Author Topic: My wife's medication costs $5,000 a month  (Read 10420 times)

Glyph

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My wife's medication costs $5,000 a month
« on: May 19, 2015, 03:18:09 AM »
There's this great disease called multiple sclerosis, in which your brain attacks itself, causing progressively more and more disability as the damage accrues. So far, my wife has had three "attacks", two of which involved going partially blind in one eye. In all three cases, she recovered. However, the more attacks she has, the more damage her brain has taken and the more likely it is she won't recover from an attack. Thus, it is really fucking important she take a medication that slows down the progression of the disease so she ends up able to see and walk and things like that.

That drug is Tysabri and, under my health care plan, it would cost about $5,000 a month.

Bit of background: I am a medical student and she was a software engineer. We had some savings beforehand ($25K) and accepted her salary was going to be put towards my schooling and our living expenses. She had great health insurance so her drug costs were very low. To keep my parts operating, I take a passel of generics that cost around $100/month, plus doctor's visits to keep all the levels in check. So at the outset we were only spending a few hundred a month on our medical needs. (FYI, none of them are preventable with lifestyel changes. The only thing that will fix my depression besides medication and therapy is the eventual bullet I put in my head.)

Then she lost her job. Now she has COBRA, which costs $1500/month. We could use my school's health insurance, which is around $289/month, but doesn't cover any MS medication at all. Meanwhile, she's frantically looking for a job (no luck so far) and I can't really get another job while in med school, at least, not one that will net $1500 a month. Shit's hard, yo, and I am trying to keep up and not fail out. Repeating a year at $50K a pop because I was trying to make a little money on the side is idiotic.

...and she was diagnosed, out of the blue, when she was 38.

So I want to put this out here. It's very difficult to retire at 40 when you have other life plans or when life has other plans for you. For now, we hope she gets a new job with better insurance or I take out more loans. The alternative, where she doesn't take medications at all, is...horrifying.

MsPeacock

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Re: My wife's medication costs $5,000 a month
« Reply #1 on: May 19, 2015, 04:31:27 AM »
I'm so sorry - for everything that you and your wife are going through.

Can you purchase health insurance through ACA? I think losing your health insurance coverage is a qualifying event. Secondly, your wife may consider applying for SSDI - (which often takes 3-4 times through to get approved, from what I've seen). This would give you income until she either gets back to work, or worst case scenario, is unable to return to work.

What year of medical school are you in - e.g. how much longer until you start internship/residency and can count on some regular income and health insurance benefits?

I am well past 40 - obviously not retiring at 40. There is lots of helpful information here too about debt emergencies or creative problem solving for financial binds.

I'm a red panda

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Re: My wife's medication costs $5,000 a month
« Reply #2 on: May 19, 2015, 07:33:14 AM »
I don't know if this will work for you, but sometimes if you contact the drug companies and show hardship you can get discounts on the medicine. 

Do you have an out of pocket maximum on her health insurance plan?  For me, if something cost $5,000 a month, I would soon reach the out of pocket maximum and then I wouldn't have to pay anymore.  So maybe it isn't as bad as it seems?
« Last Edit: May 19, 2015, 07:50:15 AM by iowajes »

catccc

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Re: My wife's medication costs $5,000 a month
« Reply #3 on: May 19, 2015, 07:42:26 AM »
I'm so sorry for your hardships. 

At your income level (which sounds like nothing right now) might you or she be able to qualify for medicaid?  Check out your state's website.

Is she getting unemployment benefits right now?  Might you guys qualify for other social programs that can help out with expenses?

swick

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Re: My wife's medication costs $5,000 a month
« Reply #4 on: May 19, 2015, 07:43:10 AM »
I am so sorry you and your wife are going through this. My best friend has MS and the attacks are really scary. She is on a full regime of drugs but also has had some success with diet and lifestyle changes. Mostly because if she can support her body as much as possible, she is much less likely to have an an episode. Stress and pushing past her limits seems to trigger it, as does not eating properly. It seems like MS is all about management and trying to avoid the episodes which cause damage faster.

Have you looked into diet and natural support? There is a pretty good TedX talk by Dr. Terry Wahls. https://www.youtube.com/watch?v=KLjgBLwH3Wc

Of course, taking your meds is super important - but I don't think it is an either/or situation and most recommendations as far as diet for MS are healthy anyways, so your wife has nothing to lose by trying them.

Wishing you both the best


bogart

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Re: My wife's medication costs $5,000 a month
« Reply #5 on: May 19, 2015, 07:58:07 AM »
Do you have an out of pocket maximum on her health insurance plan?  For me, if something cost $5,000 a month, I would soon reach the out of pocket maximum and then I wouldn't have to pay anymore.  So maybe it isn't as bad as it seems?

