Page 17 - HFA_Dateline_2018_Q2_Summer

Photos credit: Michael DeGrandpre

Understanding that bleeding disorders occur across the Miriam Goldstein, Associate Director of Policy for HFA
lifespan, the participants ranged from teens to mature adults. explains, “Right before the Patient Fly-In we learned the
Craig, a longtime volunteer at the New England Hemophilia Department of Justice had asked a federal court to overturn
Association’s Family Camp, shared why he felt it important to the ACA’s protections for people with pre-existing conditions.
talk to lawmakers. Our grassroots advocates came to D.C. at the right time to
remind congressional staff and members why affordable,
“I was able to share that I’ve seen a lot of things that have gone quality coverage — including coverage for pre-existing
on over the years with treatment. If we lose some of the benefits conditions — is so vitally important for people with chronic and
the ACA mandates, then we could be back to square one,” rare disorders like bleeding disorders.”
he said.
Diana found the Patient Fly-In rewarding. “I was unsure if they
“It was important for us to participate to try to ensure that listened, but now I am confident they heard us. I have received
my children, along with all who are dealing with a bleeding personal emails from three of the legislative aides we met with
disorder, have access to coverage,” said Diana, who brought during our visit. Now we have to keep the relationship going,
her two teenagers, James and Gracie, to Capitol Hill. The so when it is time for them to move forward with legislation
teens were effective advocates, unafraid to speak up about how they remember us. We are a strong, resilient community that
bleeding disorders had impacted their lives. has a huge stakes in these decisions. It is important for our
elected officials to hear our stories. If you are unable to come to
Thirteen-year-old James adds, “It was important for me to talk Washington D.C., please go to the hometown meetings or call,
with my legislators because the decisions they are making are
going to directly affect me and my friends. They needed to hear write or tweet your lawmakers.” S
my story and hopefully see my point of view.”
Summer 2018 | Dateline Federation 17
While healthcare may not seem as hot a topic in the halls of
Congress as it was in 2017, the policy experts on HFA’s team are
keenly aware the issues our community cares most about are
always at risk.

“Our intent with the Patient Fly-In is to keep an open and
continued dialogue with lawmakers so our community is always
at the forefront of the minds of decision-makers in Washington,
D.C.,” says Kim Isenberg, Vice President of Policy and
Advocacy for HFA. “We asked our community advocates to
share what meaningful, affordable health care means to them
as they made their visits. Their voices were clear, strong and
heard,”