Well, it has been a long time since my last post. Hopefully people haven't stopped checking in!
I apologize for the hiatus, but having a baby means no sleep, which means no mental energy for blog posts.
My son is peacefully napping now, so I'm stealing a moment to post on something that is important to me: comprehensive epilepsy care. Well, not comprehensive epilepsy care specifically -- but some rationale for why we need comprehensive epilepsy care.
Epilepsy is a complex, multifactorial disorder
Sure, there may be some open-and-shut cases where patients are seen by a family physician, given a first line anticonvulsant drug, become seizure free and go on to lead a relatively "normal" life.
For more than 40% of individuals with epilepsy, however, this is simply not the case. There is generally a long list of drugs that are tried over several years with limited success. Many of these individuals do not get to see an epileptologist - someone who specializes in the diagnosis and treatment of epilepsy.
To ensure that everyone, at the very least, has an option to see a specialist -we need a formalized system whereby patients are referred to see a specialist after they fail one or two anticonvulsant drugs. This would be a critical element of a comprehensive epilepsy care system -- a formalized primary care physician engagement strategy.
Uncontrolled epilepsy costs the healthcare system a lot of money
The comprehensive epilepsy care centres in some American cities (http://www.naecepilepsy.org/find.htm) are a great example of how we can improve the quality of care, improve the quality of lives of those living with epilepsy all while spending less on epilepsy care!
In 2001, the Canadian Institute of Health Information estimated that the total cost of epilepsy (in Canada alone) was nearly $800 million dollars. The direct costs were nearly $100 million dollars, with half of that for hospital care and the remainder for physician care and drugs. The major expenses, however, are not directly related to the cost of epilepsy care -- these are the indirect costs of epilepsy, such as lost productivity. These costs were nearly $700 million dollars! These are the costs that tend to be associated with individuals living with uncontrolled seizures.
I'm a lover of analogies - so here we go. If you have a problem with your car you take it to the mechanic. If the issue is complex, the mechanic may be able to narrow the problem down to your transmission, but he may not be able to pin-point/solve the problem. You can go visit a series of other mechanics who may or may not know more about your complex issue. The costs of these repeat visits add up. Or, maybe you decide to simply park the car and rent a car or quit work so you don't have to travel. All which compound your expenses and don't solve the original problem. Finally, you could take your car to a transmission specialist who, through training and experience, can likely pin-point the issue and what the best options are to remedy the problem.
Of course, in Canada we as patients don't have to worry about the cost of the specialist vs. the generalist -- but the government does in its attempt to best use the tax payer's dollar. So an argument that seeing the specialist is the most economical while ensuring the highest quality care is an essential component to proposing change in the way we currently conduct our health care services.
This is the argument that we are currently formulating. It is fairly complex, but there is little doubt in our minds that increasing access to specialized epilepsy care will cost less over time while improving the quality of care and, in the long run, improving the quality of life for those living with epilepsy.
So, stay tuned and get involved in your local epilepsy chapter. Our case for comprehensive epilepsy care is strong, and soon we will convince others that this is the only way to move forward.
Those are a few thoughts on a cloudy Saturday morning.
I hope you are all well.
Kirk.
Reference: The Burden of Neurological Diseases, Disorders and Injuries in Canada.
Found here: http://secure.cihi.ca/cihiweb/products/BND_e.pdf
Saturday, October 3, 2009
Monday, March 23, 2009
Epilepsy Awareness Month
Sorry for the long hiatus! In the past 5 months I've graduated with my PhD, started a job, moved into a house and had a baby.
So, as you can imagine, life has been a bit hectic.
Despite this business, however, I wanted to get a post out before March, Epilepsy Awareness Month in Canada, ended. That's right, March is Epilepsy Awareness Month. There are a few really exciting events taking place across Canada and here in Toronto.
First is PurpleDay (March 26th). Click the link to read all about it, but it's going to involve some really exciting events which will undoubtedly increase epilepsy awareness. For example, in Toronto, the CN Tower will be lit up purple. How fantastic is that? The (once) tallest freestanding building in the world lit up in purple to grab people's attention and let them know that epilepsy affects them and their community.
Another exciting note - SACEC has been asked to participate in an information session at Ontario's Provincial Parliament to help inform and educate Parliamentary Members on epilepsy! What an exciting opportunity to raise epilepsy awareness amongst those who hold the purse-strings for health care services. Here's is more information on that event -- please get involved if you can!
Help Raise Epilepsy Awareness at the Ontario Legislature!
On Tuesday, March 31st, 2009, epilepsy agencies across the province have been invited to participate at an information session for Ontario Members of Provincial Parliament (MPP). Medical professionals specializing in epilepsy care, leading epilepsy researchers, and epilepsy community organizations will be speaking with elected representatives about improving epilepsy care in Ontario.
Please help us with this initiative by ensuring that your MPP attends this event. Call or send an email to your local representative and strongly encourage him/her to attend the Purple Day Splash - Information Session on Epilepsy at Queens Park.
