$30 too much a month keeps a cancer patient in Georgia from cheaper care
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Amy Wilson, a conductor and artistic director of the Atlanta Philharmonic, suffered from brain cancer but isn't able to get Medicaid which makes it difficult to pay her hospital bills.Claire Harbage / NPR -
Scenes from The Family Health Center at West End in Atlanta.Claire Harbage / NPR -
Dr Catherine E Burley sees patient Dorothy Wright at The Family Health Center at West End in Atlanta.Claire Harbage / NPR
DECATUR, Georgia – Amy Wilson stood before the all-volunteer Atlanta Philharmonic Orchestra at a recent rehearsal in the basement of a church.
Wilson, the group’s conductor, listened carefully for off-key notes as the sound of violins, cellos and flutes filled the air.
“I tell them, 'If you’re going to make a mistake, make it loud,'” Wilson said. “Don’t play timidly. Make it loud, so that we can fix it because, if I can’t hear it, I can’t fix it.”
Being a musical conductor is what she’s wanted to do since middle school. Her love of music was born from singing in a church choir and learning how to play piano.
Four years ago, her life and dream were put in jeopardy when doctors found a cancerous tumor in her brain. She had two choices: forgo chemo and surgery and possibly lose her life or get treatment and figure out how to pay for it later.
She ended up having surgery a few weeks before the coronavirus pandemic shut down Georgia and most of the world. Wilson was already on Medicare because of an existing disability, and it covered some of her surgery expenses, but Wilson still struggles to pay for her ongoing care.
“My life was good before brain cancer and I miss it,” Wilson said.
While recovery would’ve been its own challenge, Wilson says things could’ve been smoother if she hadn’t been denied Medicaid, the state-federal program that provides health coverage to low-income people.
The last time she applied, Wilson was told her income was $30 over Georgia’s Medicaid limit.
An estimated 1.5 million low-income U.S. adults with incomes over Medicaid’s limit. About 12% of these adults live in Georgia, according to health research nonprofit KFF.
Georgia is one of 10, mostly southern and GOP-led states, that have not expanded Medicaid to cover more people under President Barack Obama’s signature law, the Affordable Care Act, also known as Obamacare. The other states are Texas, Alabama, Mississippi, South Carolina, Florida, Tennessee, Kansas, Wyoming and Wisconsin.
Democrat Stacey Abrams made Medicaid’s expansion a key issue in her two failed attempts to win the Georgia governor’s seat, losing out both times to Republican Gov. Brian Kemp, who has insisted he will not expand the program. And recently, President Joe Biden has been attacking Donald Trump over his attempts to repeal Obamacare, hoping the issue will galvanize voters as he scraps for votes in battleground states.
So why has Georgia rebuffed Medicaid expansion?
At his budget signing in early May, surrounded by local and national reporters, Gov. Kemp said that “expanding Medicaid will take people off of their private sector insurance and put them on the government-run health care. That is going to cost more money in the short term, more money in the long term. So to me that does not make good budgeting sense to do that.”
Instead, Kemp introduced Georgia Pathways to Coverage last July, which he referred to as a “conservative Medicaid expansion,” a plan done under a waiver in the ACA. Former President Donald Trump signed off on it while in office in 2020.
Medicaid expansion in Georgia would make people earning up to 138% of the federal poverty level – which is $20,782.80 for an individual and $43,056.00 for a family of four – eligible for coverage.
Pathways makes people earning up to 100% of the federal poverty level – or $15,060.00 for an individual and $31,200.00 for a family of four – eligible for Medicaid. But applicants must also show they’ve completed 80 hours per month of qualifying activities, including full- or part-time employment, higher education, or vocational training — a requirement opposed by some Democrats and health advocates.
The program was expected to register about 100,000 Georgia residents in its first year, according to member station Georgia Public Broadcasting. Near the end of 2023, only around 2,300 people had signed up, according to a report from the Georgia Department of Community Health.
At the budget signing, Kemp told reporters that the program was “just getting started,” placing some blame on a December 2021 effort by the Biden administration to delay Pathways’ implementation over the work requirement. A judge ruled the following year that it could be implemented.
Pathways wasn’t available when Wilson of the Atlanta Philharmonic Orchestra was undergoing her brain cancer treatments. And even if the Pathways program had been available, she worries she wouldn’t have been able to meet the work requirement due to disability that predates her cancer diagnosis.
