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When Health Insurance Makes You Sick

Recent changes have had a tremendous and far reaching impact on what health insurance companies charge and how much they cover for services provided. Migraineurs are not only living with extreme pain but are now dealing with enormous stress and anxiety related to no longer being able to afford the effective medications they have taken for years. They may also be cut off from accessing FDA-approved treatments for migraine. As someone experiencing this, I am left wondering if the purpose of my health insurance is to insure that I’m sick.

Quantity limits

I’ve never had to choose which days will be my ‘well days” and which days I will have to be bed-ridden. However, in recent months, perhaps in response to the STOP act, my health insurance company placed arbitrary quantity limits on medications I have been taking for years. Literally, I have been taking these same medications – at the same dosages – for over five years. Now my health insurance company has decided they will only cover 1/6 of the amount I’ve been taking. Of course, I could pay out of pocket but that would cost me nearly $600 a month.

Like many others, I received sudden notice of this decrease in allowed quantity and was left struggling to manage my pain with only a fraction of regular medication. This situation causes a great amount of stress which is a classic trigger for many migraineurs.

Botox: New limits and increased cost

Some insurers have decided to place a strict limitation on the frequency of treatment. For those of us who have been taking Botox for years, we may have found that by 12 weeks, the efficacy wears off and that 10 weeks is far more effective. The 10 week cycle has been covered for years. Personally, if I am forced to switch to a  12 week cycle, the final two weeks will be accompanied by a dramatic uptick in migraine severity, often leaving me bedridden. Additionally, my health insurer has placed Botox in a different category of medication, which means my out of pocket cost has tripled. This is a key part of my migraine treatment protocol, and I’m unsure how we will afford such a massive expense.

Guinea pigs are we: Gammacore and CGRP

With newly FDA-approved treatments for migraine like Gammacore and CGRP, health insurers are slow to decide whether and how much to cover. For instance, even though Gammacore has been FDA-approved for migraine, I was denied coverage on the basis of a “lack of scientific evidence.” This is illogical given the fact that FDA-approval is based on scientific evidence. I was given the device on a trial basis – just long enough to learn that it was effective for me – and then was denied coverage for it by my health insurer.

Similarly CGRP, which holds great promise for many with migraine, is being given out for free on a two-month trial basis. However, after the trial, there is no telling whether health insurers will cover the expense. We do know that at almost $7000 per year, the expense is likely out of reach for most if not covered by insurance companies.

Appeal and appeal again

After you’re finished stomping around and yelling at the walls, the best recourse for dealing with an insurance company denying coverage is to file appeals. And then when you get denied, because you most likely will, appeal again. Make certain to gather as much evidence to support your case as possible. This will include a list of your medications, a history of your visits to your migraine specialist, a letter of support from the specialist, and your own statement documenting your need. It may also help to reach out directly to your appeals analyst and speak with them by phone. They often have a harder time turning you down if they speak with you in person and remember you are an actual person.

Be flexible

It is truly infuriating to have to find a new solution when we already have something that effectively manages our pain. However, with all of these changes in cost and limitations, it is possible that your appeals will be declined in the end. As hard as it is to consider, we might have to adjust our treatment approach during this difficult time, or face the equally daunting challenge of finding the money to pay out of pocket to continue to receive the old, effective treatment.

Are you having challenges with your health insurance company? How are you handling these changes?

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

  • swhiteCT
    12 months ago

    I am on Medicare and have limited income for paying out-of-pocket costs. I have chronic daily migraine disease. My pain used to be 24/7 at varying levels of level 5 to 8 over the course of the day. After 2+ years of 12-week Botox injections and bi-monthly nerve blocks my daily migraines have been reduced to an average daily of level 5 with approximately only 2 of those days reaching level 6 to 8. My level 9 headaches have become almost non-existent. It has been a very long and painful process. My headache specialist would like me to have more quality of life and feels we can achieve more progress over time.

    I have been able to receive the 2-month free trial of Aimovig and part of me hopes I do not achieve positive results so that I do not face the decision of not to continue. I already take several high tier drugs for other health issues. Adding another is just out of the question.

    My specialist has been slowly preparing me for the inevitable impact that new insurance guidelines and healthcare legislation will have on my treatment. With this information on the cost increases I am facing discontinuation of my migraine treatment as well as some of my other medications. Today’s visit was the most depressing visit so far. The word “may” have an impact on my ability to afford my treatment changed to “most likely”. The stress over this impending impact is exacerbating my associated depression. I fear that all the progress that has been achieved will be for naught.

    I am incensed that those who have their no or low-cost insurance paid for by the taxpayers, or insurance and pharmaceutical company executives, can legislate and control treatment to those who need it most, but can least afford it. I am very concerned by what all this means to the future of my health. My feeling is that affordable healthcare and medications to the older persons are purposely being targeted so that life spans are shortened. That way insurance and pharmaceutical companies bottom lines can increase and assistance programs can be slashed. We are not longer being viewed as individuals in need but as statistics. Is anyone else finding themselves with this dilemma?

  • Holly Baddour moderator author
    12 months ago

    Hi swhiteCT- Thanks so much for chiming in to share your story. I wanted to let you know you’re not alone and, indeed, we’re in a very similar situation. I also have chronic daily migraine which is helped by Botox. Like you, the Botox decreases the severity of the Migraine attacks but not the frequency.

    I also am trying the Aimovig. I wanted to ask you a clarifying question about one of your statements. You mentioned not being able to afford your migraine treatment (as well as some of your other medications). If you are talking about Botox, I wanted to share some information that I learned in the past week.