To help you find your MPPs contact information, click on: http://fyed.elections.on.ca/fyed/en/form_page_en.jsp and enter your postal code. Once you have your electoral district, search for the contact information of the MPP in your riding using the following link: http://www.ontla.on.ca/web/members/members_current.do?locale=en&ord=Riding&dir=ASC&list_type=all_mpps
As a representative of your riding, your MPP is responsible for meeting with constituents to help find services to assist them in different ways, and attend and support community events. An MPP may be able to help with and present a petition to the Legislature concerning a specific problem or issue in the riding, such as improving Epilepsy care. We hope that you will urge your MPP to attend.
Summary of "Purple Day Splash - Information Session on Epilepsy" Details:
Date: Tuesday, March 31st, 2009
Time: 9:00am - 6:30pm
Location: Queen's Park, Committee Room #2
Given all of the exciting events happening (these are just a few of the many) - it really feels like this year could be the turning point for epilepsy in Canada -- where it is no longer a disorder buried in the shadows. Please do what you can to get involved and make this year's epilepsy awareness events the biggest yet.
Kirk.
So, as you can imagine, life has been a bit hectic.
Despite this business, however, I wanted to get a post out before March, Epilepsy Awareness Month in Canada, ended. That's right, March is Epilepsy Awareness Month. There are a few really exciting events taking place across Canada and here in Toronto.
First is PurpleDay (March 26th). Click the link to read all about it, but it's going to involve some really exciting events which will undoubtedly increase epilepsy awareness. For example, in Toronto, the CN Tower will be lit up purple. How fantastic is that? The (once) tallest freestanding building in the world lit up in purple to grab people's attention and let them know that epilepsy affects them and their community.
Another exciting note - SACEC has been asked to participate in an information session at Ontario's Provincial Parliament to help inform and educate Parliamentary Members on epilepsy! What an exciting opportunity to raise epilepsy awareness amongst those who hold the purse-strings for health care services. Here's is more information on that event -- please get involved if you can!
Help Raise Epilepsy Awareness at the Ontario Legislature!
On Tuesday, March 31st, 2009, epilepsy agencies across the province have been invited to participate at an information session for Ontario Members of Provincial Parliament (MPP). Medical professionals specializing in epilepsy care, leading epilepsy researchers, and epilepsy community organizations will be speaking with elected representatives about improving epilepsy care in Ontario.
Please help us with this initiative by ensuring that your MPP attends this event. Call or send an email to your local representative and strongly encourage him/her to attend the Purple Day Splash - Information Session on Epilepsy at Queens Park.
To help you find your MPPs contact information, click on: http://fyed.elections.on.ca/fyed/en/form_page_en.jsp and enter your postal code. Once you have your electoral district, search for the contact information of the MPP in your riding using the following link: http://www.ontla.on.ca/web/members/members_current.do?locale=en&ord=Riding&dir=ASC&list_type=all_mpps
As a representative of your riding, your MPP is responsible for meeting with constituents to help find services to assist them in different ways, and attend and support community events. An MPP may be able to help with and present a petition to the Legislature concerning a specific problem or issue in the riding, such as improving Epilepsy care. We hope that you will urge your MPP to attend.
Summary of "Purple Day Splash - Information Session on Epilepsy" Details:
Date: Tuesday, March 31st, 2009
Time: 9:00am - 6:30pm
Location: Queen's Park, Committee Room #2
Given all of the exciting events happening (these are just a few of the many) - it really feels like this year could be the turning point for epilepsy in Canada -- where it is no longer a disorder buried in the shadows. Please do what you can to get involved and make this year's epilepsy awareness events the biggest yet.
Kirk.
Friday, November 28, 2008
A Few Good E-Resources
People are taking a more active role in their healthcare
More than ever before, people are starting to educate themselves on their health issues. When a diagnosis of epilepsy is made, many people begin researching immediately. "What is epilepsy?", "how did I get it?", "what is my 'new life' going to look like?", "is a cure available?", "what might my treatment look like?", "who is the best at treating epilepsy in my province/state/region?", etc. Of course, these are all things that you can find out from your physician, but many of us still want to find out for ourselves. Education is empowering, and it's nice to be able to go into the doctors office with some knowledge of your condition so you can ask more pointed questions.
The internet can be a good resource to learn about health issues, but watch out!
The internet has become an increasingly powerful resource for learning about health issues. Type "epilepsy" into google and you'll get over 11 million "hits". It's important to note that not all electronic resources (so called "e-resources" or "e-tools") are trust-worthy sources. Not many of us questioned the credibility of books. We pretty much assumed that if it was published, then the author was probably a credible source (which is a bit of a fallacy in retrospect, but I won't go down that rabbit hole today). On the internet, however, anyone can write about whatever they want, making it very difficult to find accurate, trustworthy information. I mean look, even I can write a blog!
