By Ellida Parker
When Maryland resident Elena Hung heard in June 2017 that the Trump administration was again attempting to dismantle health care programs that her four-year-old daughter with chronic lung disease relies on, she and a group of parents of children with special needs decided to turn their concern and frustration into action.
“We gathered up our children, their wheelchairs, their strollers, their ventilators, their medical bags, everything, and just showed up at the Capitol,” said Hung. Nearly every day in the months that followed, they continued to show up, meeting with lawmakers and giving them an up-close reminder of the importance of programs like the Affordable Care Act and Medicaid for American children with disabilities and medical needs. The group turned into the Little Lobbyists, an advocacy organization that seeks to protect and expand health care access.
Hung is one of three activists who spoke at the panel, “From Patients and Caregivers to Activists: An Inside Look at the Health Care Fight,” on Thursday, June 29, at the Affordable Medicines Now conference. Organized by Public Citizen and the O’Neill Institute at the Georgetown Law center, the conference aimed to connect health care activists and facilitate the development of a movement for affordable medicines.
Each of the three panelists knows firsthand the importance of quality, accessible health care. Writer and activist Ola Ojewumi underwent a kidney transplant, a heart transplant and cancer treatment within her first three decades of life. Were it not for the Affordable Care Act provision that allowed her to remain on her parents’ health insurance until the age of 26, she would have been unable to receive the cancer treatment that was vital for her survival. Ojewumi is the founder of Project ASCEND, a nonprofit that provides college scholarships to low-income and disabled youth, and she advocates for disabled people through public speaking and social media.
Matt Cortland became publicly involved with health care activism when he posted a video of himself criticizing Vice President Mike Pence’s promise to “repeal/replace Obamacare with a system based on personal responsibility” in June 2017. The video went viral, and Cortland has continued to share his story via social media since then. Cortland has Crohn’s disease, which renders him unable to digest food for months at a time. His treatment has generated medical expenses exceeding $700,000. Without Medicaid, he would not have been able to pay for the treatments that have kept him alive.
Hung’s daughter Xiomara was born with significant health issues that left her unable to breathe without a ventilator or to eat without a feeding tube. She spent the first five months of her life in intensive care and continues to rely on specialized medical care every day for survival. But because of Medicaid, her family can afford care that allows Xiomara to have some semblance of a normal childhood.
A recent survey by the Commonwealth Fund found that nearly 4 million people have lost health insurance over the past two years, likely due to actions by the Trump administration. Specifically, the group attributed the decline in coverage to the administration’s repeal of the individual mandate, which required every individual without employer-funded health insurance to buy insurance or else pay a monetary penalty, as well as the administration’s move to decrease funding for enrollment advertising and for groups that help people sign up for coverage. As the Trump administration and Congress continue to threaten and weaken access to health insurance, activists like those speaking at the panel become all the more important. Their stories add a human dimension to the otherwise abstract, politicized and statistics-filled health care debate, and serve as reminders of the indispensable, lifesaving benefits of Medicaid and the Affordable Care Act.
It is vital that lawmakers heed this and ensure that Ola, Matt, Xiomara and thousands of Americans with complex medical needs can continue to have access to the care that keeps them alive.