Last week I attended a talk concerning the development of Africa; the speaker was a dynamic, young fellow who travels the world to give his audience a first hand look at the real Africa. As he speaks there is a photo show playing on the screen behind him- a diverse range of photos from Africa is showing- everything from super highways and luxury skyscrapers in Cote D'Ivoire to a mother clinging onto the malnourished body of her infant child in a village just a few miles away. "We don't need foreign aid" the speaker argues, "what we need is to be self- sufficient....don't give us bags of rice- teach the people how to grow their own rice." Then he makes reference to a hot new book that is on the market:
Design For The Other 90%: The title is self- explanatory, 6.5 billion people (90% of the world's population) do not have access to things we take for granted; food, shelter, clean drinking water etc. The book takes a look at the new wave of: researchers, engineers, students, social entrepreneurs- a group of people wanting to offer useful products to the masses (what you see on the cover is a really cool purification straw!)
That got me thinking: CMLKid, what percentage of the world's population has access to TKI's? I did a quick estimate......and I'm willing to guess 90% of CML'ers don't have access to sufficient drugs.
That lead me to do some research- I began to ask myself a systematic series of questions:
What percentage of the world's population has access to the internet? 26%.
Who are the people posting on patient message boards, CML chat group etc.? For the most part they are Chronic Phase CML patients from Canada, U.S.A, England, Japan, Australia, Singapore, France, Spain etc.
Only 2 questions in and a disturbing thought came to mind........the people reading my blog, the good folks posting on the CML message boards, patients reaching out to one and other for advice and perhaps left over drugs....what do they have in common? All people from developed countries, literate and internet savvy. Not a bad combination, definitely not a part of the other 90%, right?
Hmmmm........you'd think otherwise if you frequented the CML chat groups and message boards....these are the messages my fellow patients are posting:
" I just found out today that insurance Coverage for my sons Gleevec has ceased. Walgreen's tells me the cost for 6ooMG of Gleevec, 30 day supply is now $8950. In my opinion this is immoral. When did it get to be this high???? I have applied to Novartis for assistance."
"I can no longer afford my Sprycel its 4554.86 per month because I work on and off per hour when I can I anyone knows how I can get assistance with getting this med I am starting to have headaches its been 13 days without."
"Hey everyone.there is a woman that is in need of Gleevec and is not able to get it from her insurance co. Does anyone else have any left over? I would really like to help her. Please post on my wall if I can help. Thank you."
Yep! This is the upper- echelon of the CML world. These are the people with food, shelter and clean drinking water - they even have computers! Yet they (we- all of us!) are stuck in a system where the value of a drug is not measured by how many lives are saved but rather by how well it performs on the NYSE.
Houston, we have a problem?
Hold on, I'm still calculating.......
World Population: 6,692,030,277
Incidence of CML: 1 per 100,000
Approx. # of CML patients internationally: 66,920
I mean the capacity of Montreal's Olympic Stadium is 66,308......we can practically fit the world's entire CML population in a defunct Canadian baseball stadium, really!?!?! I'm sure we can find a solution for the entire 100%.
In other news: I had blood work done today (results pending) and Interferon this Friday!
Hey Kid,
ReplyDeletePretty interesting stats. Now it would be even more interesting if you post the sales related to the drugs.....
Doesn't it feel better knowing that we are being so proactive about this disease, taking these combo's that might be actually going after the cause of CML?
Check out this link:
INTERFERON WAKES UP QUIESCENT CELLS
Very interesting thoughts. We first worlders are certainly luckier than most, despite our "chronic conditions" which include fighting the drug access battle!!! While I understand there aren't that many of us and the drug companies need to recupe their R&D expenditures, there MUST be a better way to distribute these meds to those that need them.
ReplyDeleteSadly, many of the 90% probably don't even know what they are dying of, given the expensive, specialized diagnostic tests needed to confirm a CML diagnosis and monitor it.... much like other chronic diseases in the world, such as Type 1 diabetes, which is such a "household" illness in our developed world.
Thanks for taking on the bigger picture in your blod today - interesting to put all of our experiences in perspective.
