Past Headache On The Hill Events

HEADACHE ON THE HILL THROUGH THE YEARS

Over the past 18 years, Headache on the Hill has grown from a small group of passionate, grass-roots advocates into a massive undertaking with hundreds of advocates representing 48 states. Participation data for Headache on the Hill from inception to 2022. The scale for participants and congressional offices visited is on the left-side y- axis, and the scale for states visited is on the right-side y-axis.

2024

Our 17th Annual Headache on the Hill took place on March 19, 2024. It was our first fully in-person Headache on the Hill since before the pandemic and brought together over 250 advocates from all 50 states which was an important milestone for us.

Ask 1: CO-SPONSOR THE SAFE STEP ACT

ASK 2: CO-SPONSOR THE NIH CLINICAL TRIAL DIVERSITY ACT

ASK 3: SUPPORT ROBUST FUNDING FOR THE HEADACHE DISORDERS CENTERS OF EXCELLENCE
2023

Our 16th annual Headache on the Hill event took place on February 14, 2023.

Ask #1: SAFEGUARD ACCESS TO SPECIAL EDUCATION SERVICES FOR CHILDREN WITH HEADACHE DISORDERS

Senators and Representatives were encouraged to sign a letter to the U.S. Department of Education requesting the Office of Special Education and Rehabilitative Services to issue a formal guidance memorandum affirming the potential eligibility of children with severe headache disorders under the “Other Health Impairments” category of the IDEA Act statutes and regulations should their health conditions adversely impact their educational performance in school.

In July of 2023, Rep. Cori Bush led the Dear Colleague letter on this important issue.

View the Letter Here

Ask #2: SUPPORT LONG-COVID HEADACHE RESEARCH

Congressional representatives were also asked by HOH advocates to consider cosponsoring the Care for Long COVID Act, which is being reintroduced in the 118th Congress.

Ask #3: CREATE A HOUSE HEADACHE CAUCUS

Members of the U.S. House of Representatives were invited to join a new Congressional Headache Caucus to work with their colleagues on bipartisan issues in the headache and migraine space.

Ask #4: SUPPORT ROBUST FUNDING FOR THE HEADACHE DISORDERS CENTERS OF EXCELLENCE

Members of Congress were asked to support robust funding for the expansion of the Veterans Health Administration’s Headache Disorders Centers of Excellence.
2022
Our fifteenth annual Headache on the Hill event took place on February 15, 2022.

Ask #1: Indian Health Service Headache Disorders Centers of Excellence

US American Indian / Alaskan Native (AI/AN) communities have the highest prevalence of disabling headaches. Over 560,000 people (22.1% of 2.56 million) under Indian Health Service care have migraine or severe headaches. We are proposing a new Headache Disorders Centers of Excellence program to include direct care, telehealth, consultation, education, training, and research.
Ask #2: General Accountability Office (GAO) report on NIH funding realtive to disease burden, especially for headache disorders.

Congress has directed National Insitutes of Health (NIH) to consider disease burden in funding decisions, and NIH has committed to doing so. The Appropriations Committee “expects NIH to consider the burden of a disease when setting priorities”. The NIH HEAL Initiative statutory authority [42 USC § 284q–1] mandates disease burden as a funding priority. The NIH-Wide Strategic Plan cites disease burden as “a crucial, but not the only, consideration”. Yet some diseases languish, year after year, with chronic under-funding of NIH research relative to their burdens. Migraine is the least-funded research area relative to its very high burden – 14-fold disparity in 2017
- House Leave Behind for GAO report on NIH
2021
Our fourteenth annual Headache on the Hill event was held on March 23, 2021

HOUSE & SENATE LEAVE BEHINDS:

House NIH HEAL Initiative Appropriations Leave Behind

House VA HCoE Expansion Appropriations Leave Behind

Senate NIH HEAL Initiative Appropriations Leave Behind

Senate VA HCoE Expansion Appropriations Leave Behind

LETTERS

Senate Draft NIH Letter

SENATE VA DEAR COLLEAGUE LETTER – FINAL
INTRODUCED BY:
- Sen. Brian Schatz (D-HI)
- Sen. Bill Cassidy (R-LA)
CO-SIGNED BY (ADD’L 12 SENATORS):
- Sen. Michael F. Bennet (D-CO)
- Sen. Richard Blumenthal (D-CT)
- Sen. Tammy Duckworth (D-IL)
- Sen. Richard Durbin (D-IL)
- Sen. John Hickenlooper (D-CO)
- Sen. Mazie Hirono (D-HI)
- Sen. Tim Kaine (D-VA)
- Sen. Ben Ray Lujan (D-NM)
- Sen. Bernie Sanders (I-VT)
- Sen. Debbie Stabenow (D-MI)
- Sen. Thom Tillis (R-NC)
- Sen. Chris Van Hollen (D-MD)
HOUSE VA DEAR COLLEAGUE LETTER – FINAL