I think the ACA does now require that Rx drugs be included in the OOP maximum -- but some (many?) health plans used not to include them, and those that are grandfathered are still not, I think, required to do so.  So, may or may not apply to the OP's current plan.  That said, finding an ACA plan that is subject to this restriction seems like it might help -- the OOP restriction total for 2015 is $6,600 for an individual, so as noted, well under $5K per month (of course the premium paid for the insurance itself does not count toward that $6.6K limit).

OP -- I'm sorry you and your wife are having to deal with this; I don't know lots about MS but know enough to know it's a brutal disease.  I hope she is able to access the care that she needs, and that it slows the progression of the MS.

mskyle

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Re: My wife's medication costs $5,000 a month
« Reply #6 on: May 19, 2015, 08:03:41 AM »
Seriously, look into ACA insurance, and find out what the out-of-pocket maximum is for your plan. If there's any chance you're actually going to end up paying $60,000 a year for this medication, you can do better on an ACA plan. It's not the open enrollment period, but loss of job or loss of insurance is a qualifying event for getting on an ACA plan. You absolutely do not need to pay $1500 a month for good health insurance. I know you probably can't move right now because you're in medical school, but if you're in a state that won't offer you Medicaid it's worth considering moving to one that will.

MS sucks. I'm really sorry you guys are going through this. But it doesn't have to cost as much as you're afraid it's going to.


jackiechiles2

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Re: My wife's medication costs $5,000 a month
« Reply #7 on: May 19, 2015, 08:11:57 AM »
Sorry for your wife too.  A good friend of mine got diagnosed with MS in law school.  One of the most brilliant and good-hearted people I know.  Insurance was a big concern for him when he was diagnosed-almost as much as the physical issues he was facing.

 You need to check out healthcare.gov.  Since your wife lost her job, you can sign up now because you suffered a life changing event.  Since you likely have little income from being in med school and your wife has no income from being laid off, you'd probably qualify for a subsidy.  I'd look into those plans ASAP before I'd spend $1500 a month.

chubbybunny

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Re: My wife's medication costs $5,000 a month
« Reply #8 on: May 19, 2015, 08:37:59 AM »
I don't know if this applies to you, but my mother signed up for a BCBS silver plan from healthcare.gov and her prescriptions are included in her out of pocket max.  For her individual plan that was only $1500!  Best deal in the world for her.  By March she has spent it all up and Rx for the rest of the year is covered at 100%.

forummm

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Re: My wife's medication costs $5,000 a month
« Reply #9 on: May 19, 2015, 09:52:23 AM »
Yes, go to healthcare.gov and see what's available for you. Since she just lost her job she's eligible for a special enrollment period for 60 days. With your very low income, the plan will be very affordable. Depending on the state you live in and the exact income numbers, she will either be eligible for Medicaid (free or close to free and high level of benefits) or a private plan with a tax credit to cover a lot of the premium cost and cost sharing reductions (so copays are very small--like a few bucks). She should select a silver plan to get the cost sharing reductions. With your income, it should be lower copays and no or low deductible than even a platinum plan. The premium should be around 2-3% of your income.

frugaldrummer

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Re: My wife's medication costs $5,000 a month
« Reply #10 on: May 19, 2015, 10:01:07 AM »
Also, look into the following:

1)  www.lowdosenaltrexone.org   - very inexpensive, off-label use of an old generic drug, which was proven in a double-blind placebo-controlled study to slow the progress of M.S.  Doesn't work for every person but it's cheap, easy, safe, and I've seen some people respond miraculously.  And no, your doctor doesn't know about it because it's cheap and off-patent so there is no phalanx of pharmaceutical reps coming to his door to market it.

2) Vitamin D - very important to keep levels above 50, may reduce episodes, usually takes about 5,000 IU/d where I live to get people there

3) 100% Gluten-free diet - even if she doesn't test positive for celiac disease, I find gluten-sensitivity is at the bottom of many autoimmune diseases

4)  Check B12 levels - should be above 400 (although the lab says 200-900 is normal, anything under 400-500 is suspect).  B12 deficiency can mimic M.S., even producing the characteristic MRI findings. 

And I agree with the others above, you should easily be able to have a ACA plan that has a max on out of pocket expenses.  If they just don't cover that particular drug, fight for a prior authorization or contact the manufacturer for compassionate use.

pdxbator

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Re: My wife's medication costs $5,000 a month
« Reply #11 on: May 19, 2015, 10:12:58 AM »
Have her look at getting disability. It may take a couple applications, and it may be worth hiring a lawyer to help with this process. My sister in law did that and got disability. Here in Oregon we have excellent coverage for those that qualify. Since you aren't yet into your residency when you go looking for your residency maybe think about which states might have the best resources for her.

