in, I was not sure I would be able to sit through it all, but her sense of humor helped tremendously, and right before us all, without any notes and apparent plan or structure, this perpetual teenager spoke to us without a pause, breath or blink, but she had an important story to tell.

First off, she said that we do not scold, look down or frown upon people whose body does not function as it should; people whose organs, limbs, ears and eyes are not working properly tend to have our sympathy and understanding, but when we say that our brains are not working as they should, it becomes a different situation all together. We recoil, stigmatize, trivialize or even blame them for their shortcoming. Well, she said, in her case, it was that her brain was dysfunctional, and she had to suffer a lot before she was given the treatment and understanding she so desperately needed.

Her first symptoms emerged during adolescence, but they were immediately dismissed and shrugged off as the upheavals and ups and downs of being a teenager. Like many young adults, she would experiment with alcohol and drugs, but the problem is that people with mental illness may fall into the vicious grasp and cycles of substance abuse. In her case, during her manic phase, she would already be high, and then it would be confounded and intensified to a much higher degree when combined with alcohol and drugs.

There are various changes in body chemistry that affect people who have been diagnosed with bipolar disorder. On one side, during the depressive phase, her serotonin levels would be too low. Serotonin, a chemical and neurotransmitter that regulates mood, is responsible for feelings of calm, peace, love, and joy, and in larger amounts for excitement and euphoria. Serotonin is a connector, so certain stimuli would elicit corresponding feelings; for instance, watching a beautiful sunset, walking in a forest or listening to beautiful music would trigger a feeling of calm or bliss.

In people who have lower levels, there would be a disconnect. Like us, they would see the amazing sunset, but it would not invoke any strong feelings or in some cases, no feelings whatsoever. This is the reason why depressive people rarely respond to beauty or happiness that we tend to perceive; it leaves them untouched and cold due to a lack of this neurotransmitter. Add to that a lack of sleep, and the situation worsens because a good night sleep replenishes the levels of serotonin in one’s body. So does food like seeds and nuts as well as raw oysters; the latter is often labeled as an aphrodisiac, but it is essentially a feel-good food, she grinned.

Dopamine, on the other hand, is what creates all kinds of energy and emotions ranging from insights, spiritual experiences, artistic endeavors to fear and anxiety. Most artists tend to have higher levels of dopamine as it makes them feel situations and experiences more profoundly, and it comes as no surprise then that many great artists are and have been bipolar. This condition may help them to dig deep; in their restless manner, they would be able to achieve great insights and results. Give me an empty canvas in my manic phase, and I will fill it up within a short amount of time, Margaret told us with a smile.

However, there were also various scary and uncanny moments. She told us of an incident where she was supposed to go shopping in Montreal and ended up in Crete. At the time, as she was the wife of the Prime Minister, she did not need a passport and was able to travel as a diplomat. On a whim, she then decided to go to Paris instead of Montreal because she had never been there before; still not impressed, she ventured onto Crete. 

All this time, she had not communicated nor told her husband where she was or where she was heading, and he was only able to find out when she had consulted the Canadian embassy to help her get to Greece. Back then, they did not have cellphones evidently, but it had not crossed her mind to call and tell her husband about her whereabouts.

Being the Prime Minister’s wife also hindered her from getting the help and treatment she needed. After having her second child, she suffered from postpartum depression, a condition that was not as known or studied as extensively as it is today. When she saw a psychologist, he told her that it was the “baby blues” and that she would grow out of it. She said that the psychologist did not really see her as a patient but was more interested in the fact that she was the wife of the prime minister, and he told her husband to take care of her and spend more time with her.

It was after her divorce when things got much worse for Margaret, and she was admitted to the psychiatric ward. That is when she knew that there was something seriously amiss with her brain and that she would have to suffer for and because of it. Yet the advent of antidepressants combined with psychotherapy, mainly cognitive-behavioral and positive psychology helped her overcome these difficult conditions. The medication helped her balance her chemistry, while the positive self talk helped her choose the road to happiness versus the downtrodden path of misery.

As she continued talking about the importance of psychotherapy, about turning over one’s power to therapists and about choosing happiness, I could not help noticing that all things considered, the woman speaking in front of us was not quite well. She exhibited a manic state as she made it through the talk with various tangents and asides, and she even ended it all with a joke. I think that despite the many good intentions of positive psychology, it does not get to the root of the psychological issues and problems at hand; it tends to replace negative with positive self-talk, but unlike psychoanalysis, the problems and conflicts are not fully addressed nor resolved.

