Tagged Cost and Quality

Must-Reads Of The Week From Brianna Labuskes

Happy Friday! Before we dive in to the harder news, please join me in enjoying this story about scientists dosing a shy breed of octopus with ecstasy to see if the animal became cuddly and friendly while high. (I swear, it relates to health care: More studies are evaluating psychedelic drugs as outside-the-box treatments, especially for post-traumatic stress disorder in veterans.)

Now, here’s what else you may have missed:

Senators were busy bees this week on the Hill. In a rare bipartisan feat, the upper chamber passed a sweeping opioids package … but there’s some fine print. Lawmakers still have to iron out the (harder, more controversial) differences between the Senate and House versions of the legislation, and they probably won’t do that work until November — conveniently, after midterms. Until then, they have a talking point!

And you know that “doughnut hole” change (which forces drugmakers to pay more for medication used by Medicare beneficiaries) that pharma hates and has been pestering lawmakers about for ages? Congress might tuck a measure rolling that back into the opioid package.

The Associated Press: GOP, Dems Unite Behind Senate Bill Fighting Addictive Drugs

Stat: GOP Lawmakers Seeking to Use Opioids Bill to Deliver Drug Industry Major Victory

It’s not all roses for drugmakers, though: A Senate-passed bill would ban “gag clauses,” which currently keep pharmacists from talking to consumers about lower-cost options.

Stat: Senate Passes Bill That Would Ban ‘Gag Clauses’ Limiting Disclosures on Drug Prices

In a sharp divergence from the budget spectacles of years past, the Senate quietly OK’d a measure to avert a government shutdown. The measure included a big, 5 percent boost to the National Institutes of Health, which was the fourth-straight significant increase for the agency.

The Associated Press: Senate Backs Bill to Avert Shutdown, Boost Military Spending

There’s a real fear out there that we’re all one bad accident away from financial ruin. A bipartisan group of senators wants to protect patients from that worry with its proposed measure on surprise bills, otherwise known as “balance billing.” (Bonus: Check out the KHN story that Republican Sen. Bill Cassidy cited in his announcement.)

The Hill: Bipartisan Senators Unveil Proposal to Crack Down on Surprise Medical Bills


As the news continues to evolve over the sexual assault allegations against Supreme Court nominee Brett Kavanaugh, here’s a health tidbit you might have missed if you didn’t scan all the way to the bottom of today’s stories. Gov. Bill Walker of Alaska, an independent, and his lieutenant governor, Byron Mallott, both came out against Kavanaugh’s nomination — not because of the accusations, but because they’re worried he’s going to jeopardize Medicaid coverage. It will be interesting to see if that’s enough to sway Alaska Sen. Lisa Murkowski, a Republican, who is being watched closely as a possible swing vote.

The New York Times: Christine Blasey Ford Opens Negotiations on Testimony Next Week


Attorney general races are rarely the belles of the ball when it comes to elections. But as more of them use their position to try to check President Donald Trump’s policies (especially ones chipping away at the health law), the campaigns are drawing more eyes.

Politico: Obamacare Lawsuit Boosts Democrats in State AG Races

Preexisting conditions have been a bomb Republicans have been trying to defuse for weeks on the campaign trail, but even GOP strategists call it a losing battle. “What you have to do at this point is duck and cover,” said one in Politico’s coverage.

Politico: Republicans ‘Duck and Cover’ on Pre-Existing Conditions


A new, more detailed report has emerged of the slow-moving medical catastrophe that was Hurricane Maria. It’s also a grim insight into why counting a death toll becomes so complicated.

The Associated Press: Maria’s Death Toll Climbed Long After Rain Stopped

Meanwhile, an investigation has been launched into why two mentally ill women who were seeking care were taken from a safe hospital and driven into Florence’s floodwaters, where they both drowned.

The New York Times: They Were Seeking Mental Health Care. Instead They Drowned in a Sheriff’s Van.


In the miscellaneous, must-read file for the week:

  • The U.S. is the most dangerous place to have a baby in the developed world, yet states are doing little to address the issue. And the ones that are, often blame the moms.

USA Today: Maternal Deaths: What States Aren’t Doing to Save New Mothers’ Lives

  • We’re on the precipice of some amazing breakthroughs for cancer treatments, yet Native Americans and black patients are missing out because they’re underrepresented in clinical trials.

ProPublica/Stat: Black Patients Are Being Left Out of Clinical Trials for New Cancer Therapies

  • Personal health aides can be a lifeline for elderly patients. Inviting a stranger into your home, though, is inherently risky and there’s few regulations that exist to weed out predators.

Boston Globe: Stranger in the House

  • And a fascinating Alzheimer’s treatment called “reminiscence therapy” has seen success overseas and is gaining traction here. Check out this one facility that recreated a 1950s town square, complete with Buddy Holly on the jukebox and an old-fashioned diner.