INTRODUCED BY:
- Rep. Madeleine Dean (D-PA-4th)
- Rep. David McKinley (R-WV-1st)
- Rep. Peter Welch (D-VT-AL)
- Rep. Brian Fitzpatrick (R-PA-1st)
CO-SIGNED BY (ADD’L 47 REPRESENTATIVES):
- Rep. Colin Allred (D-TX-32nd)
- Rep. Cindy Axne (D-IA-3rd)
- Rep. Donald Beyer (D-VA-8th)
- Rep. Anthony Brown (D-MD-4th)
- Rep. Salud Carbajal (D-CA-24th)
- Rep. Joaquin Castro (D-TX-20th)
- Rep. Judy Chu (D-CA-27th)
- Rep. Emmanuel Cleaver (D-MO-5th)
- Rep. Jim Cooper (D-TN-5th)
- Rep. Joe Courtney (D-CT-2nd)
- Rep. Jason Crow (D-CO-6th)
- Rep. Sharice L. Davids (D-KS-3rd)
- Rep. Mark DeSaulnier (D-CA-11th)
- Rep. Debbie Dingell (D-MI-12th)
- Rep. Anna Eshoo (D-CA-18th)
- Rep. Dwight Evans (D-PA-3rd)
- Rep. Bill Foster (D-IL-11th)
- Rep. Ruben Gallego (D-7th-AZ)
- Rep. Al Green (D-TX-9th)
- Rep. James Himes (D-CT-4th)
- Rep. Henry C. “Hank” Johnson, Jr. (D-GA-4th)
- Rep. Mondaire Jones (D-NY-17th)
- Rep. John Katko (D-NY-25th)
- Rep. Ro Khanna (D-CA-17th)
- Rep. Shelia Jackson Lee (D-TX-18th)
- Rep. Andy Levin (D-MI-9th)
- Rep. Ted Lieu (D-CA-33rd)
- Rep. Zoe Lofgren (D-CA-19th)
- Rep. Steven Lynch (D-MA-8th)
- Rep. Lucy McBath (D-GA-6th)
- Rep. A. Donald McEachin (D-VA-4th)
- Rep. Tom Malinowski (D-NJ-7th)
- Rep. Sean Patrick Maloney (D-NY-18th)
- Rep. Richard E. Neal (D-MA-1st)
- Rep. Marie Newman (D-IL-3rd)
- Rep. Ilhan Omar (D-MN-5th)
- Rep. Scott Peters (D-CA-52nd)
- Rep. Katie Porter (D-CA-45th)
- Rep. Bill Posey (R-FL-8th)
- Rep. Jamie Raskin (D-MD-8th)
- Rep. Lisa Blunt Rochester (D-DE-AL)
- Rep. Mary Gay Scanlon (D-PA-5th)
- Rep. Jan Schakowsky (D-IL-9th)
- Rep. Elissa Slotkin (D-MI-8th)
- Rep. Christopher Smith (R-NJ-4th)
- Rep. Haley Stevens (D-MI-11th)
- Rep. Thomas R. Suozzi (D-NY-3rd)
- Rep. Paul Tonko (D-NY-20th)
HOUSE NIH DEAR COLLEAGUE LETTER – FINAL

