When I found out that insurance didn’t cover a medication I really needed

In 2015, I asked my neurologist about non-oral migraine meds I could try. Most of the time when I get a migraine, I don’t end up vomiting, but it had been happening a little more than I was used to, so I wanted to have a backup plan in place. I’d tried injections before and the injector machine (sorry—I don’t know the official term) ended up making my skin swell at the site, so I stopped using it.  This time I was really interested in a nasal spray.

To my happiness, the medication she prescribed, Zomig, works wonderfully. I even wrote a full article about my experience with Zomig for this site. Since I had surgery in early 2015, I hit my insurance deductible well before the end of the year, so in late 2015 I was stocking up on as many available refills as I could while they were still “free” (I hate claiming they were no cost when you and I both know how much money we spend on insurance premiums and other health fees).

Unfortunately, the Zomig refills I had stock piled were out by early spring of this year. I had done mostly fine without the Zomig, taking oral triptans with pretty consistent success in most cases.  But I got a multi-day series of migraine attacks in early March that left me throwing up even after I had emptied my stomach. I felt completely awful.  One day, Jim wasn’t home and I texted my parents to see if they could help. I knew I could find some relief if I could get my hands on some Zomig instead of an oral triptan, which I’d just throw up.

My dad went to the pharmacy to pick up the drug for me. He called while he was there and said, “Honey, your insurance doesn’t cover this. You get a 50% discount, but even after that it’s $171 for just six doses of the medicine you need.” I was in la la land with migraine brain and kept trying to make him check with the pharmacist to ensure they had my correct health insurance information.  “Yes, they have your insurance information. But this isn’t covered.”  “No, but it is. Even name-brand drugs should be just $10,” I insisted, remembering the times I’d gotten it before.

Then I realized that insurance hadn’t fully covered Zomig previously—it’s just that I had already met my deductible during the previous times I’d filled it, and their 50% discount shaved off $171 and they covered the rest. But only because I’d already spent tons of money out of pocket.

“But listen, honey,” my dad continued. “You can get a tablet instead, or a little capsule that dissolves under your tongue. That’s a lot less expensive.”

“But I can’t do that,” I tried to explain through tears. “The reason I need this particular medication in this form is because I can’t stop throwing up, so taking oral medication won’t work for me. I have to bypass my GI tract completely.” I think it took a minute, but he understood.

I nearly cried. I didn’t have $171 to spend, so I thought about just trying to stick it out. But gosh, did I feel awful, and gosh, was I tired of not being able to move without crying out in pain and/or vomiting.

Of course you might guess the end of this story. My sweet dad bought the me the nasal injections of Zomig and I didn’t have to pay him back. I’m guarding the remaining nasal spray devices and trying to avoid using them as much as possible.

Earlier this week when I had a migraine, he texted and said, “Need free meds?” “What do you mean? Are you a drug runner for the black market or something?” Then I realized he was offering to refill my Zomig for me again, on the house.

Have you ever had a crazy expensive wake-up call when it comes to prescription drugs? Have you ever had a family member or friend bail you out when you’re in a migraine emergency? Share your story in the comments below. 

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (30)
  • Pat
    2 years ago

    I recently aged up into the Medicare program, and it is the worst possible scenario for getting my Zomig. Last year , with a copy of $150, I got 12 pills for 3 months. At times, not enough pills to cover the migraines, but I stockpiled over the years to make it work. Now, I would have to pay $575 for 6 pills, and I have Part d prescription drug coverage that I pay $79 per month to have over and above what I for Medicare Part A . I also have supplemental insurance for Part B, which is every month also. I don’t understand why I cannot use any of the discount programs for my migraine meds. Every one of them has Medicare as an exclusion. I am trying to make the pills from last year cover my current needs, but I am so nervous I will run out. A friend told me to just start going to the ER when I have migraine pain I cannot control due to a lack of meds, and send those bills to the insurance. They will soon see how much it costs , and maybe the rescue meds would be more cost beneficial. I am so sick of being told what I can do by insurance companies.

