Key Issues in the Migraine Community
At present we have over 2,500 members in our community, most of whom have at least 15 or more migraine days a month. By speaking with them daily and attempting to offer knowledge, empathy, and hope, we have gained some insight into the key issues affecting this community. Please join us in advocating for change.
1.Difficulty obtaining Disability Benefits.
The Disability Tax Credit, Provincial Disability Programs, and CPP Disability Benefits are available for so many conditions: almost all mental health issues, diabetes, autism, legal and illegal substance abuse, but rarely for chronic migraine alone. Chronic migraine is routinely dismissed and diminished by our own doctors. Why is this? The World Health Organization (WHO) states that the disabling effects of severe migraine are “comparable to dementia, quadriplegia and active psychosis” (Shapiro RE, Goadsby PJ, Cephalalgia 2007). Furthermore, the WHO classified the constant nature of chronic migraine as "more disabling than blindness, paraplegia, angina or rheumatoid arthritis.” (Harwood RH et al., Bull World Health Org., 2004).
Despite this categorization, it is extremely difficult to obtain disability benefits unless one can find a doctor willing to advocate for us, and one who is willing to see beyond the basic disability categories of speaking, hearing, feeding, walking, dressing or mental function. This doesn’t happen very often. Type 1 Diabetes has a special category of disability because of the 14 hours of monitoring required. In stark comparison, most chronic migraine patients are disabled by pain and other symptoms at least 120 hours a month. The majority of patients who are successful in getting disability also have mental health issues. Patients who don’t have mental health issues — who are simply in extreme pain almost every day of their lives — are rarely able to get disability benefits. Why isn’t pain alone a disability?
The argument has been that pain is subjective and self-reported, but that is also true of many mental health conditions that qualify. There is systemic diminishment of this disease.
A C T I O N I T E M S
Work with lawyers and disability advocates to explore how Doctors can better help their patients to apply for disability benefits. We could create an info sheet that patients could take to their doctors to help them fill out the paperwork, as well as guideline for patients.
Create a 1-800 support and information line for patients.
Advocate for change in the Provincial and Federal health care policies to include Chronic Migraine as a disability based on the WHO analysis. Could we advocate for pain and accompanying migraine symptoms to be included as a category of disability?
Promote Migraine Awareness Month in Canada, perhaps in the same month as the U.S. (June). This would help to build awareness and remove stigma while taking advantage of marketing and social media synergies with the U.S.
2.The high cost of medications
⨠ Many migraine patients are debilitated by pain and cannot work. This means that for the luckier ones, as discussed above, they have some sort of STD, LTD, Provincial Disability or CPP, but for many patients, they have no financial support. According to a recent survey in my group, a startling 33% of chronic migraine patients do not have private insurance.
⨠ If a patient has a disability program, or is working, some medications may be covered. But if they are not working, and are not on disability, it is necessary to secure private health insurance. This is virtually impossible because Chronic Migraine/Chronic Pain is considered a pre-existing condition and precludes patients from purchasing a cost efficient private insurance plan that would cover their migraine medications. Why do we let this stand while, even in a capitalist country like the U.S., patients are not allowed to be excluded due to pre-existing conditions? Many Provincial Drug Plans do not cover basic migraine medications. The result is that many migraine patients are paying for their medications out-of-pocket which is an untenable situation.
Most Chronic Migraine patients have been able to try anti-CGRP medications with the help of patient support programs through the pharmaceuticals. However, when the programs end, patients are supposed to be able to continue their medications via public or private insurance. In reality, anti-CGRPs are not yet covered by any provincial formularies and some private insurance companies exclude anti- CGRPs from their list of covered medications. This means that for many of us, it will cost $7,000–$9,000/year for anti-CGRP drugs on top of approximately $5,000/year for other migraine medications — bringing the total out-of-pocket expenses to $12,000–$14,000/year.
It may be hard for a layperson to understand, but for our members the cessation of a medication that is working can be devastating. I counsel members daily who feel like they want to commit suicide when they are faced with returning to their previous levels of pain. I would like to know why our country feels that Methadone should be free and migraine medications — for one of the most debilitating neurological diseases in the world — should not be free. This seems incredibly unfair. We need all migraine drugs to be covered on the provincial formularies. Chronic Migraine patients cannot survive without their medication. It is a life-sustaining measure, not a discretionary measure.
