How gaps in health insurance coverage haunt vulnerable patients - The Augusta Chronicle
As the oldest child, then the mother of two and grandmother of seven, Susan Marsh has always been the rock for others.
Now, the 55-year-old from Davisboro, Ga., has no choice but to ask for help — in the form of financial assistance in the fight for her life.
But Help isn't coming.
"I've always been the caregiver," Susan says. She's helped her son and her "baby sister" both battle serious cancers. "I've always been there for them."
Susan is in her own battle now: her third fight against ovarian cancer in less than four years. But she's caught in a loophole that leaves her without the financial aid she and her husband need for Susan's costly treatment.
Richard Burkhart/Savannah Morning News
Unable to afford their old health insurance, the Marshes' modest income is too much to qualify for an indigent program but not enough to afford premiums through the Affordable Care Act. And because Marsh lives in Georgia, one of 12 states that have refused to expand a less-than-generous Medicaid program, she and an estimated 678,000 residents fall into a coverage gap that leaves them with no relief from hefty medical bills.
Susan has qualified for Social Security Disability Insurance, but she won't get Medicare coverage until she has been on it for two years, a rule that baffles her husband, Gene, a retired welder.
"But why?" he asks, his voice rising. As he speaks, his wife sits next to him at Georgia Cancer Center in Augusta, chemotherapy dripping through an IV into a port catheter in her chest.
"Nobody," he says, "can answer that."
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Stacy McGaney has heard that complaint before.
She's a social worker at the Augusta cancer center who is trying to help the Marsh family and others who fall into what she calls a "gray area" where no program works.
"I hear it all the time," McGaney says. "Patients are frustrated with the bureaucracy of the whole insurance industry, the Medicaid industry. It’s just unfortunate. In layman’s terms, the rules just aren’t fair for those who are in that gray area."
The high cost of treatment and long drives for care push Georgia family to the brink
Susan and Gene Marsh have worked hard all of their lives, but when Susan got ovarian cancer, the family was pushed past the brink of bankruptcy.
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Advocates have pleaded with the Republican-controlled state government to expand Medicaid, particularly in light of new incentives this year in the American Rescue Plan under which the federal government would pay 90% of the cost of the expansion. Even the state's $336 million portion of expanded Medicaid would be more than paid for by the extra $1.4 billion to $1.9 billion that the federal government would provide for the program, with savings that could then be applied to fully funding schools or expanding rural broadband access, according to research by Laura Harker, a senior health care policy analyst with the Georgia Budget Policy Institute.
But Medicaid expansion does more than provide health coverage. It narrows disparities in healthcare outcomes for Black and Hispanic people, a Kaiser Family Foundation analysis of some studies found. Health coverage accounts for about 20% of most disparities among minorities, but inequality in other social factors such as income, employment or even residence play a big role as well, Harker said.
"A lot of the disparities, discrimination in the health care system, all of these other factors play a much larger role," in worse health outcomes for those communities, she says.
The COVID-19 pandemic brought starkly to light just how big those disparities are across the state, with the earliest and worst outbreaks in predominantly poor and rural counties with higher Black populations — notably around Albany, Ga., and among Hispanic workers in north Georgia, such as Hall County, Harker says.
"You are seeing Black and brown people across the state that are overrepresented in the share of deaths and the amount of cases of COVID (during) the pandemic, and that was really a reflection of the longstanding history of discrimination and racism across the health care system and in many other systems that have left many communities of color at a disadvantage," she says. "There’s a lot of ongoing, longstanding discrimination and history around race in this country, but I think that policies like Medicaid expansion take that step towards putting resources and targeting those who are most in need.
"Even though it does not explicitly mention race, there is just the fact that people of color are overrepresented amongst people without coverage."
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By the time doctors discovered Susan Marsh's cancer, it had already spread outside her ovaries and was touching nearby organs.
It was October 2017, and she worked for a small dump truck company, relying on her husband's job as a welder and fabricator for health insurance.
"The only thing I really noticed different, during that summer, was I didn’t have the energy," Susan Marsh said. "I was tired all of the time. But no other symptoms, nothing else going on."
Richard Burkhart/Savannah Morning News
Ovarian cancer is called a "silent disease" because it usually only causes vague symptoms and there's no good screening system, says Dr. Sharad Ghamande, her gynecologic oncologist at the cancer center.
"By the time you make the diagnosis, it is advanced," he said. "In fact, 75 or 80% of patients we see with ovarian cancer have advanced disease."
Susan's cancer was already at Stage III-C. After removing the ovary and seeing a spot on the bladder and on the colon, Ghamande "said we need to go ahead and hit it fast because we don’t want it to grow any faster," Susan recalls.
