Between March 27–29, more than 450 bleeding disorders advocates from across the country gathered in Washington, DC, for the National Hemophilia Foundation’s (NHF) annual Washington Days event. Sporting red ties, attendees were fired up to meet with legislators and Congressional staff members to tell their stories and advocate for maintaining critical patient protections in the Affordable Care Act (ACA) and essential funding for federal bleeding disorders programs. Among them was Jennifer Banks of Connecticut, who was participating for the sixth spring in a row along with husband Raymond, 12-year-old son Devin and 10-year-old daughter Alexis. In the following diary, Banks provides readers an inside look into the adrenaline-fueled whirlwind of bleeding disorders advocacy that was Washington Days 2019.
I’m practicing my talking points in the mirror of our Hyatt Regency hotel room. I’m used to getting up early because my job as a McKinsey & Company management consultant often requires calls with people in Asia. Usually, though, I’m working at home in yoga pants—not a skirt, jacket and the red tie that identifies us as bleeding disorders advocates. Although I no longer get nervous, I want to be comfortable with my message.
I wake the kids by singing “Let’s Get Ready to Rumble!” except I change it to “Let’s Get Ready for Advocacy!” This is such a great opportunity for them to not only learn how government works but also see it in action. At our first Washington Days, we met Sen. Chris Murphy, who later mentioned Devin in a speech on the Senate floor in support of the Affordable Care Act’s elimination of pre-existing condition exclusions and annual and lifetime insurance caps.
Devin has severe hemophilia A, so I give him his every-other-day factor infusion. We save the two empty bottles; later we’ll ask the legislative aides we meet with to guess how much this single dose costs. Correct answer: $5,000.
We grab breakfast during our legislative briefing. Both NHF CEO Val D. Bias and Rep. Joseph Morelle of New York emphasize that we shouldn’t be intimidated by this exercise in participatory democracy. “All those big halls…you bought them, you own them,” Bias tells the hundreds of advocates in the room. The session ends with how-tos from an NHF staffer. Keep business cards handy, she suggests, and offer hemophilia 101 to those who think hemophilia means spurting blood.
Out into the sunshine. I’m not going to lead our delegation to our first appointment,
I announce, since last year I got us lost. We see cherry trees blooming in the distance; Sen. Lindsey Graham strides by—so Washington! There’s a long line for security at the Russell Senate Office Building, but I use the wait to review strategy with the other members of our delegation: Kenny Thach from Connecticut, Mike Dowling of Vermont and Sherenne Simon of NHF.
Even though we’re from Connecticut, our first stop is the office of Sen. Patrick Leahy of Vermont, since Mike is on his own. An aide ushers us into a tiny conference room he calls the “bat cave.” Mike, a 59-year-old with severe hemophilia, shares his historical perspective. Because factor wasn’t available until the 1970s, he wasn’t able to play sports, he wore a baseball helmet everywhere to protect his head and he now has severe arthritis.
That’s a perfect segue into the importance of ensuring access to treatment for younger people like Devin and Kenny. I make our pitch for funding for three key federal programs: the Health Resources and Services Administration, which supports hemophilia treatment centers (HTCs); the Centers for Disease Control and Prevention, which safeguards the blood supply; and the National Institutes of Health, which is researching inhibitors. I also explain the problems with short-term insurance plans. Designed as between-jobs coverage, the plans were originally meant to last three months but later expanded to three years. The more healthy people sign up for these plans instead of the more comprehensive marketplace plans, the higher the premiums for ACA plans like ours will be. We don’t have a choice anyway, since these plans don’t offer ACA protections related to pre-existing conditions and annual and lifetime caps.
On to the office of Sen. Richard Blumenthal of Connecticut, where aides Alison Council and Eve Granatosky are interested in HTCs. Kenny explains that most clinicians don’t know how to treat people with rare disorders and describes a disastrous dentist visit. At an HTC, he says, comprehensive care is available from specially trained clinicians. I explain how our HTC helped when Devin hit his head in gym class, calling ahead to the ER and walking staff through his care. I then made my ask: support for the three federal programs plus HR 1010, a bill that would rescind the regulation that expanded short-term plans.
A quick stop at the basement gift shop. After Washington Days each year, the kids do presentations at school and give their classmates small advocacy-related gifts. We come away empty-handed, except for Alexis, who buys an astronaut pen that can write upside down.
After a hike through subterranean passageways, we hit the Dirksen Senate Office Building cafeteria. Between bites of salad, I check in with my sister Kimberly Hamstead, who’s also on the Hill, advocating to Delaware legislators with her son, Cole. She started coming to Washington Days before us and helped inspire us to get involved.
Back outside, we stroll across the beautiful plaza in front of the Capitol to the visitor center. To be part of the action gives me goose bumps! At the gift shop inside, Alexis scores the perfect gift for her classmates—sparkly pencils with the Capitol on them.
While we’re waiting in the office of Rep. Jim Himes, I scoop up a few boxes of Connecticut-based Newman’s Own raisins. I tuck them in my bag as aide Nick Larsen ushers us in. I appreciate how he interacts directly with Devin, who explains how lucky he is to have access to effective treatment that allows him to participate in sports. After my pitch, Nick urges us to keep in touch and let him know how he can help.
An intern guides us through the labyrinth of hallways to the train that runs under the Capitol. (At the security check along the way, the raisins—along with my hand sanitizer and hair spray—get confiscated.) We take a break and look at photos of past Washington Days, watching the kids grow year by year.
We’re in Sen. Murphy’s office, which has a Connecticut map with pins to indicate where visitors are from. We confirm that our pin for Weston is still there from our last visit, then head to a conference room with two aides. By now, I can work our asks into the conversation quite naturally. Over the years, I’ve come to see these encounters not as formal meetings but as conversations with people who want to understand our issues. We were hoping to get a photo with Sen. Murphy, but he’s tied up in meetings.
Back to the hotel for our post-appointment check-in with NHF staff.
The state advocacy dinner is one of my favorite Washington Days activities. Tonight the focus is NHF’s youth leadership program (NYLI), which I’m hoping Devin will join once he’s old enough. Over dinner, I catch up with my sister, who is excited about running into Sen. Bernie Sanders.
Ray takes the kids to the hotel pool while I crash. It’s been a long but rewarding day. And there’s more on the agenda tomorrow: advocacy training, followed by an FBI tour and March Madness basketball. Overall, the day went exactly as we had hoped: positive conversations and support for our asks, plus a lot of fun.
–As told to Rebecca Clay