Advocating for Equitable Policies for People with Headache Disorders

2020 ANNUAL REPORT

The Alliance for Headache DisordersAdvocacy (AHDA) is a 510(c)6 nonprofitmembership organization. We arecomprised of nonprofit organizations thatare concerned about the health of patientswith headache disorders, includingmigraine disease, cluster headaches,chronic daily headache, new dailypersistent headache and tension-typeheadaches.

Since 2007, AHDA has advocatedconsistently for increased recognition of,and more equitable federal policies towardAmericans with disabling headachedisorders. Our advocacy efforts include ourannual signature event, Headache on theHill (HOH), a congressional fly-in event inWashington, DC, as well as multiple otheractivities throughout the years.

Headache disorders cause more than 1percent of all disability and 9 percent of alllost labor in the United States every year.Migraine is the #1 cause of U.S.neurological disability, and the #10 causeof all U.S. disability. Headache disordersare the most prevalent neurologicaldisorders, affecting more than 90% of allAmericans.

The U.S. annual direct and indirecteconomic costs of headache disordersexceed $31 billion.

disorders, affecting more than 90% of all

The U.S. annual direct and indirecteconomic costs of headache disordersexceed $31 billion.

Amplifying the Voices ofIndividuals Living with Headache

Disorders and Migraine

2 | A H D A 2 0 2 0 A N N U A L R E P O R T

Securing $10M in funding for seven regional VA Headache Disorders Centers of ExcellenceSecuring more than $18.5M funding for “chronic migraine and post-traumatic headaches” researchfunding under the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) of theCongressionally Directed Medical Research Program (CDMRP) since 2010Helped draft the “Safe Treatments and Opportunities to Prevent Pain Act” (STOP Pain Act, S.2678) and sawthis signed into law in 2016

Working to determine why migraine, the 2nd leading cause of all global disability, is not currently listed inthe Social Security Administration’s Blue Book Listing of ImpairmentsAppealing Center for Medicare & Medicaid Services (CMS) long-standing policy for not covering homeoxygen for people with cluster headache.

Dear Friends,

What a busy year it has been at the Alliance for Headache Disorders Advocacy (AHDA)! We cannot thankenough the amazing advocates who help us and our member organizations give voice to those living withheadache disorders and migraine. Since 2007, AHDA has been on the front lines of advocating for moreequitable federal policies toward Americans with disabling headache disorders. We look forward to continuingour efforts in 2021 with the new administration and engaging more individuals to stand and be counted in thelegislative process. In this annual report, you can learn more about our work and accomplishments in 2020!

We hope this holiday season, you will consider making a donation to AHDA. As many of you know, funding forAHDA activities is entirely derived from the contributions of our member organizations and individual donors.No donations have ever been accepted from corporate, commercial, or industry sources. So, your support isvery important to us and will assist us in starting an endowment to help ensure the financial strength of theorganization.

Your donations also will help support AHDA in successful initiatives such as:

Donations also will support us in ongoing initiatives such as:

No gift is too small or too large! We appreciate every dollar we get to use to affect policy change. Visit ourwebsite today to make a donation. Thank you in advance for your contributions!

On behalf of the board and staff, we wish you and your families a safe and happy holiday season!

hof the

, S.2678) and saw

sability, is not currently listed in

ding policy for not covering home

o afffff ect policy change. Visit ourns!

oliday season!

A Message from the Board PresidentC H R I S G O T T S C H A L K , M D F A H S

3 | A H D A 2 0 2 0 A N N U A L R E P O R T

February 10 -11 - Hostedthe 13th Annual Headacheon the Hill event.

February 18 - Submittedquestions to Rep. JohnLarson to ask SSACommissioner Saul aboutthe discriminating policies existing in the current SSASequential Evaluationprocess & following up onthe SSA refusal to complywith our FOIA request. Weasked for co-sponsors onH.R.3414/S.2892. Nine newHouse co-sponsors (5of which we visited) & 4 newSenate co-sponsors on (3 ofwhich we visited).

February 25 - Bob Shapiro,Katie MacDonald, Bob Wold,and Eileen Brewer had anin-person meeting at CMSwith their Coverage andAnalysis Group personnel tofurther discuss their delayin addressing the appealsubmitted to CMS in January2019 for coverage of homeoxygen for ClusterHeadache for Medicare/Medicaid beneficiaries.

March 23 - Submittedwritten testimony to HouseLHHS AppropriationsSubcommittee for theannual Public WitnessHearing.

What an amazing 2-day gathering we had in February,with 173 participants from 45 states! This represents an8% increase in participation from the 2019 event.