Axecleaver

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Re: My wife's medication costs $5,000 a month
« Reply #12 on: May 19, 2015, 10:33:01 AM »
In addition to the suggestion to apply for Medicaid, be aware that folks in your situation may qualify for Medicaid due to high medical bills, even when you have other insurance and even when you have assets and income. You should definitely apply for it. Coverage under Medicaid is free, and there are also programs to help you pay your premiums (if it's cheaper for the program to do so).

Also take a look at ACA plans.You will hit the max OOP pretty fast, and usually the platinum plans are a better deal for people who hit the max every year. They come with lower deductibles, lower copays and lower max OOP limits in exchange for higher premiums. If you liked your old plan, shop for it on your state's Exchange, it's highly likely it will be much less expensive than COBRA.

Norrie

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Re: My wife's medication costs $5,000 a month
« Reply #13 on: May 19, 2015, 10:46:35 AM »
I'm so sorry to hear that you're going through this. I looked up some patient assistance programs that might be helpful for you. (Scroll down for Tysabri.) I read up a tiny bit, and it seems like many folks have really benefited from the patient assistance program, and that it's not incredibly hard to qualify for. Best of luck!

http://www.mymsaa.org/about-ms/sources/

What it says:

Tysabri
Program name: MS ActiveSource
Phone: (800) 456-2255
Website: www.tysabri.com

MS ActiveSource will assist patients in the following ways:

Most individuals with private insurance will be eligible for a $0 co-pay assistance program. There are no income requirements for the program; however, income information will need to be provided in order to enroll. There may be an annual cap that limits the amount of assistance that you can receive over one year (based on income or if medication is received at an out of network provider). Individuals may also receive assistance from Biogen for certain infusion related costs. *

Individuals on Medicare who need assistance can call in to speak with a representative about other ways to receive help.

Uninsured individuals may be eligible to receive Tysabri for free; there is an undisclosed financial criterion.

Biogen offers insurance counseling services that can assist patients in understanding their available insurance options with the goal of ensuring everyone has affordable access to therapy. Some of the possible health insurance options are: Health Insurance Marketplace, Medicaid, Medicare Part D, Medicare LIS, Medicare Supplemental Plans, Private Insurance, COBRA and Dependent Coverage. We will work within your specific situation and help identify affordable health insurance options as well as financial assistance options, as needed.
Individuals may also receive assistance from Biogen for certain infusion-related costs.

*Federal and state laws may prevent eligibility. People covered by Medicare, Medicaid, the VA/DoD, or any other federal plans are not eligible to enroll. In addition, some insurance providers may prevent eligibility or restrict eligibility to people with demonstrated financial need. If you are not eligible or not sure of your eligibility, please call (800) 456-2255.

forummm

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Re: My wife's medication costs $5,000 a month
« Reply #14 on: May 19, 2015, 11:04:37 AM »
Also take a look at ACA plans.You will hit the max OOP pretty fast, and usually the platinum plans are a better deal for people who hit the max every year. They come with lower deductibles, lower copays and lower max OOP limits in exchange for higher premiums.

Sorry to be repetitive, but it's important to make sure you look at the silver plans, since for the income you provided, those will be better than platinum and lower cost.

southern granny

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Re: My wife's medication costs $5,000 a month
« Reply #15 on: May 19, 2015, 12:50:40 PM »
although losing employer coverage does qualify you to apply for ACA, since she has already signed up for cobra, I don't think she can apply for ACA until the open enrollment period.  What I read said that if you have already signed up for cobra then you have insurance and can't apply until open enrollment.  Maybe Medicaid would be an option.  Medicaid rules vary a lot from state to state.

yandz

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Re: My wife's medication costs $5,000 a month
« Reply #16 on: May 19, 2015, 12:51:03 PM »
Just want to second what Norrie posted - I work in med device and we help patients regularly.  Don't be afraid to apply.

Axecleaver

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Re: My wife's medication costs $5,000 a month
« Reply #17 on: May 20, 2015, 09:02:41 AM »
Quote
although losing employer coverage does qualify you to apply for ACA, since she has already signed up for cobra, I don't think she can apply for ACA until the open enrollment period.