“I’m not physically able to do any of those things for 20 hours a week,” Wilson said. “I struggle to do what I do, which is like five hours a week.”
How a Georgia doctor says a full Medicaid expansion could help patients
Many Georgia residents with medical needs who don’t qualify for Medicaid may not be getting diagnosed or treated in a timely manner, according to Dr. Catherine Burley, chief of adult medicine at the Family Health Centers of Georgia, a nonprofit clinic.
Burley, who has worked in medicine for 43 years, said expanding Medicaid could mean more people getting basic medical care, including preventive services that could keep their conditions from worsening in the long run. She acknowledges, though, there are some expenses Medicaid sometimes doesn't cover, like physical therapy and some medicine, which can be a struggle for her diabetic patients.
“If you can get treatment early, that definitely affects your long-term outcome,” Burley said. She believes morbidity and mortality rates could improve, and that people with diabetes and high blood pressure might reduce their risks of things like strokes, heart attacks or amputations.
Right now, some of the most impoverished people in the state are missing out on care, Burley says, adding that there are plenty of adults who are afraid to go into the workforce because they worry they will lose the Medicaid coverage they have now, reserved only for the lowest income adults.
“You know, it’s very easy to get Medicaid for pregnancy and for children, but for adults, that’s a major hurdle — and especially for adult men,” Burley said. “And I think it’s because people feel they ought to be out working, but sometimes they’re not able to do that.”
Some health advocates say the stakes of Medicaid’s expansion are enormous
“I've talked with Georgians who have died because they couldn't get Medicaid until after they had Stage 4cancer and it was too late to keep them alive,” said Liz Ernst of advocacy group Protect Our Care Georgia.
“I've talked to Georgians who, you know, lost their jobs because they couldn't stay healthy and become homeless,” she continued. “It's a really sad state of affairs here in Georgia.”
The group has pushed for Medicaid’s expansion for years, with this year being another missed opportunity. Ernst was disappointed at the end of the legislative session in March.
A bill that would have expanded Medicaid through purchasing private health insurance plans for uninsured adults failed in committee at the last minute, though it had some Republican support.
“The legislature clearly showed us that there was a will and a desire to expand Medicaid,” Ernst said.
As things stand now, Georgians who earn too much money to qualify for Medicaid are left in the same gap they’ve likely been in for years. Changing this current all-or-nothing approach is exactly what Wilson says she wants.
But beyond all of that, as someone suffering from such complex health problems – she was diagnosed with lymphoma after her brain cancer – she just wishes she didn’t have to think about any of this.
“I feel like having access to good, affordable health care should be a human right, that everyone should have, that regardless of their income, regardless of their ability to work or their inability to work,” Wilson said. “I feel that no one should be suffering because they can't afford to pay or they make $30 over the income limit or because we didn't expand Medicaid.”
The story was adapted for web by Majd Al-Waheidi.
Transcript
STEVE INSKEEP, HOST:
It's an election year, if you haven't noticed, and one issue we're seeing come up again and again in polls is health care. Everything from the cost of it to how difficult it can be to find it. This week as part of our "We, The Voters" series. We're going to give the nation's health care system a checkup and tell you how politics affects it.
A MARTÍNEZ: Today, we're going to be looking at Medicaid. Now, you don't need me to tell you that health insurance is expensive. For people with lower incomes, Medicaid, the joint federal and state insurance program, can be a lifeline. Under the Affordable Care Act, the federal government provides funding to states to expand the program to more people. Most states have chosen to take that money, but 10 have not. Georgia is one of them. When we traveled there recently, we found that decision's leaving some people behind.
(SOUNDBITE OF MUSIC)
MARTÍNEZ: Amy Wilson is the music director of the Atlanta Philharmonic Orchestra. The musicians are all volunteers, and they're rehearsing a piece by Tchaikovsky in the basement of a church in Decatur.
(SOUNDBITE OF MUSIC)
MARTÍNEZ: Wilson conducts the orchestra. She stops the group and makes adjustments.
AMY WILSON: Could you give a little shape in this melody? (Imitating melody), please.
MARTÍNEZ: Speaking to us before the rehearsal, Wilson told us that this is what she's always wanted to do.