Some tips on how to find trustworthy internet resources
Here are some tips to help you navigate through the e-quagmire. First, there are many epilepsy organizations that have very trustworthy sites (e.g., Epilepsy Toronto, Epilepsy.com, Epilepsy Foundation, etc.). The medical content of these sites is often written by an epileptologist.
Another reliable online resource for epilepsy information is the website of a hospital (e.g., SickKids). This week I received an email from the Cleveland Clinic about their new online resource centre for individuals living with epilepsy. The Cleveland Clinic is one of the largest research institutes in the United States. It is also considered one of the leading medical centres in the U.S.
Currently, the Cleveland Clinic is promoting their online epilepsy clinic. A few highlights of this site are:
Epilepsy Medical Guide
Pediatric Epilepsy Support Group
Webcast Series "Living with Epilepsy"
Blogs, as much as it pains me to say this, are often good for hearing peoples' opinions -- but they are not always trustworthy in terms of the accuracy of content. I try to keep this blog as factual as possible, but I also try to keep it highly informal.
Tidy summary
So there you have it. Keep learning as much as possible about epilepsy. Keep asking the tough questions until you get an answer. Just be careful which sites you let influence your opinion- the sites of epilepsy organizations and hospital epilepsy clinics tend to be best. Also, check out the Cleveland Clinic site -- it looks very good.
As always, if there is a topic you'd like me to post on-- then please let me know. Email me or post a comment below.
Onward and upward.
Kirk.
More than ever before, people are starting to educate themselves on their health issues. When a diagnosis of epilepsy is made, many people begin researching immediately. "What is epilepsy?", "how did I get it?", "what is my 'new life' going to look like?", "is a cure available?", "what might my treatment look like?", "who is the best at treating epilepsy in my province/state/region?", etc. Of course, these are all things that you can find out from your physician, but many of us still want to find out for ourselves. Education is empowering, and it's nice to be able to go into the doctors office with some knowledge of your condition so you can ask more pointed questions.
The internet can be a good resource to learn about health issues, but watch out!
The internet has become an increasingly powerful resource for learning about health issues. Type "epilepsy" into google and you'll get over 11 million "hits". It's important to note that not all electronic resources (so called "e-resources" or "e-tools") are trust-worthy sources. Not many of us questioned the credibility of books. We pretty much assumed that if it was published, then the author was probably a credible source (which is a bit of a fallacy in retrospect, but I won't go down that rabbit hole today). On the internet, however, anyone can write about whatever they want, making it very difficult to find accurate, trustworthy information. I mean look, even I can write a blog!
Some tips on how to find trustworthy internet resources
Here are some tips to help you navigate through the e-quagmire. First, there are many epilepsy organizations that have very trustworthy sites (e.g., Epilepsy Toronto, Epilepsy.com, Epilepsy Foundation, etc.). The medical content of these sites is often written by an epileptologist.
Another reliable online resource for epilepsy information is the website of a hospital (e.g., SickKids). This week I received an email from the Cleveland Clinic about their new online resource centre for individuals living with epilepsy. The Cleveland Clinic is one of the largest research institutes in the United States. It is also considered one of the leading medical centres in the U.S.
Currently, the Cleveland Clinic is promoting their online epilepsy clinic. A few highlights of this site are:
Epilepsy Medical Guide
Pediatric Epilepsy Support Group
Webcast Series "Living with Epilepsy"
Blogs, as much as it pains me to say this, are often good for hearing peoples' opinions -- but they are not always trustworthy in terms of the accuracy of content. I try to keep this blog as factual as possible, but I also try to keep it highly informal.
Tidy summary
So there you have it. Keep learning as much as possible about epilepsy. Keep asking the tough questions until you get an answer. Just be careful which sites you let influence your opinion- the sites of epilepsy organizations and hospital epilepsy clinics tend to be best. Also, check out the Cleveland Clinic site -- it looks very good.
As always, if there is a topic you'd like me to post on-- then please let me know. Email me or post a comment below.
Onward and upward.
Kirk.
Monday, October 27, 2008
Classic Migraine Headaches
I am a migraine sufferer. I was about 16 when I started to have these crazy visual field disturbances that were followed by a crippling headache, but I didn't know what was going on. I didn't really talk to anyone about it and just sort of hoped they would go away. Depending on the time of year and amount of stress in my life, they only happened every few months, so it didn't seem bad enough to go to the doctor (ah, the foolishness of youth). Then in my 2nd year of university I was reading "Fundamentals of Neuropsychology" (a great text by Kolb and Whishaw) and I saw a picture of the strange pattern I saw right before my headache started (shown below). This visual pattern appears small at first but it grows in size. It is very annoying. Then it disappears and the headache starts.
I read on and learned that I have "classic migraines", which are vascular headaches (unlike normal headaches, which tend to be caused by muscle tension in the head and neck areas). Classic migraines start (most often) with an "aura". The aura is the sensory disturbance that comes before the headache. There are different kinds of aura, but mine is a visual aura, called a "scintillating scotoma" (pictured here).
