What is the cost of your anti-rejection medicine?
November 19, 2021 9:10 AM   Subscribe

I live in the United States and my prescription for my transplant anti-rejection drug is very costly. I'm curious about what transplant recipients in other countries pay for their immunosuppressants.

Out of pocket, my one anti-rejection medication (Prograf, name brand) costs between $14,000 and $36,000 a year, depending (I believe) on the whim of the pharmacist, because different pharmacists quote me wildly different prices, even at the same pharmacy. I have good health insurance so my personal cost is lower, but I have to argue with them annually about getting access to the name brand, which is not part of my question. In the process of these repeated conversations with pharmacists, my doctors, and my insurance company, I have become very interested in what transplant recipients in other parts of the world pay for their anti-rejection medication.

I tried googling but didn't really find satisfactory results. I know that there are some people here who have transplants who might be able to tell me how much their medications cost out of pocket. I'm interested in any anti-rejection drugs, not just Prograf (tacrolimus).
posted by twelve cent archie to Health & Fitness (18 answers total) 1 user marked this as a favorite
So, if we make an assumption that you’re taking 0.2mg/kg and weigh 100kg (just to go high, also math is easier), at 20mg pd, you’re paying $11,300 for a generic from CanadianPharmacyKing.com (they’re not just a bunch of randos; they’re certified by the Canadian gov’t etc.; I use them for meds no longer available in the US). You may be able to pay less from within the US. They also show pricing from manufacturers in different countries if available.

Tldr; not an answer to your original question, but throwing that out there.)
posted by executive_dysfuncti0n at 9:28 AM on November 19, 2021

In England, this will be at most £108.10 annually for a prescription prepayment certificate which will save money if you need more than 11 prescriptions per year. You may possibly get it free if you're eligible for an exemption certificate. In the rest of the UK, (Scotland, Wales and Northern Ireland) it will be free as they don't have prescription charges.
posted by knapah at 9:35 AM on November 19, 2021 [5 favorites]

Hey there, transplant friend, I've seen you around! :)

I'm also in the US and I'm under 65. As a kidney transplant patient, I have access to Medicare for the first three years of the transplant. I have a good but expensive Cigna Plan F supplement for Part B, and a separate United Health Care pharmacy plan to cover Part D/pharmacy. My monthly insurance premiums run about 150 for Medicare, 405 for the Part B supplement, and 30 or so for the Part D.

Anti-rejection meds (in my case, 4 mg of Envarsus daily, which is similar to the prograf, plus mychophenelate/myfortic, the latter of which I'm not taking right now while we wrangle with my immune system) fall under Part B, so right now I pay nothing for those. I also take 5 mg of prednisone daily, which is under part D, and I think that's like $18 every 90 days. I took prograf before and it's also Part B.

Starting in 2023, US kidney transplant patients (and I think other types as well?) will be able to get modified pharmacy access to Medicare Part B to help with Part B drug coverage. I haven't seen anything yet on how much this coverage will cost, or if a supplement will be needed. But it was a wildly successful bipartisan bill passed for the very reason that transplant patients can't afford the high drug prices so they stop taking the meds and their transplant fails.

My transplant team has a whole internal department for insurance and money stuff. Have they been any help at all?
posted by mochapickle at 9:42 AM on November 19, 2021 [8 favorites]

These are the prices the health service pays on behalf of folks eligible for medical card in Ireland = about half the adults. There are several line-items for your drug; here's one option for ballpark
88241 PROGRAF CAPS TACROLIMUS 5MG n=50 €409.07
posted by BobTheScientist at 9:53 AM on November 19, 2021

Oh! I found my Medicare EOB.

