Tuesday, May 22, 2007

News that makes me wonder

I am feeling slightly better today. Over the weekend I figured out that my new ADD meds are not quite there, I think because of my "bad gut" as my Dr. calls it. All of the stuff I take depends on digestion, and between the lactose intolerance and the bouts of food poisoning I've suffered, I have some problems with that. Now I'm thinking that's another reason why the stuff doesn't always work well, or lasts too long, or not long enough.

Like estrogen & progesterone? Orally, I get a much different response than with creams or patches, like a measurable difference by blood tests. So I'm sure it isn't that different with other things. Anyway, onward and upward, off to phone the Dr. again....

Sooo, news that has made me wonder today. This story is heartbreaking, because it was so preventable. The kid had neuroblastoma, and there are a whole bunch of studies showing a dramatic drop in incidence after folic acid was introduced to the food supply in North America ten years ago. Perfect link? No...but still pretty damn compelling. I still remember going to a lecture at U of T with an embryologist from the UK who talked about the damage from Vitamin A and the benefits from folic acid and other B vitamins. He had made it his lifes work to tell the world and convince governments & industry to fix it. He was so inspiring that I have never forgotten him; his anguish, his tears of frustration at bureaucrats who refused to listen to the evidence he presented. Health Canada committees are STILL debating adding it to more flour based foods, even as the evidence grows and the UK has just decided to do it. Apparently all these governments are worried that the elderly will have B12 deficiencies as a result, even though simple annual blood tests could take care of that issue. Our miscarried babies don't have those options, and half of all pregnancies are unplanned, and even among the planned ones, many of us are deficient in vitamins.

But hey, we all know that governments don't give a damn about the morality of saving lives, even adult ones, right? It's all about the money. And lest you all think I'm damning only the UK here, I'm not, governments all around the world use actuarial equations, and HMOs and US health insurance companies do everything on this basis.

How much is your life worth to you? To your husband? You parents? Your kids? To your workplace?

The NY Times has a story about the Missing Angels campaign here. (Thanks Maggie!) The YouTube video they made is right here, makes me cry every time. The US is pretty far ahead of us. Right now in Ontario I can't get a stillbirth certificate at all, totally illegal under the Vital Statistics Act, never mind a separate birth and death certificate. More work to do I guess...

And the new Michael Moore movie Sicko? There's an article here that mentions the flack he gets from Canadian reporters about how he dared to say our system was better than the US. Yep, leave to a Canadian to get pissed over a compliment. Sometimes I think we aren't just self-effacing, we really are our worst critics!

For a quick and dirty explanation of why we have waitlists for some procedures, we are geographically the second largest nation on earth, but have 1/10th the US population. (This one fact is a huge study area in Canadian political science btw. Affects everything...) Our largest cities are smaller than small US ones, so travel costs, and increased provider costs are some of the biggest barriers. For example, a neighbour of ours came down with an incredibly dangerous mystery infection a few years back. We live within a 20 minute ambulance ride of several large hospitals that can handle this type of thing. He came into the ER, was seen right away, had weeks in intensive care, MRIs and various scans, and an entire team of Doctors assigned to his care until he recovered, home care included. All free, no waits, no issues.

I personally have not had to wait for procedures or tests because again, I'm in an area with high density, lots of experienced Docs, and I'm pretty proactive about my health. (I still run into problems, as I have discussed many times, but I am not a "classic" case, so I'm unwilling to blame public health care for that part...complicated patients like me aren't easy anywhere!)

But for people who live outside the core? In the suburbs, or in far rural areas? Yes, they have waits...sometimes due to the system, sometimes due to not getting regular screening checks (note my fear of the c-word in a previous post), sometimes due to their own lack of advocacy. There is a small city-suburb east of me, that does not have even one neurologist at their hospital. Horrifying, eh? Except that what they call a city, would be termed a very small town in the US and no neurologist wants to bother going there because there will never be enough patients. Even if they wanted to practice part-time, their skills would suffer due to lack of use. And the people of the suburb? They are appalled that they have to drive an hour to the big city to see a neurologist, unwilling to go on cancellation lists because they would have to miss work, and if they have a serious medical problem that means regular visits to stay alive? Totally unwilling to move nearer to the hospital or doctor that could save them.

Instead it's all the system's fault...

I've met patients who live in tiny little northern towns, (like pop. < 5,000) and have children with life-threatening chronic illnesses, who insist that a pediatrician and a team of physiotherapists and health care providers should exist in their tiny little town and scream that they are being discriminated against because these services only exist in the big city, and I'm sorry but I just can't believe it would be so different in the US. I hear about US bloggers who have to go to bigger cities for treatment all the time, about people who change jobs or move to get better health care and I can't help but wonder if we Canadians have just not heard enough about that?

I hear about older people who don't have answering machines, and are shocked when when their home care plans fall apart, about people who don't plan ahead to get their prescription meds renewed and fume because they run out. Or my fave, the ones who refuse to follow Doctors advice about taking their meds or lifestyle changes and don't magically get better. How is that public health care's fault?