The Wall Street Journal: To Help Alzheimer’s Patients, A Care Center Re-Creates The 1950s


As a newsroom that has a dedicated chocolate drawer and sweet treats brought in by colleagues a few times a week, this article on employers cutting down on sugary snacks sparked a bit of a debate here. To ban or not to ban, that is the question of the week.

Have a great weekend!

‘A Lot Of Opportunities’ Exist For Cutting Drug Costs, Trump Health Official Tells Congress

Joe Grogan, OMB’s associate director for health programs, didn’t specify what lawmakers can do before year’s end to stem rising costs, but one bill with bipartisan support helps generic companies obtain samples of brand drugs as part of the development process. News on the industry also spotlights a new lobbying heavyweight for PBM and Medicaid pharmaceutical spending.

Podcast: KHN’s ‘What The Health?’ Health On The Hill

As the start of the fiscal year draws near — along with pivotal midterm elections — Congress is picking up its pace on legislation. This week alone the Senate passed a comprehensive bill aimed at curbing the opioid epidemic and a nearly final bill to fund the Department of Health and Human Services.

Meanwhile, a bipartisan group of senators unveiled draft legislation aimed at helping patients who receive “surprise” medical bills after inadvertently receiving medical care outside their insurance carrier’s network.

This week’s panelists are Julie Rovner of Kaiser Health News, Rebecca Adams of CQ Roll Call, Margot Sanger-Katz of The New York Times and Joanne Kenen of Politico.

On Sept. 27, the podcast will tape in front of a live audience at the Texas Tribune Festival in Austin, Texas. Details are here. Also on Sept. 27, KHN is hosting a live event to discuss medical overtreatment and its health consequences. More information on that event is here.

Among the takeaways from this week’s podcast:

  • Legislation to combat the opioid epidemic is expected to move through Congress quickly because both Republicans and Democrats are eager to show voters they are addressing what is a nationwide public health crisis.
  • That opioid package won’t provide a solution to one of the most vexing problems of the epidemic: The majority of deaths come from the use of an extremely powerful drug, fentanyl, that is often mixed with illegal opioids.
  • For the first time in years, Congress is likely to pass a bill to fund HHS before the start of the fiscal year on Oct. 1. The bill is known for triggering “culture war” debates, especially on issues dealing with abortion, but lawmakers have largely avoided that this year.
  • Opponents of abortion sought to use the HHS appropriations bill to defund Planned Parenthood. But both Republicans and Democrats worked to stop any poison pills that might have held up the bill. Also, the bill needs 60 votes to pass the Senate, so Democrats had to be accommodated in order to get it through.
  • Sen. Bill Cassidy (R-La.) headed a bipartisan group of senators who unveiled a bill this week that would squelch surprise medical bills that patients get from out-of-network hospitals or doctors, a process known as “balance billing.” The initiative isn’t expected to pass this year, but it is an issue that Cassidy will likely bring up again next year when the new Congress meets.

Plus, for extra credit, the panelists recommend their favorite health stories of the week they think you should read, too:

Julie Rovner: Politico’s “Obamacare Lawsuit Boosts Democrats in State AG Races,” by Alice Ollstein

Rebecca Adams: The Wall Street Journal’s “Behind Your Rising Health-Care Bills: Secret Hospital Deals That Squelch Competition,” by Anna Wilde Mathews

Joanne Kenen: The New York Times’ “23andMe Said He Would Lose His Mind. Ancestry Said The Opposite. Which Was Right?” by Laura Hercher

Margot Sanger-Katz: The New York Times’ “Manchin Counts on Health Care to Stave Off Republican Tide in West Virginia,” by Trip Gabriel

To hear all our podcasts, click here.

And subscribe to What the Health? on iTunesStitcher or Google Play.

Despite Red Flags At Surgery Centers, Overseers Award Gold Seals

(Maria Fabrizio for KHN)

At his surgery center near San Diego, Rodney Davis wore scrubs, was referred to as “Dr. Rod” and carried the title of director of surgery. But he was a physician assistant, not a doctor, who anesthetized patients and performed liposuction with little input from his supervising doctor, court records show.

So it was perhaps no surprise, in 2016, when an administrative judge stripped Davis of his license, concluding it was the only way to “protect the public.” State officials also accused two former medical directors of Pacific Liposculpture of enabling Davis to act as a doctor.

One powerful authority in California took a different view. The state-approved private accreditation agency that oversees the center left its approval in place. So the center is still operating and Davis remains an owner and administrator, state records show.

California is the only state with more than 1,000 surgery centers that has given private accreditors a lead role in oversight. Those accreditors are typically paid by the same centers they evaluate.

That approach to oversight has created a troubling legacy of laxity, an investigation by Kaiser Health News shows. In case after case, as federal or state authorities waved red flags, state-approved accreditation agencies affixed gold seals of approval, according to a KHN review of hundreds of pages of doctors’ disciplinary records, court files and accreditor reports — which are public only for California surgery centers.

