Drug cost help in Canada?

[playethic]

Hi

Has anyone had any successes / experiences with getting help with expenses for IC-related prescriptions in Canada?

In BC, Elmiron is almost $ 1000 / year and Uracyst (a fluid, but classed as a 'medical device') is about $ 1200 for 13 months.

I'm on the maximum Pharmacare (no income) coverage but there's still no financial help because they say none of the meds. I'm on count toward the Pharmacare deductible.

I imagine that there are also many many of us like me without extended health coverage who are struggling with these costs. A friend added up my receipts for prescriptions and they range between $ 700 and $ 1500 a month.

Opiates - for pain management - too can get staggeringly expensive, especially if you are on the patch or some of the morphines.

I think it would be useful to share knowledge, resources, tips about the struggle to afford prescriptions among Canadian patients.

Please share anything that you think may be of help to others.

Lisa

[partners]

IC on Vancouver Island

I have IC and live on Vancouver Island. I was diagnosed 15 years ago and the first thing I did, because I was only 23 and had no family to help me, was try get disability through the government. Now, I continued to work and have continued to work since my diagnosis, but was scared that it might get so bad that I would be unable to work. I had my doctor fill out the necessary forms and had citizens advocacy help me with the application at the time. I was granted disability status and so now even though I work I am considered disability level two and SOME of my meds are covered.

Then what you can do is get the forms for a disability tax credit and go to your doctor and have those filled out. Send them in to Revenue Canada and if you are granted disability status, as I was, you will pay less income tax. Then they go through your last seven years of taxes and re-calculate them as though you were disabled and you are reimbursed the difference ($7,000.00 for me).

Now you go to the bank and apply for a Registered Retirement Disability Plan. As you have the tax credit you will be eligible. With this you can contribute let's say $125.00 a month towards retirement, and the government kicks in 3 times as much so in a year ( if you fall under an income of approx $78.000.00 yearly) if you contribute $1,500.00, they contribute $3,500.00, for a total of $5,000.00. This is the limit yearly. You can do this until age 49.

More questions just ask.


Hope this helps.

Wendy

[playethic]

Questions

This is very very informative, very helpful.

I have now spent through almost all my retirement savings (RRSPs) so I need to move. I find it almost impossible to do the calls etc., meds pretty much have me in bec 24/7 again and sometimes like past couple of days, like I can't even keep my eyes open or hold my head up ... so sorting through government calls and such, I just keep hoping the next day might be clear so I can do that...

That sounds a bit Eeyore, that paragraph. I do try to be focused on the solutions side of things, as much as I can.

Two questions ... what is 'citizens advocacy'? You said they helped... what is that? Never heard of it.

Also - the 'disability tax credit' you refer to, that's something you apply for through Canada Revenue Agency?

Thanks

[partners]

Disability tax credit

You can apply for the Canadian Disability Tax Credit by downloading and printing the form off the Internet and then having your physician fill it out. In Nanaimo on Vancouver Island we have a non-profit organization called Citizens Advocacy that advocates on behalf of the disabled etc. Try to look for a group in Vancouver that you can use as a resource, and run the forms by them before you bring them to your GP, they might have some tips on what the GP needs to write in order for you to be approved.

How bad is your IC? Are you frequency, spasms, Hunner's ulcers? How old are you now? ( To determine RDSP benefits )
Does what your taking work for you?
Here is what worked for me when NOTHING else would, and I accidentaly found out about it when I was prescribed them for insomnia. Trazodone worked at a dose of 25 mg a night IN CONJUNCTION with very aggressive relaxation exercises and a dose of Lyrica 75mg in the pm. I went 15 years in pain and then suddenly I was able to hold 400 - 500ml of urine WITH focused relaxation including yogic breathing and meditation.
Then the Lyrica caused some weight gain and so I went off and flared.

Hope this helps,
Wendy

[playethic]

Hi Wendy

Re: age, I'm 45.

I have severe IC - pelvic pain is by far the biggest problem (frequency not that troubling in comparison, & urgency not an issue except in relation to the pain). I am on opiates 24/7 or else I'm back in ER. But my body doesn't respond that well to opiates so far so I'm Rip van Winkle 20ish hrs./day - so somnolent & out of it, I'm mostly bed-bound. Constantly trying things that might cover the pain but allow me to be clear-headed (so I can work). I don't currently have ulcers, that they can see in cystoscopy.

In 2008 under hyperdilation (hydrodilation?) they did see scarring etc. and did fulguration (cauterizing) of the bladder lining. After that I had minimal problems for a couple of years.

I switched from morphines to methadone a few weeks ago. I have paused the heparin/lidocaine instillations (pain seemed up, I thought maybe because 3 instills a week was too much) but am still doing Uracyst instills. once a week.

I was freelance/contract so don't have any extended health coverage, prescriptions paid for etc. ... I've been cashing in all my RRSPs.

Thanks for your tips,
Lisa

[partners]

Pelvic Pain

I am not familiar with pelvic pain. There has been occ'l when I suddenly get this stabbing pain in my vaginal wall, and I wonder if that is vulvadynia, but am not sure.

Does the Urasyst work for you? What exactly does it do?

Has the Elmiron worked for you? Without it what would happen? Would your frequency increase?

I hate to see anybody have to go on Methadone for pain, but pain brings everybody to their knees as some point....it's the great equalizer.

I wish you had a union job so you could have Blue Cross.

I am sending you positive thoughts today.

Wendy