30 days of 6 milligrams of Envarsus (not sure the equivalent to prograf) - $1094
30 days of myfortic - $498
posted by mochapickle at 9:55 AM on November 19, 2021

Best answer: For tablets, the NHS (across the UK) pays £80.28 for 50x1mg tablets. For infusion, it's much more expensive, at £584.51 for 50mg. Price to the patient is as described by knapan, for tablets. Infusions are at no cost to the patient anywhere in the UK.
posted by ambrosen at 10:13 AM on November 19, 2021 [1 favorite]

Best answer: Poland, the price for a patient is 3.20 PLN (less than a dollar) for a 30-pack of the 1mg and 16.07 (just under $4) for 30 x 5mg. Full price if you're a foreigner or have worked really hard at not having national health insurance (aka are an adult without a job, not retired, haven't registered with the job office, don't pay your own premiums, aren't disabled and aren't married to someone who's insured via one of the above methods) is 113,27 and 579,22 PLN respectively. Can't find a current infusion price but it was about $1 per 1 mg in 2018, free to the patient. And yes, this is all brand-name Prograf.

I guess if the 20mg/day calculation above is correct, it works out to about 782 PLN per year to the patient, under $200 per annum (or around $6800 if you're uninsured). Did I mention the very concept of US healthcare scares the hell out of me?

(For the curious: health insurance contribution is 9% of more or less gross salary if you have a job. If you're self-paying this year, it's under $100 per month. If you're a child, registered unemployed, disabled etc, the state pays. Health services are very strained, with long queues for non-urgent stuff, but they generally manage. Most people middle-class and higher supplement with reasonably priced private care, about an extra $100 per month.)
posted by I claim sanctuary at 10:44 AM on November 19, 2021 [3 favorites]

Best answer: Calgary, Alberta, Canada.

Prograf, 500 x 1 mg: $0.

In Alberta (but I assume elsewhere in the country, as provincial health care systems are meant to operate to the same standard), there's a set of medications that are listed in the Special High Cost Drug program, which includes things like Prograf as well as cystic fibrosis drugs, chemotherapy drugs, etc. Medications that are expensive but life-saving. They are dispensed through this program; I have to go to a hospital to get the medications from the pharmacy, but every three months, I call ahead for a refill, walk in, say my name and they hand me a paper bag containing thousands of dollars worth of pills. There's a reason we picked Tommy Douglas, father of Medicare, as the Greatest Canadian.

I asked back in the day (when the Advagraf patent ran out) about generics, but my transplant doc at the time said that they were sticking with the name brand stuff because the generic had potentially too much variability in dosage (the pills could vary from the specified dosage by something like +/- 10%). Amazing that getting a two-a-day pill down to a one-a-day pill took so much research and development it was almost the exact amount of time that the two-a-day pill was under patent protection; what are the odds?

Anyways, that's more of an exception than the rule (although if I remember correctly, Myfortic was also under the program). Most prescription drugs are not free; that said, the non-group coverage here (if you don't have an employer's plan) is $63.50 per month, with prescription copays at 30%, capped at $25. With my employer's coverage, a three month refill of the stuff I'm on (azathioprine, prednisone, septra/bactrim, a few others) is under $100.
posted by Superilla at 12:04 PM on November 19, 2021 [1 favorite]

California, Anthem Blue Cross, Prograf (Tacrolimus, though I think we are on the generic now, the surgeon approved that a year or so back), .5mg capsules, filled by mail order with OptumRx, I think it is maybe a maximum of $20 for a 90 day supply.
posted by ericales at 12:38 PM on November 19, 2021

Response by poster: Fascinating, and I really appreciate these answers. To be clear, I am not having trouble affording my medicine (I have good health insurance coverage). I became very curious about how much this drug costs out of pocket outside of the United States after my most recent routine tussle with my insurance company and doctors over paying for the drug. Every time I hear my annual out-of-pocket price tag here I just feel like I'm falling into a hole (even though I don't have to currently pay it), because who can afford that! So that piqued my curiosity.
posted by twelve cent archie at 1:28 PM on November 19, 2021

In BC Canada. My spouse's middle of the road extended health plan (an add-on to government insurance) caps out of pocket expenses for all drugs combined at $1000 annually so even if the drug wasn't already covered via the high cost drug plan that's the maximum we'd pay.

My plan, which my employer pays for when I work more than 120 hours in a month and otherwise I pay $68/month for, caps annual costs at I believe $2500. My spouse's plan kicks in first so I'm not positive on that number but it's in the ball park of that amount.

