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don242

There is a special access program that allows a doctor to request a drug that has not been approved in Canada. Talk to your doctor about it. That said, whether the pharma company will provide it as compassionate use will depend.


SourDi

As a hospital pharmacist who commonly has to navigate insurance hoops and special access meds this is the correct answer OP. Most novel medications will have the company sponsor because they want data.


Infamous_Pea_9454

As a community pharmacist, exactly this. Work with your doctor to get in direct contact with the company and join whatever study you can if you meet the inclusion criteria. Wouldn’t hurt to get in touch with your local MP either and your local MLA. MP for whatever federal hoops you may need to jump through and MLA since drug coverage is provincially administered.


jayhasbigvballs

Something to note about this: the drug must be approved somewhere in the world already. It sounds like this medicine is still investigational in all jurisdictions, and so it would not qualify for SAP. Also note that as soon as a drug gets approved in Canada, it does not qualify for the federal SAP. This is a particularly important point in rare diseases with high cost drugs, as companies may get health Canada approval, but still decide to delay or not launch the drug in Canada, since our reimbursement landscape leaves a lot to be desired. And to this commenters point, even if you get approved access through SAP, you may still have to pay for the drug if the company chooses for that to be the case. This is a complicated decision with many inputs and factors, least of which is greed.


Islandflava

If the drugs is approved and not experimental then OHIP (if ON) may cover it, they have programs for out of country coverage. I don’t know if these will apply in your situation http://www.ontario.ca/page/out-country-ohip-covered-services-physicians


pig_newton1

Oh wow I hope they have something similar in Quebec


bonrmagic

Quebec health care sucks. Good luck (tone: sincere)


Firm_Event_1063

worse than BC? Ontario?


jellicle

US private insurers won't want to cover it either! I think your best bet is to find a university hospital that is doing research into your condition and get into a drug study. You might want to make a list of the 5 or 10 people in Canada who are studying or treating your disease, and talk to each of them to see what they can do for you. https://www.canada.ca/en/health-canada/services/drugs-health-products/special-access/drugs.html https://www.ontario.ca/page/applying-exceptional-access-program


Xyzzics

Do you have a basis for making this claim? On this specific drug and condition and insurance package? There is so much US healthcare misinformation on Canadian subreddits it’s crazy. It depends on the drug, coverage plan and a million other variables. It’s not “drug expensive, no coverage lol”. They don’t make money from denying claims, they make money from effective risk management and millions of people and their employers paying premiums that aren’t actively sick. There are very premium healthcare plans available, and there are shit ones.


AngryOcelot

They absolutely make money from denying claims. If it's a clear cut indication, they will eventually approve them but in that time a portion of providers will give up and another portion of patients will have progressed/died so that the treatment is no longer indicated.


West-coast-life

"They don't make money from denying claims." Well considering they get money every month from premiums, and denying claims would mean they aren't paying anything out, it would seem logical that your claim is complete and utter bs. They absolutely DO make money if they deny claims, and absolutely ARE financially incentivized to do so. You sound like an insurance shill. It's pathetic man.


Xyzzics

There are thousands of insurance plans across many providers. The premiums are statistically calculated to bring revenue on the aggregate. Do you think 100k even moves the needle on billions of dollars of premiums collected per month? Claims can’t simply “be denied” when there is a clear onus to provide a service in the contract. They may be denied if they weren’t eligible in the first place. Do you also not get insurance on your house or car, cause those insurers totally won’t pay you, it’s a scam man! /s You sound like you don’t understand insurance.


100GHz

https://www.theglobeandmail.com/news/investigations/doctors-insurance-independent-medical-examinations/article37141790/


Xyzzics

Completely separate issue and frivolous argument.


AngryOcelot

This happens literally all the time. There can be a class I guideline indication for a procedure or medication and insurance will deny it. They will keep requesting documents you've already provided, peer to peer calls, etc... If even 5% of physicians give up that's a huge amount of profit for the insurance company.  For some procedures it's actually better for the patient to have Medicare instead of other insurance because it gets instantly approved. 


fuck_you_Im_done

Nope. You don't have any understanding how bad it is for them. My favorite is when a doctor says "we need to operate to fix your ankle or you'll never walk the same again." So the person books the surgery and submits the paperwork. The insurance company comes back and says "we disagree that you need surgery. Coverage denied." Then that person spends the rest of their life in pain and discomfort because a fucking insurance company can override a medical doctor and deny a claim. And since that surgery was $50k, they live in pain. It is fucked up.


fuck_you_Im_done

Jesus. What is it with this wet dream American ideology. I've lived in the US. I have first hand experience with insurance and the costs associated. There is no misinformation. It is that shitty.


