Advocacy

Questions on CGRP

Real News on CGRP Access

May 22, 2018 / 0 Comments

Aimovig, the first CGRP inhibitor drug, was approved by the FDA on May 17, 2018. This is extremely exciting news, but there are a lot of questions swirling around as many of us are anxious to try this new medicine. For the most up-to-date information about Aimovig visit Aimovig.com. The site includes Frequently Asked Questions, information on how the drug works, safety information AND information about a co-pay assistance program and a two-month free trial program. Worried About Access To CGRP Inhibitors? Many patient groups are working to address anticipated access issues to this new medication, including how to get a prescription from your doctor and to how to get your insurance company to cover it. However, these questions won’t be answered overnight.  You are not alone and you deserve access to care that is appropriate for the disease you have. The information below may answer some of your immediate questions, guide…

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My 2nd ICER Submission for CGRP Review

May 8, 2018 / 0 Comments

To find out more about ICER (Institute for Clinical & Economic Review) watch this video or check out the Patient Input Guide. This is my submission to ICER about the importance their review of new CGRP inhibitor drugs will have on my life and our entire community. -Katie ICER OPEN COMMENT PERIOD ON CGRP INHIBITORS FOR MIGRAINE I had my first migraine attack with aura at age five. My vision was obstructed by a sparkling crescent moon shape. Within 20 minutes it had disappeared. Next it felt like someone was pounding a nail into my skull, over and over again. My parents held me in their arms for hours as I screamed in pain. I became dehydrated from crying, only making the searing pain in my head worse. The daylight streaming in from the window felt like more daggers. After six hours of torture, I vomited until my stomach was…

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Migraine Patient Input for ICER Report – My Submission

November 28, 2017 / 0 Comments

Introduction I wanted to share my response to the ICER patient input questions. I definitely went into a lot of detail. Please do not feel you need write a book. The questions that are the most important to focus on are #1, #2, #4, #5, & #7. It’s ok to leave questions blank. To learn more about the Migraine Patient Open Input period and how ICER’s review will impact access to new CGRP medications, visit https://www.headachemigraineforum.org/advocacy/ The ICER form can be found here: https://icer-review.org/patient-guide-to-open-input/ This is our chance to be heard! But the deadline is this Thurs, Nov 30th at 5pm EST! If you want to share your responses, let me know and I’d be happy to post them there! ____________________________________________________ On which ICER report are you providing input? Erenumab for Migraine Organization (if applicable): Patient Briefly describe your disease experience, including your diagnosis, treatments you’ve used, etc. Be as…

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Photo Friday: Wisdom of Crowds

August 4, 2017 / 2 Comments

I took this photo in 2015 at the offices of Health Union, the parent company of Migraine.com. I was, and still am, intrigued by the artwork of the brain made up by hands. The artwork was created with chalk on a blackboard, with incredible detail and precision. The hands represent working together, which beautifully depicts the quote inscribed in chalk below the image: The wisdom of crowds is considerably greater than any one person working alone. Writing could be lonely…if I let it. The best part of chronicling my illness has been sharing the thoughts from my defective brain with others, creating a dialogue. Some of the easiest things to write have been inspired by conversations with my migraine and chronic pain family. There’s beauty in listening to different viewpoints to create a shared message. The notion that a crowd is louder together than individual voices extends into advocacy. What…

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Why Being “Disabled” is a Full-Time Job

July 26, 2017 / 3 Comments

*************************SEEKING APPLICANTS************************* Job Title Chief Medical Officer of Personal Health Affairs (AKA Social Security Disability Beneficiary) Job Description Full-time position, flexible hours. Prerequisite: Ideal candidate would have a background in all of the following areas: analytics, accounting, patient advocacy, medical billing, insurance underwriting, legalese, pharmacology, healthcare administration, Social Security Disability, Medicare & Medicaid. Preference for those with M.D., Ph.D., CPA, RN, NP or Esq. behind their name. Skills: The ideal candidate would be well organized, exhibit patience, possess a friendly phone manner, anticipate problems, show initiative, diligent in finding correct answers and keep meticulous notes. Job Duties May Include: Schedule, prep and arrange transportation for 1-3 doctors’ visits per month. To include compiling a list of questions, a list of medications, changes in symptoms and provide medical records from other healthcare providers Interpret insurance policies and medical billing codes Reconcile medical bills Track payments toward deductibles Inquire about incorrect medical…