One accreditation inspector called a doctor’s anesthesia technique “impressive” just months before the state medical board accused her of “gross negligence” for putting patients in deep sedation without the training to save them if they stopped breathing. Another doctor who is fighting a medical board accusation of “gross negligence” over two patient deaths in 2014 and 2015 got his own surgery center approved by an accreditor in 2016.

In yet another case, Medicare officials declared a state of “immediate jeopardy” at a center that put an untrained receptionist in charge of disinfecting surgical scopes, a Medicare inspection report says. Its accreditor renewed its approval within a week.

Patient deaths after care in a California surgery center reached a 14-year high with 18 cases in 2016, though the total dipped to 14 the following year, according to state records based on reports filed by the centers. Since 2010, at least 102 patients have died after care in the state’s surgery centers. Such facilities perform a variety of outpatient surgeries and now outnumber hospitals nationally.

State Sen. Jerry Hill, a San Francisco Bay Area Democrat, chairs the committee that oversees the state medical board, which reviews and approves the state’s surgery center accreditation agencies every three years.

Briefed on the investigation’s findings, Hill said this “definitely warrants a deeper examination into what’s going on at the surgery centers and how the accreditation process is working today — and [whether it’s] providing the patient protection I was hoping for when we established it.”

‘Impressive’ Or Negligent?

California’s oversight of surgery centers was upended about a decade ago when a physician’s legal victory led the Department of Public Health to conclude it could no longer license doctor-owned surgery centers. The doctor had filed suit, challenging the requirement that he and his surgery center both maintain a license. He prevailed, putting state oversight of the doctor-owned centers in flux.

In 2011, state lawmakers came up with a solution, mandating that the state medical board approve the private accreditors that would be on the front lines of oversight. Today, five accreditors are allowed to both inspect surgery centers and to grant or deny surgery centers approval to operate. (Centers can also operate with just Medicare approval.)

State medical board officials denied a request for death reports that included centers’ names, making a more comprehensive review of the centers or their accreditors difficult. Some of the same accreditation agencies that approve surgery centers, though, have been under fire with members of Congress after a Wall Street Journal report pinpointed gaps in their oversight of hospitals.

With the change in California, the state-approved accreditation agencies got a guaranteed source of income, since the centers each pay their accrediting agency about $15,000 every three years for their oversight role. In turn, the accreditors made a first-of-its kind concession: They agreed to make their inspection reports open to the public on a state website.

Those reports show that accreditors, at times, were at odds with other officials.

On May 1, 2012, the Institute for Medical Quality, or IMQ, a San Francisco-based accreditor, inspected Advanced Medical Spa in Rocklin, Calif. The inspectors were required to check whether the person administering anesthesia was “qualified and working within their scope of practice.”

The inspector’s note says the surgeon’s wife, a pediatrician, was performing “conscious sedation” anesthesia and said her technique with the drug propofol was “impressive.” The standard was marked as “met” and accreditation was awarded through 2015.

A month later, the state medical board launched an investigation of the pediatrician, Dr. Yessennia Candelaria, over complaints that she was handling anesthesia for plastic surgery procedures without “requisite training in anesthesia, including Propofol,” the board’s records show.

Investigators for the Medical Board of California found that before and after the accreditor’s review, Candelaria was using propofol to put patients in a state of “deep sedation” even though she didn’t have the “advanced airway” training in how to rescue them if their breathing shut down. Medical board authorities deemed the lapse “gross negligence” in an accusation filed in 2014 that also accused her of abusing controlled drugs. Her medical license was put on probation for seven years. Medical board authorities recently moved to revoke her license over unauthorized prescribing, and she has not yet filed a written response.

An attorney for Candelaria declined to comment and Candelaria did not respond to a request for comment.

In February 2013, IMQ revoked its approval of Advanced Medical Spa. The following month, Candelaria and her husband, Dr. Efrain Gonzalez, were arrested in a separate criminal case. Gonzalez was charged with 37 felony counts that included mayhem and conspiracy for allegedly disfiguring the women he operated on at the center. Candelaria was charged with 24 felony counts, including mayhem and grand theft by false pretense.

Gonzalez pleaded guilty to three felonies and was sentenced to three months of house arrest in the criminal case and surrendered his medical license. Charges were ultimately dismissed against Candelaria, who pleaded not guilty.

Victoria Samper, vice president of ambulatory programs with IMQ, said she could not comment on specific facilities. But she did note that California law allows doctors to practice outside of the field they initially train in. She also said if a doctor is doing so, an inspector would be expected to “drill down” into the physician’s practices.

The medical board said in a statement that the private accreditor who dubbed Candelaria’s technique “impressive” reviewed her work with a different patient than those cited in the board’s accusation.

“If the Board becomes aware that there is an accreditation agency that is not following the law when accrediting outpatient surgery settings, the Board would look into it,” the statement said.

Decertified, Yet Still Operating

Accreditation agencies have stood by eight California surgery centers facing the federal Medicare program’s harshest consequence — “involuntary decertification.” It’s a rare sanction that amounts to being deemed unfit to care for seniors.

