Author Topic: Very Expensive Medications: Who else needs them?  (Read 6649 times)

monstermonster

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Very Expensive Medications: Who else needs them?
« on: May 04, 2015, 01:10:15 PM »
Hey all-

I'm starting on a medication that clocks in at more expensive than my monthly salary (Enbrel, which runs at $2,800/month), though luckily at the moment it's covered in a large part by insurance, it's still unreasonably expensive, obviously, but it's my last and best option for treating my arthritis. I'm worried about the inevitable day I stop having insurance or have to switch plans- this medication is for life if it works. At the moment there's no expectation it'll get cheaper as it's a biologic medication, and is subject to different laws than those applicable to chemical formulations so generics are nearly impossible to produce.

I'm wondering how many other mustachians are on really expensive medications for long-term conditions (diabetes, autoimmune disorders, HIV, cancer, Hep C, etc...) and how this affects their spending and saving. Storytime?

Blonde Lawyer

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Re: Very Expensive Medications: Who else needs them?
« Reply #1 on: May 04, 2015, 01:18:17 PM »
I have Crohns.  I take Pentasa which is a non-generic pill.  At my old dose it was $1000/month without insurance.  With it is $45/month.  Current dose $500/month w/o ins. and still $45 with.  My Crohns absolutely plays a huge role in what health plans I can be on and what jobs me or my husband can take.  Particularly, pre-ACA.  Things might be different now but we haven't tested it.  Basically, I avoid high deductible plans or plans that have coinsurance.  I'm less worried about my current meds and more if I end up needing Humira or Remicaid.  Last I checked, Rem was $10,000/month.  20% co-insurance would be absolutely unaffordable. 

Also, on some plans, catastrophic limits do not include prescription coverage.  Something to watch out for. 

Roxysmart360

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Re: Very Expensive Medications: Who else needs them?
« Reply #2 on: May 04, 2015, 02:15:33 PM »
I am sorry to hear about the situation you are in, from what I know I offer the following for you to research and take to your doctor:

There are several biosimilars that will be competing for the Enbrel market soon, they will most likely be able to push the price down as they offer an alternative to the name brand. They are not on the market yet, though you could ask your doctor to look into other biologics with similar indications, Humira comes to mind. Otherwise I am assuming there is a clinical trial for the biosimilars as they have to prove safety and efficacy. Perhaps look into that if you live close enough to the test sites you could get a few months of care covered by the company offering the trial. Also note, that with all biologics, each product is unique due to the fact that it is produced in a uniquely developed cell line owned by the pharma company. While other biologics have the same indications and overall effect, they are not generics like you can make with aspirin or zyrtec. This is why with any biologic you could find that your body only tolerates a specific brand due to an immune reaction.

If the drug becomes unaffordable, I believe that most pharmaceutical companies have patient help lines where you can call and they will work with your insurance to make sure you are covered. If you are concerned that this may be the case, look into that as well.

Hope this helps :-)

Axecleaver

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Re: Very Expensive Medications: Who else needs them?
« Reply #3 on: May 04, 2015, 02:16:55 PM »
I have an expensive medical condition, which guarantees I hit the out of pocket max on my insurance every year. With health insurance exchanges, it's now very easy to do analysis on the plans each year to pick the right combination of premiums, copayments and out of pocket maximums. I usually put together a simple spreadsheet with the variables in it, plug in the numbers, and pick the plan which is the lowest total cost.

The good news is that with the ACA, you never need to fear living without insurance. If you're aggressive about keeping your income down, you will qualify for subsidies or possibly free through Medicaid. If your lifestyle is more extravagant, then you'll still be able to afford a plan right up until Medicare kicks in, for a few hundred dollars a month.

Blonde - you should shop the Exchange, too. When i went self employed in 2013, I got a much better plan for less out of pocket than I had with my employer, even including their subsidy. With tough conditions, the high copays, coinsurance and OOP max eat you up.

rubybeth

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Re: Very Expensive Medications: Who else needs them?
« Reply #4 on: May 04, 2015, 02:25:54 PM »
My sister is Type 1 diabetic, and my husband has psoriatic arthritis. Both of them are covered by employer insurance. My sister may not retire early, my DH will probably retire somewhat earlier than most. They'll shop our state's insurance exchange and get coverage for prescriptions. Thankfully neither can be denied coverage because of these conditions. :)

MsPeacock

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Re: Very Expensive Medications: Who else needs them?
« Reply #5 on: May 04, 2015, 05:47:59 PM »
My doctor prescribed me a new med for migraines (many others tried, none worked). He gave me 4 samples. Meds worked great. I went to get rx filled.  $75 per pill after insurance. Rx was for 10 pills. I didn't fill the script. I don't get migraines too often and although they last 3-4 days they are usually not incapacitating. So, that is what I do. I don't fill the rx.

