Gainesville woman travels to nation’s capital for Headache Disorder Advocacy

Amy Parmenter Barber, of Gainesville, along with her husband JC and daughter Ella, spoke to representatives of the Missouri Congressional delegation on March 19 about priority issues affecting 40 million Americans who experience headache disorders and migraine disease.

Amy traveled to the nation’s capital in Washington’s DC to represent Missouri along with over 275 other Alliance for Headache Disorders Advocacy (AHDA) advocates from all 50 states as part of the AHDA’s annual Headache on the Hill advocacy day. 

The Barbers met with Senators Josh Hawley and Eric Schmitt, as well as Representatives Jason Smith and Sam Graves. This marked the return of the first fully in-person Headache on the Hill since before the pandemic. 

Barber suffers from chronic migraines with several other neurological/head pain disorders. She says she struggles daily with not only pain but also fatigue, memory loss and language problems. 

Barber’s daughter Ella, who is a freshman at Gainesville High School, also suffers from migraines a few days a month. 

“I did this for Ella, I do not want Ella to go through the issues of finding doctors, getting treatment and dealing with complicated insurance problems. Helping make her future better is why I do this,” Amy said. 

Ella was able to participate in the meetings as well, explaining the struggles her family endures with headache disorder and migraines.

Senators and representatives were encouraged to co-sponsor the Safe Step Act. Step therapy, sometimes called a “fail-first requirement,” is a protocol in which a health insurer will deny coverage for a prescribed prescription or treatment until an alternative insurer-preferred treatment is first attempted. 

Patients with headache disorders are some of the most impacted by step therapy protocols. Although the focus of HOH was headache disorders, all areas of healthcare are affected. 

Barber said she has to go through the list of medications again every time she sees a new doctor. She is currently going through Botox treatment, even though she has tried and failed Botox two other times in the past eight years. This bill would help everyone who sees a doctor for any health issues such as cancer, diabetes, heart disease, she says. 

Offices were also asked by HOH advocates to consider cosponsoring the NIH Clinical Trial Diversity Act. The NIH Clinical Trial Diversity Act seeks to address critical gaps in clinical research by promoting inclusivity and diversity in clinical trials. Recognizing that diseases affect people differently based on a variety of factors including race, ethnicity, age, sex and sexual orientation, the Act underscores the necessity of including a broad spectrum of participants to ensure that scientific advancements benefit all communities equally. 

For example, Amy’s diagnosis and treatment of a cluster headache was delayed almost a decade because the research said only men get this certain type of headaches. Once women were included in drug trials doctors started diagnosing and treating women with this head pain.

Lastly, Barber advocated for robust funding for the Veterans Health Administration’s Headache Disorders Centers of Excellence. 

As of fiscal year 2023, more than 1.99 million veterans received headache care across more than 12.6 million visits for headache within VA Medical Centers. 

This represents 17 percent of the veteran population receiving care within VHA. The increase in headache seen within VHA has been associated with increased utilization of VHA in general, and more specifically among patients at highest risk for headache – women veterans and veterans with TBI/concussion. Additionally, because of the PACT Act, more veterans than ever are using VHA for their healthcare. Over time, the number of veterans utilizing headache care has increased by more than 100 percent. 

Barber wants everyone to know their voice counts. “Telling your story is the most powerful tool we have. Together we really can makes a difference. Rural Health is very important to our congressmen, especially our Representative Jason Smith.” 

Those who wish to also tell their story can contact Amy at aparmenterbarber@gmail.com.