After listening to her for a good and rather entertaining hour, it was apparent that Margaret had gone through a lot of personal and emotional suffering, including the untimely loss of one of her sons due to a skiing accident. Yet at the same time, there was no denying her resiliency, courage and determination, and her ability to make it through life’s pain and suffering by coming out with her head held up high and by firmly standing up for others.

When Pierre Elliott Trudeau first met her, she was 18; he was much older than her and had more in common with her parents than herself, she joked, but he was immediately smitten with her. She said she did not know or understand why, but for us it was not hard to see how her wit, charm and determination would have melted the heart of the Prime Minister to be and how she would give him a son who would be the current Prime Minister of Canada.

Wednesday, May 22, 2019

Big Pharma, Innovation and Cancer Care

Image of white and blue pills that spell out the word cancer
I have the deepest respect and admiration for medicine. It is through arduous and painstaking research and experiments that medicine has reached a pinnacle in our lives: The field of medicine is not only making our lives more livable by improving quality of life and helping deal with numerous chronic and debilitating conditions, but, more importantly, it is also capable of saving lives.

How many innumerable lives have been saved through penicillin, anesthesia, and vaccinations, and how many more with emergency procedures and surgeries. In many ways, medicine has moved from the dark ages of superstition, prayer and wishful thinking into an age where many diseases have come under its domain and control.

There is something essentially noble and beautiful in the fact that medicine can save lives. This is the child suffering from high grade fever who is saved by antibiotics or another one suffering from cancer who has been miraculously cured. The gratitude from all those who have been afflicted with these pangs of pain and suffering is boundless. We hug the surgeons, doctors, and, in our heart, we silently thank the researchers who made all this possible through continuous work and effort.

Furthermore, medicine helps keep us safe. In human history, we have had and continue to have epidemics that have the inherent potential to wipe out strands of humanity. This has ranged from the threat and outbreak of Ebola that has been dealt with, at least for now, through quick emergency actions and measures, and, to some extent, the AIDS epidemic, with the latter being now much more in control thanks to advances in modern medicine. Nonetheless, the next silently but steadily growing epidemic is going to be associated with obesity and cancer.

During the Public Engagement sessions that I had the pleasure to attend some weeks ago, I was privy to important information alongside facts about cancer. First off, we are living in a time of crisis in relation to cancer. In his talk, Dr. Malcolm Moore, the president of BC Cancer, gave us two definitions of the word crisis and both strongly imply the importance and necessity of immediate action: Crisis is both a “time of intense difficulty, trouble or danger” as well as a “time when a difficult or important decision must be made.”

As I discussed in a previous post, 1 in 2 people in my province will develop cancer, while 5 % of the population are already living with a diagnosis of cancer. However, the most astounding and frightening piece of information was in relation to the Cancer / Silver “tsunami” that is heading our way: The number of cancer cases will increase by 50 % in 2035. 

The projected cancer burden in British Columbia will increase by 39 % from about 28,000 cases in 2017 to around 39,000 incidences of cancer by 2030. Most of this change, in fact more than half, will be due to the aging population of people over 65; in other words, people living longer will significantly drive up the diagnosis of cancer.

In fact, in the US only, 3.6 million people of 85 years and older were diagnosed with cancer in 1975, but in 2016, there were 15.5 million people, while it is projected that in the year 2040 that number would increase to 26.1 million people among that age group. Better health care and longevity have driven up the cases of cancer, and this would represent a growing burden on health care and society as more and more younger people would have to support the health costs of the elderly. 

This is also evident in the lack of cancer care and facility; in Vancouver, there are currently barely enough chemotherapy chairs available, and since cases of cancer will steadily increase, we would need an additional 400 chemotherapy chairs by around 2040 to keep up with those rates.

Fortunately, there are different solutions available for this crisis. One of them is to promote and increase prevention. As more and more people can be potentially saved from being diagnosed of cancer, the incidents would then decrease by a significant amount. This would also mean that there would be more availability of resources for those who shall need treatment.  

Secondly, there could be more advances in treatment. More efficient and cost-effective treatment could then ensure that people will receive the care they need. The current methods of treatment are mostly effective, but they are far from perfect. About thirty years ago, very few people survived cancers like breast cancer, but today about 60 % of patients can survive over five years, while over 80% of children can survive. 

