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Action Alert

You can help eliminate health disparities in headache medicine! - Share your stories about how your headache care is impacted by your: race, gender identity, sexual identity, geography, education attainment or socioeconomic differences.

PATIENT GUIDE FOR NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE - REQUEST FOR INFORMATION

DEADLINE JULY 15, 2020

WHAT

We are asking people with headache disease to share their personal experiences regarding health disparities and/or inequities with the National Institute of Neurological Disorders and Stroke (NINDS). NINDS has issued a Request for Information to help guide its research on health disparities and inequities in neurological diseases and disorders.

WHY

Help NINDS understand important knowledge gaps, health and research needs and promising opportunities. Your experience helps NINDS recognize the existence of health disparities and inequities in headache medicine, the issues experienced because of those disparities and inequities (access to care, access to medicine, optimum treatment), and the importance of eliminating these issues through much needed research.

WHEN

DEADLINE JULY 15, 2020

Yes this is a tight deadline.

Your voice is important.

AND there is no need to answer all the questions.

We need as many people as possible to speak up. Together, we can increase awareness of headache medicine and the need for more research funding.

Complete and submit the web form on the NINDS website. Use the following Patient Guide for suggestions on what information to include in your form.

QUESTIONS? Disparities in Headache Advisory Council is organizing the patient responses during this Public Comment period. If you have questions, please email meghan.buzby@headachemigraine.org.

Patient Guide

You are uniquely qualified to explain the impact of living with migraine, cluster and other headache diseases. There are lots of gaps in existing data about disparities in headache care for many communities. The Disparities in Headache Advisory Council (DiHAC), will be sharing some of the existing data about disparities for the Black community. Please add your own experiences for whatever communities you are a part of - and call for more research.

NOTE

Responses are voluntary and anonymous. You may not receive acknowledgment of receipt of your submission and information is not considered confidential.

Privacy Concerns?

Responses may be shared publicly on an NIH website. Please do not include any personally identifiable or other information that you do not wish to make public.

WHAT TO INCLUDE IN YOUR ANSWERS
As mentioned above all questions do not need to be answered. We have pulled out three questions we feel are most important for patients to respond to and have included them below with some suggested information/stats to include in your response. You should personalize your response. The more personal the story the more power it has...
Remember, you must complete the form on the NINDS website.

The questions in this form were written for healthcare providers. Don’t let that stop you. Look at each question and think about if you have a story to share. Again you don’t need to answer every question.

Answering even one will make a difference.

Questions

Q: Identify determinants that help explain this/these health disparities and /or inequities

Examples of physical and social determinants

  • Environment
  • Worksite conditions
  • Lighting
  • Access to education
  • Social support
  • Language barriers
  • Access to emerging technologies

Q: Identify area(s) of health disparity and/or inequity (including race/ethnic, sex/sexual orientation/gender identity, regional/geographic, age, educational attainment, or socio-economic differences) in neurological disease, treatment, care, and/or service in the U.S.

Stats that could be helpful answering this question

  • Probable migraine is more prevalent in African Americans (AA);
    however, diagnosed migraine is more prevalent in non-Hispanic Whites (NHW) than African Americans
    (American Migraine Prevalence and Prevention Study)
  • It has been reported that in African Americans with migraine:
    • Health care services for migraine treatment are less utilized.
    • Follow-up appointments are terminated more regularly.
    • Inaccurate diagnoses are more common.
    • Acute migraine attack medications are prescribed less frequently.
    • More mistrust and lower quality communication with physicians.
      (Silberstein SD et al Cephalagia 2007, 27: 220-229; Lipton RB, et al Neurology 2007, 68:343-349)
  • The burden of migraine is increased in African Americans: Migraine is more frequent, more severe, more likely to become chronic and associated with more depression and lower quality of life compared to Non Hispanic Whites.
    (Nicholson R, et al Headache 2006 46:754-765; Heckman BD, et al J Nat Med Assoc 2008 100:247-255; Heckman BD, et al Ethnicity Health 2013 18:34-52)
  • There are differences in treatment patterns and diagnosis that indicate that minorities may not be receiving adequate migraine care. Black and Hispanic patients with migraine have about half the number of outpatient medical visits for migraine and fewer visits resulting in a migraine diagnosis compared to White patients with migraine.
    (Loder S, Sheikh HU, Loder E. The prevalence, burden, and treatment of severe, frequent, and migraine headaches in US minority populations: statistics from National Survey studies. Headache.
    2015;55(2):214-228.)

Q: Identify area(s) of health disparity and/or inequity (including race/ethnic, sex/sexual orientation/gender identity, regional/geographic, age, educational attainment, or socio-economic differences) in neurological disease, treatment, care, and/or service in the U.S.

Emphasize the overall lack of funding for headache medicine, clinical trial exclusions, access to care and treatment issues, etc.

Share your personal story about how these gaps have impacted you.

Definitions

Health Disparities - Health disparities refer to differences in health and health care between groups that are closely linked with social, economic, and/or environmental disadvantage. Disparities occur across many dimensions, including race/ethnicity, socioeconomic status, age, location, gender, disability status, and sexual orientation. (Kaiser Family Foundation)

Healthy Equity - The principle underlying a commitment to reduce—and, ultimately, eliminate—disparities in health and in its determinants, including social determinants. Pursuing health equity means striving for the highest possible standard of health for all people and giving special attention to the needs of those at greatest risk of poor health, based on social conditions. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3863701/)

Learn More

Watch and learn from Dr. Larry Charleston IV in NHF’s Weekly Podcast, HEADS UP, Episode 64 - A Call to Action to Achieve Equity in Headache Medicine.

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