  • RockyMtnGuy
    2 years ago

    The trouble with a severe migraine is that your stomach shuts down as well as your brain, and none of the meds get through to your brain until the migraine is over – which can be 3 days later. Before the triptans came out, I would eat handfuls of aspirin, which can and does cause stomach bleeding. Three days later, my stomach would be full of three days worth of aspirin tablets, and I would be vomiting blood. So realistically, you need to inject it for a really severe migraine. Sumatriptan is also available in nasal spray form, but that’s not as good. Nowadays you can get it in a jet injector which is better because it doesn’t use a needle. The fundamental problem is that insurance companies don’t want to pay for all this high tech medicine, although for migraines it works extremely well.

  • rebecca
    2 years ago

    My insurance paid for Zomig but I still had like a $60 copay, and at one point I waited to fill the prescription until I’d hit my deductible so I didn’t have to pay hundreds of dolars.

    I stopped getting triptans when I finally admitted they weren’t working anymore and never had, really. But I’m glad they work for you!

  • MareV
    2 years ago

    I love your Dad. He is awesome.

  • seagypsy
    2 years ago

    I had insurance under the ACA last year (I had been laid off) and my coverage had no issues with Relpax (9 pills a month for $60.00 copay). Not horribly expensive and it worked. I, in no way, think that 9 pills is enough, but that is what the insurance will cover. This year, same plan, co-pays for medical changed a bit for doc’s visits, etc, but same coverage over all. Went to fill the Relpax prescription – $489!! Now, the only difference is I have a full-time job and I paying the whole amount of my premiums and there is no way that should make that big a difference. The insurance company has just decided that they are not covering that drug at that level any longer. I had hoarded some pills (don’t we all?), but then had to have my doc switch me to something else that had a generic hoping it might work and be covered. It’s another triptan and it seems to be working, but with the added stress of a new job, I am having more attacks (because that is what they are) and they have changed from my regular migraines. They are worse than ever and there is no back-up med for me right now. I had been doing so well. I normally don’t wish ill of people, but I would love to wave the migraine wand over the people on the “risk-assessment” board at the insurance companies and give them all a week’s worth of the worst migraines they could ever have; maybe a little more empathy would help.

  • lerickson82
    2 years ago

    I have kind of a comment/question. I think we are all looking forward to the new class of drugs that are being tested now and will be available in a couple years. Do you think that we will all have issues getting insurance coverage for it though? Or will there be a long lag time before it’s covered. It’s sad to think that something better will be available but only some/few will be able to get it.

  • DonnaFA moderator
    2 years ago

    Hi Lerickson. That’s a really good question, and it does help to be prepared. The Texas Medical Association tells us that we do have options and gives some information on What to Do When Your Insurance Company Says “No”. And don’t forget about drug specific PAPs, and the organizations listed in Patient Prescription Assistance Programs: Help Getting Your Medication.

    Thanks for being here! -All Best, Donna (Migraine.com team)

  • akilman
    2 years ago

    I was short on medicine for so long I still hoard it even though I finally get enough to go month to month.

  • DonnaFA moderator
    2 years ago

    Hi akilman! We’re glad to have you here! We have a couple of articles that you may be interested in that discuss Prescription Programs to help you with the expense. Check out Patient Prescription Assistance Programs: Help Getting Your Medication and Prescription Assistance Programs for information on where and how to apply. Thanks for being part of the community! -All Best, Donna (Migraine.com team)

  • ddnben
    2 years ago

    I am just curious and didn’t see a clear answer here. Won’t a dissolvable pill work as it enters without going to the stomach? I take Zofran that way for my nausea. And I completely understand if it doesn’t work for you and having your meds switched or having to pay more out of pocket because of insurance. I am just usually grateful if I can get the doc to prescribe anything dissolvable and not a pill.

  • DonnaFA moderator
    2 years ago

    Hi ddnben! Thanks for being part of the community and for your question. We don’t have any articles on the site to explain the sublingual delivery system, but I did find SUBLINGUAL MUCOSA AS A ROUTE FOR SYSTEMIC DRUG DELIVERY published by The International Journal of Pharmacy and Pharmaceutical Sciences, which may help. We’re glad you’re here! -All Best, Donna (Migraine.com team)

  • akilman
    2 years ago

    Some medicines are absorbed through the mucosal membranes, but my doctor explained to me that my dissolving triptans still had to pass through the GI tract to be absorbed by the body. Swallowing the dissolved pill may be easier (the taste is enough to trigger problems for me) than a whole pill, but it still has to stay in the stomach long enough to be absorbed.

