Yesterday may have been close to the start of a long weekend for many Americans, but a group of CHI patient advocates gathered in Washington, DC, for an energetic day of action before celebrating the nation’s birthday next weekend.
It was the first time we spent an entire day on Capitol Hill in Washington, D.C as HI advocates. Our purpose was to educate members of congress and their staff on the needs of people living with congenital hyperinsulinism (HI). Nine advocates from Illinois, Massachusetts, New Jersey, New York, Texas, and Virginia gathered in the national’s capital for this day of high impact engagement. We split into two groups and visited a total of 18 congressional offices. In each case we met with either permanent professional staff members or fellows with deep expertise in healthcare policy.
Our group included an adult with HI and her partner, parents of HI children and adults ranging in age from 10 to 37 years old, and two members of the CHI senior staff. It goes without saying that we brought a lot of history, heart, and knowledge into each and every office we visited. To highlight the real-world needs of our community, each of our HI family advocates shared their stories, the search for answers, how their children were diagnosed, finding expert centers and doctors, the enormous efforts needed to care for babies and children with HI, the enduring struggles of adults living with HI, and how being a part of an advocacy community can be healing and provide support. We didn’t expect to be met with so much compassion, curiosity, and a desire to make a difference at each and every visit.
Jennifer Schmitt, CHI’s COO described it this way: “The warm reception we received from the congressional staff members was reaffirming. There are people in positions of power who do care about their constituents. Some of the people we met with even offered concrete ideas about next steps for creating more awareness within congress of the needs of people living with HI.”
In addition to sharing our stories and educating congress on HI, we had specific requests for each of the lawmakers. For each of our key asks, we first laid out the problem or gap. The following are just some of the issues and solutions we shared:
We explained the problem that far too often babies are discharged without a diagnosis and the need for universal screening, so no baby is needlessly harmed. We explained that glucose must be considered a vital sign and requested NIH/CDC/HRSA support for research funding, with findings that could lead to screening policy.
We also emphasized the need for specialized and multidisciplinary care. We explained there are only two HI Centers of Excellence, and that these two centers play an enormously important role in the lives of children with HI. We requested support for the centers so they can continue to be beacons of knowledge to other physicians through presentations and symposia, to have the resources to continue research into the most effective and efficient way to diagnose the condition and to fund research for laboratories so there continue to be a pipeline of potential new treatments.
We also suggested a congressional briefing on HI to raise the profile of the condition and the people who live with it.
Our first “Hill Day” is also a step towards expanding our circle of champions. Pam Williams, one of the advocates who attended and a member of the CHI Board of Directors put it this way: “Since it takes a village to raise awareness, support, support research, and find better treatments and ultimately a cure, we at CHI realize we cannot do it alone. It was so encouraging and heartening to meet with congressional staffers, share our stories, and know there are representatives who are supportive of our mission.”
We are deeply grateful to Rezolute for sponsoring this event and making it possible for us to gather for the first of what we hope to be regular visits to the Nation’s capital, to make deep and lasting progress for people living with HI.