From: Nature Reviews Neuroscience 4, 386-398 (May 2003)
There are a few theories on what causes the scotoma. The first one I read about is the "vascular theory". This theory states that blood flow to the visual cortex of the brain is decreased, which causes the disruption in vision (i.e., the scotoma). After a short while (maybe 10 - 60 minutes) the blood flow is restored and vision normalizes. Not only is blood flow restored, however, but it is greatly increased. This increase in blood flow causes the stretching of blood vessels in the brain and this is what is thought to cause the headache pain. Remember, brain cells don't have pain receptors, but blood vessels do. When they stretch, they cause a lot of pain.
There is another theory on what causes the aura. It is called the "spreading depression" theory, and it seems to be the most well accepted theory now-a-days. Spreading depression is a seizure-like event that slowly spreads over the surface of the brain. It leaves neurons silent ("depressed") in its wake. This lack of activity in the neurons, when spreading depression affects the visual cortex, leads to the visual field disturbances. This spreading depression also causes the release of nitric oxide from neurons. Nitric oxide is one of the body's most potent vasodilators (something that causes blood vessels to dilate). [Aside: this is why patients with heart disease are often given a form of nitric oxide to take during an angina attack -- it opens the blood vessels and stops the angina]. The dilation of blood vessels causes the pounding headache associated with migraines.
Many of the treatments for migraine (e.g., the triptans - like sumatripan, aka Imitrex®) work by binding the serotonin receptors on the blood vessels, causing the blood vessels to constrict, therefore stopping the pain caused by vasodilation.
I have taken triptans a few times. I know that those who have frequent, extremely painful migraines like to have a stash of triptans around. However, I'm fairly lucky insofar as my migraines aren't terribly frequent (1/month, on average) and I've developed a fairly good system to live with these nasty headaches without having to buy the expensive drugs.
First off, I can lessen my chances of getting a migraine by controlling my stress levels, drinking less coffee, avoiding moving from really dark rooms to really brightly lit rooms and avoiding those annoying, flickering fluorescent bulbs. Other triggers are out of my control, however, such as big swings in the weather.
Another trick I've learned is to use the aura to my advantage. The aura, although incredibly annoying, warns me that I'm going to get a really bad headache. The gives me 15-45 minutes (usually the duration of my auras) to get some pain killers in me. I discovered the miracle of liquigel ibuprofen (very fast acting). As soon as I get my aura, I'll take a few of those puppies and I find the pain isn't nearly as bad. In general, the bigger my scotoma (i.e., the more messed up my vision gets) the worse my headache will be. If it's really bad, I'll take my liquigels and I'll go home and try to sleep it off in a dark room. This isn't always possible, but it is a sensible way of dealing with the pain. Generally, after a migraine I'll have a sore head for a day or two. Coughing, sneezing, fast turns, etc. will cause my head to pound, but it's manageable.
I know this post wasn't about epilepsy, but there is increasing evidence suggesting a link between migraine and epilepsy. Is migraine a form of seizure? Certainly, the "spreading depression" theory suggests that it is. Fortunately, however, migraines do not lead to a loss of consciousness and can be managed fairly well with drugs/lifestyle changes. Whether or not you need to take prescription drugs chronically largely depends on the frequency and severity of your migraines.
Also, there are many kinds of migraine. I've only discussed the "classic" form here. Perhaps I'll post about the others later.
Have a great day.
Kirk.
I read on and learned that I have "classic migraines", which are vascular headaches (unlike normal headaches, which tend to be caused by muscle tension in the head and neck areas). Classic migraines start (most often) with an "aura". The aura is the sensory disturbance that comes before the headache. There are different kinds of aura, but mine is a visual aura, called a "scintillating scotoma" (pictured here).
From: Nature Reviews Neuroscience 4, 386-398 (May 2003)
There are a few theories on what causes the scotoma. The first one I read about is the "vascular theory". This theory states that blood flow to the visual cortex of the brain is decreased, which causes the disruption in vision (i.e., the scotoma). After a short while (maybe 10 - 60 minutes) the blood flow is restored and vision normalizes. Not only is blood flow restored, however, but it is greatly increased. This increase in blood flow causes the stretching of blood vessels in the brain and this is what is thought to cause the headache pain. Remember, brain cells don't have pain receptors, but blood vessels do. When they stretch, they cause a lot of pain.
There is another theory on what causes the aura. It is called the "spreading depression" theory, and it seems to be the most well accepted theory now-a-days. Spreading depression is a seizure-like event that slowly spreads over the surface of the brain. It leaves neurons silent ("depressed") in its wake. This lack of activity in the neurons, when spreading depression affects the visual cortex, leads to the visual field disturbances. This spreading depression also causes the release of nitric oxide from neurons. Nitric oxide is one of the body's most potent vasodilators (something that causes blood vessels to dilate). [Aside: this is why patients with heart disease are often given a form of nitric oxide to take during an angina attack -- it opens the blood vessels and stops the angina]. The dilation of blood vessels causes the pounding headache associated with migraines.
