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People living with migraine often bear a financial burden and can be routinely denied when trying to access treatments, especially the most recently approved class of drugs, CGRPs. I connected with Lindsay Videnieks, the Executive Director of the Headache and Migraine Policy Forum (HMPF) in order to get some answers on what people in the migraine community can do when they’re facing barriers to their migraine treatment.
Financial assistance for accessing new CGRP therapies
Can you give our readers an overview of the financial assistance programs and tips that patients and caregivers should be aware of with regard to accessing new CGRP therapies?
First of all, this is such an exciting time for the migraine community. It has been decades since persons living with migraine disease have had new options specifically developed to not only treat but prevent migraine attacks. Unfortunately, some of these groundbreaking therapies may be out of reach for some patients. The good news is that each of the three new CGRP inhibitors that were approved last year for the prevention of migraine in adults have financial assistance programs to help patients achieve access, particularly if they are faced with a burdensome and time-consuming prior authorization process that would otherwise keep them from accessing the medicine.
These programs are applicable to patients who have insurance
So right away, it’s important to remember that most of these programs are only applicable to patients who are covered by private or commercial insurance – which includes insurance plans provided through an employer, purchased with subsidy support from the Affordable Care Act (Obamacare) or purchased privately. For patients who are uninsured, companies also have some programs to help patients access their therapies.
Guides to help understand the CGRP therapy options
But for those who are eligible commercially, the best resource to determine which bridge program might be best and to learn more about important details like expiration dates, patients should turn to the Coalition For Headache and Migraine Patients (CHAMP) website. CHAMP has prepared comprehensive guides for each of the three CGRP therapies on-market to help patients navigate important information like monthly fees, annual caps, and length of the program. Some of this can be confusing so it’s great that CHAMP has put all of this together in one place – these guides are very simple to use and I’d encourage patients and caregivers to toggle through them to learn more about each program.
Be proactive before assistance programs expire
And the key here is proactivity. These bridge programs won’t last forever and for those that end after 12 months, we are already starting to see some patients that are no longer eligible for coverage. Some manufacturers may provide notifications to patients when a program is close to expiring, but patients shouldn’t wait until the program is “sunsetting” before they start looking for help. So a good rule of thumb would be to start looking for help well before you need it, which I want to acknowledge may be difficult for persons living with migraine disease but makes all the difference in terms of access to therapy.
How can patients find out if a medication is covered by insurance?
One resource that we’ve found is helpful is a formulary search site and downloadable app by Managed Markets Insight & Technology (MMIT) which is used by patients, payors, physicians, and pharmacists to ensure consistent, informed managed-care decisions. All you have to do is input the therapy your clinician has prescribed along with where you live and the site will show you which plans in your state cover the therapy. [Editor note: HMPF does not have an affiliation with MMIT].
Denied insurance claims
A patient has been denied insurance coverage for a migraine medication. What happens next? Where can they turn?
Unfortunately, we know this is going to happen. So the bridge programs mentioned earlier can certainly serve as a short-term means of accessing the therapy. But we already know that in some states, insurance companies that have a large market share have gone so far as to block the entire class of CGRP medicines (meaning all three therapies) from their formularies. And even if they are included on a payor’s “formulary” (covered list of therapies), there might be onerous paperwork or hoops patients are forced to jump through in order to get access to the medication prescribed by their provider.
Migraine Matters: a hotline to help patients access prescribed medication
But here’s the good news. There are some fantastic groups providing free resources to help patients with the transition from these bridge programs onto a more permanent path towards achieving access. HMPF and the Patient Advocate Foundation have created an entire section of materials to help you navigate this appeals process within our tool called Migraine Matters, which includes the ability to request help electronically from PAF’s case management team when you need it. In this tool, click the “Understanding Insurance Coverage” section to get started. Patients and caregivers can also call PAF through their dedicated toll-free hotline at (800) 532-5274.
More barriers to migraine treatment
What are some other access issues that can come up during the course of treatment?
Migraine patients face a lot of challenges in accessing care. We’ve heard from patients who may have been on non-CGRP therapies such as neurotoxins that are being denied access to those therapies just for trying samples of CGRP medications because insurers claim that this type of combination therapy is “experimental” even where patients are having success in reducing their number of headache days.
We are also seeing patients impacted by prescriber restrictions, which means that even if your insurance plan says a therapy is on formulary, you won’t be able to access it unless you are able to get to a very specific type of provider who is certified in some way to prescribe. In some states, there are just a handful of such providers – and in other states like Kansas, there are none. This effectively makes therapies out of reach for patients.
What do you think the greatest access barriers for the migraine community will be going forward?
HMPF strongly believes that decisions about a course of treatment should be between a clinician and their patients. However, we unfortunately also expect that, like a lot of recent breakthrough therapies, CGRP medications will experience significant access barriers – including prior authorization – which means that your provider will be required to fill out time-consuming paperwork documenting your disease, and step therapy – which means that you might have to try one, two or more other therapies before getting access to what your provider has originally prescribed. We’re working hard with our stakeholder members to push back on some of these access barriers through state advocacy work and educating policymakers on why migraine is such a unique disease – and that includes that fact that not every therapy works for every patient.
Perhaps the greatest access barrier of all is the continued stigma experienced by persons living with migraine disease. There is a fundamental lack of understanding of migraine disease by society, employers, even family and loved ones. Patients are striving to increase awareness about this disabling yet invisible disease which is helping to improve access. We applaud patients who step up and raise their voices about the impact of this disease on their quality of life.
Every person with migraine has a unique and powerful story to tell
If patients are denied treatment, is there a place for them to get involved to become a patient advocate?
Patient stories are the most powerful force for change. There is a human cost to lack of access – whether it’s chronic pain, missed career opportunities, or a negative impact on families. And freedom from migraine disease means different things for different people, but the personal nature of this journey means that every patient has a unique story to tell. Policy and decision makers need to hear from migraine patients – whether that is advocating through a national event like Headache on the Hill or engaging with a patient network like CHAMP or the Global Healthy Living Foundation. Become a patient advocate by signing up and choosing the advocacy opportunity that’s right for you – that could be writing an op-ed, meeting with a policymaker, recording your own testimonial – even just talking to a friend about your experience. Your story matters and will impact the larger migraine community.
Lindsay Videnieks, JD is Executive Director of the Headache and Migraine Policy Forum (HMPF), a diverse stakeholder coalition which brings together policy-minded partners that care about patient access. HMPF helped convene the migraine community to prepare comprehensive input during the ICER review of the first FDA-approved CGRP therapy and uses a campaign approach to help improve patient access to all therapeutic options on a state and federal level. She is a member of the bar in the State of Maryland and resides in Washington, D.C. with her husband and (soon to be three) children.