On March 22, 2016, California Department of Public of Health inspectors notified federal authorities about a state of “immediate jeopardy” at Digestive Diagnostic Center, a small endoscopy center south of San Francisco.

A state inspection report said the center had pressed its new receptionist into duty to disinfect medical devices that probe patients’ colons — with no formal training. The center failed to protect patients and had “ineffective infection-control policies which did not address hiring … of qualified individuals,” the report concluded.

Something else happened that day as well. The Accreditation Association for Ambulatory Health Care, or AAAHC, renewed its approval of the center, which the agency describes as a “widely recognized symbol of quality” to patients and health insurers.

Medicare involuntarily decertified the facility a month later, which meant the federal agency would no longer pay for seniors’ care at the center. But with private accreditation still in place, private insurers would be likely to continue funding care there.

Dr. Michael Bishop, a former California medical board member, said the case exposes a gap in state oversight if a center falls below one overseer’s standard but meets another’s. “You want no one to have easier [approval] process than any other one,” he said. “That’s quite egregious.”

Kevin Calisher, president of the surgery center management firm Calisher & Associates, said his company took over management of the center in 2017, and that he could not comment on Medicare’s findings.

AAAHC said in a statement that it could not discuss individual facilities.

The medical board’s statement said Medicare is not required to notify the board when it decertifies a surgical center. “Now that this situation has been brought to the Board’s attention, however, the Board will be looking into the matter,” the statement said.

The Case Of ‘Doctor’ Davis

On April 9, 2015, an inspector from AAAHC arrived to perform an initial inspection of Pacific Liposculpture, which had been operating since 2011.

The inspectors’ checklist included a review of complaints filed against the center by a state “licensure board.” Davis had already been publicly accused by the state physician assistant board of engaging in the unlawful practice of medicine and gross negligence for failing to appropriately care for patients who experienced complications.

The inspector checked the box for “substantial compliance” and awarded the center approval through April 2018.

That decision was “enraging actually, outrageous,” said Todd Glanz, a San Diego-area attorney. He represents a patient, Cecilia O’Neill, who went to the center for liposuction a few weeks after it was accredited.

O’Neill returned a few days after her May 28, 2015, procedure, complaining of pain, dizziness and signs of infection, her lawsuit alleges. But she claims her condition got worse. On June 9, 2015, she went to an emergency room, where she was told she had sepsis and needed emergency surgery followed by a stay in the ICU, according to her lawsuit.

Glanz said O’Neill was left with a hospital bill of nearly $200,000 and ongoing disfigurement. Davis and Dr. Harrison Robbins, the facility’s former medical director and other owner, have denied wrongdoing and are fighting the ongoing lawsuit.

The following year, in February 2016, Davis faced an eight-day administrative hearing over whether he should keep his license as a physician assistant. A central issue was whether he truly worked under a doctor’s supervision, as the law requires, or hired a figurehead who would exert little control.

One 2010 email discussed in court was by Davis, saying he hoped his new supervising physician, Dr. Jerrell Borup, would not be “another clumsy physician getting in the way.”

His attorney presented experts and argued that he should keep his license. At its conclusion, the administrative judge revoked his license and reached a searing conclusion.

Davis “purposefully and intentionally set out to create a business arrangement that looked legitimate on paper,” Judge Susan Boyle wrote, “but allowed him to manipulate the system and run a liposuction business without the interference of a physician.”

The two former medical directors of the center were accused by the Medical Board of California of “aiding and abetting” Davis’ unlicensed practice of medicine. Neither doctor actively supervised Davis, who performed all the procedures, the accusations say.

Davis has denied wrongdoing in each proceeding and declined to comment for this report through an attorney. One of the former medical directors, Borup, surrendered his license in 2016. The other, Dr. Harrison Robbins, is fighting the medical board’s similar case against him. The controversy did not deter AAAHC, which earlier this year approved the center through April 2021.

Robert Frank, a San Diego attorney who represented Davis and Robbins, said Robbins has retired and the public should have no concerns about Davis’ ongoing administrative role at Pacific Liposculpture.

“[Davis] knows the business, he knows the procedure and he knows he’s being watched and scrutinized” during the ongoing legal case, Frank said.

Davis contested his license revocation but lost that case in Sacramento Superior Court. He’s now challenging that decision in appeals court.

Betsy Imholz, former director of special projects for Consumers Union, who reviewed the findings for this report, said the case was shocking. “There are huge gaps in California law, clearly,” she said.

Two Deaths And Then A Green Light

The families of two women in their 40s sued Diamond Surgery Center in Encino, Calif., and its surgeon, alleging wrongdoing in their 2014 and 2015 deaths.

The incidents did not stop the facility from getting accreditation in 2017 from the Chicago-based Joint Commission, the nation’s most prominent accreditor.

