Migraine is a neurological disease. Some estimates show that it is the number one cause of disability in people under the age of 50 worldwide.1 It also effects women at rates 3-4 times more than men, and the prevalence is 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 that estimate.2 This is because many people who experience migraine 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 migraine care that is available. Identifying and attacking these barriers-to-care might give patients in their prime years the ability to function better and get the help they need to decrease disability and pain.
BARRIERS TO ACCESS
Difficulty 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. Instead, 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 symptoms point to a primary disease. Many 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 disorder similar to multiple sclerosis or Parkinson’s disease.1 For this reason, many self-treat with either over the counter medications or other techniques like using essential oils, massage or trying to sleep it off.
There is also a stigma associated with complaining about headaches. People don’t wish to be seen as weak or as “complainers.” Speaking about this condition at work – a condition that cannot be physically seen by others – may cause them to be discriminated against or labeled as always sick or just someone looking for reasons to call out.
It is worth noting that some people also have other symptoms with their disease, like aura, mental confusion or difficulty speaking. Patients with these more worrisome symptoms may be more likely to present to their physician and be diagnosed earlier.
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
Educational CME programs like those developed by the American Headache Society (AHS) are integral to teaching other practitioners (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. Much of the population that suffers the most from headaches are also social media savvy. Seeing what others are experiencing might help ‘connect the dots’ and encourage a consultation with a physician. Social media is also a good way to share or find information about treatments.
Education about the underlying pathology and the fact that this is a real disease with a genetic component is therefore important.
Patient advocacy groups are an important part of this education, 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. This is why maintaining access to the right migraine care is so important.
- 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.
- Miller S & Matharu MS. Migraine is underdiagnosed and undertreated. 2014 Sept; 258 (1774):19-24, 2-3.
from the Editor:
In case you missed it we recently posted an article on “What to Do When Being Denied Migraine Treatment” which I encourage you to read. It’s about filing a complaint. You know you’ve thought about it.
We’ve also got another article talking about the rights of migraine patients, “What Every Migraine Patient Needs to Know“, which really is an eye opening look at other obstacles patients are encountering.
Lastly, I encourage you to become a member of Patients Rising. We really value our members and enjoy giving their ideas a first listen. Together, we’ve played a role in solving patients’ problems. So come on over.
Dr Sheikh graduated from UMDNJ- Rutgers Medical School and then completed a Neurology residency at Montefiore Medical Center in Bronx NY. She then completed a Vascular Fellowship followed by another fellowship in “Headache and Facial Pain,” at Brigham & Women’s Hospital- Harvard Medical School. She now has over 6 years of clinical experience treating complex headaches and takes a holistic approach. Dr Sheikh is educated in the latest medications for headaches, migraines and the latest complementary treatments available. She is also actively involved in research and started the “Migraine and Vascular Committee,” at the American Headache Society (AHS). You can follow her on Instagram, Twitter, or on her website, https://www.headachesnyc.com/