INTRODUCED BY:
- Rep. Madeleine Dean (D-PA-4th)
- Rep. David McKinley (R-WV-1st)
- Rep. Peter Welch (D-VT-AL)
- Rep. Brian Fitzpatrick (R-PA-1st)
Co-Signed by (add’l 43 Representatives):
- Rep. Colin Allred (D-TX-32nd)
- Rep. Cindy Axne (D-IA-3rd)
- Rep. Anthony Brown (D-MD-4th)
- Rep. Ami Bera (D-CA-7th)
- Rep. Joaquin Castro (D-TX-20th)
- Rep. Emmanuel Cleaver (D-MO-5th)
- Rep. Steve Cohen (D-TN-9th)
- Rep. Jason Crow (D-CO-6th)
- Rep. Sharice L. Davids (D-KS-3rd)
- Rep. Danny K. Davis (D-IL-7th)
- Rep. Suzanne DelBene (D-WA-1st)
- Rep. Anna Eshoo (D-CA-18th)
- Rep. Dwight Evans (D-PA-3rd)
- Rep. Bill Foster (D-IL-11th)
- Rep. Ruben Gallego (D-7th-AZ)
- Rep. Al Green (D-TX-9th)
- Rep. James Himes (D-CT-4th)
- Rep. Henry C. “Hank” Johnson, Jr. (D-GA-4th)
- Rep. Ro Khanna (D-CA-17th)
- Rep. Andy Kim (D-NJ-3rd)
- Rep. Shelia Jackson Lee (D-TX-18th)
- Rep. Ted Lieu (D-CA-33rd)
- Rep. Andy Levin (D-MI-9th)
- Rep. Zoe Lofgren (D-CA-19th)
- Rep. Stephen F. Lynch (D-MA-8th)
- Rep. Lucy McBath (D-GA-6th)
- Rep. A. Donald McEachin (D-VA-4th)
- Rep. Marie Newman (D-IL-3rd)
- Rep. Ilhan Omar (D-MN-5th)
- Rep. Scott Peters (D-CA-52nd)
- Rep. Katie Porter (D-CA-45th)
- Rep. Bill Posey (R-FL-8th)
- Rep. Jamie Raskin (D-MD-08)
- Rep. Lisa Blunt Rochester (D-DE-AL)
- Rep. Mary Gay Scanlon (D-PA-5th)
- Rep. Jan Schakowsky (D-IL-9th)
- Rep. Elisa Slotkin (D-MI-8th)
- Rep. Christopher Smith (R-NJ-4th)
- Rep. Abigail Davis Spanberger (D-VA-7th)
- Rep. Haley Stevens (D-MI-11th)
- Rep. Thomas R. Suozzi (D-NY-3rd)
- Rep. Paul Tonko (D-NY-20th)
- Rep. Joe Wilson (R-SC-2nd)
2020
Our thirteenth annual Headache on the Hill event was held on February 10-11, 2020.

House & Senate Leave Behind:
Opioid Workforce Act:
- Senate Bill 2.2892
- House Bill H.R.3414
2019
House and Senate Leave Behinds for NIH HEAL Ask:
- 2019 House Leave Behind – HEAL
- 2019 Senate Leave Behind – HEAL
Letter to NIH – Francis Collins

House and Senate Leave Behinds for Disability Ask:
Outcomes:
- House Dear Colleague Letter signed by 22 Representatives
- House LHHS Committee Report
2018
Our eleventh annual Headache on the Hill event was held on February 12-13, 2018.

House & Senate Leave Behind:
- HOH 2018 Opioids and STOP Pain Leave Behind
Opioids and STOP Pain Initiative Act of 2017 Bill:
- Senate Bill S.2260
  - Introduced by: Brian Schatz (D-HI)
  - Cosponsored by:
    - Bob Casey (D-PA)
    - Chris Coons (D-DE)
    - Angus King (I-ME)
    - Bill Nelson (D-FL)
    - Jon Tester (D-MT)
    - Sheldon Whitehouse (D-RI)
- House Bill H.4733
  - Introduced by: Peter Welch (D-VT)
  - Original Cosponsor: David McKinley (R-WV)
  - Cosponsored by:
    - Jodey Arrington (R-TX)
    - Andy Biggs (R-AZ)
    - Earl Blumenauer (D-OR)
    - Suzanne Bonomici (D-OR)
    - Julia Brownley (D-CA)
    - Ken Buck (R-CO)
    - David Cicilline (D-RI)
    - Steve Cohen (D-TN)
    - John Culberson (R-TX)
    - John Duncan Jr. (R-TN)
    - Debbie Dingell (D-MI)
    - Eliot Engel (D-NY)
    - Anna Eshoo (D-CA)
    - Ruben Gallego (D-AZ)
    - Jared Huffman (D-CA)
    - Evan Jenkins (R-WV)
    - Ro Khanna (D-CA)
    - Peter King (R-NY)
    - Annue Kuster (D-NH)
    - Conor Lamb (D-PA)
    - Jim Langevin (D-RI)
    - John Larson (D-CT)
    - Zoe Lofgren (D-CA)
    - Jim McGovern (D-MA)
    - Alex Mooney (R-WV)
    - Seth Moulton (D-MA)
    - Beto O’Rourke (D-TX)
    - Donald Payne Jr. (D-NJ)
    - Jamie Raskin (D-MD)
2017
Our tenth annual Headache on the Hill event was held on February 13-14, 2017.

House & Senate Leave Behind:
- HOH 2017_Pain Research_Leave Behind
- HOH-2017_CARA Language
2016
Our ninth annual Headache on the Hill event was held on February 8-9, 2016.

Senate Leave Behinds
House Leave Behinds
- HOH 2016_House_NIH Funding Report Language Leave Behind (PDF Format)
- HOH 2016_House Letter & Report Language (PDF Format)