I don't love Docs, I know I personally screw up my own health sometimes, and health care systems are not so good at it either, many things are totally out of our hands like genes, or our health as children and before birth, but holy mackeral, can I just say that publicly funded systems are pretty damn good, considering what they have to work with here?

Ranting over, I'm glad I've got that off my chest. Thanks!


  1. I think I'm taking vitamin A in my multivitamin. I'll stop taking them. Off to google vitamin A dangers!

  2. Vitamin A palmitate is dangerous, but only at 10,000 units a day. Beta Carotene is safe as vitamin A.

    Problem is that it's added in to so many foods, and it's stored in fat, you could have a lower level in your vitamin and still skate close to the danger zone.

    Why aren't you taking prenatals?

  3. I just wanted to leave a brief comment about the little boy who passed away from Neuroblastoma. You made a comment stating that it was preventable...if the mother had just taken her prenatal vitamins...
    I just wanted to say that my daughter had the same cancer and I took my prenatal vitamins while pregnant with her. She still ended up with the cancer. I am also apart of a support group for kids with Neuroblastoma and we have had many discussions about those studies you sited. Those studies aren't always accurate and taking your prenatals definitely hasn't affected these kids getting Neuroblastoma or not.

    Just my 2 cents... =) Sorry, I just had to comment... please don't take it the wrong way. I just see it from a different angle than someone from the outside looking in......

  4. NB Warrior,

    I'm so sorry, I DON'T mean that the mother or you were responsible in that way. It's just that governments drag drag drag their feet about implementing this stuff, and this is, (according to my medical friends) the best preventative method we have at this point for all neural tube birth defects as well as cancer. For example, I took my prenatals faithfully and still had a child with hydrocephalus, (see my sidebar if you want to know more)
    So I know it can happen, and it feels awful, truly.

    I don't blame individual women at all. I just want governments to do more studies and add it to the food supply, because there is a lot of evidence it can help prevent many of the problems we struggle with. (I know it's not conclusive, as I said.)

    I'm so sorry if this post sounded like I was blaming you. I really wasn't.

  5. NB Warrior,
    Please email me, there isn't one on your profile, and I didn't want to leave a comment on your family blog.

  6. Hi - curious, why would an increase in folic acid in the food supply lead to B-12 deficiencies in older people? Or did I misread you?

    Glad you could use the Times link!

  7. Magpie,

    The quote in the article is this, "Critics of compulsory fortification say it could present difficulties for bakers, push up the price of bread and quash consumer choice.
    They also say folic acid may hide vitamin B12 deficiencies among the elderly."

    I don't think it's a huge problem, but apparently it does happen.

    Then again, those poor bakers...so many problems. *eyeroll*

  8. Aurelia,

    Sorry for the lamest comment ever... I've been on blogging hiatus for a bit, but finally seem to be returning. While I was gone Erin (Vegetarian Mom) password protected and I can't figure out what her email address is... do you possibly know it? Feel free to email me (survivingmyloss@gmail.com) if you have it.


  9. just a breif comment to say that I am deeply offending by this. I realize it is your blog and you can say whatever you wish.

    my daugher has neuroblastoma and for you to imply to others that it could have been prevented is not only incorrect but hurtful. As a mother who carried my daughter inside for 9 months I already blame myself for the cancer she was dx with at only 7 months...but then for someone to say something like this is hurtful to me.

    free speech is free speech, but this does break my heart. I know that some will read your blog and take it as gospel and think that all neuroblastoma (NB) can be prevented (which at this point it can not) but will some how now start to blame the mother for their childs cancer...that is too bad, I think it will set the entire childhood cancer fight behind many years, let alone the NB fight.


  10. You are wrong about the drop in Neuroblastoma because of the introduction of Folic acid. I have done a fair amount of research since my son is a survivor of a 3 year battle with neuroblasoma. I have s found no studies showing any decrease in the occurance of Neuroblastoma since public health record have been keep. All the reaserch shows it flat on an occurence per thousand basis. If you have a study in mind please direct me to it. Other wise please don't confuse Neuroblastoma parents with unsubstantiated and distracting claims.

  11. Dear Brenda,

    I am sorry that this is how you have taken my post. It was not my intention.
    As a grieving mother I have blamed myself for my own child's deaths, especially the ones that might have, possibly have been prevented if only...the Doctors had done their jobs. It wasn't my fault, and it wasn't yours.
    Saying something has compelling evidence for a cause, doesn't mean blaming the parents.
    They are two separate things.
    For me, I deal with my issues by trying to point out the strategies, that exist to try to prevent more cases of childhood cancer and more neural tube defects like hydrocephalus. As a grieving mother I want more of our children to live.
    I am also quite stunned that you think my little blog could set the fight against childhood cancer back by years.
    As every single thing I have ever done in my professional and political career has shown, I advocate for children. I do not blame them or their parents for their illnesses.
    I do however blame media and politicians who want to use sick children for photo ops, but go back into government committee meetings and vote to deny funding for research, and tell me to my face when I lobby them over drinks, that they "think children don't matter".

    Yes, they say it to my face.

    I wish you would sign your name, and I wish you would provide an email address.
    Since you didn't, here's hoping these links work in comments.