Recently diagnosed with a gout like illness and will need long term meds. I am on nothing else. The day after I filled the script I got a call from my insurer offering their "prescription coordinator" services.


Exflyboy

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Re: Very Expensive Medications: Who else needs them?
« Reply #6 on: May 04, 2015, 07:32:36 PM »
Looking at some of the Republican candidates views on the ACA make me very concerned at the long term viability of the ACA.. Lets hope it stays.

justajane

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Re: Very Expensive Medications: Who else needs them?
« Reply #7 on: May 04, 2015, 07:53:57 PM »
There's someone in my family who has a rare but fatal neurodegenerative disease. She has thankfully been able to control her symptoms in the meantime (mostly seizures) with a drug used in Canada and Europe but not yet approved by the FDA for treatment of the disease she has. For this reason, I believe it costs at least 100K a year. Clearly they are not paying this, but I'm not sure how they get it covered. Perhaps she is involved in a clinical trial.

Exflyboy

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Re: Very Expensive Medications: Who else needs them?
« Reply #8 on: May 04, 2015, 08:02:16 PM »
If the drug gets approved by the FDA it will probably more like $200k here in the land of the free!...

squatman

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Re: Very Expensive Medications: Who else needs them?
« Reply #9 on: May 04, 2015, 08:44:39 PM »
I have no experience taking prescription drugs, but I used to do consulting in this field. If you haven't done this already, the biggest thing I'd suggest is to look into copay cards/coupons/assistance programs. Enbrel's is here: http://www.enbrel.com/ENBREL-support-card-program.jspx. Is this jump big because you were previously on methotrexate? If not, have you been through the other brands beyond methotrexate (Humira, Xeljanz, etc)?  Obviously your treatment and side effect management come first, but all things being equal it may be worth seeing if you can get that 2,800 closer to 50.

Blonde Lawyer

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Re: Very Expensive Medications: Who else needs them?
« Reply #10 on: May 04, 2015, 10:16:11 PM »
Peacock,

You can ask your pharmacy to do a partial fill and get just one or two pills. Also, if you need it rarely, your doc might just keep giving you samples. 


dantownehall

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Re: Very Expensive Medications: Who else needs them?
« Reply #11 on: May 05, 2015, 08:50:03 AM »
I have no experience taking prescription drugs, but I used to do consulting in this field. If you haven't done this already, the biggest thing I'd suggest is to look into copay cards/coupons/assistance programs. Enbrel's is here: http://www.enbrel.com/ENBREL-support-card-program.jspx. Is this jump big because you were previously on methotrexate? If not, have you been through the other brands beyond methotrexate (Humira, Xeljanz, etc)?  Obviously your treatment and side effect management come first, but all things being equal it may be worth seeing if you can get that 2,800 closer to 50.

I'm on Humira for Crohn's, and the co-pay discount card is pretty great - mine went from $2300 down to $5.  I still hit the OOP maxes due to all the other things that go along with crohn's, but that's life (my life, anyway).

Blonde Lawyer

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Re: Very Expensive Medications: Who else needs them?
« Reply #12 on: May 05, 2015, 09:10:41 AM »
I have no experience taking prescription drugs, but I used to do consulting in this field. If you haven't done this already, the biggest thing I'd suggest is to look into copay cards/coupons/assistance programs. Enbrel's is here: http://www.enbrel.com/ENBREL-support-card-program.jspx. Is this jump big because you were previously on methotrexate? If not, have you been through the other brands beyond methotrexate (Humira, Xeljanz, etc)?  Obviously your treatment and side effect management come first, but all things being equal it may be worth seeing if you can get that 2,800 closer to 50.

