Last week after I posted about demanding public funding for IVF, I exchanged a series of e-mails with Janet, a regular blog reader from elsewhere in Ontario. I’m posting chunks of our conversation here, with Janet’s permission, because while I disagree with her, I think she raises some interesting points worth debating and I’d be interested in your opinion, too. A lot of you are familiar with the state of reproductive technology in Canada, and a lot of you are not. I’d love to hear from anyone who has a thought to contribute.
Janet’s original e-mail (which, rest assured, was very polite, respectful and full of compliments about my writing style) and reply to my response have been edited together here:
I simply don’t think taxpayers should be paying for these treatments at this point in time, and here’s why:
I am the parent of a child with a developmental disorder, and along with that comes many issues, not the least of which are long waiting lists (1-3 years, no joke) for services like speech therapy. There are wonderful services out there, but they are expensive and right now, unfortunately, are”only for the rich” (to quote the link on your post today).
I do think more potential parents need to become aware of the risks that go along with multiple birth pregnancies that are often a result of IVF. And I know that this education is not happening. And if it is, not effectively so.
Also, in our province (I also live in Ontario), autism funding is cut off at the age of six (as if these children will somehow have no need of services after six). One of my friends has to pay $7,000 PER MONTH out of her own pocket for her daughter’s treatment, simply to ensure her child will be able to communicate with others, never mind function in society. None of this is covered.
As a parent, I really do realize that the emotional side to this issue cannot be ignored. But by asking for government and taxpayer involvement (and suggesting that a potential under-population propblem could be resolved through IVF), the issue is now open for practical debate, and there are some very practical issues involved.
The other issue, which I think is a real hot button, is one of personal responsibility. As a 37-year old woman (and not in my ideal age range for reproduction without inherent risk) I’m not sure that taxpayers should pay for my fertility treatments because I’ve decided to wait until my natural fertility has declined significantly to address my reproductive desires (N.B. I’m talking ONLY about age-related infertility here).
I have been thinking about this a lot lately, and I really believe that in this kind of a situation, I should be paying for fertility treatment out of my own pocket if I really choose to have another child, at an “advanced” age, reproductively speaking. For God’s sake…I’m finding new, wiry grey hairs on a daily basis!! Is this the best time for me to be having another child? As much as I may want to? I don’t know. It’s such a personal decision, and that’s one reason why I think it should have a personal solution.
There does seem (among women our age) to be a belief out there that just because the technology exists, we can and should use it. I’m just not so sure that is always the case.
Until our society can afford to take proper care of its existing citizens, I’m not sure we should be asking society to fund potential pregnancies. I certainly don’t want to fund overseas adoptions for couples/individuals who decide to go that route, and I’m not sure what the difference is here. Maybe I’m missing something? I would love to hear your point of view on this.
And here’s the bulk of my replies:
I think comparing funding for autism and special needs to funding for reproductive techologies is like, to use a tired old metaphor, comparing apples to oranges. They have more differences than things in common. While I don’t argue that maybe we should be funding special needs more – I’ll readily admit my ignorance on this subject – I do believe that IVF should be funded and here’s a few reasons why.
First, and I know people hate this argument, but unless you’ve been through the hell that is infertility, you really have no idea what a basic human right it is to want to parent a child. When you have spent your entire existence simply assuming that the largest part of your life, and perhaps, if you are like me, your singular goal, will be mothering and then to find out for medical reasons beyond your control you are about to be denied that…. as I said, it’s impossible to put into words if you haven’t been there.
ARTs are funded unevenly in our country. In Ontario you get full funding for three attempts at IVF if you have two blocked tubes, but you don’t get that same coverage if you live in other provinces. And if your IVF is due to male factor, or other factors beyond bilateral blocked tubes, you don’t get coverage. The government has seen fit to bless some forms of ARTs, the older ones, with funding but still calls IVF – a procedure that is 25 years old! – experimental. You mention (and I have to admit, I bristled at the suggestion) that maybe there are dangers to the children that are conceived under ARTs. One thing about IVF, which is not funded, versus IUI, which is funded, is that with IVF you have much greater control over the number of embryos, therefore significantly reduced numbers of triplets or other high-order multiples. Almost all of the risks inherent to IVF (and believe me, this is something I’ve researched very very carefully) are from the risks associated with conceiving multiples and most of the fertility clinics I know of, certainly the Ottawa Fertility Centre, do not take the risk of multiples lightly. I had only three embryos and my clinic refused to transfer more than two due to the risk of triplet pregnancy. To say that there isn’t enough education of patients going through the process is insulting to both the doctors and the people they are treating.