Xyzzics

I’ve lived there also, and my care was fantastic compared to Canada. I could get appointments pretty much instantly, see specialists very quickly and there is such a thing as preventative care, not just emergency room medicine. Now we’ve got two anecdotes that are meaningless. This was about the general function of insurance.


fuck_you_Im_done

The Americans can't get appointments for specialists either right now. Reading comprehension is tough, but my comment was about insurance. Your response was not.


cutiemcpie

Agree 100%. If OP got a job in the US with private insurance the chances of the drug being paid for are very good. It’s a reason why healthcare is so expensive in the US - they tend to pay for most stuff.


fuck_you_Im_done

No. Go move there. Report back. They don't cover shit. I've done it.


cutiemcpie

FAKE NEWS I have lived it.


fuck_you_Im_done

Fake news? Good god. Please go back.


cutiemcpie

LOL, you mad


pig_newton1

Why wouldn’t a US insurance provider cover it?


jellicle

Because they don't want to pay for any medication that costs $100k per year?


cutiemcpie

That’s not a reason to deny it. Unlike the story Canadians are told most of the time things are paid for.


fuck_you_Im_done

Oh ya lol? I've lived it. Canadians are not "told a story." But don't take my word for it. Run on down to the US, get a job, and report back.


cutiemcpie

I have. It’s nothing the way things are portraits to Canadians. My US insurance covered far more than Medicare


pig_newton1

So you expect Americans to just pay it out of pocket? An extremely rare disease to begin with, how would the company make any money?


jellicle

I feel like you may not understand the system. This is the experience of a reporter who writes about these issues and has a national platform, i.e. she would get a lot better treatment by the insurance companies than you would because she's a threat to write damaging articles about them: https://archive.is/NjDdS Your experience would likely be similar or worse. Insurance companies make money by denying treatment for people with expensive problems, not by treating them. The provincial insurers in Canada are also going to be skeptical of paying for a new, expensive treatment but I suspect that overall your odds are better here.


username262626

From rich people paying out of pocket. Also middle class people bankrupt themselves, paying out of pocket. Use your own logic. How would insurance make any money paying for super expensive drugs.


NastroAzzurro

Generally they negotiate. The drug doesn’t “cost” 100k, that’s what they charge. The pharmaceutical will want to earn back the R&D cost and then make some profit. This is why rare diseases get less research. Pharmaceuticals aren’t charities.


Garfield_and_Simon

Yes. Americans with “good” insurance still pay out of pocket for a lot more common and cheap medication lol.


Bingeon444

That's how it works in the US. Most Canadians have no concept of how barbaric the US healthcare system is. If you look it up, you'll find that very few rare disease treatments are covered by insurance companies in the US, and even the ones that are, are often evaluated case by case and would be rejected for most people. That's why medical bankruptcy, and suicide due to medical bankruptcy are a thing in the US.


pig_newton1

I get what you’re all saying but my point is then how why would this company even research and develop the drug? About 10k Americans have the disease so it’s gonna be expensive for sure. There was a gene therapy to treat another rare type of blindness that came out in 2017 that costs 1M for a one time treatment and most US insurance providers cover it so far as well as all the provinces in Canada


likeaparasite

If it's new, brand-name drug then it's even more likely to not be covered or minimally covered. That's just how it is even with cadillac plans sometimes with tier 3/4 medication.


pig_newton1

I don’t think it’s brand name. It’s a small biotech company that’s been developing it for 15 years. As far as I know they don’t have any partnerships with any of the big players


likeaparasite

You said "There is a drug that will theoretically be FDA approved in early 2025" which means it is new and unlikely to have a generic counterpart on the market in the first 3-5 years. That makes it a tier 3 or 4 medication on most formularies.


pig_newton1

I see so that means it’s unlikely to be covered?


likeaparasite

Unlikely. Every drug you think is expensive here is even more expensive in the US because of the pharmaceutical lobbying.