Patient and medical professionals gathered the first dayfor an advocacy training, where AHDA's Bob Shapiro andKatie MacDonald outlined the legislative items and therequests we had for members of Congress. Thank you toJoe Gagen for providing the great information on howdecisions are made on the Hill and the "Dos" and "Don'ts"of congressional meetings.

The second day, we took our annual group photo and wevisited 225 Congressional offices!

We are grateful to Lindsay Videnieks and the Headacheand Migraine Policy Forum (HMPF) for sponsoring ourannual luncheon on the Hill. And we give a special thanksto our advocates for their tireless efforts in giving voice tothose living with headache disorders and migraine. Youare our heroes, and together, we can affect change!

d in February,This represents an

the 2019 event.

sionals gathered the first dayg, where AHDA's Bob Shapiro and

tlined the legislative items and thefor members of Congress. Thank you to

providing the great information on howre made on the Hill and the "Dos" and "Don'ts"

gressional meetings.

second day, we took our annual group photo and wed 225 Congressional offfff ices!

eful to Lindsay Videnieks and the Headacheolicy Forum (HMPF) for sponsoring our

on the Hill. And we give a special thankstheir tireless efffff orts in giving voice t

he disorders and migraine. Yer, we can afffff ect chang

13TH ANNUALHEADACHE ON

THE HILLB U I L D I N G A

C O M M U N I T Y O FA D V O C A T E S

2020 Accomplishments Timeline

SAVE THE DATE14th Annual Headache on the Hill

Goes Virtual on March 23, 2021!4 | A H D A 2 0 2 0 A N N U A L R E P O R T

13th Annual Headache on the HillPhoto Gallery

5 | A H D A 2 0 2 0 A N N U A L R E P O R T

April 1 - Submitted writtencomments for the NIH StrategicPlan.

June 15 – Signed on to a letter ledby Healthy Women addressed toNIH Director Collins and FDACommissioner Hahn urging themto hold more public meetings togather input about the patientperspective and individualizationof pain treatments.

June 16 - Submitted publiccomment to the CDC PainManagement Program sharingour concerns about the lack ofeffective, non-addictivetreatments for people withmigraine and headache diseaseand encouraging the CDC topromote optimal principles ofmigraine care.

June 22- Joined the Disparities inHeadache Advisory Council beingled by CHAMP.

June 30 – July 7 - Held first Walk,Run or Just Relax virtualfundraising event with 209participants. We raised $26,514.The funds will support ascholarship fund for futurepatient advocates to attend HOHin DC.

July 8 – Supported a successfulproposal by the Spinal CSF LeakFoundation for implementation ofnew ICD-10 codes forspontaneous and iatrogenicintracranial hypotension, cranialand spinal CSF leaks, and otherassociated codes.

We are proud to have submitted written testimony in March onbehalf of our community to the House Labor, Health and HumanServices Appropriations Subcommittee for the annual PublicWitness Hearing. Our testimony focused on the following issues:

(1) All Americans deserve equal access to the benefits and hopethat come from tax-payer funded NIH research, (2) The Social Security Administration is unlawfully discriminatingagainst Social Security Disability Insurance claimants on the basisof their disability, and (3) It is unethical for the Center for Medicaid Services to withholdsafe and effective oxygen therapy from Medicare and Medicaidbeneficiaries in excruciating pain with cluster headache.

CMS announced a 30-day open comment period in response toour formal appeal to reverse a policy denying the coverage ofhome-use oxygen for cluster hadache, submitted originally inJanuary 2019.

AHDA worked with CHAMP and other member organizations inAugust to launch a call for comments from patients and memberorganizations.

In October, AHDA submitted a draft letter to the Ways & Means,Social Security Subcommittee Chairman John Larson to be sent toSocial Security Commissioner Andrew Saul, and we submittedcritique of Social Security Ruling (SSR) 19-4P outlining ourconcerns with the Ruling issued in August 2019.

uly 8 – Supported a successfulproposal by the Spinal CSF LeakFoundation for implementation ofnew ICD-10 codes forspontaneous and iatrogenicintracranial hypotension, cranialand spinal CSF leaks, and otherassociated codes.

Ways & Means,John Larson to be sent to

Andrew Saul, and we submittedrity Ruling (SSR) 19-4P outlining our

h the Ruling issued in August 2019.

ADVOCATING FOR EQUITYF I G H T I N G A G A I N S T

D I S C R I M I N A T I O N

2020 Accomplishments Timeline

6 | A H D A 2 0 2 0 A N N U A L R E P O R T

July 9 – Issued formal statementon racial inequities inhealthcare and headachemedicine.