Hey Kid,
ReplyDeleteInteresting stuff. Though I have always been vaguely aware of the huge discrepencies on the planet, somehow my dx of CML made me even more accutely aware of the sheer scope of it all. At ome point while being treated with IFN, I became overwhelmed by the notion that I even had the opportunity to be treated which struck me as grossly unfair...to the point to barely being able to treat myself. A wise friend who had travelled to India and seen so much encouraged me by consider it my duty to treat myself with whatever I was lucky enough o have access to. Over time I was able to accept that duty. But the feeling is still everpresent and has made me incredibly grateful for the abundance in my life. I no longer take that abundance for granted. That has manifested itself in to important ways. I have become happier within and with all that is around me. And I do not feel the same drive to acquire for the sake of acquisition. The result is a happier more balanced me. An outcome I could never have predicted when dx'd with this disease.
I am not any closer to understanding the 'whys' of the incredible inequalities of this life but I am now able to accept the things I cannot change, to make an effort to chagne the things I can and increasingly I am aware of the difference in a profound way. My journey has not been straight forward nor have my treatments or responses but I am so deeply grateful for it.
Looking at your math, I wonder if I can add further, using 2001 as a base year given the introduction of IM.
Given the incidence is an annual incidence, then the 66,920 grows yearly. We then need to establish an estimate on the number of Progression Free Survival patients: Let's use a population base of 1,000,000,000,000 as total"first worlders" (high # for us but we'll us it), so with the incidence of CML at 1:100,000, there are 10,000 CML first worlders
dx'd every year- the "rest of the worlders" CMLers have low to nil access to any treatment. Now: each year, let's say 95% of the CML first worlders have PFS, we are then accumulating 9,500 new first world CMLers to the total every year since 2001: therefore there are 85,500 of us (and counting) at this point (9 years since IM x 9,500). If the average cost to treat with TKI's is $60,000 per year, we are generating over $5B in sales of TKI's. Meanwhile, over that same timeframe, the other 76,920 patients dx'd yearly in the rest of the world die, yearly. That's 692,280 CMLer's who never had a chance. Adn what's worse is that for most of them, CML is not there largest problem. Let me know if you think my calculation are off. All of this tells me that life is not fair. Nothing about life is about fair. But I do believe it is our duty as humans to strive to be kind and fair. I am one lucky human and I strive to be kind and fair.
I hope that your counts are good and you can inject your next dose. Remember that you are the coach who makes the calls, your trial doc is now the starting quarterback and your local doc is the back up QB. Doc's don't like to be back up QB's so keep that in mind but don't let it derail you. I know cuz I've "been there, done that".
Take care kid and keep on keepin on.
Kid,
ReplyDeleteI am one of those first worlder's and I do have trouble getting the cost of my drugs covered. I know the Canadian system is a major bonus compared to the rest of the world but I do wish we had a national plan for life saving drugs. I know it's being worked on and for that I am happy but it seems to be stuck in the pipeline of the federal government. I wonder how many of us there are in Canada? When you add in all disease types needing coverage, what do we number? Certainly, the feds aren't going to be motivated by CMLers alone. There are too few of us though we are a significant expense due to the cost for the TKI's and our growing survival rates.. We need to become a more homogeneous group of patients of all stripes banding together and joining with the provincial health ministers who are at the table trying to get this thing done. (Except of course for Quebec, who is not at the table as they don't want to be a part of any national plan... Ugh).
Thanks for your thoughts Kid. And best to you.
Ok Kid, Upon furhter reflection I relize I have not factored in the average life expectancy of an untreated CML patient in my math above. Still more or less works out for any given year I think....
ReplyDeleteBased on the math provided here, more people continue to die each year than are actually saved with the drugs. We have clearly made a decision to help only the people in the "first world".....
ReplyDeleteHowever, also consider that in the US there are approximately 500 CML related deaths each year, that is about 50 here in Canada.
3 - 5 year survival rate if the CML is not treated....That doesn't really change the math provided above. The number is still incredibly high...
I have had CML for 5+ yrs and been on Gleevec 800mg the whole time this has been and still is a great medicine...
ReplyDelete