If only Cindy Russo had a spare $200 two years ago, she might have avoided her current nightmare.
Doctors might have caught her cancer sooner if she hadn’t put off a mammogram, knowing it would lead to an ultrasound not fully covered by insurance.
And they might have found it sooner if, when she did get around to scheduling an ultrasound, an overdue bill from the last one hadn’t caused further delay.
So as it was, Russo, 47, of Long Island, New York, went a few years between mammograms. When she finally got checked out ‒ when the pain finally drove her to stop putting it off ‒ there were three cancerous lumps in her breast.
Now, the single mother of two boys, 8 and 11, is even more cash-strapped.
Prep for the polls: See who is running for president and compare where they stand on key issues in our Voter Guide
The helplessness she feels in the face of a scary diagnosis, unending bills and a system that feels rigged against her is all too familiar to vast numbers of Americans.
A recent poll shows that about three-quarters of Americans worry about the cost and availability of health care.
But other than talking about reducing the cost of some medications ‒ a favorite topic of President Joe Biden’s ‒ and how much of Medicare spending can be considered “wasteful,” the leading presidential candidates have been largely silent about health on the campaign trail.
Meanwhile, many Americans are fed up with the larger medical system, which causes “crippling” debt, lacks transparency and forces decisions that lead to situations like Russo’s, said Dr. Jerome Adams, who served as Surgeon General in the Trump administration.
There’s the financial side, said Adams, noting that health care bills are the leading cause of debt in America. There’s the medical side, where people are deferring or ignoring care because of bills and high cost. And there’s the sheer irrationality of it, like the $5,000 bill he just received for getting treated in an emergency room for dehydration, a minor health problem resolved for him with one bag of intravenous fluids.
“We literally can’t sustain this rate of runaway costs without significantly hurting our economy and global competitiveness,” Adams said.
Russo, a state tax auditor who held the same job for 20 years, had to go on disability after her diagnosis, when she was receiving high-dose chemotherapy, then a mastectomy and then radiation.
She was able to keep her $1,400 a month insurance plan for a year, but that’s almost up and she still needs costly immune and hormone therapies to hopefully keep her high-risk cancer from coming back.
Speaking on a video call from her bed, Russo said she’s due for reconstructive surgery in May or June and is not sure where the money will come from.
“If I didn’t have kids, I would probably just let nature take its course, because it’s just too much,” she said.
Obamacare isn’t perfect but alternatives have been few
Eighty percent of voters say the affordability of health care remains important to them, according to a poll published last month by the Kaiser Family Foundation; 74% said they are “somewhat” or “very worried” about being able to afford an unexpected medical bill, the highest of any financial concern.
The vast majority of Democrats said Biden has done more to address health care costs, with young voters less satisfied than older ones, while an equal percentage of Republicans said former President Donald Trump, the presumptive Republican nominee, did more during his time as president. Independents were evenly split.
Trump has promised to dismantle the Affordable Care Act ‒ commonly called Obamacare ‒ though he has not proposed a replacement, nor did he suggest one when he was in office.
Russo, who said her heart started pounding when asked about politics, is not a fan of Obamacare, enacted while Biden was vice president.
“It hasn’t done anything for me,” said Russo.
She can’t get ACA coverage unless or until she doesn’t have any through her work, and she can’t afford to go a day without insurance.
To Russo, the government program provides free care to people who don’t seem to have done anything to deserve it. Meanwhile, she’s worked two jobs since was 16, earned her college degree at 30, struggled to afford her own home and put away some small savings.
Then, “the one time in my life I get sick, I can’t get any help because I have a few thousand dollars in the bank,” she said.
Sue Sheridan, 64, a patient advocate living in McCall, Idaho, strongly supports Obamacare.
It stopped insurers from refusing to cover people with pre-existing medical conditions and eliminated the $1 million lifetime spending cap that many insurance plans imposed ‒ meaning others won’t end up, like she did, with $300,000 in medical debt after her husband died of cancer at age 45.
The law also focused on safety, which aligns with Sheridan’s passion. Medical mistakes cause about 250,000 deaths a year, according to recent estimates. The ACA required patient communities to be involved in redesigning health care.
“Obama was all about patient safety,” she said.
Bad care and bad luck
Sheridan got interested in patient safety and advocacy after a series of errors left her son Cal, now 28 and a TikTok influencer, with lifelong disabilities.
Cal, like many newborns, had an immature liver, leading to jaundice. A simple blood test and light therapy might have solved the problem, but the hospital had no policies in place on newborn jaundice management and the pediatrician dismissed Sheridan’s first-time-mom complaints and told her everything was fine.
When she and her husband Pat finally took Cal to the hospital, a young, resident mistakenly documented the wrong blood type. Without any safeguards to catch the error, other caregivers mistakenly ruled out certain diagnoses and treatments.
“We watched him suffer brain damage,” Sheridan said. But the first-time parents didn’t know what they were seeing.
It wasn’t until later, after 16 months of Cal essentially not sleeping and vomiting constantly, that a specialist looked back at an earlier MRI and realized what had happened. Such medical misdiagnoses occur about 800,000 times a year, according to a recent study.