Yeah, for all the people suggesting OP try Humira, I don't think it is any cheaper than what he/she is already on.
I'm on Humira for Crohn's, and the co-pay discount card is pretty great - mine went from $2300 down to $5.  I still hit the OOP maxes due to all the other things that go along with crohn's, but that's life (my life, anyway).

Sibley

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Re: Very Expensive Medications: Who else needs them?
« Reply #13 on: May 05, 2015, 09:57:28 AM »
+1 on checking insurance options through ACA. It can't hurt, and might help.

Hoberto

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Re: Very Expensive Medications: Who else needs them?
« Reply #14 on: May 05, 2015, 09:59:09 AM »
Patient assistance programs for prescription medications are usually very generous.  For example, the copay card for patients with commercial insurance brings the monthly cost to $10. You can get it from Enbrel's website.  Enbrel is covered by Medicaid now.  Medicare pts are the ones who are most screwed, but if they are low income (150% of poverty level) there is some assistance available.  The cut-off for uninsured patients is usually 300% of poverty level.

I usually use needymeds.con to find programs.  I've never had any issues getting the meds unless the paperwork isn't complete.

When you look for a new insurance plan it'll be worthwhile to investigate the formulary prior to company and plan selection.  These are almost always available by googling.  If not, a call to the company will get it faxed or emailed to you.

justajane

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Re: Very Expensive Medications: Who else needs them?
« Reply #15 on: May 05, 2015, 11:21:18 AM »
A lot of the issues listed here are preventable and reversible.  If the cost of the meds are so extraordinarily high and only treat, not fix, the issue, why not look at ways of helping the body heal itself?

Look up Dead Doctors Don't Lie.  The body is made to heal itself. But just about everyone is deficient in the nutrients, primarily minerals.  If your body is deficient in the basic building blocks, how can it possibly function correctly?

Yuck. This stinks. Basically you are saying that people must not be trying hard enough, else they would be healed.

I hope at least that my relative's genetic disorder is viewed by you as immutable. Or would she live a full life instead of dying in pain if only she could just get the right minerals?

dantownehall

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Re: Very Expensive Medications: Who else needs them?
« Reply #16 on: May 05, 2015, 11:50:28 AM »
A lot of the issues listed here are preventable and reversible.  If the cost of the meds are so extraordinarily high and only treat, not fix, the issue, why not look at ways of helping the body heal itself?

Look up Dead Doctors Don't Lie.  The body is made to heal itself. But just about everyone is deficient in the nutrients, primarily minerals.  If your body is deficient in the basic building blocks, how can it possibly function correctly?

What is unfortunately neither preventable nor reversible is the sort of ignorance and arrogance that assumes the speaker knows all about everyone else's medical conditions, and exactly how they can be treated.

EDIT - Just noticed the link in your signature.  It seems you are actually more of a vitamin/mineral shill than just an actual terrible person.
« Last Edit: May 05, 2015, 11:54:57 AM by dantownehall »

MayDay

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Re: Very Expensive Medications: Who else needs them?
« Reply #17 on: May 05, 2015, 12:35:40 PM »
Well, I was going to come in and complain that my H takes Crestor @ 150$ a month, but I guess that isn't too bad!

Crestor goes generic in 2016 so we are pretty pumped about that.  It will likely take a few years for it to come down to as cheap as Lipitor is since there is a phase in generic period where only one generic manufacturer will be producing, but still, every little bit helps.

That price is with the manufacturer discount card, btw.  I can't remember how much it is without the discount. 

Blonde Lawyer

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Re: Very Expensive Medications: Who else needs them?
« Reply #18 on: May 05, 2015, 01:29:45 PM »
To the "heal thyself" shill - there is some truth to what you say.  I don't believe everything doctors tell me and I have figured out on my own some very important changes to my diet to keep my condition in check.  Being gluten free and dairy free was key for me.  I still need maintenance meds though and I will always have insurance that would make biologicals affordable to me if I needed them.  I recognize that my changes are not a cure.

Since we have opened that can of worms, OP, have you ever tried a nightshade free diet? My husband had GI issues for many years before we finally figured out that nightshades were his trigger.  The most common side effect to nightshade intolerance mimics arthritis so no one in the medical field thought to suggest it when all of his symptoms were GI related.  Nightshades are tomato, potato, peppers, eggplant, paprika and tobacco. 