Losing a job is a Change of Circumstances and permits you to shop for insurance outside the open enrollment period, whether or not you take the COBRA option. You have 60 days from the event to enroll. Dropping your COBRA coverage also qualifies as a change of circumstances, so if you're outside the 60 days from your job loss, you could actively withdraw from COBRA, and that would qualify you for enrollment with a new, 60 day special enrollment period.

Forummm said:
Quote
look at the silver plans, since for the income you provided, those will be better than platinum and lower cost.
It depends. You're right about the Silver plans possibly being better because of cost sharing options,and the premiums are lower. But, compare all the plans to see what's going to be best in this specific circumstance. With high Rx costs, a platinum plan that has this drug on its formulary list for $25 may be a better option than a lower cost silver plan where he has to pay $1000 a month for the prescription.

forummm

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Re: My wife's medication costs $5,000 a month
« Reply #18 on: May 20, 2015, 10:13:55 AM »
Quote
although losing employer coverage does qualify you to apply for ACA, since she has already signed up for cobra, I don't think she can apply for ACA until the open enrollment period.

Losing a job is a Change of Circumstances and permits you to shop for insurance outside the open enrollment period, whether or not you take the COBRA option. You have 60 days from the event to enroll. Dropping your COBRA coverage also qualifies as a change of circumstances, so if you're outside the 60 days from your job loss, you could actively withdraw from COBRA, and that would qualify you for enrollment with a new, 60 day special enrollment period.

Forummm said:
Quote
look at the silver plans, since for the income you provided, those will be better than platinum and lower cost.
It depends. You're right about the Silver plans possibly being better because of cost sharing options,and the premiums are lower. But, compare all the plans to see what's going to be best in this specific circumstance. With high Rx costs, a platinum plan that has this drug on its formulary list for $25 may be a better option than a lower cost silver plan where he has to pay $1000 a month for the prescription.

Yes, look at the options. But the point I keep trying to make is that the cost sharing reductions for low income individuals are only available with the silver plan, and in some cases (e.g. near 150% FPL like OP) make the cost sharing LESS than the platinum plans. My brother for example has the silver plan but his copays are $3 (reduced from $25 due to low income) and his deductible is $350 (reduced from $2000). And this only works with silver plans.

https://www.healthcare.gov/glossary/cost-sharing-reduction/
https://www.healthcare.gov/lower-costs/save-on-out-of-pocket-costs/
http://kaiserhealthnews.org/news/070913-michelle-andrews-on-cost-sharing-subsidies/
http://kff.org/health-costs/issue-brief/cost-sharing-subsidies-in-federal-marketplace-plans/

Dicey

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Re: My wife's medication costs $5,000 a month
« Reply #19 on: May 26, 2017, 09:05:58 AM »
This is a necropost, but for some reason it was at the top of my unread posts list this morning. I read it, not realizing it was old. I'm so impressed at the quality of the replies and was posting just to compliment everyone who contributed when the warning popped up. Now I'm wondering how the OP and spouse are doing.

Its odd that this popped up so randomly. Fingers crossed that boosting this thread is helpful to someone, somewhere.

lemonde

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Re: My wife's medication costs $5,000 a month
« Reply #20 on: May 28, 2017, 02:00:11 PM »
^ Hopefully. Although hopefully this thread is also read by any of the many opponents of universal healthcare and such. There are plenty of people in the OP and spouse's shoes who'd be panned as complainypants if we got a glimpse of their savings without having the medical history along with it.

urover

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Re: My wife's medication costs $5,000 a month
« Reply #21 on: May 29, 2017, 08:47:32 PM »
I don't have much advice, except that you should probably read this book "Brain Maker - The power of gut microbes.." It is an eye opener and may help with your wife's health in some manner.

bigchrisb

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Re: My wife's medication costs $5,000 a month
« Reply #22 on: May 29, 2017, 11:41:30 PM »
^ Hopefully. Although hopefully this thread is also read by any of the many opponents of universal healthcare and such. There are plenty of people in the OP and spouse's shoes who'd be panned as complainypants if we got a glimpse of their savings without having the medical history along with it.

Knowing a bit about this disease makes me pretty grateful for the Australian health care system.  It's not universal free healthcare, but there is a universal drug subsidy.  Means that regular treatment for diseases like this in the Australian system are $38 a month, rather than $x000. 

I didn't realise the value of that safety net until I saw it working first hand.  Subsidised drugs and 13 years of free (plus another 5 of subsidised) education are a pretty huge help from a system.  Makes me (less) angry about my current tax burden. 

LeRainDrop

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Re: My wife's medication costs $5,000 a month
« Reply #23 on: May 31, 2017, 12:37:08 AM »
This thread is really old.  The OP hasn't been active on the forum since May 19, 2015.