Barriers to Care in Migraine
This original article was previously written for patientrisingnow.org a patient advocacy group.
Migraine is a neurological disease. Some estimates show that migraine is the number one cause of disability in people under the age of 50 worldwide.1 It also effects women at rates of 3-4 times more than woman and the prevalence is the highest in woman who are in the prime reproductive years of their life.1 Other statistics show that the total number of people who are effected by this disease may be lower than estimated.2 This is because many people never come to a doctor with their symptoms and are therefore not diagnosed. For this reason, migraine is also under treated. Even those who have a formal diagnosis of migraine may not be getting the available treatments. Identifying and attacking these barriers to care are important so that patients who are in their prime years are able to function better and get the help they need to decrease disability and pain. Barriers to Care 1- Difficulty in identifying the disease- For most people, the most disabling aspect of a migraine is the painful headache. Many people do not think to go to their doctor with their complaint of a headache. They feel that they should just deal with it on their own. Even if they speak to their primary physician about it, the physician may not be attuned to ask the right questions to determine if this could be a primary disease. Many people may think that they should be able to deal with their headaches on their own. Migraine is still not recognized or well identified by the general public as a neurological disease similar to multiple sclerosis or Parkinson’s disease.1 For this reason, many are treating on their own with either over the counter medications or using other techniques like using essential oils, massage or trying to sleep it off. There is also a stigma associated with complaining about headaches, where people may be seen as weak or “complainers.” Speaking about this condition at work that cannot be physically seen by others may cause them to be discriminated or labeled as always sick or looking for reasons to call out. Some people also have other symptoms with their disease, including aura or mental confusion or difficulty speaking. These patients with these more worrisome symptoms may be more likely to present to their physician and be diagnosed earlier. Education about the underlying pathology and the fact that this is a real disease with a genetic component is important for this reason. Patient advocacy groups are an important part of this education and spreading knowledge to the general public. It is important to help people recognize that this is a disease with real symptoms. Patients are not looking for an excuse to not work, either at their job or household. The symptoms are real and can be unpredictable and disabling. Education for patients is also an important aspect of this. Only about 12% of patients who qualify for a preventive are receiving one. 3 2- Difficulty in accessing care- One of the main difficulties in getting the correct treatment is lack of specialists. There are about 36 million people in the United States with migraines but only about 500 certified headache specialists. Although most people will present to their primary care physicians and neurologists for their headaches, for those that have chronic or complicated migraines, a headache specialist maybe necessary. Many general neurologists and primary doctors do not have all the resources or up-to-date information about the latest advances in headaches and migraine treatment. Some of the other barriers include difficulties with insurance coverage to see a headache specialists or lack of a headache specialist in the nearby geographic area. Some of the solutions for this include the increasing use of telemedicine. Telemedicine allows headache specialists to be able to either directly treat or consult with another physician on the care of a patient. Although there are still some barriers to telemedicine, including access and laws about telehealth across state borders, it is a potential solution for the lack of specialists in a particular area. Educational CME programs like those developed by the American Headache Society (AHS). These are integral to teaching other practitioners like general neurologists, primary and internal medicine physicians, and physician extenders on the latest advances in diagnosing and treating migraine and other primary headaches. These educational programs provide education on the latest advances as well as hands-on practice for procedures like nerve blocks and onabotulinumA injections. Social media is also becoming an invaluable tool in spreading awareness. Since much of the population that suffers the most from headaches are also social media savvy, this is a good way to spread information about a condition that may be suffering from but did not realize there were treatments or even a diagnosis. Reference: 1- Steiner TJ, Stovner LJ, Vos T, et al. Migraine is first cause disability in under 50s: will health politicians now take notice? Journal of Headache and Pain. 2018; 19 (1): 17. 2- Miller S & Matharu MS. Migraine is underdiagnosed and undertreated. Practitioner. 2014 Sept; 258 (1774):19-24, 2-3. 3- https://uppercervicalawareness.com/4-facts-show-migraines-undertreated- underdiagnosed/