Standard chemotherapy kept the cancer in check for almost a year, but in September 2018 some spots had returned, and she went back on chemotherapy. The following April, Ghamande got Susan into a clinical trial with two molecular inhibitors that seek to keep the cancer cell machinery in check.
Richard Burkhart/Savannah Morning News
"She did well for almost a year on that, which is pretty amazing given the fact that all of those were non-standard (of care)," Ghamande says.
Even during chemotherapy, Susan Marsh tried to work through it, her husband said.
"She would come up here and do treatment and go right back to work that same day," Gene says. "And it was taking a toll on her."
Her employers finally persuaded her to take time off. Her husband's insurance came through Blue Cross Blue Shield of Georgia, and when he had to retire in 2019, the couple tried to keep it using COBRA. But those payments were more than $900 a month — about half their monthly income.
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Blue Cross covered most of the last medical bill the Marsh family received — about $58,000 — but they were still on the hook for $2,600, Susan says. Between her unemployment check and Gene's retirement, she's not sure how they'll pay it off.
That eats at her.
"I know the doctors and the nurses have to get paid," she says. "And it bothers me that there’s not something out there for patients like me. Even if (a program could) pay half, we could afford to pay something. But when you get on a fixed income, there’s not much more you can give out, when you have a house payment and utilities and other stuff you have to pay."
The hospital has an indigent care policy to cover those patients who qualify but they have to meet federal poverty guidelines. Those that don't are considered self-pay, or responsible for the whole bill, McGaney says.
Ghamande praises Georgia Medicaid for providing coverage for breast cancer patients and cervical cancer patients, which helps a great deal of people.
But because of the gap, it doesn't help Susan Marsh.
"The people like us, who have paid out all these years and we have to go through the eye of the needle to get a little assistance," Susan says. "It's not fair."
Before Susan could start her most recent chemotherapy session, her drugs were delayed as a pharmacist came into the infusion area and asked her to sign a document. Her regular pharmacist intervened and urged the Marsh family to undergo another financial review before signing anything.
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In late June, Georgia Gov. Brian Kemp ended participation in the federal COVID-19 unemployment program as part of his Economic Recovery Plan to "get more Georgians back to work in good-paying jobs," he said.
Susan Marsh received a letter from the state of Georgia telling her the unemployment check was cut off.
Losing that weekly check was just enough to drop the Marsh family income to the point where they now qualified for the health system's indigent care program, and her treatment could continue.
Richard Burkhart/Savannah Morning News
But the Marshes were still forced to file for bankruptcy.
"I didn't have a choice," Gene Marsh says. He didn't want the worry about the bills to stress his wife out even more. "She’s going through enough."
If Georgia expanded Medicaid, Susan would qualify, and it would cover other medical bills outside the cancer center. Gene Marsh said he called his congressman, U.S. Rep. Jody Hice R-Ga., and told him he should support it. Hice, who has referred to Obamacare as an "unmitigated disaster" and worked to repeal it over and over, has yet to get back to him.
For now, Susan must balance hour-long trips each week to Augusta for treatment and concern for her sister's ongoing cancer battle with worry over medical bills.
But she considers herself fortunate. At Oakey Grove Church in Wrightsville, she is one of several members who have battled cancer, and "we kind of root each other on," she said.
"I am blessed," Susan Marsh says with a smile at the treatment center, as chemotherapy drugs drip into her vein. "Every day is not a good day, but the majority of days are good."
And that puts cancer and any worry about money in perspective.
"I’ve got God and I’ve got my family." she says. "You can’t let it beat you."
The team behind Justice in My Town - Health care crisis
DOCUMENTARY VIDEOGRAPHY AND PHOTOGRAPHY: Robert Bell (Rochester, N.Y.), Kenneth Blevins (Wilmington, N.C.), Richard Burkhart (Georgia), Shawn Dowd (Rochester, N.Y.), Alex Driehaus (Naples, Fla.), Andrea Melendez (Naples, Fla.), Ana Ramirez (Austin, Texas), Tania Savayan (Westchester, N.Y.), Alyssa Vidales (Austin, Texas)
REPORTING: Tom Corwin (Augusta, Ga.), Brian Gordon (North Carolina), Hannah Ly (Rochester, N.Y.), Luz Moreno-Lozano (Austin, Texas), David Robinson (New York), Janine Zeitlin (Naples, Fla.)
DATA VISUALIZATION: Janie Haseman (USA Today)
EDITORS: Michael Kilian, Kristen Cox Roby, Carrie Yale
DIGITAL PRODUCTION AND DEVELOPMENT: Spencer Holladay, Diane Pantaleo
SOCIAL MEDIA, ENGAGEMENT AND PROMOTION: Mason Callejas, Sarah Duenas, Kara Edgerson, Ana Hurler, Sarah Robinson
Published 2:53 AM UTC Aug. 24, 2021 Updated 3:05 AM UTC Aug. 24, 2021