The new head of the federal agency that oversees health benefits for nearly 150 million Americans and $1 trillion in federal spending said in one of her first interviews that her top priorities will be broadening insurance coverage and ensuring health equity.
“We’ve seen through the pandemic what happens when people don’t have health insurance and how important it is,” said Chiquita Brooks-LaSure, who was confirmed by the Senate to lead the Centers for Medicare & Medicaid Services on May 25 and sworn in on May 27. “Our focus is going to be on making sure regulations and policies are going to be focused on improving coverage.”
It is an abrupt switch from the Trump administration, which steered the agency to spearhead efforts to repeal the Affordable Care Act and scale back Medicaid, the federal-state program for those with low incomes.
Brooks-LaSure, whose agency oversees the ACA marketplaces in addition to Medicare, Medicaid and the Children’s Health Insurance Program, said she is not surprised at the robust takeup of ACA insurance since President Joe Biden reopened enrollment in January. The administration announced last month that more than 1 million people had signed up already.
“Over the last couple of years, I’ve worked with a lot of the state-based marketplaces and we could see the difference in enrollment when the states were actively pushing coverage,” she said. A former congressional and Obama administration health staffer, Brooks-LaSure most recently was managing director at the consulting firm Manatt Health. “I believe that most people who are not enrolled want” coverage but may not understand it’s available or how to get it, she said. “It’s about knowledge and affordability.”
Brooks-LaSure also suggested the administration would support efforts in Congress to ensure coverage for the millions of Americans in the so-called Medicaid gap. Those are people in the dozen states that have not expanded Medicaid under the Affordable Care Act who earn too little to qualify for ACA marketplace coverage. Georgia Democratic Sens. Jon Ossoff and Raphael Warnock, whose GOP-led state has not expanded the program, are calling for a new federal program to cover those who fall in the gap.
Brooks-LaSure said she would prefer states use the additional incentive funding provided in the recent American Rescue Plan toward expanding their Medicaid programs, “because ideally states are able to craft policies in their own states; they’re closest to the ground.” But if states fail to take up the offer — none have so far — “the public option or other coverage certainly would be a strategy to make sure people in those states have coverage,” she said.
Also close on her radar is dealing with the impending insolvency of the trust fund that finances a large part of the Medicare program. Last year’s economic downturn and the resulting loss in employees’ withholding taxes is likely to accelerate the date when Medicare’s hospital insurance program will not be able to cover all its bills.
Brooks-LaSure said she is sure she and Congress will be spending time on the issue in the coming year, but those discussions could also provide an opportunity for officials to reenvision the Medicare program and consider expanding benefits. Democrats in Congress are looking at both lowering Medicare’s eligibility age and adding benefits the program lacks, including dental, hearing and vision coverage.
“I hope that we, when we are looking at solvency, really focus on making sure we keep the Medicare program robust,” said Brooks-LaSure. “And that may mean some changes that strengthen the program.”
Lorraine Rogge and her husband, Michael Rogge, travel the country in a recreational vehicle, a well-earned adventure in retirement. This spring found them parked in Artesia, New Mexico, for several months.
In May, Rogge, 60, began to feel pelvic pain and cramping. But she had had a total hysterectomy in 2006, so the pain seemed unusual, especially because it lasted for days. She looked for a local gynecologist and found one who took her insurance at the Carlsbad Medical Center in Carlsbad, New Mexico, about a 20-mile drive from the RV lot.
The doctor asked if Rogge was sexually active, and she responded yes and that she had been married to Michael for 26 years. Rogge felt she made it clear that she is in a monogamous relationship. The doctor then did a gynecological examination and took a vaginal swab sample for laboratory testing.
The only lab test Rogge remembered discussing with the doctor was to see whether she had a yeast infection. She wasn’t given any medication to treat the pelvic pain and eventually it disappeared after a few days.
Then the bill came.
The Patient: Lorraine Rogge, 60. Her insurance coverage was an Anthem Blue Cross retiree plan through her husband’s former employer, with a deductible of $2,000 and out-of-pocket maximum of $6,750 for in-network providers.
