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Jonathan Fisher Exemplifies What’s At Stake As The Trump Administration’s Heartless Sabotage Of Healthcare Continues

Washington, D.C. – U.S. Senator Charles E. Schumer announced that he will bring Jonathan Fisher, a 6-year-old from the Bronx, New York, as his guest to attend the president’s State of the Union address tonight. Jonathan was born with congenital heart defects and has been diagnosed with Lennox Gastaut Syndrome, a seizure disorder, and chronic lung disease. These conditions require around-the-clock care both at home and in school, services that are guaranteed with Jonathan’s Medicaid coverage. As a result of the Affordable Care Act (ACA), Jonathan is able to receive the comprehensive care that he needs—including doctors’ visits, prescriptions, surgeries, homecare services, adaptive equipment, and assistive technology.

“I am proud to announce that Jonathan Fisher will be my guest at the State of the Union address, to highlight the impact of the Trump administration’s sabotage of Americans’ health care and exactly what is at stake if they succeed,” said U.S. Senator Charles Schumer. “The fact that over 400,000 fewer kids have health insurance now compared to 2016 underscores the devastating, real-world consequences of continued attacks on our healthcare system. I will keep fighting with everything I’ve got to ensure that those with pre-existing conditions, including children like Jonathan, are protected, and families can care for their loved ones without worrying about the cost of care, including doctors’ visits, prescriptions, surgeries, and more."

“It is preposterous that the Trump administration claims to care about pre-existing condition protections for millions of Americans while simultaneously trying to eliminate those very same protections and strike down our entire healthcare law through the courts,” Schumer added.

“Healthcare is a fundamental right, and programs like Medicaid are invaluable when it comes to children like my son Jonathan, whose parents often cannot work, or can only work part time because they must care for their children full-time,” said Leslie, Jonathan’s mother. “For us, Medicaid has covered continuous, comprehensive care that prioritizes all of my child's healthcare needs. Without the Affordable Care Act, my son Jonathan would be uninsurable. We would be unable to afford the cost of his care. Placing a lifetime cap on healthcare would leave families bankrupt and leave children to suffer without the care they need to survive. It is unconscionable."

Over the past three years, Congressional Republicans and the Trump administration have continually sabotaged Americans’ health care, including a failed attempt to repeal the majority of the ACA in 2017. Since then, the Trump administration has greatly reduced outreach and patient navigator activities meant to assist individuals in choosing health insurance, allowed “junk” insurance plans back on the market, and proposed weakening federal rules that protect individuals from discrimination in healthcare settings and programs. President Trump’s budgets have also threatened deep cuts to Medicare and Medicaid year after year. Furthermore, the Trump administration and 18 Republican attorneys general are currently arguing in court that the entire ACA should be struck down, which would result in millions of Americans losing health insurance and facing higher healthcare costs.

An estimated 133 million Americans have a pre-existing condition. Before the ACA, health insurers could deny coverage to people with pre-existing conditions, and also exclude coverage of any pre-existing conditions for people who were accepted. Now, regardless of health status, every individual has guaranteed access to health insurance. If the Trump administration’s lawsuit is successful, 12 million Americans would get kicked off Medicaid expansion coverage and coverage for millions more would be at risk. Overall, the number of uninsured people in the U.S. would increase by 19.9 million, or 65%, if the ACA were struck down completely, according to the Urban Institute.

Jonathan Fisher resides in the Bronx, New York, with his mother, Leslie, and older brother, Jaden. Jonathan’s grandmother, who resides in Yonkers, New York, also helps care for Jonathan. Approximately 10 pediatric specialists are a part of Jonathan’s comprehensive care routine, in addition to physical, occupational, and speech therapy sessions. Jonathan has had three surgeries since birth and has spent over a year in an in-patient setting from multiple hospitalizations throughout the course of his early life. Jonathan uses a wheelchair and requires a personal nurse to care for him at home and in school. Jonathan’s favorite musician is Prince, his favorite book is The Very Hungry Caterpillar, and he is also a lover of Mickey Mouse, Spider-Man, and Daniel Tiger.

Jonathan and his mother are also active with Little Lobbyists, an organization that advocates for kids with complex needs and disabilities. Jonathan and other Little Lobbyists seek to protect and expand the rights of children who have complex medical needs and disabilities through advocacy, education, and outreach. Since June 2017, they have educated legislators and shared their personal stories to demonstrate the impact of laws and programs like the ACA and Medicaid. Little Lobbyists also seek to educate their communities about legislation that impacts children with complex medical needs and disabilities, and empower them to engage with state and local government to make their voices heard.