Oneyda Mata, 40, was the first to die, on March 29, 2014. According to her autopsy, she called 911 from her car, struggling to breathe. Although her liposuction at the surgery center was 22 days earlier, the autopsy lists Diamond Surgery Center as the “place of injury” in her death from a blood clot lodged in her lung.

Dr. Roya Dardashti admitted no fault, but reached a $200,000 settlement in the family’s lawsuit. The sum became public only because the family filed legal records saying Dardashti failed to make some payments.

MaryCruz Elizalde, 42, was the second to die, on Dec. 10, 2015. She was in recovery after a tummy tuck and liposuction at Diamond Surgery Center when she went into cardiac arrest and was taken to a hospital. Her autopsy says she died from internal bleeding and shock “as a consequence of complications of surgery.”

Elizalde’s partner’s lawsuit alleged that an unlicensed anesthesia provider at the center was involved in her care. The case was voluntarily dismissed after the partner was imprisoned in an unrelated fraud case.

State law bars doctors from operating in an unapproved facility at levels of anesthesia that rob people of their “life-preserving” reflexes.

Whether the facility operated outside of that limit or erred in either woman’s care wasn’t noted when the center got its initial approval to operate in 2017.

With a slightly different, new name, Diamond Surgical Institute, the same location and same lead doctor, the facility now appears to have full accreditation on the state’s website for surgery centers.

Joint Commission spokeswoman Katherine Bronk said the center was awarded “limited temporary accreditation” in 2017 and 2018 after “limited” inspections. Those limited inspections did not include a check of patient medical records because they’re designed for facilities “not actively caring for patients.”

Bronk said in an email that past problems might not affect an accreditation decision.

“If the surgery center had not been following the law but made compliance with the law part of its corrective action plan, it would not necessarily be denied accreditation,” she wrote. “As a private accreditor, our goal is to help organizations identify deficiencies in care and correct them as quickly and sustainably as possible.”

Dardashti did not respond to calls or email requests for an interview. The medical board declined to say whether it has received a report of a patient death from the facility since 2014, saying the information is “confidential.”

State law requires accreditors to perform a “reasonable investigation” of a surgery center’s past, which includes a check to see if its doctors have a license, which Dardashti did. The checks should go deeper, said Imholz, of Consumers Union.

“If past is prologue, we should be looking at what the key players, owners and doctors involved, what they have in their records,” she said. “It’s relevant; it should be looked at.”


KHN’s coverage related to aging and improving care of older adults is supported in part by The John A. Hartford Foundation.

Senators Unveil Legislation To Protect Patients Against Surprise Medical Bills

With frustration growing among Americans who are being charged exorbitant prices for medical treatment, a bipartisan group of senators Tuesday unveiled a plan to protect patients from surprise bills and high charges from hospitals or doctors who are not in their insurance networks.

The draft legislation, which sponsors said is designed to prevent medical bankruptcies, targets three key consumer concerns:

  • Treatment for an emergency by a doctor who is not part of the patient’s insurance network at a hospital that is also outside that network. The patients would be required to pay out-of-pocket the amount required by their insurance plan. The hospital or doctor could not bill the patient for the remainder of the bill, a practice known as “balance billing.” The hospital and doctor could seek additional payments from the patient’s insurer under state regulations or through a formula established in the legislation.
  • Treatment by an out-of-network doctor or other provider at a hospital that is in the patient’s insurance network. Patients would pay only what is required by their plans. Again, the doctors could seek more payments from the plans based on formulas set up by state rules or through the federal formula.
  • Mandated notification to emergency patients, once they are stabilized, that they could run up excess charges if they are in an out-of-network hospital. The patients would be required to sign a statement acknowledging that they had been told their insurance might not cover their expenses, and they could seek treatment elsewhere.

“Our proposal protects patients in those emergency situations where current law does not, so that they don’t receive a surprise bill that is basically uncapped by anything but a sense of shame,” Sen. Bill Cassidy (R-La.) said in his announcement about the legislation.

Kevin Lucia, a senior research professor at Georgetown University’s Center on Health Insurance Reforms who had not yet read the draft legislation, said the measure was aimed at a big problem.

“Balance billing is ripe for a federal solution,” he said. States regulate only some health plans and that “leaves open a vast number of people that aren’t covered by those laws.”

Federal law regulates health plans offered by many larger companies and unions that are “self-funded.” Sixty-one percent of privately insured employees get their insurance this way. Those plans pay claims out of their own funds, rather than buying an insurance policy. Federal law does not prohibit balance billing in these plans.

Cassidy’s office said, however, that this legislation would plug that gap.

In addition to Cassidy, the legislation is being offered by Sens. Michael Bennet (D-Colo.), Chuck Grassley (R-Iowa), Tom Carper (D-Del.), Todd Young (R-Ind.) and Claire McCaskill (D-Mo.).

Cassidy’s announcement cited two recent articles from Kaiser Health News and NPR’s “Bill of the Month” series, including a $17,850 urine test and a $109,000 bill after a heart attack.