  • menopausalmigraineur
    2 years ago

    Your Dad sounds wonderful! Unfortunately triptans increase my chronic depression to suicidal proportions after thirty some years of use. Max-alt used to not be covered,but was one of THE most effective because it dissolved under the tongue. And the mention of the phenergan is spot on. Those of us who use to be treated in the Emergency room for the virulent pain and puking normally got a Demerol and seconal or phenergan cocktail injected. The Demerol basically just made you not care you were in that much pain the phenergan or seconal helped kill the nausea and let you sleep through the worst of it.

    IV DihydtoErgotomine will still kick a classic migraine’s butt a lot of the time. And you can get the ampules and inject yourself. I don’t find the nasal spray at all effective and never have. But with insurance on Medicare supplemental. I now pay over $350/mo for 4 vials so I hoard this rescue drug. It’s cheap to make and actually works on two of the conditions I have…one not even related to migraine and yet I can’t afford to get my full 10 dose prescription. Even at that there are limits to what can be taken. My copay for Botox is over $300 so I am saving up for that and filling out the paperwork so the doctor can get a supply in for me from the company. But all of this is less expensive then my cobra coverage was in 1992 when I was first disabled and fired from my job. Medicare didn’t cover prescriptions and my insurance was $800/mo with my prescriptions running $1000 per month and I couldn’t interrupt them or drop coverage or I would lose it. Needless to say, we went bankrupt and our house was foreclosed and my parents had to take us in. We were lucky they were still alive at that point. Family is everything.

  • RockyMtnGuy
    2 years ago

    The triptans don’t actually cause clinical depression, they just don’t do anything to stop it. It is likely that you have clinical depression and – lucky you – antidepressants can prevent migraines. I noticed the link between migraines and depression when I started taking triptans – the headache and vomiting would go away, but I still wasn’t happy. If you are in excruciating pain and vomiting your guts into a toilet, you could understand why you were unhappy, but when your head starts to feel good and your stomach feels good, why would you still feel unhappy? I am normally a happy person so I just take a couple of drinks and wait for the unhappiness to go away, which takes about as long as for a migraine to go away. One time my wife’s psychiatrist (she has been hospitalized with clinical depression) misdiagnosed me with depression, from which I deduced I had a silent migraine (migraine without the headache), hit it with some sumatriptan, and the symptoms went away except for the unhappiness, which told me something about the diagnostic skills of my wife’s psychiatrist. I am normally somewhat on the other end of the mood scale from clinical depression and have learned the hard way that anti-depressants are a really big no-no for me.

  • DonnaFA moderator
    2 years ago

    Hi, menopausalmigraineur, and thanks for sharing your story with us. It’s wonderful that your family was able to help you and terrible that medical costs put you in that position.

    There is a PAP you may want to consider for financial assistance with with IV DihydtoErgotomine, Xcel Pharmaceuticals PAP includes D.H.E. 45. There are several PAPs which assist with Migranal, but you indicated that you didn’t find it to be efficacious.

    Also, http://www.needymeds.org/brand-drug/DrugSearch/botox also has a PAP for Botox, which may be able to supplement the PAP your physician recommended.

    Thanks for reaching out and for being part of the community. -All Best, Donna (Migraine.com team)

  • Adamsgran726
    2 years ago

    Thank goodness for Dad! My parents have had to help me out a few times with meds. My daughter was diagnosed with Type 1 diabetes at age 3. With her meds & supplies & my migraine meds, we spent a small fortune. 15-20 years ago, we both had prescriptions that we had to pay out of pocket. More things are covered now, but we have both run into problems with insurance. But who hasn’t?

  • amityville
    2 years ago

    Dear Migraine Girl;
    I have another idea for you as far as meds to try if you want, and it works wonders for me. I take “Promethazine” it is generic for “Phenergan” and when ever I had nausea or vomiting, I would take this and it would do the job. you should be able to ask your Neurologist for the {RX Prescription}. I seen this and thought I would drop you a line or two. hope things work out for you in the future.
    Signed;
    Wayne Brake

  • Kpandes
    2 years ago

    I’ve used Cambia as my Plan B rescue med for a couple of years until my insurance company stopped covering it. However, I found out about the manufacturer’s discount program and can get one box (9 packets) per month for $20; otherwise the list price can be almost $500/box. It’s really still not enough, but it’s something! It is always a happy day when my Cambia arrives in the mail.