So, while I appreciate you taking the time to write, I wholeheartedly disagree with you. For what it’s worth, by the way, we do have tax credits to trim the costs of adoption, both domestic and overseas, and I’m in support of those, too!
One last point from me, and only because it’s one that drives me crazy. Of all the families I know who have gone through IVF, and I know at least 20 in real life and know of hundreds of others through contact on IVF message boards (and blogs!), ‘advanced maternal age” is almost never the issue. I’d say never, but maybe there are a few of them out there – but at least of the 20 or so in my tight little circle, all have had things like burst tubes or severe endo or male factor infertility – there was no real factor of personal responsibility, just of medical necessity. I think the image of the career girl who finally gets the urge to procreate in her mid-thirties and turns to IVF when it takes too long the old fashioned way is a creation of the media. Even factoring out the cost, the uncertainty and the needles and the hormones and the intrusiveness of an IVF cycle makes it far from a casual undertaking.
I’m not going to comment b/c I feel underqualified (I live in the states and haven’t had IVF issues).
May I just commend you both for opening up such an important and sensitive topic in such a respectful and thoughtful discussion.
I’m not going to comment b/c I feel underqualified (I live in the states and haven’t had IVF issues).
May I just commend you both for opening up such an important and sensitive topic in such a respectful and thoughtful discussion.
Don’t feel unqualified to answer, Mega Mom. That’ exactly what I’m interested, a wide spectrum of opinions!
Don’t feel unqualified to answer, Mega Mom. That’ exactly what I’m interested, a wide spectrum of opinions!
I’m working on a post for my blog. Hopefully I’ll get it done this afternoon
Barb
I’m working on a post for my blog. Hopefully I’ll get it done this afternoon
Barb
Here’s the thing:
First, on a practical note, going after the federal government isn’t going to work, because it’s the provinces who have jurisdiction over what is covered and what is not. So even if you get the feds to agree with you, they can’t do anything (and even if they could the Tories are decentralist, and they wouldn’t). The CDA has been going after CRA for disability tax credits for decades, and they’ve just now won a partial concession, which is disability tax credits if you can produce a doctor’s letter saying you spend 14 hours each week managing your condition.
But more importantly, I am (mostly for selfish reasons) far more concerned about chronic medical conditions that result in death or disability. There are so many such conditions that are not covered at all, leaving individuals and families alone in managing those costs. As your emailer said, autism treatments at $7,000/month. Those costs are not optional; those parents must pay. They must pay for life. There is no end to it. And there are too many others. I’m sure you heard last year of all those families who were forced to relinquish custody of their children to the crown of ontario because they had disabilities and conditions beyond their means to financially pay for.
Any medical condition is a hard thing. It’s true that I don’t know what it feels like to be told that I can’t have children; but then, you can’t know what it feels like to be told that your child is permanently disabled and requires monthly treatments beyond your ability to pay, for the rest of your life, or to be told that you have a medical condition that is going to take a few decades off of your lifespan and be so difficult to manage that you must give up your lifelong dreams of writing, so I don’t think that’s a fair statement to make. I do know what it’s like to have a part of your body that doesn’t work. I do know what it’s like to be betrayed by that body, to have its failings affect your dreams and plans in uncountable ways, to have your life changed beyond recognizing by this thing that is outside your control. Maybe that is why I read so many blogs by women struggling with this issue–because I do know that feeling, very well.
I am not fully informed on the state of health care funding in Canada, in terms of what we can and can’t afford, societally; but assuming we can’t afford everything (and that’s probably true) I think we need to worry about the things that can kill people first, and the things that can disable people second, and then the other medical conditions after that. This idea that Canada’s health care system is already fully funding all “medically necessary” treatments is a myth.