Many of the treatments for migraine (e.g., the triptans - like sumatripan, aka Imitrex®) work by binding the serotonin receptors on the blood vessels, causing the blood vessels to constrict, therefore stopping the pain caused by vasodilation.
I have taken triptans a few times. I know that those who have frequent, extremely painful migraines like to have a stash of triptans around. However, I'm fairly lucky insofar as my migraines aren't terribly frequent (1/month, on average) and I've developed a fairly good system to live with these nasty headaches without having to buy the expensive drugs.
First off, I can lessen my chances of getting a migraine by controlling my stress levels, drinking less coffee, avoiding moving from really dark rooms to really brightly lit rooms and avoiding those annoying, flickering fluorescent bulbs. Other triggers are out of my control, however, such as big swings in the weather.
Another trick I've learned is to use the aura to my advantage. The aura, although incredibly annoying, warns me that I'm going to get a really bad headache. The gives me 15-45 minutes (usually the duration of my auras) to get some pain killers in me. I discovered the miracle of liquigel ibuprofen (very fast acting). As soon as I get my aura, I'll take a few of those puppies and I find the pain isn't nearly as bad. In general, the bigger my scotoma (i.e., the more messed up my vision gets) the worse my headache will be. If it's really bad, I'll take my liquigels and I'll go home and try to sleep it off in a dark room. This isn't always possible, but it is a sensible way of dealing with the pain. Generally, after a migraine I'll have a sore head for a day or two. Coughing, sneezing, fast turns, etc. will cause my head to pound, but it's manageable.
I know this post wasn't about epilepsy, but there is increasing evidence suggesting a link between migraine and epilepsy. Is migraine a form of seizure? Certainly, the "spreading depression" theory suggests that it is. Fortunately, however, migraines do not lead to a loss of consciousness and can be managed fairly well with drugs/lifestyle changes. Whether or not you need to take prescription drugs chronically largely depends on the frequency and severity of your migraines.
Also, there are many kinds of migraine. I've only discussed the "classic" form here. Perhaps I'll post about the others later.
Have a great day.
Kirk.
Tuesday, October 7, 2008
Parenting a Child with Epilepsy: A Journey Continued
We have been fortunate to have a guest poster-- a mother of a young boy with epilepsy, who is now on a special diet to help treat his seizures. Here is the third installment of her thread called "Parenting a Child With Epilepsy: A Journey".
Part lll
"Our son has started school. For those people who are parenting a child with epilepsy, you know how significant a change that can be. All of a sudden someone else is responsible for my child for a number of hours a day. And that person, while caring and responsible, is also in charge of many others, each of whom have needs different from my child with epilepsy. Our story is a very positive one, however. Our school has stepped up, researched, and allowed us to literally bury them in information. They listen, absorb, ask good questions and implement the strategies and therapies we suggest. Our son’s teacher is fabulous, unflappable and very capable. She treats him like all of the other children, expecting him to extend himself, maybe not in the same way as his classmates, but in a way that will promote personal growth and work toward attaining the goals we have worked together to set for him. She works in close contact with us, so we don’t worry and so we know how he is handling this new routine.
Our son has suffered a lot of negative behavioural side effects from his anticonvulsant meds: he is on two different drug therapies. We have added a third therapy this fall in the form of a Low Glycemic Index diet, or a modified Atkins diet for seizures. What this entails is lining up a diet where his calories consist of 70% fat, 20% protein and 10% carbohydrate. This was recommended by a paediatric neurologist as our son does get seizure relief from his anticonvulsants and so the Ketogenic Diet is considered too rigorous. While we work with a dietician for ideas, and advice, the diet is driven at home by the parents. We work hard to balance, calculate and coordinate to create meals that are appetizing and maintain the level of extra fat in his system. This is a difficult task, and is taken on only in the best interests of our son, to reduce his anticonvulsant medication, particularly the one linked closely to behavioural problems and suicide. The school, has also taken up this challenge, and has placed an aide with our son while he eats, in order to encourage him to eat everything he is sent, and therefore retain the 70-20-10 balance he needs. They have someone assigned to him on recess supervision to ensure he doesn’t eat food from someone else’ lunch. They have made sure that classroom celebrations no longer include food, so they don’t exclude one class member. They have lists of food no-no’s for Sam posted in the classroom, so a substitute teacher knows not even one carrot stick is okay. Mostly they ask us when they are unsure, and work hard to make sure we feel comfortable sending him and that he is schooled while he is there. We could ask for nothing more. I have spoken with parents whose children are on a diet for seizures, and they had to involve politicians to rally the school board in order to get cooperation from the school for their child’s special needs. We are so fortunate, our experience has been the opposite of that.