However, that also indicates that 40 % of adult patients and 20 % of children will NOT survive. At the same time, some of them who end up surviving must deal with significant side and after-effects and their quality of life will be dramatically decreased over that time period.

Thirdly, there could be advances in research that would not only focus on treatment but rather on the actual cure of cancer. Since cancer is a complicated disease, and in fact represents up to thousand variations of the same disease, there is no single silver bullet capable of curing all the strands of this disease. Yet through person-centered and targeted cancer care, we should be able to successfully eradicate at least certain cancers.

What are the obstacles then? In the first one, i.e. prevention, there is a mix of either lack of information, misinformation, or plain complacency. Many people underplay, ignore or deny the active role they have when it comes to their own health. They often blame their genes, environment, personal circumstances etc. 

Although these could be valid reasons, at least to some extent, we all have more control over them than we tend to acknowledge or realize. For instance, obesity may contain genetic components, but we could keep symptoms and potential complications under much better control with a healthier lifestyle and a more balanced nutrition.

There are various innovative treatments that have been approved by the Food and Drug Administration (note that approval by the FDA only means that they are safe for human consumption and does not imply effectiveness); these treatments, such as gene therapy, then undergo clinical trials, which are mostly funded by pharmaceutical companies.

These new approaches are using modern technology to treat cancer in a more effective, targeted and less painful manner. The quality of life of patients can substantially increase, while there can also be potentially higher success rates. Finally, if our aim is not so much alleviation of symptoms but rather eradication of the root cause of the disease, we would have the chance to cure significantly more patients.  

Yet the biggest stumbling block comes in the way of Big Pharma, the conglomeration and monopoly of a handful of pharmaceutical companies. Although I had heard and was somewhat acquainted with the issue of corporate greed in relation to drugs and medicine, the problem is much deeper and much more systemic than initially assumed or even feared.

In my opening paragraphs, I praised the potential healing power of medicine. But this same power can also be exploited by money-driven and power-hungry and greedy corporations. Big Pharma is situated firmly and squarely in the US as well as certain parts of Europe. It is indeed this monopoly of pharmaceutical companies that sets the drug price in the US and decides and weaves control over the global market.

Since medical drugs are of such vital importance for patients, the latter become vulnerable to an abusive system that prefers on one hand to drive up prices for medication, and on the other hand to restrict research for a cure of the same disease. If a given disease can be cured, then there would be no need for further medication, hence the profit margin of the pharmaceutical company could essentially decrease.

The same can be said about alternative forms of medicine as they often do not depend on pharmaceutics and are beyond the reach and control of Big Pharma. Hence, alternative medicine is, regardless of its effectiveness, generally discouraged and discredited in consumer societies. Although one should keep in mind that some companies indeed do the opposite and attempt to exploit certain people by offering fraudulent products that are ineffective, counterproductive, and even dangerous.

Nevertheless, one of the main problems here is that pharmaceutical companies are given free reign and have little to no regulation in their practices. There were various cases where vital drugs had undergone significant and unreasonable (not to mention highly unethical) increases only to ensure higher profit margins for those companies. The fact that the US government does not (chooses not to?) interfere due to their powerful lobbies and their economic weight and impact has made matters only worse over the recent decades.

The main problem is that lives are at stake and that they could be potentially saved. Unfortunately, Big Pharma has taken a noble endeavor and profession and turned that into a money-making scheme. Although a certain margin of profit is more than acceptable, the current amounts are inordinate and unreasonable. It should not cost a patient almost half a million dollars to have effective treatment for their life-threatening disease, which is the current charge for gene therapy. In BC alone, 300 to 400 million dollars of a $1.7 billion budget are spent annually on cancer drugs with drug costs ranging from $50,000 to $150,000 per patient.  

Furthermore, any advances and breakthroughs in research by universities have either been funded via Big Pharma or are taken up, appropriated and managed by them in forms of patents. The pharmaceutical companies would then use the research of hard-working scientists (in this, the University of Pittsburgh has led the way over the past decade or so) to fund their own clinical trials, which would then lead to production of drugs and treatments. In the end, most, if not all the major decisions end up falling squarely into the hands of the powerful few. And in times of crisis like ours, making the right and ethical decision is of the utmost importance!

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!