WILSON: I started singing in the church choir when I was 3, and my mother tells me that I told her when I was 3 years old, I wanted to be a conductor.
MARTÍNEZ: But now, it's a challenge for her just to hold her baton for the whole rehearsal.
WILSON: My life was good before brain cancer, and I miss it.
MARTÍNEZ: In January 2020, Wilson was diagnosed with a brain tumor. She had surgery to have it removed. Wilson was already receiving some Medicare benefits due to an existing disability. That federal program also insures people over the age of 65. It wasn't enough to cover the care Wilson needed at an area hospital.
WILSON: So I remember the summer I was doing chemo and radiation, and I would call the financial aid people. I said to them, I don't know what I can do because I can't afford treatment because I'm not on Medicaid. I'm on Medicare. And they said to me, get the treatment and figure out how to pay for it later. If you don't get the treatment, you're not going to be here, so do it. And so I did. And I've struggled ever since.
MARTÍNEZ: So you said you had Medicare, not Medicaid. Why couldn't you get Medicaid?
WILSON: I am above the income threshold. Even without my job here, like, during the pandemic, I'm still like $30 above the income threshold.
MARTÍNEZ: And that $30 means you can't get Medicaid?
WILSON: Yeah. It's a yes or no situation. You don't get partial or anything.
MARTÍNEZ: 30 dollars - wow. That doesn't seem like...
WILSON: Yeah.
MARTÍNEZ: ...A lot, right?
WILSON: Yeah. I wish it was at least prorated or something.
MARTÍNEZ: To make matters worse, after finishing treatments for the tumor, Wilson was diagnosed with lymphoma, another type of cancer. Her situation is complex because she's close to being eligible for both Medicare and Medicaid. It's similar to a problem many other Georgians face. If the state was to expand Medicaid under the ACA, it would give health insurance to people with incomes up to 138% of the federal poverty level. That's about $21,000 a year. KFF is a nonprofit that researches health care policy. It estimates that expansion would mean over 350,000 more Georgians with coverage. It's a similar story for the nine other states that haven't expanded the program, mostly in the South - Tennessee, Mississippi, Alabama, South Carolina, Florida and Texas, along with Wyoming, Wisconsin, and Kansas.
(SOUNDBITE OF ARCHIVED RECORDING)
BRIAN KEMP: Good morning, everyone.
MARTÍNEZ: We wanted to ask Georgia's Governor Brian Kemp why he opposes expanding Medicaid. His office declined an interview, so we went to his budget signing at the state capitol in Atlanta.
(SOUNDBITE OF ARCHIVED RECORDING)
KEMP: We've already made incredible strides in both increasing access, but also improving affordability for health insurance.
MARTÍNEZ: That's Kemp touting funding to train new doctors to attract dentists to rural areas and more, but he did not mention Medicaid or his alternative, a plan he calls Georgia Pathways to Coverage. In a gaggle with reporters after the signing, Kemp was asked if he'd ever support expanding Medicaid.
(SOUNDBITE OF ARCHIVED RECORDING)
KEMP: Well, the plans that we have for our conservative Medicaid expansion is just getting started 'cause the Biden administration has tried to block those efforts.
MARTÍNEZ: Governor Kemp thinks what Georgia is doing now is better for people's health and the state's finances.
(SOUNDBITE OF ARCHIVED RECORDING)
KEMP: The advocates for Medicaid expansion always said it'll add 600,000 people to the rolls. Well, right now, in Georgia, we've added 713,000 people to the rolls. The majority of those are on private sector health insurance. So expanding Medicaid will take people off of their private sector insurance and put them onto government run health care. That is going to cost more money in the short term, more money in the long term. So, to me, that does not make good budgeting sense to do that.
MARTÍNEZ: When he says conservative Medicaid expansion, Kemp is talking about the Pathways program. It provides health insurance to people with incomes of up to 100% of the federal poverty level, fewer than the full Medicaid expansion would cover. It also requires people to work, study, or volunteer for 80 hours a month to get it. We wanted to understand more about all this. So right after the governor left, we talked with the reporter who asked him about it.
ARIEL HART: I'm Ariel Hart with the Atlanta Journal Constitution.
MARTÍNEZ: We began talking about Kemp's Pathways program.
HART: It's been up and rolling for almost a year now, and it's got, I think, what everyone would acknowledge is pretty poor enrollment, about 4,000 out of an expected 100,000.