Our local epilepsy educator came to the school last week to give information on epilepsy and seizures, and to help the teachers in our school understand our son’s needs and the needs of other students who may have a seizure disorder. This was an optional seminar, and yet every teacher in our school came, stayed and asked good questions. I was overwhelmed by their show of support. They wanted to know our plan for seizure response, they want to be prepared to help. The woman who came to give the seminar offered to come back as often as we feel is necessary and will be returning later in the fall to speak to both Kindergarten classrooms about seizures and epilepsy at the children’s level. Our teacher is specifically bringing both classes to school that day (they go every other day in rural Saskatchewan) for this specific purpose, which makes a lot of extra work for her.
So as we enter into this season of taking stock, and thankfulness (all celebrated with food of course) we are most grateful for where we live, and the people that make up our school system. We could be in no better place."
Monday, October 6, 2008
Expressions of Courage
Art is a great medium for expression. Sometimes it allows us to express things in a way that we otherwise couldn't/wouldn't.
I just found out about a great site called Expressions of Courage, where individuals living with epilepsy can submit their artwork. Have a look!
I hope you are all doing well.
Kirk.
I just found out about a great site called Expressions of Courage, where individuals living with epilepsy can submit their artwork. Have a look!
I hope you are all doing well.
Kirk.
Thursday, September 25, 2008
Are Drug Companies Evil?
A bit of a loaded question, I realize. My short answer is: "no". For many reasons (some valid, others invalid), people love to hate drug companies. As in any business, a few companies have done bad things to taint the image of their sector. We are seeing this now in the USA with the financial sector (e.g., Fannie May, Freddie Mac, etc.). We have all heard the horror stories of the drug company that sold unsafe drugs to third world countries that wouldn't pass health regulations in Canada/USA. But, let's not throw the baby out with the bath water.
Do we need drugs?
Obviously, the answer is "yes", unless you hold some twisted, Darwinian "only the healthy should survive" attitude. Otherwise, we've all been sick, and we've all benefitted from pharmaceuticals. I think we can all agree that some drugs are essential. If you are going into cardiac arrest, you don't want someone to prepare you an herbal tea. You want to be taken to a hospital to receive a drug that will restore the function of your heart and allow you to live long enough to make wiser lifestyle choices. The same is true with epilepsy. If you are in status epilepticus then you want to receive a drug that will stop your seizure as soon as possible. So, drugs are important and we need them.
What are some of the problems with drug companies?
One of the major problems behind drug companies is that they are held accountable to their shareholders (i.e., they need to make a profit). The average drug costs almost $1 billion US dollars to develop. This means roughly $1,000,000,000 of expense from the time you have the idea of developing a drug until the time that drug is available at your local pharmacy. Much of this expense occurs during drug testing (i.e., determining the safety and effectiveness of that drug). That is a LOT of money.
To protect their investment/intellectual property, drug companies patent their drugs for about 20 years. This allows them to sell that drug exclusively to try and earn back their investment. This is why new drugs are so expensive. Once the patent has expired, then other companies can make "generic" versions of the drug and sell it for much cheaper as they won't have spent the hundreds of thousands on research and development. So, the company has 20 years to make back their billion bucks. Another complication is that many of the drugs that a company tries to develop end up failing at some point along the testing process. They may prove toxic in animal studies. They may prove toxic in clinical trials. They may lack effectiveness in clinical trials. They may even prove toxic after they have passed all trials and the drug "makes it to market" (i.e., it's available at your pharmacy). This recently happened to Merck's COX 2 inhibitor, Vioxx®, which generated heart problems in some patients. This means that a company can spend hundreds of thousands of dollars and then be forced to abandon the drug. Yikes!
This puts tremendous financial pressure on drug companies. As a result, many drug companies have stopped/slowed the development of new, novel drugs needed in the treatment of serious, life-threatening diseases. Instead, most drug companies tend to focus on modifying existing drugs to make them less toxic. Also, because they need to worry about the "bottom line", many drug companies have focused simply on developing drugs that are used very commonly for non-life-threatening health problems-- which in my opinion, are the drugs we need the least. These are drugs like the proton pump inhibitors used to treat acid reflux or drugs used to treat indigestion. These are huge money-makers as they are so commonly used. They are drugs we take after a meal without even thinking about it. Although these drugs may be important to those who suffer from acid reflux, they rank low in the overall hierarchy as compared to the new drugs that we need to treat aggressive forms of cancer, for example.
So, drug companies have the ability to develop new drugs that are required for serious, chronic diseases, but they tend to be focusing on drugs that will bring them the most profit. This is understandable from an economic perspective, but less understandable from the perspective of someone who has 10 seizures a day and can't find a drug that helps.
What are possible solutions?
One of my more radical ideas is that the Government should be in charge of all drug development (instead of corporations). This would mean that there are no shareholders, in the formal sense. Of course, the public would then have to fund the drug development process, but it would eliminate the need to make profit. The Government would simply seek to regain the cost of the drug development, not the extra bit to put profit into the pockets of shareholders and pay CEOs huge salaries. Obvious disadvantages to this would be that drug development would occur much more slowly and there would be less diversity in the drugs that would be developed. This is just a way to develop new, important drugs for chronic, serious diseases that lack adequate treatment, without financially strapping those that need them.