It’s not that I think infertility isn’t deserving of funding. I do! It’s a horrible thing, a thing I can’t even imagine, and if the money is there for it I think we should do it. But if there isn’t money for everything than we need to prioritize, and things that can kill or disable people need to come first. Then after that we can think of medical conditions that don’t kill or disable people, see what money is left, and who can be helped, and how.
I mean, as horrible as it sounds, if you hadn’t paid for IVF, if you hadn’t become a mother, it would have broken you, it would have been awful–I don’t want to minimize it because I know it would not in any sense have been an easy or good thing–but it wouldn’t have KILLED you. If I for any reason stop my $600/month diabetes treatments, I die within a year. I have no choice. I have to pay. It’s medically necessary. But the CAnadian and Ontario governments won’t help me until after I develop complications that seriously compromise my quality of life. The kind of complications that could stop me from working or kill me. And maybe that is selfish of me, but I think that should come first.
I love you, Dani. I want you to have the family of your dreams. I would love to pay for it through my taxes. But if that happens while I am still paying for my diabetes care out of pocket, I will be very, very bitter.
Which is not to say that I don’t think advocacy is a good idea or whatever; only that it isn’t an issue I personally plan to be much involved with, except maybe cheering from the sidelines. I’d cheer a lot louder, though, if I didn’t have to pay for my $6,000-soon-to-be-$7000 insulin pump every five years and the $400 in supply costs and test strips and insulin all by myself for the rest of my life. I hope you can understand that, and it doesn’t sound like I am minimizing infertility, because that is the last thing I want to do.
Here’s the thing:
First, on a practical note, going after the federal government isn’t going to work, because it’s the provinces who have jurisdiction over what is covered and what is not. So even if you get the feds to agree with you, they can’t do anything (and even if they could the Tories are decentralist, and they wouldn’t). The CDA has been going after CRA for disability tax credits for decades, and they’ve just now won a partial concession, which is disability tax credits if you can produce a doctor’s letter saying you spend 14 hours each week managing your condition.
But more importantly, I am (mostly for selfish reasons) far more concerned about chronic medical conditions that result in death or disability. There are so many such conditions that are not covered at all, leaving individuals and families alone in managing those costs. As your emailer said, autism treatments at $7,000/month. Those costs are not optional; those parents must pay. They must pay for life. There is no end to it. And there are too many others. I’m sure you heard last year of all those families who were forced to relinquish custody of their children to the crown of ontario because they had disabilities and conditions beyond their means to financially pay for.
Any medical condition is a hard thing. It’s true that I don’t know what it feels like to be told that I can’t have children; but then, you can’t know what it feels like to be told that your child is permanently disabled and requires monthly treatments beyond your ability to pay, for the rest of your life, or to be told that you have a medical condition that is going to take a few decades off of your lifespan and be so difficult to manage that you must give up your lifelong dreams of writing, so I don’t think that’s a fair statement to make. I do know what it’s like to have a part of your body that doesn’t work. I do know what it’s like to be betrayed by that body, to have its failings affect your dreams and plans in uncountable ways, to have your life changed beyond recognizing by this thing that is outside your control. Maybe that is why I read so many blogs by women struggling with this issue–because I do know that feeling, very well.
I am not fully informed on the state of health care funding in Canada, in terms of what we can and can’t afford, societally; but assuming we can’t afford everything (and that’s probably true) I think we need to worry about the things that can kill people first, and the things that can disable people second, and then the other medical conditions after that. This idea that Canada’s health care system is already fully funding all “medically necessary” treatments is a myth.
It’s not that I think infertility isn’t deserving of funding. I do! It’s a horrible thing, a thing I can’t even imagine, and if the money is there for it I think we should do it. But if there isn’t money for everything than we need to prioritize, and things that can kill or disable people need to come first. Then after that we can think of medical conditions that don’t kill or disable people, see what money is left, and who can be helped, and how.