July 13 - We ensured thefollowing language was includedin the FY2021 HouseAppropriationsCommittee Report:“Headache Disorders - TheCommittee strongly urgesNINDS to consider fundingapplications on fundamental,translational, and clinicalresearch on headachedisorders, including migraine,posttraumatic headache, thetrigeminal autonomiccephalalgias, and intracranialhypo/hypertension, that alignwith the HEAL Initiative’s goal toachieve rapid and long-lastingsolutions to the opioid crisis. “

August 15 – Added Dr. LarryCharleston, IV as Member atLarge to AHDA Board.

August 17 – CMS announced a30-day open comment periodfor oxygen appeals submittedoriginally in January 2019. AHDAworked with CHAMP andmember organizations tolaunch call for comments frompatients and memberorganizations.

member organizations tolaunch call for comments frompatients and memberorganizations.

SUMMER VIRTUAL FUNDRAISERR A I S I N G F U N D S F O R T H EH E A D A C H E O N T H E H I L L

S C H O L A R S H I P F U N D

From June 30-July 7, 209 individuals from across the countryparticipated in AHDA's first Walk, Run or Just Relax virtualfundraising event! We raised $26,514 for a scholarshipfund to support future patient advocates attendingHeadache on the Hill in Washington, DC.

Thank you to members of AHDA and CHAMP participantswho helped coordinate this wonderful event for us. Andthank you to all of our participants for helping us toadvance our mission!

2020 Accomplishments Timeline

7 | A H D A 2 0 2 0 A N N U A L R E P O R T

September 23 – New part-timeExecutive Director, CaroleBernard started with AHDA

September 30 – Rep. MadelineDean and Rep. Brenda Lawrenceissued House Resolution 1160with a focus on migraine andwomen.

October 12 – Submitted draftletter to Ways & Means SocialSecurity SubcommitteeChairman Larson to be sent toSocial Security CommissionerAndrew Saul. Also submittedcritique of SSR 19-4P outlining ourconcerns with the Ruling issued inAugust 2019.

October 16 – Launched VoterVoice campaign for outreach toRepresentatives aboutH.Res.1160.

Disability (including Social Security Administration issues) Workplace Impact (including presenteeism/absenteeism)StigmaDisproportionate Impact on Black, Indigenous, and Peopleof Color (BIPOC) Specific Focus on Cluster Headache (including formalrecognition of lack of treatment access)Access to TreatmentFederal Research Funding

AHDA and HMPF worked with Congresswoman MadelineDean's office on H.Res.1160, a resolution to raise awarenesson migraine disease and headache disorders.

In September, Representatives Madeline Dean and BarbaraLawrence introduced H.Res.1160. Many thanks to HMPF andour partner organizations for their input to help ensure theresolution covers topics such as:

In October, AHDA launched a Voter Voice campaign requestingsupport from the community to contact their Representativesabout H.Res.1160 to acquire additional co-signers for theresolution. Thank you to our advocates who submitted 344messages to their Representatives requesting co-sponsorshipof this resolution.

HOUSE RESOLUTIONR A I S I N G A W A R E N E S S &

R E D U C I N G S T I G M A

2020 Accomplishments Timeline

"H.Res.1160 highlights themigraine and headachedisorders that impact nearly20% of women and occurnearly three times more oftenamong women than men. It’simportant we cancel thestigma that is often coupledwith migraine and headachedisorders, and recognize thesevere symptoms and physicalpain that is often dismissed.” -Representative Madeline Dean(9/30/20 Press Release fromDean's Office.)

oter Voiceo contact their Repredditional co-signers for the

advocates who submitted 344tatives requesting co-sponsorship pain

Representativ(9(9( /9/9 3/3/ 0/0/0 2/2/ 0 PreDean's OfOfO ffff ifif

8 | A H D A 2 0 2 0 A N N U A L R E P O R T

ADVOCATE SPOTLIGHTM E E T B I L L Y D W Y E R , M S W , L S W

know how that would manifest. I felt compelled inthose weeks and months afterwards in talking toother suicide loss survivors and other folks who hadcompletely different experiences, who had somepain in their lives. I knew I wanted to try to use mysister’s story to ensure that folks didn’t forget thestruggle of those who are chronically ill and strugglewith mental health issues and migraine,” says Billy.