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Photo Friday – Past 5 Weeks of Travel

July 14, 2017 / 2 Comments

Today, I’m getting on a plane from DC back to LA. The past 5 weeks have been filled with conferences, interviews, writing, education, planning, advocacy and lots of travel. I had a friend ask me how I travel so much with such debilitating chronic migraine? My response was: If there’s something really important to me, I prepare. I rest. I find the strength from somewhere to push through. But I pay for it. I have a hard time saying no, but I’ve been better at picking and prioritizing what’s important. If it means that much to me, I sacrifice my health. Is that smart? No. But I want to live, not just survive. It’s worth it to me. I realize that not everyone can travel, whether it’s for a conference or even a family vacation. I won’t pretend that my health has been great this whole time. I’ve had my…

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The INvisible Project – Migraine Edition

June 28, 2017 / 0 Comments

You may have seen me post about the Invisible Project, but I don’t think I’ve taken the time to explain it. It’s a magazine that highlights the lives of those LIVING with chronic pain and tells their stories, emphasizing pictures from their personal archives. The main purpose is to make the invisible more visible. The INvisible Project is the flagship program of the US Pain Foundation (go “Like” their page!). Nicole Hemmenway, VP of US Pain and Director of the Invisible Project, conceived this project with the goal of showing the real impact of chronic illness, which is not always pretty. Previous editions covered multiple chronic illnesses. This year was the first time a disease-specific magazine was produced, focusing on migraine. It launched in early June, just in time for Migraine & Headache Awareness Month. The Migraine Edition Nicole and editor Jenni Grover, of Chronic Babe, approached me late last…

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Understanding the Healthcare and Proposed Budget Plans

May 25, 2017 / 0 Comments

I’m frustrated with what’s happening on Capitol Hill. Proposed changes to healthcare and proposed budget cuts will affect millions, including you.

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Photo Fridays – My Broken Brain

May 12, 2017 / 0 Comments

This is one of my favorite migraine awareness t-shirts. Designed by Don Vanderpool, who runs a Facebook group called “My Broken Brain.” He created this shirt last year and I wear it all the time, especially when I’m about to go into migraine battle! The back of the shirt covers just about all of the symptoms that go along with migraine attacks that I can think of. Are there any words on here that describe your migraine attacks? Hiccups, food cravings, anger, cognitive dysfunction, and restless leg are all ones that I deal with. As Don explains: My Broken Brain is intended to be a place those of us who suffer migraines can simply find others going through the same things. Family members too! I know this disease affects them terribly as well. I would love to see friends and family represented here as much as the migraineurs. Won’t find…

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I am Pro-human. Pro-decency. Pro-morals. Pro-healthcare.

May 8, 2017 / 0 Comments

I am Pro-human. Pro-decency. Pro-morals. Pro-healthcare. What happened last Thursday, when the House approved the American Health Care Act (AHCA), represents none of these things. My anger doesn’t just stem from the fact that if passed by the Senate “as is” and enacted into law, it will personally affect me in regards to my pre-existing conditions. My anger lies in the injustice that could be done to millions of Americans, especially to those of you reading this because it likely will affect you, my friends in the chronic pain community. Why is Everyone Saying #ihaveapreexistingcondition ? Like many of those who voted for the AHCA law, I have not read it. After pouring over dozens of articles written by those far more intelligent than me, I have discerned that the blanket statement of “the AHCA law does not cover pre-existing conditions,” is not accurate. The nuances of the bill, however,…

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Katie Golden

Katie is a professional patient, writer for Migraine.com, US Pain Ambassador, patient advocate, speaker, and freelance writer.

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