    First, while Aimovig is not crazy about patients taking both their drug AND Botox concurrently, it is not a a strict rule. Just for your information, the reasoning the company uses as to why they don’t want patients to take both drugs at once is two-fold. First, during their clinical trials, they did not allow patients to take Botox while taking their drug- so their interaction hasn’t been studied. Second, there is some evidence that Botox works to block the same protein as Aimovig (CGRP)- and there haven’t been studies to show the impact of two drugs addressing the same issue on this front. At any rate, it is possible to still get Botox while you’re getting Aimovig, you just might need your doctor to write a letter of support to help things along.

    Now, onto the issue of affordability. Botox has recently (for many insurance companies) become more expensive due to the way it’s being filed. I’m not sure if this is the case for you, but if it is suddenly out of reach financially for you, it is worth your while to reach out to the Botox company. The drug company is offering a few different programs to make their medication affordable. Look up Botox Savings Program online to see if you’re eligible. From my understanding, there are various and helpful options to help people like you and me to continue getting this treatment regardless of cost.

    I hope this might be of help to you. Although time consuming, my understanding is that other drug companies (not all, but some) offer similar savings programs that are worth exploring.

    We are thinking of you. Stay in touch and let us know how things go. So glad you are a part of our community!

  • swhiteCT
    9 months ago

    Holly, I am so sorry that I have not responded to your message sooner. I do not actually log into my account very often; just usually read the newsletter and maybe respond to a survey or blog. I am happy to report at this time time that I am receiving both the Aimovig and the Botox treatments, along with bi-weekly nerve blocks for occipital neuralgia and fibromyalgia trigger points at the back of the head and shoulders. That is not to say that Medicare will not catch up to me the beginning of the new year, as they only approved me for a 4 month prescription (on top of the 2 months trial from the Aimovig manufacturer). My headache specialist was on the Board of Specialists during the Aimovig trials and knows first hand what the restrictions were. He is of the mindset that both treatments work symbiotically and feels that the insurance companies have yet to buy into that fact. He feels that my particular case needs both treatments because at each step of treatment the new drugs offered additional improvement to the current treatment, If one is removed I would most likely experience reduction in relief. I have discussed with him what I would consider to be the treatment I would forfeit if it came down to making a choice, but he said he first will continue to fight for all of my current treatments before it comes down to that. I am not sure how it will all play out. I am very lucky to have him in my corner, but we will see how far Medicare is willing to bend, if at all. Hopefully, I will have good news to report after the beginning of the year. — Susan

  • marycr8on
    1 year ago

    It isn’t just opiods that have to have a pre-authorization. I had colon cancer and ever since, I’ve needed medication for constipation and acid reflux. I’ve had to fight with the insurance company to cover those too, even when I’ve just had a change in dosage. It’s getting ridiculous, the insurance companies have more control over our health care than we or or doctors do, now. We need to revamp the healthcare industry in this country. I agree with Holly, it does seem like the insurance companies are in the business to keep us sick!

  • Kate
    1 year ago

    Thankfully I’ve only seen one recent impact on my healthcare, although it was a big one. I’m on daily opioids for my constant 12-year-long NDPH headache. My insurance apparently has a rule new for this year that all opioid prescriptions beyond a certain point require a prior authorization. This showed up in March, so I’m guessing it was after 2 prescriptions/year, when they would assume it is chronic not acute pain.

    They gave no warning, despite me having this same insurance and the same exact pain prescriptions every month for years. It ended up taking a full week to get the prior authorization through my doctor, insurance, and pharmacy, and that was with me following up daily.

    Luckily I had an emergency stash saved up, which is actually technically not allowed. I can’t imagine all the patients affected by this that may have gone into withdrawal and had uncontrolled pain. Everything eventually got approved and I’m all good for 1 year. No clue what the criteria were, but thankfully I met them. Unfortunately I won’t get back my depleted emergency stash though, as my doctor is not allowed to do anything like that. I’m hoping I can get the prior auth preemptively next year before it is actually required. Good luck everyone!

  • Holly Baddour moderator author
    12 months ago

    Hey Kate- I’m in a similar boat to you in that any surplus that I had was wiped completely out when my insurance company cut the allowed amount of opioid medications by two thirds. Similarly, with no warning. My migraine specialist and I tried desperately to write appeals and were denied four times over. It took four months of sorting out this mess, and my having to significantly cut back on the medications I’d been taking for 8 years (with incredibly painful results), and my doctor and I were able to find some alternative medications to address the deficit. The whole process was infuriating.

    I’m so glad your situation was addressed through prior authorizations which were approved eventually. I hope you do get that taken care of in advance next year to avoid a repeat of what you just went through!

    Please stay in touch and so glad you’re a part of our community!

  • marycr8on
    1 year ago

    It isn’t just opiods that have to have a pre-authorization. I had colon cancer and ever since, I’ve needed medication for constipation and acid reflux. I’ve had to fight with the insurance company to cover those too, even when I’ve just had a change in dosage. It’s getting ridiculous, the insurance companies have more control over our health care than we or or doctors do, now. We need to revamp the healthcare industry in this country. I agree with Holly, it does seem like the insurance companies are in the business to keep us sick!

  • Holly Baddour moderator author
    12 months ago

    Hi @marycr8on– Gracious this is horrid to hear though unfortunately not entirely surprising. I’m so sorry you’ve been having to fight for medications necessary for your healing from colon cancer. Other countries seem to have figured this out, so we could improve our ways, if only those in charge of our country were truly interested in doing so. So glad you’re a part of our community- and always glad when you chime in! Please keep in touch!

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