The current system uses Insurance Companies to help buffer the cost of drugs, so that a $100 prescription might only cost you $10-20, depending on your plan. Of course, if you can't afford a plan/have no plan, then you are faced with the horrible choice of financial health vs. physical health. Something that is unimaginable to me, but something that many face everyday in the USA. Here in Canada, we are fortunate to have a National Health Care Plan that ensures that you will get many drugs for free, providing the drug in question is covered under the Drug Registry. Unfortunately, not all drugs are covered, which means you could end up having to pay for it under your insurance plan, or even out-of-pocket.
What about nutriceutical companies? A slight tangent"
Why don't the nutriceutical companies face the same degree of public distaste as drug companies? They are in the same business of selling drugs- just prepared and marketed in their galenical form. Let's be honest-- if you are taking something (e.g., a tea, a pill, a plant, a vitamin, etc.) that works to improve your health, then you are taking a drug (unless it is a placebo). "Vitamin C" is ascorbic acid. The active ingredient in white willow bark is acetylsalicylic acid (the pure form is sold as Aspirin®). The active ingredient, which is thought to yield mild antidepressant effects, in St.John's Wort is the chemical hyperforin. All this to say, if it works and isn't a placebo, then it is a chemical. The rest is a matter of marketing and a case of the wolf in sheep's clothing. What's scary, is that nutriceutical companies aren't (yet) as tightly regulated as the drug companies--> so they are allowed to sell chemicals without all the rules/regulations that drug companies face. When you buy 200mg of ibuprofen (e.g., Advil®), then it is 200mg. When you buy white willow bark, it's unclear and unregulated as to how much of the active ingredient (i.e., acetylsalicylic acid) is present. This is a problem.
Concluding thoughts
Well, the system isn't perfect. Not all drug companies are perfect either. Unfortunately, the system is set up to prioritize profit over "let's make drugs for diseases where they are most needed to save lives". That's what spawned my crazy idea of having Government in charge of drug development, but that has obvious down-sides too.
In the end, we need drugs. They are important in our health, and for many, they are required on a daily basis to keep us alive (e.g., those living with cystic fibrosis, cancer, heart disease, etc.). So, it's good that we have drug companies making these drugs for us.
Nutriceutical companies are no different from drug companies. What's scarier than that, is that they aren't regulated the same way that drug companies are -- and they should be! They also prioritize the bottom line, profit. That's why you are paying $25 for your bottle of fish oil.
I hope this has been helpful. I know some people feel very strongly about herbs/nutriceuticals being healthier than drugs. That said, this isn't a religion or belief system. These products can be studied by the cold, objective eye of science, so we aught to have a more objective point of view on them. Any chemical you take that changes the way your body works, be it a drug, a "nutriceutical", should be treated the same (i.e., read up on it, study whether it will interact with any drugs you are currently taking, tell your doctor that you are taking it, etc.) as it also has the potential to help you as well as harm you. Even foods can do this. Garlic, for instance, is full of sulphides (diallyl sulphide, for example), which act to inhibit drug-metabolizing enzymes in our liver.
Food for thought.
Kirk.
Do we need drugs?
Obviously, the answer is "yes", unless you hold some twisted, Darwinian "only the healthy should survive" attitude. Otherwise, we've all been sick, and we've all benefitted from pharmaceuticals. I think we can all agree that some drugs are essential. If you are going into cardiac arrest, you don't want someone to prepare you an herbal tea. You want to be taken to a hospital to receive a drug that will restore the function of your heart and allow you to live long enough to make wiser lifestyle choices. The same is true with epilepsy. If you are in status epilepticus then you want to receive a drug that will stop your seizure as soon as possible. So, drugs are important and we need them.
What are some of the problems with drug companies?
One of the major problems behind drug companies is that they are held accountable to their shareholders (i.e., they need to make a profit). The average drug costs almost $1 billion US dollars to develop. This means roughly $1,000,000,000 of expense from the time you have the idea of developing a drug until the time that drug is available at your local pharmacy. Much of this expense occurs during drug testing (i.e., determining the safety and effectiveness of that drug). That is a LOT of money.
To protect their investment/intellectual property, drug companies patent their drugs for about 20 years. This allows them to sell that drug exclusively to try and earn back their investment. This is why new drugs are so expensive. Once the patent has expired, then other companies can make "generic" versions of the drug and sell it for much cheaper as they won't have spent the hundreds of thousands on research and development. So, the company has 20 years to make back their billion bucks. Another complication is that many of the drugs that a company tries to develop end up failing at some point along the testing process. They may prove toxic in animal studies. They may prove toxic in clinical trials. They may lack effectiveness in clinical trials. They may even prove toxic after they have passed all trials and the drug "makes it to market" (i.e., it's available at your pharmacy). This recently happened to Merck's COX 2 inhibitor, Vioxx®, which generated heart problems in some patients. This means that a company can spend hundreds of thousands of dollars and then be forced to abandon the drug. Yikes!