MARTÍNEZ: Does his argument that the Biden administration has been trying to block his plan, Pathways - does that hold any water to you?
HART: Well, there's no doubt that the Biden administration blocked the plan for a couple of years, and you can argue about whether they did it because it had work requirements and the Biden administration is philosophically opposed to work requirements, or whether indeed it was because the pandemic was ongoing, and there was just too much chaos in the Medicaid market, and they didn't want Georgia to have that on its plate.
MARTÍNEZ: Hart also picked up on Kemp's boast about enrolling over 700,000 Georgians in health plans.
HART: He's fully taking credit for the Affordable Care Act sign-ups for the population between 100% of the federal poverty level and 138% of the poverty level. Every state that does not expand Medicaid - that population, the federal government steps in and says, you don't have affordable coverage, we will allow you to sign up for a private health care plan on the Affordable Care Act Exchange. And with Biden administration subsidies, those plans have been basically free.
MARTÍNEZ: In other words, the vast majority of those newly insured people got covered under the ACA, a federal program. President Biden has boosted enrollment efforts, funding President Trump cut drastically when he was in office. And that part about people losing private insurance if Medicaid was expanded, Hart says the governor's office now concedes that wouldn't necessarily be the case. The state of Arkansas, for example, built its expansion plan this way.
HART: Arkansas takes the Medicaid money, puts it into the marketplace with the cooperation of the federal government and puts those people on private ACA plans.
MARTÍNEZ: While the Biden administration tried to stop Pathways, Hart says the Trump administration worked closely with the governor's office to develop it. And a Trump victory in November could mean renewed support. Liz Ernst is with Protect Our Care Georgia. The group advocates for more affordable healthcare.
LIZ ERNST: Legislature clearly showed us that there was a desire to expand Medicaid after Governor Kemp's essentially official first year of Georgia Pathways was such a big bust.
MARTÍNEZ: There was a bill to approve expansion under consideration, but it was blocked by Republicans who say they want to give Kemp's Pathways plan a chance to work. Ernst says, the stakes are enormous.
ERNST: I've talked with Georgians who have died because they couldn't get Medicaid until after they had stage four cancer, and it was too late to keep them alive. I've talked to Georgians who lost their jobs because they couldn't stay healthy and become homeless.
MARTÍNEZ: And the need has only grown over the past year. During the pandemic, emergency regulations stopped states from removing people from Medicaid coverage. When that rule expired, states began reevaluating individuals' cases. If they didn't respond to letters or made mistakes with paperwork, they lost coverage. Hundreds of thousands of Georgians have been affected.
(SOUNDBITE OF KNOCKING)
MARTÍNEZ: One place where the importance of Medicaid is clear is at the Family Health Centers of Georgia Clinic in Atlanta's West End neighborhood. We met someone who's been treating Medicaid patients for a long time.
CATHERINE BURLEY: I am Dr. Catherine Burley. I have been practicing internal medicine for 43 years.
MARTÍNEZ: In that time, she's seen what it means to have insurance and what it means to go without.
BURLEY: If you're a person who has diabetes, high blood pressure - that's the combination we see - and you don't have any insurance, then you're more likely to have that stroke, that heart attack.
MARTÍNEZ: But Dr. Burley sees a problem with the income limit for eligibility.
BURLEY: I would like to see a health care system that is not punitive. If you have Medicaid and you get a job, then you're making more money. That automatically kicks you off Medicaid. But yet you may not be making enough money to afford commercial insurance. So it's like some people won't go to work because they don't want to lose their Medicaid. My thing is, let them stay on Medicaid and gradually wean them off instead of just cut them off.
MARTÍNEZ: Changing that all-or-nothing approach is exactly the type of reform that Atlanta Philharmonic conductor Amy Wilson told us she wants to see. But beyond all that, as someone still suffering from cancer, she just wishes she didn't have to think about any of this.
WILSON: I feel like access to good affordable health care should be a human right. No one should be suffering because they can't afford to pay or they make $30 over the income limit or because we didn't expand Medicaid.
(SOUNDBITE OF MUSIC)
MARTÍNEZ: Biden and Trump have vastly different visions for health care in the United States. Considering that Georgia is one of the swing states that will determine the election, how Wilson and other voters like her feel could play a big part in which vision America will choose in November.
(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.
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