Epileptic and missing meds in Ontario

October 5, 2007 5:46 AM

So my epileptic wife and I moved from the US to Ontario a couple of months ago, and we just found out that one of her anticonvulsants is not available in Canada. This is potentially Very Bad.

My wife has very difficult to treat epilepsy. She's now on three different anticonvulsants -- Lamictal, Zonegran and Trileptal. Even with those three, she still has complex partial seizures around once a month, usually after she's been sleep deprived and usually at night. While we were at a appointment with the family doctor a couple of days ago trying to get refills we found out that Zonegran (aka Zonisamide) is not in the Canadian formulary. We brought over around a three month supply when we moved, which is why we're only finding out about this now. Going cold turkey on a neurological drug can be very bad and we're pretty worried about what could happen.

Unfortunately, this being Ontario, it's very difficult to see doctors. Her first appointment with the neurologist up here isn't until January, well after her supply of Zonegran is due to run out. Calls to the neurologist's office explaining the direness of the situation are useless -- we're on a cancellation list but they're not at all sympathetic to our situation otherwise, which is frustrating. The family doctor is sympathetic, and we can see him reasonably easily, but he has limited powers to diagnose neurological problems. He can, however, prescribe stuff, which is how we're getting refills on the Trileptal and Lamictal.

I realize that YANMN (you are not my neurologist), but if you're of a medical or neurological bent and have any advice for us, I'd really like to hear it. Things like:

1) Is there an analog to Zonegran that would be available in Canada? Something other than Topamax, which she does not tolerate well at all.

2) Or hey, maybe going up on the Trileptal or Lamictal might compensate?

3) Is there some way to see any neurologist sooner? We're in Hamilton, but I would drive all over the GTA (and really, SW Ontario and hell maybe all of Ontario) if it meant we could get some sort of help before the Zonegran runs out in 3-4 weeks.

4) Failing that, how to force the issue with the local neurologist? An ombudsman? Complaint board? MPP? Badgering Stephen Harper or Michaëlle Jean? Epilepsy Ontario?

Thanks a pile for your help.

posted by the dief to health & fitness (18 comments total)

Canadian doctors not too infrequently have DEA numbers; it might be easiest (for now) to track one down, have him write the prescription you need, and go on a day trip to a border town with a pharmacy. But.

(3) I'd consider a trip to the local ER the second the drug runs out, with a demand to see the neuro on call.

(4) Not sure, but I'd start with a call to the administrator of the hospital s/he works out of and go from there; you might be able to bypass #3 if you found a sufficiently sympathetic ear.

Good luck; hopefully others will have better ideas... I'd consider printing out this page at the end and flinging it at your MPP eventually -- not to get help, but to shame.
posted by kmennie at 5:54 AM on October 5, 2007

Isn't there some way you can drive down to the States and get some more to hold you over until you can work something out?
posted by orange swan at 6:11 AM on October 5, 2007

orange swan, maybe. I don't know if my Canadian SunLife drug card works in the States, or if I can afford retail Zonegran. But it's an option.
posted by the dief at 6:16 AM on October 5, 2007

Is your family doctor averse to continuing a regimen prescribed by previous doctors? I'm not understanding that. I find that it's easy to persuade doctors to prescribe something as long as it's not a DEA scheduled item. As far as obtaining the Zonegran, the Internet will supply what you need. This place has it.
posted by rolypolyman at 6:30 AM on October 5, 2007

rolypolyman, the GP is not averse to continuing a regimen prescribed by previous doctors -- hence why we're able to get Trileptal and Lamictal. But Zonegran is not available in Canada. So I'm confused as to how the website you mentioned actually has it, unless "Canada Pharmacy" is not actually based in Canada.
posted by the dief at 6:34 AM on October 5, 2007

Also, check Question 9 in Canada Pharmacy's FAQ. Canada Pharmacy does not ship to Canada. Hilarious!
posted by the dief at 6:36 AM on October 5, 2007

I would say your best bet might involve:
* Buying another three-month supply in the US, which is legal
* Getting an appointment with a US neurologist to consult on the alternatives, with particular attention to drugs approved in Canada
* Planning frequent trips to visit relatives

It's not unmanageable (unless it really is too expensive) -- lots of Americans do something similar to save money on drugs.

I'm assuming you've not just moved on a whim but for career or other semi-permanent purposes.

