Uninsured migraine sufferer walking across old bridge

Uninsured with Chronic Migraine: Advocacy in the Face of Off Odds

Navigating the hoops and hurdles of chronic migraine can be a full time investment. From hospital and doctor’s bills, to high prescription prices and searching for care that actually works — living with this disease can be a lot of work, on top of the pain it can cause.

Barriers

Not only is it a lot of work to exist with chronic pain, but there are also a lot of barriers to wellness and health, in general. One huge barrier to care for a lot of migraine patients is the financial toll it takes. It can be really expensive to be ill, and some of us just can’t afford to keep up with or pursue our care as well as we should.

Uninsured and in pain

Recently, I lost my health insurance coverage under my family’s healthcare plan, and am now uninsured with chronic pain. I have already seen drastic changes to my accessibility to care, which for me means that I have to make my own drastic changes and pursue advocacy for myself even further, in order to maintain the level of care I am used to.

Adapting to changes

One of the immediate changes I noticed right after becoming uninsured, was an almost 300% price increase (y i k e s) for some of my migraine prescriptions. The first time I went to pick up medication after becoming uninsured, I was shocked—and thrust into action. My medications had luckily been written for months out after I knew my coverage would end, so I reasoned that would at least give me time to learn more about where to go next.

Advocating for myself

I realized rather immediately that I was going to have to try to be proactive in advocating for myself in this new arena, because if not I risk more pain-filled days without relief and worsening condition. While I knew that my care was going to be expensive, I wasn’t expecting that high of an increase, and truth be told, it was already a big financial strain when I had insurance.

Taking my own advice

I knew my next step was finding ways to lower the costs of my life-saving medications in order to continue my care. I previously wrote about low-cost options for migraine patients in pursuing care, and it was time to further engage with and implement some of those options for myself.

Searching for options and accessing resources

One of the more difficult portions of this new uninsured landscape for me is doing further research and navigating healthcare, while the pain continues. It can be confusing to navigate the language and qualification processes for different levels of care, and it sure isn’t any easier with migraine.

Upon applying for healthcare after losing my insurance, I was not able to obtain a plan through the marketplace, but I also am not eligible for Medicaid. I am in the process of learning more about why, but for now, I am in the weird space along with many other people who are necessarily uninsured.

A network full of information

Combing through the Migraine.com site for insurance-specific information, as well as talking with community members has opened up a lot of options. Building community with others who share the condition makes the labor of research more manageable because our experiences and stories provide access ways to options we can try—even if something doesn’t work, it helps to know what routes are available to us.

Doctor who?

Losing my insurance has also changed my accessibility to healthcare professionals. Suddenly, I have limited access to the facilities and specialists I am used to, mostly because of the cost of being seen. Communicating with our doctors about new changes in coverage is a huge part of self-advocacy, but it is exhausting and sometimes does not the yield positive results we hope for.

Ask questions

However, it is always worth it, in my opinion, to ask what can be done. Along with asking what options are available to me to still be seen at my previous care sites, I have also marked in the schedules for the free clinics and health centers in my town, as I plan on going in for conversations with the doctors there.

In general, these professionals may not be specialized in migraine treatment, but I believe it is still a good idea for me to form relationships with them, in case they do have knowledge or recommendations for affordable care that they can offer.

An ongoing and tiresome process

It is an ongoing and tiresome process, but the more answers I can get that lead me to a more complete care regimen again, the better. Navigating chronic pain, with or without insurance, can be just plain arduous and exhausting. It requires a lot of self-advocacy, research, and constant outward communication about care. Still, there are a lot of options available to try for patients, whether or not they are insured.

Are you uninsured with chronic pain? What hurdles have you experienced? Do you have tips or advice for the community on navigating illness while uninsured? Let’s discuss in the comments!

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 (6)
  • GSDmom
    5 months ago

    I am uninsured and there are no clinics around me that would take me. The “free” clinics demand you have proof of being on food stamps and the state I live in you have to “harass” them to do their job right. In fact, even though I implored them to tell me what paperwork or anything I needed to do, they would never call me back and discontinued my food stamps. Any “sliding scale” clinics demand so much paperwork that I just can’t keep up. Being proactive can be extremely difficult when the state you live in is horrible and doesn’t care. So, I do homeopathic treatment and put up with the pain because I have Zero Choice in the matter.