I mean, as horrible as it sounds, if you hadn’t paid for IVF, if you hadn’t become a mother, it would have broken you, it would have been awful–I don’t want to minimize it because I know it would not in any sense have been an easy or good thing–but it wouldn’t have KILLED you. If I for any reason stop my $600/month diabetes treatments, I die within a year. I have no choice. I have to pay. It’s medically necessary. But the CAnadian and Ontario governments won’t help me until after I develop complications that seriously compromise my quality of life. The kind of complications that could stop me from working or kill me. And maybe that is selfish of me, but I think that should come first.
I love you, Dani. I want you to have the family of your dreams. I would love to pay for it through my taxes. But if that happens while I am still paying for my diabetes care out of pocket, I will be very, very bitter.
Which is not to say that I don’t think advocacy is a good idea or whatever; only that it isn’t an issue I personally plan to be much involved with, except maybe cheering from the sidelines. I’d cheer a lot louder, though, if I didn’t have to pay for my $6,000-soon-to-be-$7000 insulin pump every five years and the $400 in supply costs and test strips and insulin all by myself for the rest of my life. I hope you can understand that, and it doesn’t sound like I am minimizing infertility, because that is the last thing I want to do.
Dani,
Thanks for approaching this in such a respectful way. I am looking forward to finding out what your readers think of our chat.
Beanie Baby – I think you approached this eloquently. You have explained very well my point about comparing one medical issue to another, and unfortunately, if we’re asking for government funding, they will be compared in this way. The point about the ongoing costs for disabilities and chronic medical conditions is one that, in my opinion, can’t be ignored.
Thanks for opening the debate, Dani. You’re right…this is important stuff.
Janet
Dani,
Thanks for approaching this in such a respectful way. I am looking forward to finding out what your readers think of our chat.
Beanie Baby – I think you approached this eloquently. You have explained very well my point about comparing one medical issue to another, and unfortunately, if we’re asking for government funding, they will be compared in this way. The point about the ongoing costs for disabilities and chronic medical conditions is one that, in my opinion, can’t be ignored.
Thanks for opening the debate, Dani. You’re right…this is important stuff.
Janet
Thanks, Andrea, for your carefully thought out response.
A few thoughts: first, the Canada Health Act does have some influence on what is and is not covered by provincial insurance, although I’m not sure to what extent. That’s why we have different coverage in different provinces, I guess.
Speaking of the Canada Health Act, it compells the provinces to the provinces to cover certain services that are “medically necessary to maintain health, prevent disease or treat an illness, injury or disease.” Which leads to the true underlying question: is infertility a disease? I say yes it is. A disease is an impairment of health or a condition of abnormal functioning.
Now, you raise some good points about degrees, and I’m in no way saying that funding for IVF should come out of some pool that then leaves less for other “more” deserving causes. But I think this is a horrible simplification, and that’s exactly why I was reluctant to compare funding for IVF to funding for special needs. It’s just not the way the system works.
I don’t think it’s reasonable to expect the entire cost of the procedures and the drugs and and the needles and all the associated costs (oh the money I spent simply on home pregnancy tests!) But I do think the treatments themselves, the parts performed in a hospital by a medical doctor, should be covered.
The problem is that a lot of the exams and tests involved with an IUI, which has a lower success rate and higher risks for the mother, are funded while the same things for an IVF is not. IVF is funding is some cases (two blocked tubes), but not others. Abortion is funded, IVF is not. I’m not saying we shouldn’t fund abortions, but I do wonder why we fund breast reduction surgery and not IVF. Not that I have anything against people who have had breast reduction surgery – it’s just the inconsistencies in the system that make me crazy, and that make is impossible to compare your life-threatening medical condition to IVF to what is essentially cosmetic surgery.
From my understanding, if you live in the States and have decent private insurance you can get coverage for IVF. You can’t even buy supplementary coverage here.
And I don’t think everybody should get funding for every attempt until they finally get the family they want, or that people who have been trying for a couple of months and find it’s not working out for them quickly enough should have funded fertility treatments. But I do think that in the cases where it has been medically determined that a couple is infertile due to medical causes then there should be an equal treatment across the board and that basic treatment should be funded. Maybe ICSI shouldn’t be funded for cases where sperm counts are above 10% healthy, for example. But in cases where there is virtually no chance that the couple is able to conceive on their own, I think that’s a disease and it should be covered.
And I love you too, Andrea, for making me fight for what I believe in and for making me see the other side of the fence in sparkling clarity.