Total Bill: Carlsbad Medical Center billed $12,386.93 to Anthem Blue Cross for a vaginosis, vaginitis and sexually transmitted infections (STI) testing panel. The insurer paid $4,161.58 on a negotiated rate of $7,172.05. That left Rogge responsible for $1,970 of her deductible and $1,040.36 coinsurance. Her total owed for the lab bill was $3,010.47. Rogge also paid $93.85 for the visit to the doctor.
Service Provider:Carlsbad Medical Center in Carlsbad, New Mexico. It is owned by Community Health Systems, a large for-profit chain of hospital systems based in Franklin, Tennessee, outside Nashville. The doctor Rogge saw works for Carlsbad Medical Center and its lab processed her test.
Medical Service: A bundled testing panel that looked for bacterial and yeast infections as well as common STIs, including chlamydia, gonorrhea and trichomoniasis.
What Gives: There were two things Rogge didn’t know as she sought care. First, Carlsbad Medical Center is notorious for its high prices and aggressive billing practices and, second, she wasn’t aware she would be tested for a wide range of sexually transmitted infections.
The latter bothered her a lot since she has been sexually active only with her husband. She doesn’t remember being advised about the STI testing at all. Nor was she questioned about whether she or her husband might have been sexually active with other people, which could have justified broader testing. They have been on the road together for five years.
“I was incensed that they ran these tests, when they just said they were going to run a yeast infection test,” said Rogge. “They ran all these tests that one would run on a very young person who had a lot of boyfriends, not a 60-year-old grandmother that’s been married for 26 years.”
Although a doctor doesn’t need a patient’s authorization to run tests, it’s not good practice to do so without informing the patient, said Dr. Ina Park, an associate professor of family community medicine at the University of California-San Francisco School of Medicine. That is particularly true with tests of a sensitive nature, like STIs. It is doubly true when the tests are going to costs thousands of dollars.
“Quite frankly, the retail prices on [the bill] are ridiculous, they make no sense at all,” said Root. “Those are tests that cost about $10 to run.”
In fall 2019, The New York Times and CNN investigated Carlsbad Medical Center and found the facility had taken thousands of patients to court for unpaid hospital bills. Carlsbad Medical Center also has higher prices than many other facilities — a 2019 Rand Corp. study found that private insurance companies paid Carlsbad Medical Center 505% of what Medicare would pay for the same procedures.
The bundled testing panel run on Rogge’s sample was a Quest Diagnostics SureSwab Vaginosis Panel Plus. It included six types of tests. Quest Diagnostics didn’t provide the cost for the bundled tests, but Kim Gorode, a company spokesperson, said if the tests had been ordered directly through Quest rather than through the hospital, it was likely “the patient responsibility would have been substantially less.”
According to Medicare’s Clinical Laboratory Fee Schedule, Medicare would have reimbursed labs only about $40 for each test run on Rogge’s sample. And Medicaid would reimburse hospitals in New Mexico similarly, according to figures provided by Russell Toal, superintendent of New Mexico’s insurance department.
But hospitals and clinics can — and do — add substantial markups to clinical tests sent out to commercial labs.
Although private health insurance doesn’t typically reimburse hospitals at Medicare or Medicaid rates, Root said, private insurance reimbursement rates are rarely much more than 200% to 300% of Medicare’s rates. Assuming a 300% reimbursement rate, the total private insurance would have reimbursed for the six tests would have been $720.
That $720 is less than what Carlsbad Medical Center charged Rogge for her chlamydia test alone: $1,045. And for several of the tests, the medical center charged multiple quantities — presumably corresponding to how many species were tested for — elevating the cost of the yeast infection test to over $4,000.
Toal, who reviewed Rogge’s bill, called the prices “outrageous.”
Resolution: Rogge contacted Anthem Blue Cross and talked to a customer service representative, who submitted a fraud-and-waste claim and an appeal contending the charges were excessive.
The appeal was denied. Anthem Blue Cross told Rogge that under her plan the insurance company had paid the amount it was responsible for, and that based on her deductible and coinsurance amounts, she was responsible for the remainder.
