With the release of more new treatments targeted to migraine, there is reason to be hopeful that better treatments are out there. Unless you happen to be like me: under-insured. Or worse, you find yourself uninsured entirely.
The new era of treatments has come with high costs. It will be years before we see generics for some of the latest medications like the CGRPs. Some older medications – like DHE, NSAIDs, and triptans – are being released in new formulas. These might be more effective, but it also means they are also more expensive than their previous formulations. Insurance coverage for devices like Cefaly, gammaCore, Nerivio, and sTMS also continues to lag.
Over the past couple of years, I’ve seen a common question: what can I do if I can’t afford my treatment? Based on advice I see, I’m not sure those who answer have had to personally consider this problem. I want to share what I’ve done and add some additional tips that might help. First, though, I’m going to disclose two things up front: I am on a fixed income and government insurance. I consider the latter to be functionally under-insured because many of my treatments, including some procedures and providers, are not covered. Both of these things happened to me in the era of new, expensive migraine treatments and because of that, I’ve had to get pretty creative in accessing treatments.
Organizations that Can Help
This first category of assistance is for those who want some help navigating the incredibly frustrating and complex maze of treatment access. A few organizations can help.
The Patient Advocate Foundation (PAF) has a site called Migraine Matters where you can find a lot of helpful information on accessing treatments and insurance-related resources. If those are not enough, they also offer one-on-one assistance. After signing up, they will connect you with a case manager who will assist in your access questions.
Another of the resources – not specific to migraine – is PAF’s National Financial Resource Directory. You can input your age, state, disease(s), and need(s), and the search tool will show options for various types of support: from healthcare to housing, and everything in between.
The Coalition for Headache and Migraine Patients has resources on their website that walk you through accessing many of the latest migraine treatments and devices. These treatment access guides include tips for people with various types of insurance, as well as those without insurance.
Patients Rising has many resources on their website. Start by inputting your location, then you can filter resources by type: treatment, healthcare, insurance, legal, educational, and more. If you need more personalized assistance, check out their concierge service.
The Heathwell Foundation has a migraine fund that covers some types of treatments for those at or below 500% of the federal poverty level (for your household). Their migraine fund hasn’t been open in the past few years, likely due to limited funding. However, I still check it periodically in case it reopens.
State health care advocates (i.e., legal aid) or state insurance commissioner’s office: I’ve not used the latter, but the health care advocate in my state is a free service staffed by lawyers who can assist with finding and applying to programs for which you are eligible; helping appeal coverage denials; and manage billing problems or other complaints, etc.
In my state, this service is found under the Office of the Health Care Advocate, part of legal aid. In other states, I’ve seen it called “Legal Assistance,” “Health Law Project,” and similar. When searching, I recommend starting with “legal aid,” and adding “health” or “health care,” to narrow the results.
The organizations above might point you to things like patient assistance programs. These can vary in eligibility requirements – such as income caps and whether you need proof the treatment has been denied by your insurance. I’ve used two types of patient assistance: direct from the manufacturer and through hospital-based programs.
Manufacturer (pharma) assistance: There are two types people usually think of under the heading of manufacturer assistance: coupons and need-based “financial aid.” Coupons are for those with commercial insurance: e.g., insurance through employers or purchased through the Marketplace. Coupons cannot be used by those on government insurance like Medicare or Medicaid. These copay cards (or savings cards) help cover the cost of brand-name treatments. If your medication is covered by your insurance, but the copay is still quite costly, coupons often bring the cost (to you) down significantly: sometimes to $0. Many of the new treatments have some type of coupon, including Botox and some of the CGRPs.
The second type is what I would call direct financial assistance because, 1) can be for those who are underinsured or uninsured entirely, and 2) if granted, you often get your medications direct from the company. I’ve applied for several over the past few years. Some had narrower eligibility than others. For example, I typically qualify based on my income level. However, I was kicked off one when my insurance decided to cover the treatment after an appeal. Despite the very high copay, the pharmaceutical company considered the medication covered and I became ineligible for their program. Other programs have taken into account the copay cost and provided the medication when copays were considered a financial burden.
You can find typically find pharma assistance programs on the manufacturer website, either for the specific drug or by searching [drug company name] + either “coupon,” “savings card,” or “patient assistance program” depending on the type.