Thanks, Andrea, for your carefully thought out response.
A few thoughts: first, the Canada Health Act does have some influence on what is and is not covered by provincial insurance, although I’m not sure to what extent. That’s why we have different coverage in different provinces, I guess.
Speaking of the Canada Health Act, it compells the provinces to the provinces to cover certain services that are “medically necessary to maintain health, prevent disease or treat an illness, injury or disease.” Which leads to the true underlying question: is infertility a disease? I say yes it is. A disease is an impairment of health or a condition of abnormal functioning.
Now, you raise some good points about degrees, and I’m in no way saying that funding for IVF should come out of some pool that then leaves less for other “more” deserving causes. But I think this is a horrible simplification, and that’s exactly why I was reluctant to compare funding for IVF to funding for special needs. It’s just not the way the system works.
I don’t think it’s reasonable to expect the entire cost of the procedures and the drugs and and the needles and all the associated costs (oh the money I spent simply on home pregnancy tests!) But I do think the treatments themselves, the parts performed in a hospital by a medical doctor, should be covered.
The problem is that a lot of the exams and tests involved with an IUI, which has a lower success rate and higher risks for the mother, are funded while the same things for an IVF is not. IVF is funding is some cases (two blocked tubes), but not others. Abortion is funded, IVF is not. I’m not saying we shouldn’t fund abortions, but I do wonder why we fund breast reduction surgery and not IVF. Not that I have anything against people who have had breast reduction surgery – it’s just the inconsistencies in the system that make me crazy, and that make is impossible to compare your life-threatening medical condition to IVF to what is essentially cosmetic surgery.
From my understanding, if you live in the States and have decent private insurance you can get coverage for IVF. You can’t even buy supplementary coverage here.
And I don’t think everybody should get funding for every attempt until they finally get the family they want, or that people who have been trying for a couple of months and find it’s not working out for them quickly enough should have funded fertility treatments. But I do think that in the cases where it has been medically determined that a couple is infertile due to medical causes then there should be an equal treatment across the board and that basic treatment should be funded. Maybe ICSI shouldn’t be funded for cases where sperm counts are above 10% healthy, for example. But in cases where there is virtually no chance that the couple is able to conceive on their own, I think that’s a disease and it should be covered.
And I love you too, Andrea, for making me fight for what I believe in and for making me see the other side of the fence in sparkling clarity.
My blog on this is now updated. I got sidetracked this aft by the warm sunshine!
Barb
My blog on this is now updated. I got sidetracked this aft by the warm sunshine!
Barb
This is such a two sided fence for sure. Although I do not totally agree with Janet’s comment, I have to respect her thoughts on the subject.
I too don’t necessarily feel that IVF should be covered for age related attempts at conceiving. But, I do agree that IVF should at least be partially funded for everyone who cannot medically conceive a child. Although I only had one blocked tube, it was not me that could not conceive it was my husband. So either way we weren’t covered.
And I wanted to add that when I was offered an amnio or triple screen, etc. I turned them down. For several reasons. 1.There is a risk of miscarriage which amnio. 2. There was no way in He** that I was going to abort my child no matter what may have been wrong. and 3. I was in it for the long haul. If “J” had been born with any abnormality or defect, I would have still been blessed to have him. I made a commitment to love and cherish him from the day I stopped taking my birth control pills.
It would have been nice to have had some support from the gov’t when we went through this, perhaps not the whole enchilada, but a little bit shaved off would have made the world of difference.
This is such a two sided fence for sure. Although I do not totally agree with Janet’s comment, I have to respect her thoughts on the subject.
I too don’t necessarily feel that IVF should be covered for age related attempts at conceiving. But, I do agree that IVF should at least be partially funded for everyone who cannot medically conceive a child. Although I only had one blocked tube, it was not me that could not conceive it was my husband. So either way we weren’t covered.
And I wanted to add that when I was offered an amnio or triple screen, etc. I turned them down. For several reasons. 1.There is a risk of miscarriage which amnio. 2. There was no way in He** that I was going to abort my child no matter what may have been wrong. and 3. I was in it for the long haul. If “J” had been born with any abnormality or defect, I would have still been blessed to have him. I made a commitment to love and cherish him from the day I stopped taking my birth control pills.