I wanted to say that earlier but didn't want to be "that person."  Since I also have an autoimmune condition and take expensive meds hopefully you will read it in the correct vein and not in the "OMG here is your cure!!!" way.  More like, "can't hurt to see if this helps."

Squashy

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Re: Very Expensive Medications: Who else needs them?
« Reply #19 on: May 05, 2015, 09:29:10 PM »
I have no experience taking prescription drugs, but I used to do consulting in this field. If you haven't done this already, the biggest thing I'd suggest is to look into copay cards/coupons/assistance programs. Enbrel's is here: http://www.enbrel.com/ENBREL-support-card-program.jspx. Is this jump big because you were previously on methotrexate? If not, have you been through the other brands beyond methotrexate (Humira, Xeljanz, etc)?  Obviously your treatment and side effect management come first, but all things being equal it may be worth seeing if you can get that 2,800 closer to 50.

I'm on Humira for Crohn's, and the co-pay discount card is pretty great - mine went from $2300 down to $5.  I still hit the OOP maxes due to all the other things that go along with crohn's, but that's life (my life, anyway).

Spouse has Crohn's and is on Remicaid, $700 every 2 months, of which $300 is reimbursed by the drug company. Lots of these expensive drugs have "coupons" you can get enrolled for pretty easily. Annual colonoscopies starting in early 20s also adds up, plus you never know when a flare/worse might happen, so we are planning for Spouse to probably have super-awesome gold-plated $$$ insurance for the rest of his life.

neophyte

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Re: Very Expensive Medications: Who else needs them?
« Reply #20 on: May 05, 2015, 09:57:41 PM »
I have a friend with Lupus.  I don't know what he takes, but I know his life very much used to focus around finding employment where he could get good health insurance and then staying healthy enough to keep the job.  He said salary didn't matter when he was looking for work because he easily used more in health benefits than he could possibly earn in a year.

Axecleaver

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Re: Very Expensive Medications: Who else needs them?
« Reply #21 on: May 06, 2015, 12:31:12 PM »
Quote
Crestor @ 150$ a month

There are may generic statins available, some for $4/month through Walmart. Here's a good rundown of the generics:

https://www.consumerreports.org/health/resources/pdf/best-buy-drugs/StatinsUpdate-FINAL.pdf

monstermonster

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Re: Very Expensive Medications: Who else needs them?
« Reply #22 on: May 06, 2015, 01:04:56 PM »
The good news is that with the ACA, you never need to fear living without insurance. If you're aggressive about keeping your income down, you will qualify for subsidies or possibly free through Medicaid. If your lifestyle is more extravagant, then you'll still be able to afford a plan right up until Medicare kicks in, for a few hundred dollars a month.

Blonde - you should shop the Exchange, too. When i went self employed in 2013, I got a much better plan for less out of pocket than I had with my employer, even including their subsidy. With tough conditions, the high copays, coinsurance and OOP max eat you up.

The issue with the ACA is that 21 states didn't take the Medicaid expansion, which means that if you have a very low income you not only don't get insurance, you also don't qualify for a subsidy on the federal exchange because your income is too low.  Having been on my state's medicaid,exchange plans AND employer sponsor coverage all in the past 1.5 years, I will say that medicaid is suffering from horrendous administration issues (it took 10 months of calling, and many many hours of being on hold to get them to cancel the plan, which was causing issues because it the same HMO as my employer plan.)

The other issue with the exchange is that you don't qualify for the subsidies if your employer offers insurance, so even if you can get a better deal than work (as long as their plan passes ACA requirements), you don't qualify for the subsidies.

monstermonster

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Re: Very Expensive Medications: Who else needs them?
« Reply #23 on: May 06, 2015, 01:09:07 PM »
Thanks for all the stories, by the way, folks. At the moment, my co-pay is affordable for me so I'm not going to worry about it until I have to cross a new insurance bridge. I was mostly curious how other folks have dealt with it.

For the person who asked if I was on methotrexate before - it didn't work for me/side effects outpaced therapeutic effect- so I was on sulfasalazine. That also failed to work. So now the big guns.

I am not going to respond to any posters who have suggested other drugs/diets/vitamins/positive vibes for treatment for me. I wasn't looking for medical advice, I was looking for stories of other folks with high medical costs but interest in FIRE.