The Affordable Care Act, the Obama-era health care law, is about as popular in February 2017 as it was two months after its passage, which is to say only mildly: According to Kaiser Family Foundation polling, public support peaked at 50 percent in July 2010, and stands at 48 percent at present. The law's troubled reputation in the intervening seven years — its unfavorable rating reached a peak of 53 percent in July 2014 — led to repeated efforts by Republican lawmakers to repeal the legislation and campaign promises by now-President Donald Trump to do the same.
Now that changes, if not outright repeal of the law are on the table — a leaked draft of a House GOP bill would eliminate many of the taxes and benefits associated with the law — some people have questions.
Kelley Gordon, of Hampstead, for instance. Her nearly 2-year-old grandson Rhett Kirsch was born with cystic fibrosis, a genetic disorder that causes mucus to build up in his lungs. She wonders how any changes to the law could affect the insurance her family needs in order to afford his expensive medical treatments.
"He has daily therapies that include taking six capsules every single time he eats," she said. "That prescription costs $6,200 a month, and that's going to get higher as he grows and gets older."
Rhett also requires twice daily chest compression therapy sessions from a $12,000 machine that will also need to be upgraded as he grows. Because cystic fibrosis patients are especially sensitive to lung infections, frequent, lengthy and expensive hospital stays are to be expected.
"You can see quickly how, if for example, lifetime maximum benefits were reinstated, someone like Rhett would exhaust that by the time he was 4 on average," Gordon said. "For the rest of his life, what would he do?
"They are often too sick to have a full-time job where they have benefits, so that whole thing about being on your parents' plan becomes really critical."
If any of three consumer protections that did not exist before the Affordable Care Act are repealed — the ban on insurers capping the lifetime amount they will pay out for benefits, the rule allowing children to stay on their parents' insurance until age 26 and the ban on denying people coverage for pre-existing conditions — Rhett's parents, Gordon's daughter Lori and husband Rob, could no longer afford his care, according to Gordon.
"There is no way they could sustain that level of cost. They would be selling their house, they would be going bankrupt," she said. "We would do the same, because nobody is going to let this beautiful boy not get what he needs."
Gordon is taking her concerns to a community town hall meeting on Thursday, March 2. Sponsored by the local advocacy group, Carroll Community Action Network, or Carroll CAN, the meeting will be held from 6 p.m. to 8 p.m. at the St. Paul United Church of Christ Fellowship Hall, 17 Bond St., Westminster.
A grass-roots organization with about 1,100 members, Carroll CAN formed in November and has what many may consider a progressive or Democratic bent. But Kate Fisher, chairwoman of the organization's Call to Action Committee, said the group has worked hard to make this town hall meeting a nonpartisan affair.
"We want the town hall to be a place where people can have respectful conversations," Fisher said. "We're trying to make it a conversation about public health and access to health care and not any one political party or politicians. All players need to be at the table and be part of the conversation."
To that end, Carroll CAN has invited all of Carroll County's elected representatives, from members of the Carroll delegation to the Maryland General Assembly to Congress to attend the meeting, although most representatives are in session and have voting or committee meetings that will prevent them from attending. Rep. Jamie Raskin, D-District 8, and Sens. Ben Cardin and Chris Van Hollen will be sending representatives to the town hall.
Carroll CAN has also invited a diverse panel for a discussion of both the Affordable Care Act and its possible replacement or enhancement, according to Fisher. The panel includes both Ed Singer and Tammy Black, the Carroll County health officer and executive director of Access Carroll, Francine Hahn, a former Maryland Health Connection navigator, and Dr. Margaret Flowers, former Green Party candidate for the Senate seat now occupied by Van Hollen and a member of the Maryland Health Care is a Human Right campaign.
Flowers is a critic of the Affordable Care Act, arguing that it costs too much to provide too little care. She will present the case for a transition to a single payer national insurance program such as exists in Canada, where everyone's taxes fund a national, nonprofit insurance that pays for medical care.
"The Canadian single payer model is based on our traditional Medicare that we created in 1965," Flowers said. "It creates a system that provides comprehensive coverage and when people need care, they go where they want to go and not where an insurance company tells them they have to go."
Although it's been a decade since she practiced, Flowers was a pediatrician for 17 years, including a stint as chief of pediatrics at what was then Carroll County General Hospital in the 1990s. It was that experience, she said, that convinced her the U.S. health care system is broken; in her opinion, for-profit insurance companies charged too much and got in the way of her providing the best care for her patients.
"We have tweaked this market system about as much as we can tweak it and there is no way to make it universal, affordable, or to make sure people can get access to the care that they need," she said. "Under the current private insurance system the only way you are going to make coverage affordable and universal is to throw incredible amounts of money at it."
Singer comes at the Affordable Care Act from a different angle. No single payer advocate, though not necessarily a critic, he does believe the Affordable Care Act has a lot of flaws that must be addressed.
"I am not going to argue that a one payer model is necessarily the wrong thing, but I do tend to think there are some negatives to that and those can certainly be discussed," Singer said. "My biggest concern is I don't think that it's fair that we stand up there and say that the [Affordable Care Act] is the best thing since sliced bread even though we have gotten all these people theoretically and technically insured."
While it's certainly true that the number of people who have insurance of some sort has gone up under the Affordable Care Act, Singer said that many people who have purchased the high-deductible bronze level plans through the Maryland Health Connection are effectively uninsured if they become seriously ill.
"If you got a bronze plan you are paying a certain amount for your health insurance but you also have to reach a $10,000 level before the insurance actually starts paying anything for you," he said. "So while you have an insurance card and you have insurance, until you pay that much money out of pocket you are not getting coverage."
This is increasingly problematic for people with chronic and serious conditions, such as cancer, or even behavioral health issues such as substance abuse, according to Singer. Meanwhile, he said, the sustainability of the overall system is jeopardized when young, healthy, people who "feel like they are invincible" don't purchase insurance to offset older, less healthy people.
Those are major problems that simply must be addressed, Singer said, "But simply repealing the [Affordable Care Act] without replacing it with something else would be really catastrophic to both public health and I think the health care system in general."
There is, in other words, a general consensus that people need access to health care, according to Singer.
"If we're all in agreement that people need access to health care, then it's just a matter of what's the best way to do it," he said.
Discussing just what that fix might be is exactly the sort of conversation Fisher would like to see take place at Thursday's meeting.
"We want people to come, we want them to share their stories and we want them to share their suggestions," she said. "We want the discussion to be what's working, what's not and how we can fix what's not working."
The political volatility of the Affordable Care Act made the usual incremental legislative improvements anathema to both parties over the past seven years, Fisher said, but there's still a chance for people to stake out the middle ground their representatives cannot.
A real discussion starting from the assumption that there is a better solution to providing health care out there is in everybody's interest, according to Singer, and a discussion much delayed in the political sphere due to the desertion of the middle as the partisan ranks have swelled on both the left and right.
"It used to be there were people in politics that could somewhat bring people together and form a compromise," he said. "It makes it difficult to find the right solution when people are sticking so staunchly to their views. I don't know what the answer to that is."
If You Go
What: The impact of the ACA on Carroll County residents town hall meeting
When: 6-8 p.m. Thursday, March 2
Where: Saint Paul's United Church of Christ Fellowship Hall, 17 Bond St., Westminster
Latest Carroll County News
Note: Senators Chris Van Hollen and Ben Cardin along with Rep. Jamie Raskin will also attend a Town Hall Forum at 6:30 p.m on Sunday, Feb. 26, at the Silver Spring Civic Building at Veterans Plaza – Great Hall and Veterans Plaza, 1 Veterans Plaza, Silver Spring.