“That’s what got me into this world,” said Sheridan, a founding member of Patients for Patient Safety US, a non-partisan, non-profit chapter of a World Health Organization group. Then, Pat Sheridan’s initial cancer diagnosis was ignored for six months, because his paperwork was left unseen on a fax machine.
It’s “unbelievable,” Sue Sheridan said, that no agency in the U.S. government is accountable for reducing medical harms or “making sure that Americans are safe in our health care system.”
Biden has successfully pressured pharmaceutical companies to cap the price of insulin at $35 a month and Congress to pass legislation allowing Medicare to negotiate lower prices on other popular drugs. Biden has also devoted substantial energy and resources to cancer prevention and care, focused attention and spending on mental health, directed more funding to at-home care services and protected and expanded health insurance coverage.
Still, health care doesn’t always make it to the top of his to-do list. An executive order on patient safety has been sitting on his desk waiting for his signature for months, for instance. The order calls for a White House-level coordinator of patient safety and a National Patient Safety Team to whom patients can report medical errors. Signing it “would be transformational,” Sheridan said.
During his admiration, Trump launched the fastest-ever vaccine development program, though he has since distanced himself from it, in the face of partisan opposition. He added more transparency to medical billing, signing into law the No Surprises Act, a bipartisan measure designed to protect patients from unexpected charges. He also supported the Right to Try bill, meant to provide easier access to experimental treatments for patients who’ve run out of other options, though the measure may not have helped as many people as anticipated.
Sheridan said health care shouldn’t be a Democratic or Republican issue. “It’s a shame how things can become so politicized, including our own safety and care. It shouldn’t be.”
Going after the health care system is a losing political argument regardless of party, said Adams, the former Surgeon General, who’s an anesthesiologist and critical care specialist. There’s a lot of financial interest in keeping the current system intact and a lot of room for the opposite party to criticize.
“Neither party has a real incentive from a campaign perspective to take on this issue even though most of America says this is an issue they are incredibly frustrated about,” he said.
A sick care system, not a health care care system
The American health care system is a crapshoot. Getting good care, research and anecdotes show, depends on where you live, your insurance coverage, your finances, your social support, your medical savvy, your skin color and sheer, dumb luck.
Russo, who participated in a recent study led by the American Cancer Society on how financial hardship leads to worse cancer outcomes, said she wants others to know how costly it is to get sick in America, even with insurance.
“Every procedure, I get a bill in excess of $150, I’m starting to just throw them in the garbage,” she said, adding that she now needs more frequent MRI’s, mammograms, ultrasounds and other tests for her cancer, as well as EKG’s to make sure her treatment isn’t damaging her heart. “(People) think if you have insurance you’re 100% covered. Clearly, that’s not how it works.”
Each day on average, 400 Americans are wheeled into an operating room for an amputation, typically a toe or foot.
Most could have been prevented, said Dr. Foluso Fakorede, an interventional cardiologist in Mississippi who has dedicated his career to trying to stop the downward spiral of peripheral arterial disease, which leads to these surgeries.
Fakorede left a for-profit hospital to start his own practice, Cardiovascular Solutions. The day he decided to leave, he said, was the day he saw a man scheduled for an amputation because he couldn’t afford the $60 copay for preventative treatment. Fakorede told the man to meet him out back and slipped him three $20 bills.
“What we call a health care system has trended more toward sick care,” Fakorede said.
Incentives in the system discourage simple prevention approaches, like telling patients they’re at risk for diabetes and helping them change their diet.
Supervised exercise, often prescribed to patients at risk for peripheral arterial disease, requires a $10 to $20 copay each for a dozen visits to a rehabilitation center that might be an hour’s drive away. For someone without easy access, making $32,000 a year, such a regimen is likely to be impossible, Fakorede said. Government insurance won’t reimburse for at-home supervised exercise, which would solve the problem.
Such policies can turn patients off and create mistrust in the system. “It’s a death sentence. All preventable,” he said.
Instead, there is money to be made by cutting off people’s limbs, leaving them disabled and unable to work and contribute to society.
Such problems are not unique to cancer or arterial disease, but extend throughout the whole medical system, said Kathy Giusti, a two-time cancer survivor who co-founded the Multiple Myeloma Research Foundation, which helped discover and bring to market 15 drugs to treat the blood cancer.
When Giusti had breast cancer in 2022, her history as a multiple myeloma patient wasn’t thoroughly considered, though it put her at high risk for infection. Better coordination among her oncologists might have saved her several surgeries and months of recovery.
“The entire system has to be revamped,” said Giusti, who has an appointment at Harvard Business School and has advised U.S. presidents on cancer care. “It’s going to take a fair amount of time and an unbelievable leader to make that happen.”
If the candidates really wanted to make a difference in the health of Americans, they would talk about prevention, primary care and public health, said Dr. Anand Parekh, chief medical advisor of the Bipartisan Policy Center, a think-tank that aims to combine ideas across the political aisle.
“But they’re certainly not going to talk about those issues on the campaign trail,” he said.
Karen Weintraub can be reached at kweintraub@usatoday.com.