That said, are you certain you can't find a neurologist in private practice? I assume they must exist, although they may (again) be expensive. My expertise on the Canadian health system does not extend much farther than SiCKO, but if there are waiting lists for certain things, the market would surely provide?
posted by dhartung at 6:38 AM on October 5, 2007

dhartung, this is good news -- thanks much for pointing it out. If I can figure out if my drug card works in the states, I'll be golden.
posted by the dief at 6:50 AM on October 5, 2007

Call her neurologist in the states and posit this scenario.

Most docs are ok with taking/making a quick phone call if you leave a message saying "Help I can't get my medicine."

S/he might even be able to change your wife's meds (a little more of this, a little less of that) so she can get them in Canada.

Or, her office can call her usual prescription into a pharmacy that will deliver to Canada (or a friend in the States who will then mail the prescription on to you).
posted by sondrialiac at 6:53 AM on October 5, 2007

If you don't have health insurance anymore in the US can you enable your COBRA and order a refill in the US?
posted by k8t at 7:24 AM on October 5, 2007

You might check out the drug company's Patient Assistance Program to see if there's any way they would give you enough to tide you over. From the Eisai website:

Patient Assistance Programs (PAPs)

Please call between the hours of 9:00 AM - 6:00 PM, Eastern Time, Monday - Friday, for information about our PAP programs.

Zonegran®
Phone: [phone]
Fax: [phone]
posted by MsMolly at 7:38 AM on October 5, 2007

I've mailed you with some info on my sister's neurologist, who is booking patients for October-November right now. This won't get you drugs immediately, but if you are looking for a doctor who is more immediately available, he may be a good choice.
posted by maudlin at 7:43 AM on October 5, 2007

I was very unhappy with my current neurologist (in Vancouver), and needed to see another one. I ended up in the ER, after having yet another TIA (I didn't know what they were at the time). The docs in the ER got me a neuro consult, and after the neuro on call checked me out, he told me to call his office and make an appointment - he was going to tell his staff to do their best to squeeze me in, and that they did. I had an appointment within two weeks. I'm pretty sure I'll eventually credit this man for saving my life. (I will say that, at the time, they were quite worried that I, a 28 year old female, might stroke out on them in the very near future. Hence the rush to figure out what was wrong.)

I guess what I'm trying to say is - you might be able to see a neuro if you commit to a day of hanging out in an ER and being poked and prodded. Pick the largest hospital in the area; larger city centers are more likely to have a neuro on call. (For example, there are only two hospitals in the greater Vancouver that would work for me) If it was me, I'd go after your wife has her next seizure. Explain to the first nurse/doctor you talk to about the seizures, etc and if they don't get you a neuro consult right away, ask (or push) for one. Then, you'll have a couple minutes with the neuro to plead your case... If he can't prescribe what your wife needs right away, ask him directly about what you're supposed to do in the meantime. You and your wife need to be a very strong advocates for her health, and sometimes it means taking a side door in in order to get what you need.

Obviously, IANAD or anything close, I've just had more than my fair share dealing with neurologists (and their staff) in the last few months.
posted by cgg at 8:08 AM on October 5, 2007

i'd do an ER trip a week BEFORE the drug runs out. lie and say you're out of pills (make something up if you must, like she dropped the bottle and a few fell down the drain). but secretly have a backup of pills for a few days just in case.
posted by twistofrhyme at 10:42 AM on October 5, 2007

I'm confused -- you are in Hamilton, which is the second-largest city in Ontario, and 45 minutes from Toronto -- why are you only considering this particular neurologist? There must be dozens within reasonable distance that you can call to find out when they are booking new patients. (And please don't spread the idea that doctors are hard to see in Canada -- just not a fair statement.)

Health canada special access program
posted by loiseau at 12:18 PM on October 5, 2007

loiseau, this is the neuro that our GP hooked us up with. We just moved here, so we don't really know anybody. Maybe calling a bunch *is* the way to go, but we're working from the mindset where you need referrals.

I should have been more charitable about the doctors in Ontario thing -- we did get a GP pretty easily, and a rheumatologist saw us fast too. It's just the neurologist that's sticking in our craw.
posted by the dief at 12:22 PM on October 5, 2007

You *will* need a referral, but once you find a neuro willing to take you on short notice, you can just ask your family doctor to refer you to them (eg. fax over your info).
posted by loiseau at 12:36 PM on October 5, 2007

Small digression: were you in an HMO in the States? My understanding was that patients in HMOs could be referred only to the approved specialists on their list and not to any other specialist in your city/state. It doesn't work like that here. Your GP can refer you to any practicing doctor in the province, so making the first move by finding someone available, as loiseau mentions, is just fine.
posted by maudlin at 12:43 PM on October 5, 2007