A C T I O N I T E M S
Continue to lobby the provincial governments to put anti-CGRPS and other migraine medications onto the provincial drug plans. Scotland has succeeded in doing this and England is following suit. Given their similar healthcare systems, perhaps they could be cited as models? (Update: we launched an Aimovig Advocacy campaign from July 2020 — April 2021 and sent personalized testimonial letters to Ministers of Health and MLAs)
Create an email petition positioning access to anti- CGRPs as a neglected women’s issues and send to both Ministers of Women’s Issues and Ministers of Health (Update: Petitions have been sent in 7 provinces in March 2021)
Countless chronic migraine patients have been told repeatedly that there is no hope for us and that we will never get better. Some neurologists have even told patients that no medication will ever help them. Dr. David Dodick, a leading migraine specialist from The Mayo Clinic in Arizona, in his seminar at the 2019 Migraine World Summit, stated that the one thing The Mayo would never do is tell a patient that there isn’t hope — he tells his patients he will never give up on them. Many migraine patients have suicidal ideation because of the level of pain they live with on a daily basis.
It is unethical and irresponsible for doctors to tell patients there is no hope, especially when new medications and treatments are coming onto the market every year. For example, some people who have been chronic for 30 years have taken an anti-CGRP and gone into a type of remission — one never knows what can happen. Most of us are just looking for a decrease in pain, not a miracle cure.
Another issue is that once a chronic migraine patient with a difficult case has been seen by a few neurologists with no success, they are often cut off from care and left to fend for themselves. This is unacceptable and dangerous. This is the time when these patients are at their breaking point and need the most compassion. We don’t tell diabetes or epilepsy patients that they are on their own.
Finally, chronic migraine disproportionately affects women — 85% of chronic migraine patients are women. There seems to be a gender bias against believing women when they are reporting pain. They are routinely told to learn to live with the pain, and studies show they are offered psychotherapy in the same situation that a man would be offered pain medications and treatments.
A C T I O N I T E M S
Develop an Ethics of Hope Program for doctors to help them learn how to speak to patients in a more compassionate manner. The challenge lies in how we can disseminate this information.
Create a Doctor Response Guide for what to do when he/she has come to the end of his toolbox; i.e., instead of saying, “No medication will ever help you,” doctors could say, “I’ve run out of ideas, but let’s see if some new medications come on the market in the next six months.” Also, instead of a doctor saying, “There’s nothing left I can do for you,” they could say, “I can’t think of anything else that would help but let me refer you to someone who can look at your case with a fresh set of eyes.”
Look at the possible inherent sexism at play here and how it can be addressed and mitigated with better training.
3.The Ethics of Hope
4.The Need for Individualized Migraine Protocols
Doctors need to trust their patients and to treat the individual based on their particular comorbid conditions, their specific symptoms and their specific triggers. If migraine research has taught us anything, it is that everyone has a unique chemistry and vastly different responses to treatments. When I conducted a poll of our members, 76% responded that they did not receive adequate medical care for their chronic migraines. Some patients are given first-line preventative medications and respond well, others have tried 10–20 drugs and are outliers and more difficult to treat.
We are all aware of the concern around opioids. There are many patients with migraine and comorbid conditions who are having difficulty gaining access to opioids despite the fact that there is a limited risk of dependency. While opioids don’t work for most patients, they are the only thing that works for some people, and may be a viable treatment for severe migraine and for those patients who do not have MOH (Migraine Overuse Headache). If a patient has done a trial to remove opioids for a six-month period, and their migraine frequency did not decrease, their migraines were likely not MOH.
If the patient struggles with comorbid conditions like Fibromyalgia and Myofascial Pain they may need massage, physiotherapy, and possibly opioids or other pain medications to manage that chronic pain condition. If that chronic pain condition triggers their migraines then leaving it unchecked will trigger more migraines and the patient ends up in an even worse pain cycle. Migraine protocol needs to be tailored to each patient. For example, if the patient struggles with anxiety and depression and those are the triggers for their migraines, then MBSR and CBT would be hugely helpful for them. If a patient does not engage in pain catastrophizing, pre-migraine anxiety or exercise phobia, then those modalities often do not make much of a difference in pain levels. Patients are advised to avoid using triptans more than 10–12 days a month. If a patient has Gastroparesis, IBS, or kidney damage, then NSAIDs are not an option for them. In this case, what are they expected to use to treat their migraines after they reach their triptan limit?
Doctors need to listen to what works for each patient, and to stop turning away patients who need opioids as part of their pain management. This Draconian approach is biased and based on the political climate not the patient experience. All patients need to be treated with respect, compassion and tenacity if they are going to have any hope of managing their pain and regaining their lives.