In a statement to Kaiser Health News, Bennet said, “In Colorado, we hear from patients facing unexpected bills with astronomical costs even when they’ve received a service from an in-network provider. That’s why Senator Cassidy and I are leading a bipartisan group of senators to address this all-too-common byproduct of limited price transparency.”

Emergency rooms and out-of-network hospitals aren’t the only sources of balance bills, Lucia said. He mentioned that both ground and air ambulances can leave patients responsible for surprisingly high costs as well.

Lucia said he was encouraged that both Democrats and Republicans signed on to the draft legislation.

“Any effort at the federal level is encouraging because this has been a challenging issue at the state level to make progress on,” Lucia said.

KHN reporter Carmen Heredia Rodriguez contributed to this article.

Paper Jam: California’s Medicaid Program Hits ‘Print’ When The Feds Need Info

In the shadow of Silicon Valley, the hub of the world’s digital revolution, California officials still submit their records to the feds justifying billions in Medicaid spending the old-fashioned way: on paper.

Stacks and stacks of it.

Stuck with decades-old technology, the nation’s largest Medicaid program forces federal officials to sift through thousands of documents by hand rather than sending electronic files. That’s one of the critical findings in a Sept. 5 report from the federal government’s chief watchdog citing inefficient and lax oversight of Medicaid nationwide.

To illustrate, the U.S. Government Accountability Office published a photo showing piles of records submitted for one three-month period. One folder was placed upright to show the height of the heap.

“It’s really amazing when you look at that picture,” said Carolyn Yocom, a health care director at the GAO who focuses on Medicaid, the federal-state health insurance program for low-income people. “For this type of reporting on expenditures, California really should be able to provide that electronically.”

California, with more than 13 million Medicaid enrollees, said it’s hamstrung because it uses 92 separate computer systems to run its Medicaid program — although it has plans underway to modernize its technology.

“Given system limitations and the magnitude of the supporting documentation, providing it electronically is currently not feasible,” the California Department of Health Care Services said in a statement.

The state’s Medicaid program, known as Medi-Cal, has struggled with technology for years. The state thought it had a solution in 2010 when it awarded a $1.7 billion contract to Xerox, which included $168 million for a new system. But after years of delay, the state scrapped the contract in 2016 and started from scratch, leaving the patchwork system in place a few more years.

Nationwide, despite industry buzz about electronic medical records, smartphone apps and artificial intelligence, a lot of paper is still being pushed across the health care system. Consider all those forms patients repeatedly fill out in the waiting room, the screeching sound of fax machines inside doctors’ offices and the bulging binders of patients’ records in file rooms.

Under Medicaid, states submit data quarterly to the federal government on their spending and include supporting documents such as invoices, cost reports and eligibility records. In California, reports on spending are shared electronically, but the copious supporting documentation required for federal review is not, according to the GAO.

When the Xerox venture failed, the company agreed to pay California more than $123 million as part of a settlement agreement, according to state officials.

Meantime, Conduent, the services unit of Xerox that was spun off into a separate company, was left to keep operating the system and process claims.

Last month, the state awarded a contract to DXC Technology of Tysons, Va., to take over some operations from Conduent. The state said the contract could be worth $698 million over 10 years.

Separately, California’s Medicaid officials are working on plans for a new system that would cost an estimated $500 million. Under the federal-state partnership on Medicaid, the federal government would cover 90 percent of those costs for design and implementation, and the state’s share would be about $50 million.

Pressure has been mounting on California to fix the situation. The Medicaid IT system “needs to be replaced, because it is more than 40 years old, its operations are inefficient, maintaining the system is difficult and there is a high risk of system failure,” state auditor Elaine Howle wrote in a June 26 letter to Gov. Jerry Brown and legislative leaders.

In her letter, Howle said the state was paying about $30 million annually to maintain the legacy system.

Overall, Medi-Cal serves 1 in 3 Californians. The annual Medicaid budget in California is about $104 billion, counting federal and state funds.

Beyond California, the GAO criticized the U.S. Centers for Medicare & Medicaid Services (CMS) more broadly. One complaint: Federal officials assign a similar number of staff to states for reviewing case files — even though some states, like California, pose a far bigger risk for enrollment errors and misspent money due to their size and complexity.

For instance, the report’s authors said, CMS reviewed claims for the same number of newly eligible Medicaid enrollees — 30 — in California as it did in Arkansas, even though California had 10 times the number of newly enrolled patients under the Affordable Care Act.

The report also said CMS devoted a similar number of staff to review both California, which represents 15 percent of federal Medicaid spending, and Arkansas, which accounts for 1 percent.

CMS “needs to step back and assess where are the biggest threats and vulnerabilities,” Yocom said. “If you aren’t looking, you don’t know what you aren’t catching.”

Overall, from fiscal years 2014 to 2018, federal Medicaid spending increased by about 31 percent, according to the GAO report. But the full-time staff at CMS dedicated to financial oversight declined by roughly 19 percent over the same period.