Anthem Blue Cross said in a statement to KHN all the tests run on Rogge were approved and “paid for in accordance with Anthem’s pre-determined contracted rate with Carlsbad Medical Center.”
By the time Rogge’s appeal was denied, she had researched Carlsbad Medical Center and read the stories of patients being brought to court for medical bills they couldn’t pay. She had also gotten a notice from the hospital that her account would be sent to a collection agency if she didn’t pay the $3,000 balance.
Fearing the possibility of getting sued or ruining her credit, Rogge agreed to a plan to pay the bill over three years. She made three payments of $83.63 each in September, October and November, totaling $250.89.
After a Nov. 18 call and email from KHN, Carlsbad Medical Center called Rogge on Nov. 20 and said the remainder of her account balance would be waived.
Rogge was thrilled. We “aren’t the kind of people who have payment plans hanging over our heads,” she said, adding: “This is a relief.”
“I’m going to go on a bike ride now” to celebrate, she said.
The Takeaway: Particularly when visiting a doctor with whom you don’t have a long-standing trusted relationship, don’t be afraid to ask: How much is this test going to cost? Also ask for what, exactly, are you being tested? Do not be comforted by the facility’s in-network status. With coinsurance and deductibles, you can still be out a lot.
If it’s a blood test that will be sent out to a commercial lab like Quest Diagnostics anyway, ask the physician to just give you a requisition to have the blood drawn at the commercial lab. That way you avoid the markup. This advice is obviously not possible for a vaginal swab gathered in a doctor’s office.
Patients should always fight bills they believe are excessively high and escalate the matter if necessary.
Rogge started with her insurer and the provider, as should most patients with a billing question. But, as she learned: In American medicine, what’s legal and in accordance with an insurance contract can seem logically absurd. Still, if you get no satisfaction from your initial inquiries, be aware of options for taking your complaints further.
Toal, the insurance superintendent in New Mexico, said his office doesn’t (and no office in the state does that he’s aware of) have the authority to tell a hospital its prices are too high. But he can look into a bill like Rogge’s if a complaint is filed with his office.
“If the patient wants, they can request an independent review, so the bill would go to an independent organization that could see if it was medically necessary,” Toal said.
That wasn’t needed in this case because Rogge’s bill was waived. And after being contacted by KHN, Melissa Suggs, a spokesperson with Carlsbad Medical Center, said the facility is revising their lab charges.
“Pricing for these services will be lower in the future,” Suggs said in a statement.
Bill of the Month is a crowdsourced investigation by KHN and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!
Anita Baron first noticed something was wrong in August 2018, when she began to drool. Her dentist chalked it up to a problem with her jaw. Then her speech became slurred. She managed to keep her company, which offers financing to small businesses, going, but work became increasingly difficult as her speech worsened. Finally, nine months, four neurologists and countless tests later, Baron, now 66, got a diagnosis: amyotrophic lateral sclerosis.
ALS, often called Lou Gehrig’s disease after the New York Yankees first baseman who died of it in 1941, destroys motor neurons, causing people to lose control of their limbs, their speech and, ultimately, their ability to breathe. It’s usually fatal in two to five years.
People with ALS often must quit their jobs and sometimes their spouses do, too, to provide care, leaving families in financial distress. A decade-long campaign by advocates highlighting this predicament notched a victory last month when Congress passed a bill opening key support programs earlier for ALS patients.
In late December, then-President Donald Trump signed the bill into law. It eliminates for ALS patients the required five-month waiting period to begin receiving benefits under the Social Security Disability Insurance program, which replaces at least part of a disabled worker’s income. Gaining SSDI also gives these patients immediate access to Medicare health coverage.
The Muscular Dystrophy Association, an umbrella organization for people with 43 neuromuscular conditions, partnered with other ALS groups to support the bill to eliminate the SSDI waiting period.
“We’re hopeful that it can serve as a model for other conditions that may be similarly situated,” said Brittany Johnson Hernandez, senior director of policy and advocacy at MDA.
