Spending time with lobbyists in D.C.
Summary: I had the chance to travel out to Washington D.C. and advocate for people with rare diseases during July of 2023.
My mother and Emily Grimm, from the interest group Voters for Cures, walk down Constitution Avenue near Capitol Hill, Wednesday, July 12, 2023 in Washington, D.C.
“Get her!” said Jai Jackson, a lobbyist, as we stood outside the office of Sen. Tina Smith, D-Minn., last summer.
Moments earlier, we had finished a meeting with one of Smith’s staff members and Smith came out of a secret door accompanied by security.
My mother and I ran through the halls of the Hart Senate Office Building in Washington, D.C., and managed to catch Smith waiting for an elevator.
“Senator Smith,” said my mother, Alisa May, “we’re one of your constituents. We’re with Voters for Cures.”
We were hanging out with lobbyists in Washington as part of a trip organized by Voters for Cures, an interest group representing people with rare diseases. On July 12, 2023, we met with lawmakers on Capitol Hill to share our experiences and discuss policy solutions.
“I just flagged down Tina Smith,” my mother joked.
Our Family’s Story
At birth, I was diagnosed with Adrenoleukodystrophy, a rare genetic disease.
According to ALD Connect, the disease gets passed onto the X chromosome and harms the white matter of the nerves. ALD has no cure and can impact the adrenal gland, spinal cord, or the brain.
For 15 years of my life, my mother enrolled me in an experimental study which meant eating a low-fat diet and drinking Lorenzo’s Oil, a liquid intended to break down fatty acids that damage nerves. In 2018, the FDA removed the drug from suppliers’ shelves in the United States, arguing that it’s ineffective. Lorenzo’s Oil could still be imported from the United Kingdom, but the high cost deterred us from buying the drug
Every year, I visit the University of Minnesota for an MRI and get blood draws monthly in order to monitor my health.
Arlen May, my grandfather, passed on the ALD gene to my mother. My mother passed the disease on to me through the X chromosome.
The most common variant of ALD, Adrenomyeloneuropathy, harms the adrenal gland, responsible for producing adrenaline, and may restrict sufferers to a wheelchair according to the United Leukodystrophy Foundation.
“Why are you even going to D.C.?” said my cousin Olivia May, who has two boys diagnosed with ALD. “They’re not going to listen to you anyways.”
“You have to lay it all out on the field,” said my mother. “At the end of the day, we made an effort.”
Sitting Here on Capitol Hill
Stepping out of our hotel off of Pennsylvania Avenue, large black SUVs arrived as if Voters for Cures organized transportation with the Secret Service.
Eventually, we met Jackson, a lobbyist paired with us for our first meeting. He said to just relax and tell our story.
Throughout the meeting, Smith’s representative repeatedly assured us that “Tina Smith cares about her constituents.”
Trying to build rapport, my mom asked Smith’s staff member if she watched “Lorenzo’s Oil,” a movie centered around ALD. To my mother’s delight, Smith’s representative said yes.
Later, Emily Grimm, a Voters for Cures employee, escorted us across Capitol Hill through a tunnel used by members of Congress. Our trip ended in the office of Rep. Tom Emmer, R-Minn.
The final meeting took place with Liz Stinebaugh, an Emmer representative from Orono, Minnesota, a city located close to my hometown.
“The doctors told me ‘By the time Justin is 18, there will be a cure for ALD,’” said my mother. “He’s 20 now and still no cure.”
Stinebaugh noted Emmer’s opposition to the Inflation Reduction Act, which Voters for Cures describes as doing “more harm than good” with its price-setting policies.
In the end, my mother said to the lobbyists: “Once there’s a cure, I’m inviting all of you over to my house for a party.”
To increase awareness for those living with rare illnesses, Rare Disease Day is celebrated on Feb. 29. To learn more about ALD and Voters for Cures, one can visit this website.