    Here’s a link to their coupon program:
    http://www.cambiarx.com/cambia-savings-programs

    If that doesn’t bring down the cost enough after your pharmacy applies it, then the manufacturer has a $20 flat rate discount program that your pharmacy should be able to access. If not, try QuickCare Pharmacy in Rancho Cucoumonga, CA; they’ll ship it to you.

  • 2 years ago

    Isn’t it a shame that we must ration and hoard our emergency drugs? My Relpax cost $251 for 6 tablets. Enough to give me heart failure on top of chronic migraine. It’s gotten to the point that insurance is really now just an expensive discount membership and not truly insurance.

  • RachelRoo
    2 years ago

    It’s my amazing neurologist who has been the knight in shining armor for me regarding expense. First back in the day he always used to send me home with a few ‘samples’ (I’ve been on the Zomig nasal spray for a while too, it truly is amazing stuff, it works so well and so fast!). The samples were just so I’d have an extra spray or two on hand, we already knew the medication was the right one for me, and it was well appreciated.

    Where he really came through for me though was with Botox injections. He wanted to try them on me as soon as the FDA approved them, but we know the gap between FDA approval and insurance coverage took about a year or more for most plans. So the first thing he did for me was get me in as a ‘training subject’ for a session held at NIH where a large group of neurologists and headache specialists were learning the Botox protocol by observing already trained doctors administer the injections to patients. My first Botox treatment was in a room with a mini stage as a group of about 30 or so doctors huddled around while the doctor giving the injections lectured the group about what she was doing, what was important about each site, etc. I actually got light headed and we had to pause to do some deep breathing…the combo of the unexpected level of pain and the surreal experience of being watched must have made me go a little faint! We look back on it with amusement now, but it was a free Botox treatment and it was fairly successful!

    After that my insurance still wasn’t covering, so my neuro kept giving me the treatments by saving up the unused toxin from other patients and having me just pay him a small amount for the ‘service’ but pay nothing for the actual substance. (This might sound gross or weird but obviously it was safe, Botox is pulled out of a bottle and into fresh syringes each time it is used, so nothing that was used on me had ever been contaminated, promise!) He just really went out of his way, and always has, to get me the very best treatment out there regardless of expense or insurance, I feel very lucky and always have!

  • 2 years ago

    Your neuro must have ms y patients he treats with Botox. I was told that it has a very short shelf life so my old neuro would only consider it for me once he had more patients that needed it. Go figure. He’s not my Dr. Anymore.

  • Linda
    2 years ago

    I stockpiled Migranol when I had insurance that covered it. When I had to quit work because of migraine, I no longer had good insurance and had to get it from the open market. I was told it was over 3,000 for 8 doses. When it came time to renew insurance I looked for one that would at least cover some of the cost. Now I am also on Lyrica daily as a preventive which is about $500+ with my insurance for a one month supply. Sorting this all out is enough to give one an attack.

  • Piglet
    2 years ago

    I wanted to try Migranal but my migraine specialist did not have any samples. So I took my prescription to the pharmacy and it was $900 with insurance. They would only sell it by the case! I just wanted to try it once! What is the deal with that?

  • DonnaFA moderator
    2 years ago

    Hi Linda! You’re absolutely not alone there, dealing with insurance is definitely frustrating.

    Hopefully, this will be good news, Valeant has a Patient Assistance Program, and Migranal is included on the list. Pfizer’s RxPathways may also be able to help you with Lyrica.

    We also have a great article, Saving Money on Migraine Treatments which offers some alternatives.

    Please know that you’re not alone, we have a great community here, and we’re always here to share information or just to listen and commiserate. -All Best, Donna (Migraine.com team)

  • Sunrider
    2 years ago

    I know the feeling. I’m almost out of my Maxalt, but I’ve barely touched my deductible. I’m dreading filling it for the first time. It will be about $80. Then once the deductible is met, only about $12 (if the prices haven’t changed). I did the same thing last fall and got all my refills filled before 31 December.