One thing to check with copay cards is that the cost of the drug counts toward your deductible. In some states, laws prohibit this (i.e., allow copay accumulators). When using these copay cards, you don’t pay the full amount, but the cost is applied to your insurance. The problem? Let’s say you are using the copay card for an expensive CGRP treatment and the card’s benefits end:
- If the cost of the treatment was applied to your deductible and you’ve met your out-of-pocket limit, when you fill it yourself the next time, you won’t have a copay.
- If the cost of the treatment wasn’t applied to your deductible and you exhaust the copay card benefits, you can be on the hook or the full amount of your likely expensive medication after the copay card benefits ends.
Two great resources for finding medication assistance were created by Dr. Armita Sadeghi and Dr. Crystal Jicha as part of the Miles for Migraine ACT Now Advocacy program. They share details on finding assistance for specific medications, coupon programs (Rx discount and pharma), and other direct assistance. You can access these directly here and here, or click the ACT Now link (above) and look under “completed projects.”
Hospital-based assistance: the state health care advocate I worked with found me a program through an in-state hospital. I didn’t need to even be a current patient. I just had to show need. I now get one medication mailed from their pharmacy. Check with your local hospital(s) for medication or pharmacy assistance programs. At minimum, many large ones have departments that can also assist with medication access, if not funding.
Supplemental insurance through Medicare Extra Help, Medicaid, or your state
- If you are on Medicare, you can apply for Extra Help. It helps cover the cost of your Medicare Part D prescription premium, the prescription costs, and has other benefits. Extra Help has income and asset caps, but they also have a website tool that checks your eligibility.
- Some people can be dually covered by Medicare and Medicaid. What one does not cover, the other might. Also, those dually covered are automatically eligible for Medicare Extra Help.
- For those who qualify for Medicaid, or who have a family member who does, you might also qualify for assistance paying your employer or Marketplace insurance premium through the Health Insurance Premium Payment Program (HIPP). You can find out more by searching for “HIPP,” “[your state],” and/or “Medicaid insurance premium assistance.” Rules may vary by state. (Thanks, Ashley!)
- Check to see if your state offers a supplemental program for prescription coverage. Mine does; it has different tiers based on income. For a small monthly premium, it covers my Medicare part D prescription insurance premium and my daily meds cost next to nothing (it does not cover my acute meds).
Doctor’s Samples (meds):
- My doctors cannot give samples of medications. One can’t because of hospital policy. Another can’t because of state law. However, I know plenty of friends in other states or who go to different clinics who are able to get samples of new medications through their doctors. This can allow you to trial a treatment or hold you over until you find another way to access the treatment (or longer, if your doctor is generous).
Devices and Equipment:
- My doctor let me borrow one of her demo neuromodulation devices for several months. This saved me thousands of dollars. I can’t say how often you will be able to convince your doctor to do this, but if they can get an extra device through the manufacturer and are able to load it (or otherwise make sure it is functional) – ask about borrowing it. This can be helpful if you want to at least try a device without spending the money upfront.
- Ask the manufacturer about discounts or access to free devices/equipment for low-income patients.
- Check with local offices that offer rehabilitation services, disability services, or local charities. They may have equipment available that has been donated for low or no cost.
If you have insurance, but it is lousy:
- Shop around! I found out that my meds cost different amounts at various pharmacies. Maybe this is just a government insurance thing? But if you don’t have a set co-pay, compare costs.
- Try mail order (through your insurance). Sometimes you can get a 3 month supply for less than what would cost for a 3 month co-pay at your local pharmacy.
- Ask your doctor about suitable generics. There won’t always be one and if there is, it might not always be the best option, but when it is a reasonable switch, generics can save hundreds.
If you don’t have any prescription insurance:
- WalMart Pharmacy or saving club stores (e.g., Costco): My understanding is that WM has a whole bunch of generics for $4/mo and places like Costco can have really competitive prices, too (without a membership).
- GoodRx and other discount saving cards: again shop around, prices can vary by pharmacy and discount program.
- Cost Plus Drugs: the new site by Mark Cuban has a few of the older “off-label” migraine meds. In addition to the few under “migraine,” search for off-label and other meds under categories like: seizure, mental health, steroids, anti-inflammation, high blood pressure, dementia, nausea, pain & nausea, neurological.
- Other options: Ro Pharmacy, Blueberry Pharmacy, Honeybee Pharmacy.
Note that with many of these being mail order, check to see that they ship your prescription to your state and that shipping is free or cost-efficient. There are typically extra fees for expedited shipping. Plan ahead for refills.