Fit_Raise_2498

Are there any phase 3 clinical trials you could enroll in? Otherwise approach the company and request a compassionate use exemption.


pig_newton1

Nope I tried so hard but they wouldn’t cause I’m Canadian. Literally going blind cause I’m born too far north.


wudingxilu

> Is getting a US job with private insurance the only reasonable way? A pre-existing condition can sometimes be challenging to get coverage for, nevermind your need to get working permission via a visa or greencard to the USA


pig_newton1

Yea I have an employer that can transfer me but I would make sure the insurance would cover it before moving


divine_goddess_K

You have a pre-existing condition. Insurance companies will use that and other loop holes to make sure they don't have to pay for your coverage.


Firm_Event_1063

~~Absolutely~~ Mostly false. Unlike in Canada, health insurance companies cannot discriminate using pre-existing conditions. There are some exceptions, but it seems like if you pick an ACA-covered plan it should be fine. [https://www.hhs.gov/answers/health-insurance-reform/can-i-get-coverage-if-i-have-a-pre-existing-condition/index.html](https://www.hhs.gov/answers/health-insurance-reform/can-i-get-coverage-if-i-have-a-pre-existing-condition/index.html) Additionally, if you get coverage from your employer, you get coverage from your employer period. The insurance company can't pick and choose which employees to cover.


activoice

There isn't a guarantee that the insurance provider will cover the treatment especially if it's brand new. My Sister lives in the USA and has employer provided coverage. Her twice a year MS infusion treatments weren't originally covered by her insurance, now they are but they have to apply for an exception before each treatment. Also I think her deductible is something crazy like $12k USD per year.


cutiemcpie

Not all the Canadian provinces pay for the drug you’re talking about


divine_goddess_K

From the link you posted: under the Affordable Care Act, aka Obamacare. Private insurers are not obligated to cover pre-existing conditions in the USA. My own family members have had issues with their insurance. I'm speaking from experience.


Firm_Event_1063

I don't think you understand the ACA. Here's a link: [https://www.verywellhealth.com/pre-existing-conditions-exclusions-1738633](https://www.verywellhealth.com/pre-existing-conditions-exclusions-1738633) In particular, for individual plans: "Since the ACA has been implemented, **pre-existing conditions are no longer a factor in pricing or eligibility**, and insurance applications no longer ask about medical history when people enroll." For employer sponsored plans (like OP is considering): "Now that the ACA has been implemented, it no longer matters whether Mike had coverage prior to joining his new employer's plan, or whether he sought treatment for any medical conditions in the months before joining the plan—**his pre-existing conditions are covered either way.**"


Sparky62075

I thought Trump changed a few things in the ACA, including this.


likeaparasite

The big change that Trump made to the ACA was eliminating the individual mandate on a federal level. He also cut funding for and shortened the open enrollment period, as well as reducing or removing cost-sharing subsidies that helped keep premiums "affordable" on the marketplace.


Firm_Event_1063

If your family members have had issues getting coverage for a pre existing condition, they probably have an old plan mentioned in the link. Otherwise they should probably sue.


divine_goddess_K

I still see and hear about it happening quiet frequently. Just because it says they are covered doesn't mean that the insurance companies are paying out. My clients used to be insurance companies. I see what happens internally.


Firm_Event_1063

Do they have ACA-compliant plans? What's stopping them from suing?


fuck_you_Im_done

Americans get cancer and get dropped from their insurance. Preexisting conditions are absolutely something they can drop you for.


Firm_Event_1063

for non-ACA compliant plans. If you have a pre-existing condition, isn't it as simple as getting the right plan?


cutiemcpie

False.