With no relatively expensive drugs prescribed to us we usually don't even hit that limit because my plan covers 90% of book costs before the cap so our out of pocket costs are generally less than $100/month except when wildfire smoke forces us to buy multiple inhalers that have book costs of over $1000.
posted by Mitheral at 2:28 PM on November 19, 2021 [1 favorite]

Best answer: Oh, I have another transplant drug:

Valganciclovir in Mexico, out of pocket, was quoted at the farmacia as $2000/USD for 60 tablets. Which is bananas, because that same amount here in the US per my EOB is like $400.

Every time I hear my annual out-of-pocket price tag here I just feel like I'm falling into a hole (even though I don't have to currently pay it), because who can afford that!

Just for fun this past month, I added up what my out-of-pocket costs of care + meds would have been for the past 5.5 years had everything not been negotiated down VERY dramatically by Medicare and other insurance, and I stopped at $5 million. Like really, no joke. Someone actually wrote down numbers that cumulatively added up to five million dollars and handed them over straight faced for payment.

No one can afford that.

It's sort of an odd bit of information to be living with.
posted by mochapickle at 4:33 PM on November 19, 2021 [5 favorites]

The prices in Denmark for Prograf are in the table near the bottom of the page here. The estimated price per dose is about $20-$30 for capsules and $100 for an infusion.

That being said, the public health system won’t let anymore pay more than about $3,000 a year for prescription medication—anything after that is completely covered.
posted by whitewall at 9:50 PM on November 19, 2021 [2 favorites]

I don’t take this, but I looked it up for France. The prices are as listed below:

43,46 euros (50 gélules à 0,5 mg).
86,50 euros (50 gélules à 1 mg).
429,73 euros (50 gélules à 5 mg).

However, it’s 100% reimbursed by the social security so the cost to the patient is zero. As for Poland, above, you have to either be a tourist or work really hard to not be covered, social security coverage is basically universal.
posted by ohio at 11:16 PM on November 19, 2021 [2 favorites]

Best answer: In Ireland, your cost would be €114 per month or €1368 per year ($1,282) for all of your drugs. We cap pharmacy costs at that monthly amount for everyone. Additionally, I assume but don't know for sure that transplant recipients are entitled to a medical card, which makes all drugs and all doctor and hospital visits free. In that case there would obviously be no charge.
posted by DarlingBri at 4:16 AM on November 20, 2021 [1 favorite]

Best answer: My husband takes Prograf, and we're in the UK. The NHS is usually keen to save as much money as possible on medication, but he is prescribed the named brand and not a generic, at his transplant team's insistence. I imagine there's something about that pharmaceutical form that isn't replicated in the generics.

The cost to the NHS appears to be up to £296.58 per 50 capsules, depending on dose. The cost to the patient is the prescription charge, which for a transplant patient aged under 60 and with no exempt conditions would be £9.35 per item or (more likely) £108.10 per year flat rate. The prescription charge is not related to the cost of medication.

My husband has an exempt condition (a blood cancer) so pays nothing. Being a transplant recipient isn't by itself sufficient to get you prescriptions free of charge in the UK.
posted by altolinguistic at 8:29 AM on November 20, 2021 [3 favorites]

(oops - in the parts of my comment that relate to charges, for "the UK" read "England" - as knapah points out above, prescription charges apply in England and not in Scotland, Wales or Northern Ireland)
posted by altolinguistic at 8:38 AM on November 20, 2021

In Australia, if a medication is covered under the government subsidy for pharmaceuticals, the cost for a month’s supply is maximum $41.30 AUD or $6.60 for pensioners/low income earners. I don’t have too many transplant patients but I think most would be on the PBS. Once you hit an overall threshold for money spent on pharmaceuticals out of pocket in a calendar year the rest are at reduced cost.


Example: https://m.pbs.gov.au/search.html?term=tacrolimus&search-type=medicines
posted by chiquitita at 3:24 AM on November 21, 2021 [1 favorite]

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