This puts tremendous financial pressure on drug companies. As a result, many drug companies have stopped/slowed the development of new, novel drugs needed in the treatment of serious, life-threatening diseases. Instead, most drug companies tend to focus on modifying existing drugs to make them less toxic. Also, because they need to worry about the "bottom line", many drug companies have focused simply on developing drugs that are used very commonly for non-life-threatening health problems-- which in my opinion, are the drugs we need the least. These are drugs like the proton pump inhibitors used to treat acid reflux or drugs used to treat indigestion. These are huge money-makers as they are so commonly used. They are drugs we take after a meal without even thinking about it. Although these drugs may be important to those who suffer from acid reflux, they rank low in the overall hierarchy as compared to the new drugs that we need to treat aggressive forms of cancer, for example.
So, drug companies have the ability to develop new drugs that are required for serious, chronic diseases, but they tend to be focusing on drugs that will bring them the most profit. This is understandable from an economic perspective, but less understandable from the perspective of someone who has 10 seizures a day and can't find a drug that helps.
What are possible solutions?
One of my more radical ideas is that the Government should be in charge of all drug development (instead of corporations). This would mean that there are no shareholders, in the formal sense. Of course, the public would then have to fund the drug development process, but it would eliminate the need to make profit. The Government would simply seek to regain the cost of the drug development, not the extra bit to put profit into the pockets of shareholders and pay CEOs huge salaries. Obvious disadvantages to this would be that drug development would occur much more slowly and there would be less diversity in the drugs that would be developed. This is just a way to develop new, important drugs for chronic, serious diseases that lack adequate treatment, without financially strapping those that need them.
The current system uses Insurance Companies to help buffer the cost of drugs, so that a $100 prescription might only cost you $10-20, depending on your plan. Of course, if you can't afford a plan/have no plan, then you are faced with the horrible choice of financial health vs. physical health. Something that is unimaginable to me, but something that many face everyday in the USA. Here in Canada, we are fortunate to have a National Health Care Plan that ensures that you will get many drugs for free, providing the drug in question is covered under the Drug Registry. Unfortunately, not all drugs are covered, which means you could end up having to pay for it under your insurance plan, or even out-of-pocket.
What about nutriceutical companies? A slight tangent"
Why don't the nutriceutical companies face the same degree of public distaste as drug companies? They are in the same business of selling drugs- just prepared and marketed in their galenical form. Let's be honest-- if you are taking something (e.g., a tea, a pill, a plant, a vitamin, etc.) that works to improve your health, then you are taking a drug (unless it is a placebo). "Vitamin C" is ascorbic acid. The active ingredient in white willow bark is acetylsalicylic acid (the pure form is sold as Aspirin®). The active ingredient, which is thought to yield mild antidepressant effects, in St.John's Wort is the chemical hyperforin. All this to say, if it works and isn't a placebo, then it is a chemical. The rest is a matter of marketing and a case of the wolf in sheep's clothing. What's scary, is that nutriceutical companies aren't (yet) as tightly regulated as the drug companies--> so they are allowed to sell chemicals without all the rules/regulations that drug companies face. When you buy 200mg of ibuprofen (e.g., Advil®), then it is 200mg. When you buy white willow bark, it's unclear and unregulated as to how much of the active ingredient (i.e., acetylsalicylic acid) is present. This is a problem.
Concluding thoughts
Well, the system isn't perfect. Not all drug companies are perfect either. Unfortunately, the system is set up to prioritize profit over "let's make drugs for diseases where they are most needed to save lives". That's what spawned my crazy idea of having Government in charge of drug development, but that has obvious down-sides too.
In the end, we need drugs. They are important in our health, and for many, they are required on a daily basis to keep us alive (e.g., those living with cystic fibrosis, cancer, heart disease, etc.). So, it's good that we have drug companies making these drugs for us.
Nutriceutical companies are no different from drug companies. What's scarier than that, is that they aren't regulated the same way that drug companies are -- and they should be! They also prioritize the bottom line, profit. That's why you are paying $25 for your bottle of fish oil.
I hope this has been helpful. I know some people feel very strongly about herbs/nutriceuticals being healthier than drugs. That said, this isn't a religion or belief system. These products can be studied by the cold, objective eye of science, so we aught to have a more objective point of view on them. Any chemical you take that changes the way your body works, be it a drug, a "nutriceutical", should be treated the same (i.e., read up on it, study whether it will interact with any drugs you are currently taking, tell your doctor that you are taking it, etc.) as it also has the potential to help you as well as harm you. Even foods can do this. Garlic, for instance, is full of sulphides (diallyl sulphide, for example), which act to inhibit drug-metabolizing enzymes in our liver.
Food for thought.
Kirk.
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