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23 November 2019

CHAMP Headache Disease Patient Access Survey

The Migraine Diva and the Coalition For Headache And Migraine Patients (CHAMP) are asking for your help with a very important survey. We need your input to better understand the experiences people with headache diseases have had with their health care providers, treatments, and insurance providers. Your responses to this survey are vitally important - they will help us to advance research and will be utilized in our community's efforts to advocate for access to appropriate care and therapies.

The survey will take approximately 15-20 minutes to complete. Your responses are anonymous. Participants will be eligible for a drawing of one of twenty $25 Amazon gift cards. Help us reach our goal of gathering 3,000+ headache patient voices by completing the survey today!

12 November 2019

The Impact of Value Assessments on Patients

Today, PhRMA Foundation and the National Health Council put together a conference to discuss value assessments and their impact on patients - The Next Generation of Value Assessment: Including the Patient Voice. This conference brought together leading
health economics researchers and patient advocates to discuss the connection between value assessment research and the practical applications that support and strengthen the decision-making process in the U.S. healthcare system. (PhRMA Foundation

I was invited to provide opening remarks on why value assessments are important from a patient perspective. What is a value assessment? The Institute for Patient Access (IfPA) explains this in easy to understand layman terms in their Fast Facts:The Institute for Clinical and Economic Review:

A value assessment can help governments and
other payers prioritize which expenses have
the greatest return on investment, or the most
value.Representing a balance of benefits and
costs to patients and society over time, a value
assessment can help inform decisions about how
to spend limited health care dollars.But for
patients, especially those with rare conditions,
value assessments can be used to restrict access to

I would like to share my remarks on an important and much needed conversation on improving how frameworks and metrics are developed in creating value assessments.

05 November 2019

RetreatMigraine 2020

The Migraine Diva is excited to be a co-organizer of RetreatMigraine 2020. The event is taking place April 17-19, 2020 in Redondo Beach, California. 

RetreatMigraine is a conference led by and focused on people living with migraine disease. The retreat will provide support, community, disease and treatment education, advocacy training, and complementary therapy experiences.

The Registration Lottery is open today through November 22, 2019.

Registration Lottery Details

  • Due to the large number of people interested in attending the event and the limited number of spaces, attendees will be selected via Lottery.
  • Registration Lottery Open: Nov. 1 at 8am - Nov. 22 at 5pm ET
  • Individuals selected from the Registration Lottery for attendance spots will be notified in early December 2019. At that time, registration fees will be billed (as outlined below) and due by January 15, 2020 in order for your spot to be locked in. 

Enter the Lottery for your chance to experience friendship, understanding and support. The details:
  • Event Dates: April 17-19, 2020
  • Event Location: Crowne Plaza Redondo Beach, California
  • Attendance Costs:
    • $200 patient (double occupancy)
    • $400 patient and caregiver (shared occupancy)
    • $400 patient (single occupancy)
    • $100 local patient or caregiver (does not include lodging)
  • Event Includes:
    • 2 nights lodging at the Crowne Plaza Redondo Beach (not included for local registrants)
    • 1 breakfast
    • 1 brunch
    • 1 lunch
    • 1 dinner
    • access to all programming
    • airport shuttle (LAX)

For any questions about the event, please email eileen.brewer@headachemigraine.org.


22 October 2019

It's Been Rough Y'all

That's the simplest and easiest way to describe this past year and a half. Between Aimovig failing me terribly, a potential breakthrough with Emgality and then disappointment, spikes in depression and anxiety, losing my disability and falling into a financial hole, and being burned out physically and mentally - to say that I have been struggling is an understatement.

17 October 2019

Migraine CareLine

The Migraine CareLine is designed to provide individualized case management assistance for those living with or needing screening for migraine disease. The Migraine Careline will provide assistance with navigating eligibility and enrollment in disability benefits and overcoming insurance coverage and financial burdens that impact their access to care.  For assistance, call 1-866-688-3625 or complete the form.

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