Two hours after undergoing a Cesarean section to give birth to her fourth child on July 8, Tasha Nelson found herself on the phone with Rep. Jennifer Wexton’s office (D-Va.) discussing the Affordable Care Act.
The Obama administration’s landmark healthcare reform legislation was set to face scrutiny the following day as the Fifth Circuit Court of Appeals heard oral arguments in a lawsuit brought by 18 state attorneys general challenging the constitutionality of the law’s individual mandate, which penalized people for not purchasing health insurance.
The hearing took place halfway across the country in a courthouse in New Orleans, La., but for Nelson, the stakes were urgent as she contemplated the impact that the Fifth Circuit’s ruling could have on her family.
Along with her newborn son, Nelson has a 7-year-old son and 3-year-old twins, one of whom has cystic fibrosis, a rare genetic condition that can lead to blockages, infections, inflammation, and other kinds of organ damage due to mucus and sweat build-up resulting from a faulty protein.
“It meant so much to me,” Nelson said, recalling her conversation with Wexton’s office. “I didn’t know if he would have his brother’s disease, and here, my representative’s office is reaching out to me proactively, saying we want to fight for you and your kids…That shows they care. I mean, that says something, right?”
Nelson met with Wexton in person on Aug. 9 at Clemyjontri Park in McLean as part of a “play date” organized by Little Lobbyists, an advocacy group dedicated to supporting and sharing the stories of families with children who have complex medical needs.
Maryland residents Elena Hung and Michelle Morrison formed Little Lobbyists in 2017 as a direct response to Congressional efforts to repeal or dismantle the Affordable Care Act.
The mother of a 5-year-old girl born with significant health challenges, Hung was moved to action when the House of Representatives passed the American Health Care Act of 2017.
The AHCA drastically changed the ACA by eliminating individual mandate penalties, phasing out Medicaid expansion, allowing states to get waivers for the requirement that insurers cover certain essential health benefits, and implementing a per-capita limit on federal funding for state Medicaid programs, which would be switched to block grant funding in 2020.
Determined to put a human face to the healthcare issues that Congress was tackling, Hung and Morrison collected photos and stories of children with complex medical needs like the ones that their own children had, and they traveled to Capitol Hill on June 20, 2017 to share those stories with senators as they attempted to craft their own healthcare bill.
The two friends returned to Capitol Hill day after day with more stories from families invested in preserving protections provided by the ACA.
Eventually, that particular Republican effort to dismantle the ACA died in the Senate on July 28, 2017 after Sens. John McCain, Lisa Murkowski, and Susan Collins voted against the chamber’s Health Care Freedom Act.
“I didn't really set out to start an organization, but in two years, I think it goes to show the power of stories,” Hung said. “The power of families telling their own stories has been incredible.”
While the newly formed Little Lobbyists proved victorious in 2017, the battle to protect the ACA did not stop then, as attempts to dismantle the legislation have continued in Congress and the courts.
In addition to the Virginia chapter led by Nelson, Little Lobbyists now has five chapters with the goal of establishing one in every state, and the organization has found a vocal supporter in Wexton.
Little Lobbyists was the first group to meet with the representative of Virginia’s 10th District after she took office in January.
Wexton held a round table-style discussion with five families during the meeting organized by the Little Lobbyists to learn about their needs as Congress continues to look at ways to reform the country’s healthcare system.
“Kids with complex medical needs are so vulnerable,” Wexton said. “We need to make sure that they are protected throughout their lives and that they have all the opportunity that all children do.”
The Affordable Care Act made a crucial difference in the lives of many individuals and families by creating protections for people with pre-existing health conditions, eliminating annual and lifetime caps on coverage, and giving states the option to expand Medicaid, which provides coverage for low-income individuals and people with disabilities.
Nelson’s son Jack was born before the ACA took effect, and his cystic fibrosis diagnosis meant that he was subject to pre-existing condition exclusions. She nearly lost her job after exhausting her family and medical leave from taking care of her son, who was so sick that he could hit his lifetime cap by the time he was 4.
Samantha McGovern says that she and her husband would not have been able to continue working if Virginia did not expand Medicaid this year.
Virginia Gov. Ralph Northam signed a two-year budget funding an expansion of Medicaid in June 2018, opening the program to adults without children and raising the eligibility income cap for families and people with disabilities.
Northam revealed on July 31 that more than 300,000 adults have enrolled in health coverage and are now receiving medical services through the Commonwealth’s expanded Medicaid program.
“It's a win-win for everyone, and I'm so glad we finally did it in Virginia,” said Wexton, who represented the 33rd District in the State Senate when the Virginia General Assembly passed Medicaid expansion in May 2018. “It's been a very big positive for the Commonwealth.”
At the same time, the Little Lobbyists members who met with Wexton in McLean acknowledged that the Affordable Care Act was far from an ideal solution.
Wexton says that stronger protections for people with pre-existing conditions are still needed, along with changes to lower the costs of drugs and insurance premiums.
The U.S. House Committee on Oversight and Reform held a hearing on July 26 to learn about how prescription drug price increases have affected patients and their families.
Leesburg resident Carolyn, who asked to be identified by her first name only, says that her family is currently struggling to navigate the Medicaid waiver process so they can afford the modifications needed to make their home accessible to her wheelchair-using daughter.
Now 4 years old, Carolyn’s daughter has a genetic mutation that causes early infantile epileptic encephalopathy, a neurological disorder characterized by seizures, and spinocerebellar ataxia, a genetic disorder that causes degenerative changes in the part of the brain related to movement control.
“We just got her wheelchair about eight weeks ago, and [my home is] not safe,” Carolyn said. “The hallways aren’t wide enough. The doorways aren’t wide enough. We can’t get her upstairs. We can’t take her outside unless she’s lifted in and out. So, we’re still sort of seeing these hurdles and not sure what to do with them yet.”