Many of our members tell me that they cannot get in to see a neurologist, let alone a Headache Specialist. Wait times in the Maritime Provinces hover around three years and Chronic Migraine patients are so desperate they are considering out-of-province care or in some cases going to the U.S. for treatment. We are a wealthy, first-world country — how is this acceptable? Even patients who do have care, are often not given the choice of which neurologist they want to see. If a patient is seen by multiple neurologists, they often have another referral declined. This is not an appropriate level of care for a chronic debilitating condition.
A C T I O N I T E M S
Advocate for more doctors to specialize in headache. Perhaps chronic migraine patients could be involved in this training and be useful in sharing their experiences. I believe we could move forward so much more easily if patients and doctors could listen to and learn from each other.
Petition the provincial and federal governments to set a minimum standard that requires at least one Headache Specialist in every Canadian city, and even more based on population.
Recommend to the College of Physicians and Surgeons of Canada that there be far more medical training in headache care. According to the American Headache Society, medical schools averaged only one hour of pre-clinical and just two hours of clinical headache teaching in recent years. This particular cause is being taken up by the American group Headache on the Hill.
5.Poor Access to Care
Many of our members have told me that when they have gone to ER facilities in level 10 pain, they were not helped by the treatment they received and then sent home. Some have even worse horror stories. Many factors contribute to this: waiting rooms with loud noises and fluorescent lights, ER staff who sometimes think migraine patients are drug-seeking addicts, ER doctors who are not familiar with migraine and simply don’t know what protocol to use.
A C T I O N I T E M S
Create a Migraine Card for patients to take to the ER which would notify front line staff that it would be helpful for the patient to be kept in a dark room and away from noise and lights.
In consultation with doctors and patients, develop three IV Protocol options based on the types of migraine presented. Request that neurologists create an individualized Emergency Room protocol for their patients that could be written down and taken by the patient to the ER to increase the likelihood of a successful outcome.
Look at a way to provide ER migraine services in Pain Clinics in Canada. ER protocols for migraine typically involve a cocktail of medications administered via IV. Why couldn’t these same IV migraine cocktails be set up at pain clinics? These clinics already have anesthesiologists and nurses to administer and monitor IV infusions. This would relieve some of the burden on the ERs across the country while allowing patients to have more certainty and structure around getting IVs to break their intractable migraine attacks. It is a radical idea but in the absence of proper in-patient headache clinics it could be a good intermediary measure.
Consider providing ER/ IV services for patients at home. Part of the very definition of a migraine attack is that physical movement exacerbates the pain. It is extremely challenging for most patients to move out of their beds. Why not keep patients in a far more comfortable environment AND reduce overhead costs by bringing a mobile service to them. We already to this for many other diseases — it is simply the minimization of the pain of migraine that has prevented us from exploring this option in the past.
6. Poor ER Care
7.The Need for Migraine Clinics
Specific Headache Clinics do not exist in Canada the way that they do in other countries such as the U.S. and Norway. Patients have nowhere to go for in-patient treatment to break intractable migraine. Comparable models for this are the Diamond Headache Clinic, the Jefferson Headache Clinic or the Headache Center in Mississippi. What we would love to see in Canadian clinics is more comprehensive, holistic care. Care that would recognize that most migraine patients have comorbid conditions and that those conditions need to be addressed holistically in order for the patient to make progress.
Currently, a Canadian Headache Specialist typically deals with lifestyle modifications, medications and only a few interventions such as Botox and Nerve Blocks. We know that the full spectrum of Migraine Disease often involves Fibromyalgia, Myofascial Pain, IBS, Pelvic Pain, Central Nervous System Sensitization and more. We need a team of doctors who speak to each other and try to work with us to problem solve with a multi-modal treatment approach. An ideal clinic would include the following:
⨠ Neurologists and anesthesiologists
⨠ Pharmacists who can look at side effects and drug interactions
⨠ Physiatrists for comorbid muscular conditions
⨠ Gastroenterologists and dieticians for comorbid stomach issues
⨠ Physiotherapists, osteopaths and massage therapists for muscular and myofascial pain
⨠ Psychotherapists to manage comorbid mental health issue
⨠ Intravenous DHE treatments to break intractable migraine
⨠ Intravenous anti-CGRP treatments as they become available
⨠ Intravenous chronic pain treatments such as ketamine/lidocaine
We need your help.
If you want to join the cause, you can do as much or as little as you like. Here are some skills we need:
Accounting
Website development
Social media development
Support group moderators
Advocacy experts
Healthcare professionals
Administrative support