In a July 18 letter to the GAO, the U.S. Department of Health and Human Services agreed with the agency’s recommendations for improving oversight efforts.

HHS wrote that it “will complete a comprehensive national review to assess the risk of Medicaid expenditures reported by states and allocate resources based on risk.”


This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.

Paper Jam: California’s Medicaid Program Hits ‘Print’ When The Feds Need Info

In the shadow of Silicon Valley, the hub of the world’s digital revolution, California officials still submit their records to the feds justifying billions in Medicaid spending the old-fashioned way: on paper.

Stacks and stacks of it.

Stuck with decades-old technology, the nation’s largest Medicaid program forces federal officials to sift through thousands of documents by hand rather than sending electronic files. That’s one of the critical findings in a Sept. 5 report from the federal government’s chief watchdog citing inefficient and lax oversight of Medicaid nationwide.

To illustrate, the U.S. Government Accountability Office published a photo showing piles of records submitted for one three-month period. One folder was placed upright to show the height of the heap.

“It’s really amazing when you look at that picture,” said Carolyn Yocom, a health care director at the GAO who focuses on Medicaid, the federal-state health insurance program for low-income people. “For this type of reporting on expenditures, California really should be able to provide that electronically.”

California, with more than 13 million Medicaid enrollees, said it’s hamstrung because it uses 92 separate computer systems to run its Medicaid program — although it has plans underway to modernize its technology.

“Given system limitations and the magnitude of the supporting documentation, providing it electronically is currently not feasible,” the California Department of Health Care Services said in a statement.

The state’s Medicaid program, known as Medi-Cal, has struggled with technology for years. The state thought it had a solution in 2010 when it awarded a $1.7 billion contract to Xerox, which included $168 million for a new system. But after years of delay, the state scrapped the contract in 2016 and started from scratch, leaving the patchwork system in place a few more years.

Nationwide, despite industry buzz about electronic medical records, smartphone apps and artificial intelligence, a lot of paper is still being pushed across the health care system. Consider all those forms patients repeatedly fill out in the waiting room, the screeching sound of fax machines inside doctors’ offices and the bulging binders of patients’ records in file rooms.

Under Medicaid, states submit data quarterly to the federal government on their spending and include supporting documents such as invoices, cost reports and eligibility records. In California, reports on spending are shared electronically, but the copious supporting documentation required for federal review is not, according to the GAO.

When the Xerox venture failed, the company agreed to pay California more than $123 million as part of a settlement agreement, according to state officials.

Meantime, Conduent, the services unit of Xerox that was spun off into a separate company, was left to keep operating the system and process claims.

Last month, the state awarded a contract to DXC Technology of Tysons, Va., to take over some operations from Conduent. The state said the contract could be worth $698 million over 10 years.

Separately, California’s Medicaid officials are working on plans for a new system that would cost an estimated $500 million. Under the federal-state partnership on Medicaid, the federal government would cover 90 percent of those costs for design and implementation, and the state’s share would be about $50 million.

Pressure has been mounting on California to fix the situation. The Medicaid IT system “needs to be replaced, because it is more than 40 years old, its operations are inefficient, maintaining the system is difficult and there is a high risk of system failure,” state auditor Elaine Howle wrote in a June 26 letter to Gov. Jerry Brown and legislative leaders.

In her letter, Howle said the state was paying about $30 million annually to maintain the legacy system.

Overall, Medi-Cal serves 1 in 3 Californians. The annual Medicaid budget in California is about $104 billion, counting federal and state funds.

Beyond California, the GAO criticized the U.S. Centers for Medicare & Medicaid Services (CMS) more broadly. One complaint: Federal officials assign a similar number of staff to states for reviewing case files — even though some states, like California, pose a far bigger risk for enrollment errors and misspent money due to their size and complexity.

For instance, the report’s authors said, CMS reviewed claims for the same number of newly eligible Medicaid enrollees — 30 — in California as it did in Arkansas, even though California had 10 times the number of newly enrolled patients under the Affordable Care Act.

The report also said CMS devoted a similar number of staff to review both California, which represents 15 percent of federal Medicaid spending, and Arkansas, which accounts for 1 percent.

CMS “needs to step back and assess where are the biggest threats and vulnerabilities,” Yocom said. “If you aren’t looking, you don’t know what you aren’t catching.”

Overall, from fiscal years 2014 to 2018, federal Medicaid spending increased by about 31 percent, according to the GAO report. But the full-time staff at CMS dedicated to financial oversight declined by roughly 19 percent over the same period.

In a July 18 letter to the GAO, the U.S. Department of Health and Human Services agreed with the agency’s recommendations for improving oversight efforts.

HHS wrote that it “will complete a comprehensive national review to assess the risk of Medicaid expenditures reported by states and allocate resources based on risk.”


This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.