    You can also find more evidence at Cancer Care Ontario, and Health Canada.

    Population studies are not my favourite either, even large well-done ones like these, which is why I like to stick with pathologists and embryologists. And in lectures and interviews and lobbying meetings, they all agree that folic acid is incredibly compelling evidence as a prevention method of childhood cancer.

    Which is precisely what I said.

  12. I get annoyed at people thinking that all hospitals should have all facilities in the UK too. Having worked in medical research for years and having a mum who worked for the NHS for about 40 years first as a nurse and then a manager I think I understand a bit.

    The truth is specialists need to see enough patients to have the best skills to deal with them and this is only likely to happen in big cities.

    I remember some of my colleagues who are UK specialist breast surgeons being horrified at a conference by a US surgeon who saw a few breast cases each year being called a specialist. In the UK a minimum number of annual cases is a requirement for this and it only happens in large specialist centres in cities.

    I now live in Denmark which also has a socialised health system with some good and bad points but I still think it's the best way to run things.

    oops sorry that was a long one (rant over).

  13. Gosh Aurelia, I don't know how your words were so misunderstood by some of these commenters. I understood with perfect clarity tht you were (A) NOT blaming mother's for their children's health (B) Not claiming that folic acid is a cure (C) Highlighting the LINK between folic acid and reduction in cancer.

    However, I do know, from first-hand experience that grief can make us particularly sensitive to any perceived criticism regarding our children's health. My heart absolutely goes out to the women who commented here, but I honestly do not think you said anything offensive or absolute.

  14. Clin Pharmacol Ther. 2007 May;81(5):685-91. Epub 2007 Feb 21

    A good study.

  15. I do understand what you were trying to say - but I was trying to point out that not everyone will have an educated background on the issue and take what you said as "take folic acid and be NB free", and I think THAT will set back the cause. Do you know what I mean?

    I totally respect your right to write and feel anyway that you do. And I must admit that I have not read any previous posts, just this one.

    Since effected by NB I have made it my misson to make a difference - in anyway that I can. And, I guess I just don't want people to read what was said as "fact", too many people in this world take information they hear as gospel without doing their own research.

    best of luck to you.

  16. Thanks Charli Ann,

    I truly do not believe my googles will ever rank me that high, and frankly if the government did it's job, it wouldn't matter what the internet says.

    I do believe the public will still find something to blame women for even if our children were perfectly healthy simply because they always do. Really, when is the last time we all discussed a father's guilt? Men don't do that.

    Anyway, I have an idea that might help...darn I wish you had an email showing...oh well hopefully you'll come back and see this.

    There will be a lot of PR about childhood cancer in the press in the next few weeks because of this story and the Stanley Cup. I think the team should do more than look somber, and since Prime Minister Stephen Harper is a huge hockey fan and they WILL get to speak to him privately---maybe your support group can feed some lines to the team to say to the press or the PM?

    Like, "We hope the public will learn more about this issue and discover how MUCH could be done if more money was devoted to research on prevention and treatment," while pointedly looking at the PM. The Conservatives just announced a huge amount of medical research money and if asked, he likely wouldn't say no. But someone has to ask, and I'm sure the family are too upset right now to do it. And remember, we can do research here in Canada that you can't in the US.
    Awareness is great, but budget money is better. I hope your group gets their chance.

  17. i just want to add my two cents to your rant.

    i'm sorry that not every specialist, treatment, or procedure is available in every small town across the us and canada, but does anyone have any idea how much everything costs? i'm sorry to to bring money into the conversation, but specialists, treatments, and technology cost money. since people often only pay premiums or copays, most don't know how much medicine costs. did you know that an MRI machine needs 17 programming languages to work (and that's just the software end). do you know how much a mammogram machine costs? it would not be financially feasible to have every treatment, specialist and technology within a 20 mile radius of everyone.


  18. Hello - delurking at the request of your last post. Not sure how I found you (would have to have been via an infertility blog) - but stayed for the rants on healthcare. I have to say I agree with you on the smal town stuff. here in the UK there are always endless campaigns to save hopeless cottage hospitals which are no use at all if you have a serious life threatenening disease. The other thing that drives me nuts is the missed appointments and the moans about prescriptions costing £6. Oh and the endless "news" stories with no understanding of science and the half truths peddled on IF boards. But anyway maybe you can tell why I like the rants...

  19. good idea, I didn't realize the publicity that would be going on there I am from the US.

    Who would we need to contact. I would list myemail address here - but don't want a millon emails!!

    do you have myspace? you can find me at www.myspace.com/johndeerefamily - if not, I will post my email at a later time, I will check later tonight.

  20. I don't have a myspace, I can barely handle one blog, hehe. But my email is on my blogger ID, or you can just email me at aurelia dot cotta @ gmail dot com

    I keep this email as my pseudonym email just for the blog, and if it ever gets too spammy, I can switch it.

    I'm wiped and going to sleep now. Too tired to think. Basically, if NB has a charity group or lobby group with a canadian branch we could talk to them. They could phone reporters...Or the US group could phone reporters covering the US Stanley Cup team.