Healthcare Costs (Doctors, Tests, etc)
Did you get a surprise doctor or hospital bill? Before you pay, try a few strategies to reduce the cost.
First, compare the bill to a copy of your records for that visit. Make sure nothing was billed in error.
Next, negotiate! First call the insurance company. If the visit or procedure was billed as out-of-network, you can try asking for an in-network exception. You might need to submit proof of necessity to support the appeal. You can also do this if it was in-network but denied. For example, if they say it wasn’t medically necessary or was out-of-network, try to prove that appointment or procedure was your best or only option (i.e., you exhausted other options, no other specialist is available in-network, etc.). Your provider should help with this by submitting supporting documentation, but you can also add your own documentation.
If that fails, negotiate with the facility. The bill will come from your provider or hospital after insurance has paid what little they pay – or denied it – so negotiate with them. Ask what they can do to help; e.g., can they lower the cost to the in-network fee, is there a cash pay discount? Explain your financial hardship.
- For large hospitals, ask if they have a financial assistance program (department). It might be the same one that handles access to medications. Sometimes they can help forgive costs.
- Last resort, at least ask for a payment plan to pay in installments so you don’t have to put it on a high interest credit card.
For other out-of-pocket services, you can consider asking about sliding scale fees based on income. Many mental health providers have this.
For reproductive health, consider low/no cost clinics like Planned Parenthood for annual visits and birth control.
For headache specialists, consider telemedicine options like Neura. I joined during their initial pricing, so it’s about the cost of a copay per month and I get a specialist visit every 3 months, with coach check-ins in between. Admittedly, new pricing is more. They can see patients anywhere and prescribe in certain states (in others, they work with your PCP or other HCP).
- If you want to join Neura Health and a discount would help, this is my affiliate discount. I receive a small amount of compensation when people use this.
- Other services like Cove offer meds after an online consult. There is a fee for the consult and the meds. I’m not familiar with their process, but believe they can bill some insurances for the consult and send meds to a local pharmacy to process through insurance.
Another way to access treatments is by participating in a clinical trial. There can be barriers: eligibility requirements, time commitments, travel, etc. However, those who can participate not only get access to new and innovative treatments, but are often compensated for participation. Ways to get involved: 1) use the Antidote clinical trials matcher, 2) check ClinicalTrials.gov (use the advanced search features to narrow by disease, age, location, and study status, etc., 3) ask your doctor, particularly those associated with medical research facilities. Clinical trials – or research, in general – is not just for medications, either. Often developers of new technology need beta testers for apps and healthcare devices. I find these through companies like Savvy Cooperative.
Flexible Savings Accounts:
If you receive employer benefits, consider signing up for a flexible spending account – or FSA. FSAs allow you to set aside pre-tax dollars up to a certain amount (in 2022 it was $2,850). The funds are deducted from your paycheck before taxes (i.e., pre-tax) and often loaded onto a debit card that can be used on qualified medical expenses. The catch is that they typically need to be used by the end of each calendar year (unless your employer has opted into a rollover/grace period). Not only that, but you lose any unused funds, so don’t over contribute. It can help to consider any costly tests or procedures you might have, or review your prior year expenses, before deciding how much to contribute.
For any of these, I’d throw out a final idea of crowdsourcing. I know people have varying comfort levels over the idea of asking friends and family for support. There is also the complication of donations counting as assets against certain benefits you might receive (e.g., SSI). I don’t know all the fine points of this, so I’m linking this blog post with the caveat that I can’t guarantee the accuracy of the information (but it should be a good starting point). You can also find more information on this IRS website.
If you do opt to crowdfund and are on Twitter, accounts like @Tinu and @bennessb often boost the fundraisers of disabled folks. Check out hashtags like: #NEISvoid and #MutualAidRequest. If crowdfunding is not an option, consider creating a wishlist of medical or chronic illness needs. Some of these same accounts/hashtags will boost wishlists, as well.
I hope at least some of these options help you get closer to accessing the treatments you need. There is nothing more frustrating right now than knowing the migraine world is finally producing new and more targeted options to treat our condition, but costs put them out of reach for too many of us.
If you have other suggestions for accessing healthcare when uninsured or under-insured, I would absolutely love for you to share them. Since these are also very US-centric, I’d be happy to add any tips for friends in other countries (with credit). Comments or contact me using the blog contact form.