Wide_Connection9635

I have a friend whose wife has to take some special medication that costs like 50k / year or something like that. His work benefits pay some of it, but not all. They just tell the company they're not paying the rest and they've never complained. I know this sounds odd, but it kind of is like that. These rare disease drugs are priced high because they can't recoup any of it on volume. I think they just try and maximize what they can get back from insurance. They charge 50k, they know insurance might pick up 25k (or whatever). That's good enough for them and they're not coming after you for the rest, but they have to list it as 50k so insurance will pay 25lk.


pig_newton1

Interesting yeah I imagine they’ve done their calculations to price according to some expected insurance return


Just_Cruising_1

If they don’t cover it, came you move back to Canada? Because OHIP most likely will, won’t it?


cutiemcpie

There are plenty of drugs Canada either doesn’t pay for or they take 3-4 years to start paying for


Just_Cruising_1

Jesus… I feel so privileged to not know this. What can we do to make things better for Canadians with disabilities and medical issues?


cutiemcpie

Not much if you want a single payer system. They all do it.


Firm_Event_1063

3-4 years from what? drug entering the market?


cutiemcpie

Yes


pig_newton1

Good question. I’m researching RAMQ the Quebec version of OHIP cause that’s where I’m at currently


Just_Cruising_1

Okay, so if you’re in QC, are they covering this medication for you? And if they do, why are you moving to the US then?


pig_newton1

You misunderstood. It’s gonna be a brand new drug available only in the US. Maybe one day it will come to Canada but that could take years.


Just_Cruising_1

Oh, sorry. Yeah, I’d do a research and maybe even speak with your doctor. I just tried googling this but didn’t get far. If QC doesn’t offer to cover this medication but ON (or other province) does, would you consider moving there? I’m sorry about your condition.


pig_newton1

Yea I’d definitely rather move to another province than the US. Way less complicated.


CSPN

I'm learning to play the guitar.


TweedlesCan

Write to your elected officials! A friend of mine needed a very expensive and not yet approved (in Canada) drug for their chronic degenerative condition. We did a letter writing campaign (friends, colleagues, and community members all wrote) and sent emails to our MLAs and the provincial health minister. It was approved relatively quickly and they have had continuous access for nearly 5 years now.


pig_newton1

Wow that’s amazing, they were trying to get access and provincial coverage to a drug in the US?


TweedlesCan

It had either just been approved in the US or was still experimental (I can’t remember exactly, but it was very very new) and wasn’t available in Canada yet. The health minister was really supportive once he got all the letters - he sat down with my friend and talked with them about why this medication was so important. He managed to somehow get it fully covered by the province for them. It’s super expensive (I think over 250K a year), and it sounds like they will fund it indefinitely. It sucks that you have to try to get access to this drug yourself, but don’t underestimate the sway of a well written and emotion-evoking letter to the people in charge of making these decisions!


pig_newton1

Wow okay I will start drafting some letters then, very good idea


Potential_Soup_6469

Is it retinitis pigmentosa lol


pig_newton1

Close, stargardt disease. The drug is made by alkeus.


Potential_Soup_6469

Good luck, my father has RP. It’s a nightmare but he stays positive and we all hope for a treatment. One day! I would also make sure your optho team is in the know about the treatment so that they can order it. That way it would be covered, maybe not even much later than US


pig_newton1

Yea definitely. Sorry about your dad. There’s a lot of great RP stuff coming soon as well I hope he can benefit from it. These diseases are cruel. It’s a slow torture


Potential_Soup_6469

All the best


[deleted]

See if it's FDA approved for treating something else


pig_newton1

It’s not. It’s to treat juvenile macular degeneration for which there is no treatment currently.


wiz9999

Look at third world countries. I'm from south america, I get literally any medication there at a fraction. They price it according to market ability to purchase.


Mike_1121

One other thing to note is that if you did pay out of pocket it would be tax deductible. So you'd get a nice refund come tax time.


pig_newton1

Even if I went to the US to pay for it?


Mike_1121

Absolutely! Halfway down[ this page](https://www.canada.ca/en/revenue-agency/services/tax/international-non-residents/canadian-residents-going-down-south.html): >Medical expenses paid in the U.S. > >You can claim eligible expenses that were paid for you, your spouse or common-law partner and certain other dependents. You can claim eligible medical expenses paid in any 12-month period ending in the year if they were never claimed in any other year.


fran_banane

What is the eye disease? Is it Thyroid Eye disease?


pig_newton1

Stargardt disease. It affects about 1 in 10,000 ppl


DMTDildo

China will sell almost any raw pharmaceutical product to anyone...


pig_newton1

Would to love to buy it from China but it’s not a generic or anything. It’s newly invented drug called gildeuretinol