Student advocates go to Washington
When Marissa Schlemmer, 6th-semester political science and human rights major, was diagnosed with junior rheumatoid arthritis at age five she could barely stand on her own. Nowadays however, she's walking straight up to Capitol Hill. Schlemmer is a member of the national Arthritis Foundation, the largest non-governmental organization that advocates and protects the health and rights of those afflicted with arthritis.
As a member, Schlemmer spends most of her time organizing charity walks such as the Walk to Cure Arthritis in Connecticut. She is also the youngest ambassador of the Connecticut branch of the organization, a position she has a held for a year, and a position that required her to venture to Washington to advocate on behalf of the group.
Being diagnosed with arthritis at such a young age set the stage for Schlemmer's life path, "When I was a kid, I was too afraid to tell people I had arthritis because they would say, 'That's for old people.'" Schlemmer said. As a child she often had to skip recesses and perform physical therapy. After therapy and medication her arthritis went into remission, but, not content with simply walking, Schlemmer started to run.
"It made me work 10x harder." Schlemmer said in reference to her career as a star track runner for Danbury High School. "In the back of my head I remembered when I couldn't even walk, so I would work 10x harder because I had the ability to run at all."
These challenges also introduced Schlemmer to the very people she would be advocating for later in her life.
"I think it was probably 'Dream Come True' (that motivated her volunteer work). By 2nd grade the only people I was comfortable talking with were kids from Dream Come True who had similar terminal illnesses."
Dream Come True is an organization that grants the wishes of chronically ill children in order to support them and bring some real joy into their difficult lives.
Interactions with organizations like these have had a tremendous impact on the now 20-year-old Schlemmer, who is now working on becoming a disabilities lawyer.
People don't consider people with disabilities to be real citizens, it takes more strength to get up every morning with a disability, they're not weak, they're actually strong for that, said Schlemmer.
These life experiences culminated into a trip to Washington D.C., where Schlemmer and the Arthritis Foundation advocated for two bills to be passed and supported by both the house and senate.
The three-day trip is a yearly opportunity for the foundation to introduce bills, instruct representatives, and advocate for support on behalf of arthritis sufferers in America.
Their goal was three pronged: to enact H.R. 460, H.R. 1827 and secure support on research for a cure.
H.R. 460 advocates for reducing arthritis drugs from a tier 4 of copay, to a tier 3. Tier 4 requires patients pay between 20-50 percent of the drugs actual cost, which can costs thousands of dollars per month, whereas a tier 3 would only cost $50 for the drugs.
H.R. 1827 would incentivize doctors to specialize in pediatric rheumatology, specializing in childhood arthritis, by offering $35,000 in loan forgiveness for three years for those doctors. This is because there are only 250 practicing doctors in this field, with over 11 states not offering any of these services, for the over 300,000 individuals afflicted with arthritis.
Throughout the three days, Schlemmer and the other ambassadors trained to present the bills to representatives, an often nerve-racking experience.
"It was a way to make us comfortable about talking to representatives, what bills were, how to understand the process." Schlemmer said.
She and the 3 other CT ambassadors spoke to a senior policy advisor for Senator Chris Murphy, as well as a fellow of Blumenthal about H.R. 1827. Over the course of three days the organization, which brought over 300 members, relayed their message to almost every house representative and senator.
Schlemmer's advocacy of the bills will effectively impact 300,000 children like her if passed. And her college career will always be intertwined with the experience.
"At this age you're question what you want to do, this makes you independent and helps you find out who you are and your own voice." Schlemmer said. "I think it was good to speak out for something you believe in, and to not just sit back and watch someone else deal with it."
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