Melissa’s struggle is familiar to many in the headacheand migraine communities. Her migraine seemed toprogress in middle school and high school. Billy canremember his mom sleeping on ER couches while heprepared to go to school the next morning. Therewere seasons where it was relatively good andMelissa would find a treatment that would work for ashort period of time. She tried her best to work aregular job, and she also attended the localUniversity for a while. Eventually, she had to stopthose activities and she ended up being permanentlybedridden.

Billy says he for a long time, as a boy, he didn’t graspthe severity of what his sister was experiencing. “Iwas the baby in the family and in my selfish stagewhere it’s me, me, me. I wrestled with feeling sort offorgotten about, which I think is common with folkswho have siblings or who have experience withsomeone who is chronically ill.”

Migraine is a misunderstood disease, he says.Melissa didn’t know anyone else whose struggle wasso severe. Many of the organizations today that

“I remember my sister being gone with my mom a lot,”says 25-year-old Billy Dwyer. “My mom, in addition, toworking a full-time job, was my sister’s full-timecaregiver. I remember them going to the hospital andseeing specialists – in and out – trying to find somesort of relief or a cure.” Billy’s older sister Melissa, whostruggled with chronic migraine, died by suicide in2013 right before her 23rd birthday and a few daysafter Billy graduated from high school. Billy is an Illinois native who lives and works inWashington, DC as a legislative correspondent andassistant scheduler for 2nd District of IllinoisCongresswoman Robin Kelly, a position he startedalmost two years ago. He received his Master’s degreein Social Work from the University of Illinois atUrbana-Champaign with a focus in Leadership andSocial Change. Billy remembers one of his policyprofessors telling his class “that you can be the bestclinician in the whole entire world; you can be the besttherapist. You’ll see 100 or 200 people maybe if you’relucky and you will impact their lives very deeply. But ifyou want to help millions and thousands of people –you have to be involved in the legislative process andyou have to be at the table where decisions are beingmade. You can do advocacy as part of your job.” Billysays that statement struck a major chord with him. Hetook these professor’s words and began to envisionhow he could use the common pain of folks and theirstories and storytelling in way to influence change.

“Following the loss of my sister, I really wanted tofocus on how to use my story. I always felt like I hadan empathetic nature in me and I really didn’t

9 | A H D A 2 0 2 0 A N N U A L R E P O R T

hisiblings or w

omeone who is chron

Migraine is a misunderstMelissa didn’t know anyonso severe. Many of the orga

ally wanted toory. I always felt like I had

n me and I really didn’t

P O R T

"I knew I wanted to try to use my sister’s storyto ensure that folks didn’t forget the struggle ofthose who are chronically ill and struggle withmental health issues and migraine.”

ADVOCATE SPOTLIGHTB I L L Y D W Y E R - C O N T I N U E D

You don’t have to understand it. One of the mostvaluable lessons in my life has been – I don’t have tohave ever lived the experience that you have had –and you don’t have to have those experiences forme. Just being able to see the pain in someone elseand being able to say, 'I don’t know what you’regoing through, but I am here for you and I am goingto walk down this path with you.’ Those are the mostvaluable words.”

Billy and his mom, Becky, have participated inseveral of AHDA’s Headache on the Hill events. “Just2 ½ -3 years ago, I was on that side of the table,advocating – sharing my sister’s story with a group offellow advocates, and caregivers and people livingwith migraine, and now I’m going to be the onereceiving those meetings. That’s quite the full circle,”he says smiling. We look forward to working withBilly to coordinate a meeting with CongresswomanKelly for the 2021 Headache on the Hill event. Billy states, “When it first happened, I was screamingfrom the roof tops, ‘hear my pain, this is my story’and everybody listened to me. Now, I am much morecomfortable, healed and able to talk about this froma place where it's not ‘hear my pain’. Now, it's ‘here’smy story and how can I help you get from a place offeeling hopeless or feeling lost? How can I connectyou to resources? How can I help you engage and bea successful advocate?’ It’s ‘tell my sister’s story andhelp someone else.’” We are so grateful to Billy andhis mom, and to all of the advocates who help toamplify the voices of the community to createlegislative change and increase awareness.

focus on headache disorders and migraine were intheir infancy stage when Billy’s sister was alive. Therewere events and an online community that helped,and continue to support, so many people who felt soisolated and misunderstood in their entire existence.“Being able to open those doors and see thatsomeone else gets it is so empowering for these folks.It can be such a healing place for people,” says Billy.

