For some, health care ‘reform’ could mean disaster
GOP plan could radically limit benefits for those with pre-existing conditions
Between gender wage gaps, racial divides and political partisanship, the discussion of health care has been among the hotly contest over the presidential election season and through the first 100 days of Donald Trump’s presidency.
Running on a platform of repealing and replacing the Affordable Care Act, President Trump got his first legislative victory when the Republican-led House of Representatives passed the first draft of the American Health Care Act, which a few short weeks prior had been pulled before a vote had taken place.
This time, with a 217-213 partyline majority, the AHCA passed.
Among the concerns by people have been the threats of higher costs and loss of insurance for people with preexisting conditions, along with many of whom rely on Medicaid to offset the costs of health care for their children.
Emily Fine, 61, of Newlin Township in Chester County, said her son, Nate, 22, was diagnosed with autism when he was 2 years old. His treatment and tutors that have helped him pursue a degree at West Chester University, in which Fine said she never could have afforded without both employer-offered health care and Medicaid reimbursement at Unionville High School, where he studied.
“The services he has help him structure his life, do things out in the community ... we are hopeful this will help him progress, but he might need services his whole life,” Fine said. “But, it’s becoming harder and harder to provide him with the support he needs.”
Fine said that he main concern is that someday she and her husband won’t have the employer-offered health care and they won’t be able to support Nate’s treatment, which would totally disrupt him from his course of finding independence.
“If there’s not enough funding, he’ll wind up in an institution,” Fine said.
Like Fine, Chris White, 47, of Havertown, fears for the future of his child. His daughter, Emma, 9, has cerebral palsy, deaf and non-verbal, but has shown vast improvements in the last year through physical, speech and occupational therapies.
“She’s a very social being, she can’t walk or talk, but she can communicate in a very social way,” White said.
Rather than restrict her to a closed-off learning experience, White said the decision was to “mainstream” Emma into the general population at Manoa Elementary School in Havertown so that she can grow from the experiences of interacting with other students.
“Without those therapies, she couldn’t talk using her talker to communicate, her physical therapist shows her how to drive her chair, without her therapist she couldn’t go down the hall with her peers,” White said.
Additionally, Emma has qualified for a service dog, Lovisa, a Golden Retriever and labrador mix, through Canine Companions for Independence, which has helped Emma break the barrier of communication.
White said that is dream to have his daughter communicate through the talker and say, “Hello Mommy. I love you, Mommy.”
White and Fine said the potential cap on Medicaid experiences, drafted in the AHCA bill as a grant program in which the federal government would gives states either a set amount of money per-capita or to receive a fixed-dollar block grant, would be tragic.
“If those sources of funding goes away, or a lifetime max, it would be heartbreaking and devastating,” White said.
“If Medicaid is cut, he won’t be able to have the full services and he may end up in an institution,” Fine said. “That would be a shame given his potential.”
Stacy Rigler, 41, of Bryn Mawr, has a daughter, Maya, 12, who has twice gone through treatment for cancer — first when she was 2 years old, and again at age 10 when she discovered she had atypical Ewing’s sarcoma, a tumor on her pancreas.
Rigler said when the topic of health care law was first being discussed, she looked up the total costs of Maya’s medical costs in 2015. They totalled $1.9 million. “Pennsylvania has an incredible benefit that children can go on Medicaid as secondary insurance,” Rigler said. “We have fought so hard to keep her healthy.”
Through both radiation and chemotherapy, Maya persevered, and in doing so helped raise nearly $400,000 through Alex’s Lemonade Stand, the foundation for childhood cancer.
“She had a very good understanding of what she was going through,” Rigler said. “Cancer
“The services he has help him structure his life, do things out in the community ... we are hopeful this will help him progress, but he might need services his whole life. “But, it’s becoming harder and harder to provide him with the support he needs.” — Emily Fine, 61, of Newlin Township in Chester County, on her son, Nate, 22
“Without those therapies, she couldn’t talk using her talker to communicate, her physical therapist shows her how to drive her chair, without her therapist she couldn’t go down the hall with her peers.” — Chris White, 47, of Havertown, on his daughter Emma White, 9
was always part of her story ... she wants to be a philanthropist and raise money for kids.”
“I fear for her financial future, I fear for ours too, to support her and keep her healthy,” Rigler said.
While the AHCA maintains protections for people with pre-existing conditions, states could apply for waivers that would let them opt out of regulations and consumer protections in the ACA, including the ability to charge more or deny coverage to those with pre-existing conditions and once again impose a lifetime cap on benefit costs.
The difficulty in defining preexisting conditions is that they’ve been decided by private insurers on a discretionary basis, meaning the definition of a pre-existing condition changes based on wherever you look.
There is no question that children like Maya and Emma qualify as children born with medical conditions, as did Nate, who is now entering adulthood and will only be covered on his parents insurance until age 26.
For Haley Nankin, 21, of Newtown Square, she said her chronic headaches, which have no clear name or diagnosis, fears that she won’t be able to afford health care if her condition keeps her from maintaining a full-time job after she graduates from the University of Pennsylvania.
“I have always had this comfort knowing that when I graduated college, even if I was not well enough to work full-time for a place that would be provide high-quality insurance that I would still be able to afford my treatments,” Nankin said.
She said without treatment, which has ranged from Western medical practices to Eastern alternative medicine like acupuncture and flashing light therapy, she wouldn’t be able to function.
“I’ve had a headache all the time since I was 13 years old. I got it one day and it never went away,” Nankin said. “It worsened when I was 15 and got two concussions in cheer leading, and after that I was home schooled.”
She didn’t want to tell her mother about the concussions because she didn’t want to leave school, but her condition grew to a point that she physically couldn’t continue at Radnor High School.
She said better eating habits, a more controlled lifestyle and therapies have help her get through UPenn, but the fear in four years of potentially needing private insurance to cover her expenses is daunting.
Nankin sat down with U.S. Rep. Pat Meehan, R-7 of Chadds Ford, earlier this year before the House vote on the AHCA to discuss her situation. “There are a lot of different stories that are tragic, people with all kinds of illnesses, so I told him about a very concrete and tangible way it would affect me,” Nankin said. “I do think he heard me and was sympathetic, he was kind, but I didn’t really hear any solutions.”
Meehan was one of 20 Republicans to vote “no” on the bill.
Nankin hopes to pursue at master’ in science in social policy with a concentration on health policy.
“I really appreciate that he voted against it,” Nankin said. “I hope myself and other people who met with him had influenced him.”
Currently, Pat Toomey, R-Pa., is among the 13 Senate Republicans currently working on their version of the bill. Toomey’s office supplied the Daily Times with a statement regarding their efforts to repeal and replace the ACA.
“The House bill is merely the first legislative step and I look forward to being a part of this process as the Senate writes its own version to repeal and replace Obamacare so that Pennsylvanians can have access to quality health care at a price they can afford,” Toomey’s statement read.
Monday night at 6 p.m. at Bryn Mawr College, a health care forum will be held in Thomas Great Hall with intivations to Meehan and U.S. Rep.Dwight Evans, D-2 of Philadelphia, to discuss “What’s next for health care?”