Big Pharma, Innovation and Cancer Care

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 and doctors, and, in our hearts, 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 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 with 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 a 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 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 in 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 becomes 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 rein 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 its 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 form 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 the 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!

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

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.

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.

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!

Language Learning and Prediction in Infants: UBC Quinn Memorial by Richard Aslin

Every year there is at least one lecture I eagerly await and look forward to, namely the Quinn Memorial Lecture Series. It has been my fifth attendance over the last six years, with my first one being Michael Gazzaniga’s exquisite lecture entitled Free Will and the Science of the Brain. Unfortunately, I had to miss last year’s lecture by Dr Robert T. Knight because the date and time interfered with my work schedule, but I had been luckier this time around.

Although it certainly did not look like it at first. The scheduled talk Learning and Attention in Infants: The Importance of Prediction in Development by Distinguished Scientist Richard Aslin was suddenly canceled and postponed to a later indefinite date. No reason nor future date were given at the time. Could it be that my brain would have to go two years in a row without the much needed and much desired annual adrenaline shot of knowledge?

Thank goodness, my worries were unfounded, and there I was seated upfront with my smartphone in hand to take notes in preparation for this blog post. I did not know what to expect and on paper, at least for me, the topic at hand about how infants learn language and make predictions about their surroundings did not have the similar emotional impact on me as did previous topics and titles of this wonderful series.

There was certainly nothing wrong with the subject, but for me personally, it came about a decade too late as my son has already taken his first steps into the preteen period. More importantly, I did not wish to hear in retrospect how I may have potentially failed him as a parent in terms of language learning and / or behavior.

Yet again for a second time, my worries were entirely unfounded. The talk itself was much more interesting and engaging than I had imagined. First, Dr. Aslin told us how infants learn through auditory statistical learning. This means that they break streams of words, which are for them initially nothing but random sounds, into auditory chunks, hence creating word boundaries.

These boundaries are often signaled in fluent speech with pauses, such as taking breath. These word chunks then are basically processed and analyzed by the infant brain to make predictions. In order to be able to better understand and predict their surroundings, babies have the tendency to listen and pay more attention to novel and infrequent words and tones.

Why? Because by knowing and establishing certain patterns, they can better understand the rules. This is not a case of merely memorizing words but also looking past them for meaning (vocabulary as a symbol of a designated thing / event in the world) and learning about the inherent rules (grammar, sentence structure and appropriate word choices). 

In a way then, it is memorization plus generalization, respectively known as model-free and model-based learning; the latter of which is generally designated as smart, abstract and flexible ways of comprehension, while the former is rather unfairly treated as the opposite of all those epithets.

Certainly, there is also incidental learning. This means that we absorb knowledge and information without particularly focusing on the given stimuli. This type of learning would occur when one is performing a task by also taking in background noise or information in an almost automatic or subconscious manner. 

Evidently, paying attention is much better suited for learning, but even when we do not notice stimuli implicitly, we are still aware of and capable of remembering strands of information around us without having to specifically focus on them.

The manner they tested all of this was very interesting. The researchers inundated infants with random sounds and stimuli, both in terms of nonsense words, i.e. random syllable sounds as well as tones. Babies tended to be interested in new stimuli, but whenever they managed to discern a clear and repeated pattern, they would lose interest.

This occurred because infants were able to predict the next sound, so the sequence did not provide any novel information for them. Once a pattern was established, the baby moved on to something else … unless there was an unexpected result. That is, if they were expecting a given sound to follow, but either it did not, or the pattern was changed, then the element of surprise would warrant and elicit their attention again.

This happens mainly due to the structure of our brain. To clarify this tendency of the brain to create, establish and predict patterns, they conducted an interesting experiment with pairs of tones. The researchers would play the sound of two honking horns beep beep. After repeated exposure, the baby expected them to come in pairs, yet when the researchers omitted the second beep, the brain nonetheless supplied it.

This was discovered by hooking up wires on babies (no worries, this is harmless and painless standard procedure), thereby noting the infant’s brain activity. In other words, when the brain registered the first honk, the second one was immediately supplied by the brain, regardless if it was or was not there!