    Question though for you. I understand you’re wanting to avoid the oral-swallow-it type meds. But I take the the Maxalt ODTs. “Oral Disintegrating Tablet. You know how heart patients put nitro glycerin pills under the tongue because it gets into the bloodstream faster? These do the same thing. It’s like a styrofoam pellet I put under my tongue and it dissolves in a minute or two – nothing to swallow. Might be worth considering trying if your insurance charges less for that kind.
    And your dad rocks.

  • Ddw
    2 years ago

    DHE injection worked wonders for me since I’m one of those migraine patients that tradition medications don’t work for me. I had to get it from a specialty pharmacy. My insurance had been paying all but $10.00, until I went in one day and they said my insurance didn’t pay for it anymore. My cost would be $750.00. Needless to say I couldn’t afford it anymore. I take toradal injections and insurance covers it. Now my doctor told me he wouldn’t write my subscription for it. Now I have to find another doctor that will write me a subscription for it.

  • 2 years ago

    Yup. Old neuro approved Botox last year and gave me a referral. Tried it and it didn’t seem to work but was told the benefits are cumulative. I wanted to try again. Old neuro said he would be offering it soon and I was to get the records from Botox doc. Got the records but old neuro still gave excuses. Found a new neuro that offers it but he’s waffling too! Started me on beta blockers which do seem to be helping. Moral: it pays to switch doctors if yours isn’t helping you any more.

  • rebekka4684
    2 years ago

    I am so sorry that your insurance is not willing to cover the medication you so desperatly need. I switched insurance providers a bit over a year ago and still have so many refills of Imitrix and Maxalt at home (both generics) that I still don’t even know if I might run into a problem once I have to refill with my new provider. Fingers crossed. I consider myself very lucky that my PCP is very willing to prescribe whatever I ask for and I was able to obtain 8 pills of each medication per month. Yes, my insurance provider recommended that I’d start taking something preventative – but they didn’t know that I basically started hording the medication I need so badly without actually taking it that frequently. I was stocking up my supply out of fear. Now, 1.5 years later I still have plenty of triptanes, however, one thing that I also noticed was that taking half the dosage of Imitrex and dissolving it in my mouth very slowly actually worked equally well – if not quicker – and my supply was shrinking a lot slower too. I’m not sure if this is an ethical approach but no one ever told me not to do it. I was able to circumvent the digestive system and it just tasted a bit funny. The insurance system in the U.S. is definitely scary and challenging at times but let me tell you, moving here from Germany it’s been a blessing as physicians are at least willing to prescribe the medications I need. This is a major improvement for me and I just hope that as time passes more patents will expire so that generics become available and treatment will be affordable no matter what type of medication we need.

  • Nicole
    2 years ago

    Earlier this year I had to pay out of pocket for a month because my benefits administrator did not set my Cobra up in a timely fashion– over $550 for the 2 drugs I take daily to prevent my migraines. Once my coverage was in place, it took multiple back-and-forths with my provider to get them to reimburse all the money beyond the co-pays that I had to pay up front.

    And then they raised the co-pay on one of my medications this month. It went generic last year so I already have had to jump through all the hoops to get them to continue to cover it at the former co-pay rate. Now, it is “non-preferred” and they suggested I change to the (more expensive list price) extended release version that is preferred. Because to them switching medications (mostly) preventing my chronic migraines is a game apparently.

  • Tamara
    2 years ago

    Yup understand completely … even though I have insurance meds still cost me over $300 a month. Tramacet – nope not covered, T3s – nope not covered. long acting propranolol because its the only one without lactose that I’m severely intolerant too – nope not covered. name brand imitrex lactose free but generic is not – nope not covered. But botox only costs me $25 so some good in it.

    And most recently and worse yet … imitrex tabs are starting to not work on my migraine because it are coming too fast. I tried the nasal sprays and OMG!! they are god sent!! … life was getting back to normal (still $20 a dose after insurance and using at least 6 a month but still, I could function). And they are unavailable by the manufacturer at this moment!! I have zero and they wont be back in for at least 2 months!! :'(

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