Shortly before Melissa’s suicide, she had gone to seesome of the best specialists, filling her with great hopethat she would be cured this time. When this round ofspecialist visits did not bring healing, there was aprofound sense of hopelessness. Billy believes that itwas the ups and downs – getting your hopes up wayhigh for a treatment and the isolation that contributedto his sister’s decision to end her life. “ She was such asocial person, the life of the party, a drama queen, andI can say that as her loving brother,” he says smiling.“A lot of her friends couldn’t understand, relationshipsfell through. Your friends are no longer answeringyour phone calls or your texts after a while, and youcancel plans with them again for the 15th time.They’re sick of it because they just don’t get it. I thinkthat only added to the loneliness. The physical headpain and the lack of hope for a treatment and theisolation feeling.”

When asked what advice he would share with otherswho know someone living with a headache disorder ormigraine, Billy says it is important to be able tovalidate someone’s pain. “In the mental health realm,they always say, if someone has a broken arm, you cansee it. They have a cast so you can appreciate the painthey are in and validate it. If someone is lying in a darkroom for 20 hours a day because their brain feels likeit is on fire, you can’t see it so it is easier to dismiss itand say your pain is not as a real as someone else’s. Ithink just being able to validate someone else’s pain.

his moamplifyfyf the volegislative change and

u csomeone is y

cause their brain feelst so it is easier to dismiss it

as a real as someone else’s. Ivalidate someone else’s pain.

1 0 | A H D A 2 0 2 0 A N N U A L R E P O R T

AHDA thanks its member organizations for their commitment and dedication to serving the headachecommunity. Through their tireless efforts, individuals living with headache disorders and migraine are a part ofa vibrant community of knowledgeable experts and caring people that are a advocating for increased researchfunding, fighting for equitable federal and state policies, increasing awareness and supporting one another.Together, we are working to improve the quality of life for the headache community.

MEMBER ORGANIZATIONSS E R V I N G I N D I V I D U A L S L I V I N G W I T HH E A D A C H E D I S O R D E R S A N D T H E I R F A M I L I E S

cation to serving the headachedisorders and migraine are a part of

advocating for increased researchnd supporting one another

y.

L I E S

1 1 | A H D A 2 0 2 0 A N N U A L R E P O R T

MEET THE BOARD OF DIRECTORSMEET THE BOARD OF DIRECTORS

Chris Gottschalk, MD FAHS President

Bob WoldVice President

Jill Dehlin, RNTreasurer

Kevin LenaburgSecretary

Derek Brandt, JD Larry Charleston, IV, MD, MSc., FAHS

Joanna Kempner, PhD

Stephanie Nahas, MD

Josie Cooper

Annika Ehrlich, NP

Tammy Rome Robert Shapiro, MD, PhD

Shirley KesselCarrie Dougherty, MD

Connie Deline, MD

1 2 | A H D A 2 0 2 0 A N N U A L R E P O R T

William Young, MD, FAHS,FAAN, FCPP

MEET THE STAFF

Sign up for our newsletter to stay up-to-date on our current legislative initiatives and bethe first to know when we announce new action alerts! And visit our social media sites tostay connected. Please take a moment and visit our pages and and Like" or "Follow" usby clicking on the social media icons. We look forward to bringing you lots of greatinformation and keeping in touch. We hope you will comment on our posts, ask questionsand share our content with your friends and family who would benefit from theinformation.You can help us spread the word about AHDA with your network and a broadaudience! We ask that you use these hashtag suggestions when sharing posts: #AHDA#HeadacheDisorders #Migraine #HeadacheDisordersAdvocacy #MigraineAdvocacy.

In September, we hired Carole Bernard as ournew part-time Executive Director. She has 20years of nonprofit management experience.Most recently, she served as the Director ofCommunications for the Sickle Cell DiseaseAssociation of America, Inc. and the ExecutiveDirector of the Scleroderma FoundationGreater Washington, DC Chapter.

We are so appreciative of the great work thatKatie MacDonald has done for AHDA. Katiewill continue working with the organization asthe Director of Federal Policy.

Carole BernardExecutive Director

Katie MacDonaldDirector of Federal Policy

1 3 | A H D A 2 0 2 0 A N N U A L R E P O R T

CONNECT WITH AHDA

Click here todonate to AHDA

today!

Please remember AHDA this holiday season and support our efforts!

FINANCIAL INFORMATION

1 4 | A H D A 2 0 2 0 A N N U A L R E P O R T

FY2019 REVENUE: $181,152.53

FY2019 EXPENSES: $55,280.35

Member Org Donations55.2%

IndividualDonations

37.1%

Member Org Dues7.7%

Program (HOH)63.8%

Administrative36.2%

July 2019 - June 2020

www.allianceforheadacheadvocacy.org

2020 ANNUAL REPORT