Since our brains are wired to make sense of our environment in terms of words or tones, we would use top-down processing once a pattern has been established, meaning that the higher structures of the brain would override the lower ones. In the previous experiment, the higher brain regions literally expected the double tone.

Once inferences were made, babies would then allocate attention to new information. This was observed by their behavior and reactions, such as looking longer at unexpected stimuli or looking away from expected, hence “boring” and unstimulating stimuli. 

In that sense, the brain works tandem with behavior, we are able to see connections and patterns and then start looking for them, hence it is the brain structure that is grounded and established first before the behavior sets in and manifests itself.

About 9 months of age, infants start searching for hidden objects because their brain - and with it their imagination - has developed to a state where the infants are capable of doing and perceiving such a thing; by around 18 months, they can produce two-word sentences. This seems to be universal and is caused by brain development growth and changes.

Yet some of the startling, if not downright shocking, finding was in relation to premature babies. It turns out that they can be at a significant disadvantage when it comes to their brain development although this may not be immediately visible or discernible in their behavior.

Put differently, premature babies may act and behave the same way as other infants, but their brain is less developed than their full-term counterparts. That sent shock-waves down my spine as my son was born prematurely! However, if you have premature children, or if by chance, you are one yourself, keep in mind that this is not always the case.

First off, each case or person is different, and it is not necessarily a disadvantage to begin with. In fact, the premature baby may make up for brain development at a later stage. Due to the plasticity of this magnificent and complex organ of ours, the brain can compensate for parts that have not fully developed, even more so at a younger and developing age. We should also note that the studies were conducted with babies that were significantly premature by about a handful of months and not by a mere month as it was in the case of my son.

Moreover, there are two other general factors that are significant and essential for learning as well. One of them is the fact that salience and prior knowledge tend to drive attention. Anything that is surprising and simply, or maybe ostentatiously, stands out will draw the attention of infants, an observation that is probably equally true for the adult age. The commonplace, however, is generally not worth a second look.

The other factor of importance is what is generally known and referred to as the Goldilocks effect. This simply means that if the information or stimuli presented is too simple or too complex for the baby, he or she will simply look away and lose interest. 

The Goldilocks effect plays also a significant role when it comes to stress and anxiety of children at school; optimal attention and learning is usually achieved when the material and / or environment is neither too comfortable and relaxing nor too stressful and exacting. The middle ground, i.e. the Goldilocks effect, is usually optimal for learning. 

But another question that arose was why was it that we as adults lose that infant ability to make sense of our environment? For instance, this type of processing information would be most useful when learning a second or additional language. Why was the same process not supplied to us at a later stage since it would make our language learning – and life - so much easier?

Part of the problem stems from the fact that as adults we have already established preconceived and set ways of learning and of reacting to our environment, commonly known as entrenched learning. Since we can make more and better sense of our surrounding, and we already have a plethora of prior information and knowledge to select from, we can predict it much better. As a result, and for better or worse, we are not so much drawn to new stimuli and information, but, in a sense, we lose some of our capacity for curiosity and wonder. 

But this is perhaps not the only reason we become somewhat jaded as adults. The other driving force, an issue that came up during my personal conversation with Dr. Aslin afterwards, was anxiety. When we are young, we are generally driven by our anxiety to make sense of everything that is around us, as it could spell potential threat and danger to our health and wellbeing. Once we have sorted out the information, we somewhat lose or at least soften that anxious edge.

With less anxiety, there is also less need to fear or worry about new stimuli. Dr. Aslin called this the dichotomy of an exploring baby versus an exploiting adult brain. While as infants, we strive to look for clues and knowledge to make predictions, as somewhat “jaded” adults, we want to use whatever new knowledge we get our hands on to better serve our benefit and purposes. Most of these developments may origin in the brain and are hence automatic and not necessarily within our control.

This has repercussions in terms of language learning as well. Our life does not so much depend upon making sense of the world since we have already more or less successfully passed through that stage in our younger years. However to finish on a more positive note, we can (and I would say should), despite our brain and age, preserve a sense of wonder by occasionally feeding the child within us and hence ensuring that this worldview or way of interpreting the world is still kept alive and well.