It would have been nice to have had some support from the gov’t when we went through this, perhaps not the whole enchilada, but a little bit shaved off would have made the world of difference.
I see no reason why it should be One (funding infertility treatment) or The Other (increasing funding to support special needs children). It’s too bad that in our (mostly) progressive country that it always seems a “one or the other” debate, rather than a “both are worthy” situation. I’m sure people would tell me about governent debts and deficits, but you have to realize that social spending is but a very tiny cause of the federal government having (had) either.
I see no reason why it should be One (funding infertility treatment) or The Other (increasing funding to support special needs children). It’s too bad that in our (mostly) progressive country that it always seems a “one or the other” debate, rather than a “both are worthy” situation. I’m sure people would tell me about governent debts and deficits, but you have to realize that social spending is but a very tiny cause of the federal government having (had) either.
I disagree, the ability to get pregnant is not a human right. While I appreciate how devastating this issue is for those loving, wonderful potential-parents, as a taxpayer, I have to question the wisdom and ethics in funding this. According to Health Canada (2010), IVF results in a statistically significant higher rate of birth defects, health problems and developmental disorders. Am I to understand that not only will my tax dollars fund the treatments to care for children naturally born with health and developmental problems, as well as for their academic support and accommodations, but now I am also to help fund a program which research has shown will increase the rate at which children with birth defects will be born? I’m sorry for your troubles, but I’m not ok with that. The services that do exist for special needs children are already insufficient and over-stretched (and yes, 2 to 3 years is a standard wait time for children with developmental disorders to receive services that will foster communication skills).
It’s not just about the money. It’s about a little life facing a life-time of horrific difficulty. I work in the field and I can’t tell you how many pathetic wee children I’ve come across who have spent their lives since birth (some since they were in utero) living in painful and inadequate physical and/or developmental circumstances. This is not just about the parents’ “right to conceive”, but about creating a human life. The research has demonstrated that the lives created have substantially greater chances of being severely defective.
Yes, it is tragic that you can not conceive, but if your uterus is proving to be inhospitable or whatever the conception problem may be, is forcing conception of an embryo who then has to grow and develop in that environment really your best strategy? Compare it to baking a bun in an oven that doesn’t work. It’s more likely to come out raw, burned or partially baked. It’s like you’re setting your child up for a life of health and developmental issues just because you want to find solace in the thrill of experiencing pregnancy. I want no part in that. This is not a human rights issue. Heart transplantation is a human rights issue because it’s a matter of saving an existing life that would otherwise continue to thrive. IVF is an issue of achieving a personal goal, not saving a life or preventing illness. As valuable and precious a goal as it may be, it is not a right and is not the responsibility of taxpayers to fund. It’s also not in the best interests of the taxpayer, society or the potential children procurred by this method. Yes, several healthy children could be born of this method, but several more will face a lifetime of suffering. There’s no way to determine which one your’s would be. Health Canada has identified the risks and it simply is not a good use of taxpayer’s already stretched dollars.
Just for the record, I am a childless woman who longs for children but has struggled with my own fertility issues.
I truly value all of your opinions , you are all entitled to your own. Mine however comes after losing our premature daughter in 2000 shortly after birth and enduring 2 hurtful miscarriages afterwards. We were told IVF was our only hope. And like most families today barely make enough money to get by day to day nevermind finding the money to pay for a treatment that would cost around $10, 000. It hurts me to know that without governent funding we will never be able to have that baby we have longed for forever. I don’t think anyone who hasn’t been in our shoes (or any infertiles shoes) should not be able to judge others. I think IVF should be covered! I pay taxes just like the next guy and have to fund things I don’t feel is right. (and I don’t have a choice) I don’t agree with the government handing out money to those who have kids for nothing (AKA baby bonus or child tax credit) And the more kids you have the more money you get!) That’s BS! I know some people have more and more kids just to collect more welfare and baby bonus! Why should I have to pay for them to raise their kids?? So who’s talking about fairness now????? I think IVF coverage by the government is terrific!! Hopefullly they do it soon.