In the weeks leading up to the passage of the bill, Sen. Mike Lee (R-Utah) sought to broaden the scope of the legislation to include other conditions. He pledged to continue to work on legislation to eliminate the SSDI waiting period for additional diseases that meet certain criteria, including those with no known cure and a life expectancy of less than five years.
Eliminating the SSDI waiting period has been a top priority for ALS advocates. There is no simple, single test or scan to confirm that someone has ALS, though symptoms can escalate rapidly. By the time people finally get the diagnosis, they are often already seriously disabled and unable to work. Waiting five months longer for financial aid can be a burden, according to patients and families.
“Five months may seem like a short period of time, but for someone with ALS it matters,” said Danielle Carnival, CEO of I Am ALS, an advocacy group. “It’s a huge win and will make a huge difference for people right away.”
Eligibility for SSDI benefits generally requires people to have worked for about a quarter of their adult lives at jobs through which they paid Social Security taxes. Benefits are based on lifetime earnings; the average monthly SSDI benefit was $1,259 in June 2020, according to the Social Security Administration. (The average retirement benefit was $1,514 that month.)
The SSDI waiting period was intended to make sure the program served only people expected to have claims that would last at least a year, said Ted Norwood, chief legal officer at Integrated Benefits Inc. in Jefferson City, Missouri, who represents SSDI applicants. But it isn’t necessary, he added, because disability rules now require that people have a condition that will keep them out of work at least a year or result in death.
“The five-month waiting period serves no purpose as far as weeding out cases,” Norwood said.
Existing federal law also made special health provisions for people with ALS and end-stage renal disease. Most people with disabilities must wait two years to be eligible for Medicare, but people with either of those two diseases can qualify sooner. ALS patients are eligible as soon as SSDI benefits start.
The new law could have made a big difference for Baron, who lives in Pikesville, Maryland. She and her husband, who works part time at a funeral parlor, didn’t have comprehensive health insurance when she got sick. They were enrolled only in a supplemental medical plan that paid out limited cash benefits.
By the time she was diagnosed and her SSDI and Medicare came through, Baron and her husband had maxed out their credit cards, raided $10,000 from their IRA and gone to their family for money. They were $13,000 in debt. They sold their house and moved into a condo to save on expenses.
“It is imperative that as [people] become more and more debilitated and cannot work, that they have immediate access to SSDI,” Baron said.
Like Sen. Lee, some patient advocates say the accommodations on disability benefits and Medicare made for patients with ALS should be extended to others with similarly intractable conditions.
The Social Security Administration has identified 242 conditions that meet the agency’s standards for qualifying for disability benefits and are fast-tracked for benefit approval.
Once approved, people with these conditions still must wait five months before they receive any money. Now, under the new law, people with ALS can skip the waiting period, though no one else on the “compassionate allowances” list can.
Breast cancer advocates are hoping for similar accommodations for people with metastatic breast cancer. Legislation introduced in the House and Senate in 2019 would have eliminated the SSDI waiting period for this group, but it did not pass.
Tackling the problem one condition at a time doesn’t make sense, others argue.
“Can you imagine, one by one, people with these conditions trying to find people in the House and in the Senate to champion the bill?” said Carol Harnett, president of the Council for Disability Awareness, which represents disability insurers.
Deb McQueen-Quinn thinks it would be good if the new law sets a precedent for eliminating the SSDI waiting period. At 55, McQueen-Quinn has lived with ALS since 2009, far longer than most.
A former convenience store manager, she uses a wheelchair full time now. She knows all too well the toll of the disease. ALS runs in her family, and she’s watched several family members, including her sister, brother and a cousin die of it.
Her sister, a former quality control engineer, was diagnosed in 2006 and died the following year, a week before she would have received her first SSDI payment.
McQueen-Quinn, who lives in Wellsville, New York, with her husband, has two children in their 30s. Her son, 33, carries the familial genetic mutation that leads to ALS. So far he hasn’t developed symptoms. But it’s for people like her son and other family members that she fought for the new law.
“Now that we’ve set the precedent, I’m sure you’ll see a lot of other diseases go after this,” she said.