  • Kyky Knight moderator author
    5 months ago

    GSDmom,

    Oh goodness, I know all about having to ‘harass’ some of these offices, being on the phone waiting for anyone to help for hours on end seems to be the norm. So sorry you have to deal with this just to go into the free clinic! On top of the pain and stress of living with migraine, the stress of paperwork and red tape only adds to the debilitating effect of this disease. Ugh, it really is awful, and you are right, being proactive may not even be possible depending on the circumstances. Thank you for sharing such valuable feedback, and take good care. Sending kind thoughts to you.

  • ChronicallyEverything
    5 months ago

    Being ineligible for Medicaid might not be your fault, but be due to the state that you live in. If they didn’t accept the Medicaid expansion money from the ACA them Medicaid is still likely restricted to those that are disabled, elderly and children. I’m fighting that battle myself in Texas. Texas refused that money leaving 15 million ppl uninsured who would otherwise be covered by ACA Medicaid. Even with Medicaid not many doctors are willing to accept the small payouts of the state limited Medicaid services. It might be different for the ACA Medicaid, I don’t know, but in Texas doctors are legally able to refuse Medicaid patients and they do often. The only pain management doctor within 50 miles of me who takes on my kind of case doesn’t accept Medicaid so even though I have Medicaid I’m considered uninsured by him. He won’t proceed any further with my treatment until or unless I get “real insurance”. He even wants me to try Aimovig asap, but knows since I’m on Medicaid they won’t give me any assistance with payment so he’s not willing to try. It is absolutely awful isn’t it?
    So having Medicaid isn’t all it’s cracked up to be. It may not get you back in to see those doctors. I don’t want you to get your hopes up just to get crushed like I was. The only good thing is my pain doctor charge a a lot less for cash patients so I’m not paying the $300 insurance rates for every appointment, but bc of the stupid opioid laws I do have to go back monthly and pay $101 cash to get my refills. It’s terrible the way people are treated, the way we are treated. The way lawmakers forget about us in their rush to judgement.
    The only good thing is that w/o any insurance some drug makers will give you free meds through their own programs. You can usually find the info on their websites. If you get Medicaid you won’t be eligible for those anymore. I don’t know why that is.
    Good luck. I hope you get privately insured again really soon. Being uninsured or relying only on state run Medicaid is terrible.

  • Kyky Knight moderator author
    5 months ago

    ChronicallyEverything,

    Wow! I knew that being under-insured and uninsured had a lot of crossover, but I did not know doctors were outright refusing Medicaid patients, that is just horrible. I know that my state is one of the 19 that did not and have yet to expand medicaid in the US, so you might be absolutely right about my case. I also totally agree about the awful way the healthcare world can treat patients, it can sometimes seem like there is ironically such a lack of care and compassion. Thank you for the recommendations and the feedback, particularly on seeking out reduced or free medication. It is difficult to budget what you don’t have so any resources for saving available to the community are so welcome! So glad to have you as a part of the community, and so sorry to hear that you’ve been dealing with these awful financial hurdles on top of migraine. Sending kind thoughts your way.

  • AmalC
    5 months ago

    I am a Canadian but this fits me to a T with the exception of access to medical professionals. Under our healthcare system, I have access to medical care – I just have to wait my turn. When I lost my job that had medical benefits – the cost of my medications became staggering. Alberta doesn’t cover Rx for all people. Only seniors and the disabled. I am neither. It has been hell. Hell. Hell. I have heard that they are doing trials of Amovig here – I am hoping to get into a clinical trial as I will never be able to afford the drug otherwise.

  • Kyky Knight moderator author
    5 months ago

    AmalC,

    Goodness, I am so sorry that you have undergone such tremendous adversity after losing the medical benefits along with your job, those two losses compounded I am sure have not been a friendly addition to the stress migraine already garners. I am still so shocked every time I pick up my prescriptions at the cost difference from when I was insured. It seems like Amovig is really changing a lot of folks lives, just based on some of the feedback I have seen from the migraine community, but like I shudder at the cost. Thank you for sharing and for being a part of the community, sending warm thoughts of relief your way.

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