National Institutes of Health (NIH):
- Continued work toward increasing funding for NIH pain research
- Assisted in drafting the bipartisan “Opioids and STOP Pain Initiative Act of 2017” (S.2260/H.R.4733) introduced in the Senate and House on December 22, This bill includes provisions for $5B over 5 years to fund NIH research on pain and opioids, including establishment of an NIH Pain Therapy Screening Program.
- 2260/H.R.4733 includes provisions for appropriating $5 billion over ﬁve years to fund NIH pain research focused on pain and opioids, including establishment of an NIH Pain Therapy Screening Program.
- Worked to ensure the Consolidated Appropriations Act of 2018 (“Omnibus bill”) enacted on March 23, 2018, included appropriations for an additional $500M for NIH for “targeted research related to opioid addiction, development of opioid alternatives, pain management, and addiction treatment”
- Requested Report Language to ensure that NIH prioritizes some of the $500M HEAL (Helping to End Addiction Longterm) initiative funding toward research on headache disorders by issuing headache speciﬁc RFAs (Request for Application).
Department of Defense (DoD):
- Worked with Senator Patrick Leahy (D-VT) to ensure “chronic migraine and post-traumatic headaches” were again included in FY18 appropriations as an eligible topic area for research funding under the DoD, Peer-Reviewed Medical Research Program (PRMRP) of the Congressionally Directed Medical Research Program (CDMRP).Additional relevant eligible topic areas added to this program include “chronic pain management” and “non-opioid pain management”
- Since 2010,AHDA advocacy has helped lead to more than $18.5 million in CDMRP PRMRP research funding for “chronic migraine and post-traumatic headaches”
Social Security Administration (SSA):
- Circulated and received 22 signatures on the House Dear Colleague Letter requesting Report Language to:
- Create Social Security Ruling (SSR) describing how to apply the current Listing of Impairments (Blue Book) to migraine since there is currently no listing;
- Add migraine to the SSA Blue Book listings;
- Ensure that all Blue Book listings are updated every 5 years.
- Filed a Freedom of Information Act (FOIA) request to understand the rationale behind the exclusion of migraine from the Listing of Impairment revisions.
Food and Drug Administration (FDA):
- Sent a letter to the FDA seeking explanation for denying an expedited review of applications for new, non- addictive migraine drugs (CGRP/ CGRP-R antagonist monoclonal antibodies).
- FDA responded and included the ﬁrst ever declaration that “FDA agrees that migraine is a serious ” The regulatory categorization of “serious condition” is a pre-condition for any FDA expedited review of drug applications.
- As a result of previous advocacy efforts, the FDA reported that all Over-the-counter (OTC) migraine products will now include the warning:“Medication overuse headache warning: Headaches may worsen if this product is used for 10 or more days per month.”
Department of Veterans Affairs (VA):
- Continued work to improve specialty care for US veterans with chronic headache disorders, particularly chronic post-traumatic headache.
- Collaborated with Senator Brian Schatz (D-HI) to ensure that $10 million in appropriations was included in the Consolidated Appropriations Act of 2018 to establish ﬁve (or more) VA Headache Disorders Centers of Excellence within the VA health care system.These Centers will deliver and coordinate state of the art care for veterans with disabling headache disorders, as well as provide outreach educational programs and research.
Center for Medicare and Medicaid Services (CMS):
- Continued advocacy towards overturning the denial of Medicare and Medicaid coverage of home oxygen for cluster headache attacks.
- Partnered with Representative Andy Harris (R-MD) in sending separate letters of appeal to CMS Administrator Seema Verma and Health and Human Services Secretary Alex Azar, regarding the urgent need to change CMS policy around oxygen coverage.