New Medicare Advantage Tool To Lower Drug Prices Puts Crimp In Patients’ Choices

Starting next year, Medicare Advantage plans will be able to add restrictions on expensive, injectable drugs administered by doctors to treat cancer, rheumatoid arthritis, macular degeneration and other serious diseases.

Under the new rules, these private Medicare insurance plans could require patients to try cheaper drugs first. If those are not effective, then the patients could receive the more expensive medication prescribed by their doctors.

Insurers use such “step therapy” to control drug costs in the employer-based insurance market as well as in Medicare’s stand-alone Part D prescription drug benefit, which generally covers medicine purchased at retail pharmacies or through the mail. The new option allows Advantage plans — an alternative to traditional, government-run Medicare — to extend that cost-control strategy to these physician-administered drugs.

In traditional Medicare, which covers 40 million older or disabled adults, those medications given by doctors are covered under Medicare Part B, which includes outpatient services, and step therapy is not allowed.

About 20 million people have private Medicare Advantage policies, which include coverage for Part D and Part B medications.

Some physicians and patient advocates are concerned that the pursuit of lower Part B drug prices could endanger very sick Medicare Advantage patients if they can’t be treated promptly with the medicine that was their doctor’s first choice.

Critics of the new policy, part of the administration’s efforts to fulfill President Donald Trump’s promise to cut drug prices, say it lacks some crucial details, including how to determine when a less expensive drug isn’t effective.

“Do you have to lose vision before you are allowed to use” medication approved by the Food and Drug Administration, asked Richard O’Neal, vice president for market access for Regeneron, which makes Eylea, a medicine that is injected into the eye to treat macular degeneration. In 2016, Medicare paid $2.2 billion for Eylea prescriptions for patients in traditional Medicare, more than any other Part B drug, according to government data.

Medicare Advantage insurers spend about $12 billion on Part B drugs, compared to the $25.7 billion traditional Medicare spent in 2016 on such drugs. Insurers that adopt the step therapy policy can apply it only to new prescriptions — medicine a patient hasn’t received in the past 108 days.

The change in policy gives insurers a new bargaining tool: Pharmaceutical makers may want to compete by cutting prices to get their product on the plans’ list of preferred lists, allowing patients to receive the medicines without step therapy pre-conditions. That “strengthens their negotiating position with the manufacturers,” Medicare chief Seema Verma said when she unveiled the policy last month.

It could also save patients money since they usually pay a portion of the Part B prescription cost. In addition, Medicare is requiring plans to share the savings with enrollees.

“Competition is a big factor in price concessions,” said Daniel Nam, executive director of federal programs at America’s Health Insurance Plans, an industry trade group. But insurers haven’t had much leverage to negotiate lower prices for these drugs without strategies like step therapy, he said.

Federal health officials told insurers in a memo last month that they could substitute a less expensive Part B drug to treat a medical condition the FDA has not approved it for, if insurers can document that it is safe and effective. Yet coverage for a Part D drug is usually denied for a condition that doesn’t have FDA approval, according to the Center for Medicare Advocacy, which helps beneficiaries with appeals.

Several representatives of medical specialty groups recently met with Alex Azar, the secretary of the Department of Health and Human Services, to express their concerns.

Dr. Stephen Grubbs, vice president of clinical affairs at the American Society of Clinical Oncology, was among them. He said Azar told then the new step therapy policy would not have a big impact on cancer treatment.

Patients and their physicians who encounter problems getting specific Part B drugs can appeal using the “process that we have throughout the Medicare Advantage program and Part D plans,” advised Verma.

Under this system, if patients don’t want to follow their insurance plans’ requirements to try a less expensive medication first, they can request an exception to step therapy.

“They need their doctor’s support,” said Francine Chuchanis, director of entitlement rights at Direction Home, an Area Agencies on Aging organization that serves older adults and people with disabilities in northeastern Ohio. The physician must tell the plan why its restrictions should be lifted and provide extensive documentation.

The plans have 24 hours to respond to an expedited exception request and 72 hours for a regular one. During this time, “people are going without their drugs,” said Sarah Jane Blake, a Medicare counselor for New York’s StateWide Senior Action Council.

However, Dr. David Daikh, president of the American College of Rheumatology, said plans frequently do not meet the 72-hour deadline.

“We raised this point with the secretary and his staff,” he said. “They replied that they felt that there would not be a backlog for this program.”

If a plan denies the exemption, patients can file a “reconsideration” appeal. During this process, patients still can’t get their medicine unless they pay for it out-of-pocket.

Only a tiny fraction of Medicare Advantage beneficiaries filed a reconsideration appeal last year. Of the 3,498 cases that were decided, just 1 in 10 beneficiaries won decisions fully or partially in their favor, according to Medicare statistics.

“That’s disheartening to say the least,” said Blake, but she wasn’t surprised. “Beneficiaries are intimidated by the hoops they have to go through and often give up trying to purchase the drugs prescribed for them.”


KHN’s coverage of these topics is supported by
Laura and John Arnold Foundation
and
John A. Hartford Foundation

Must-Reads Of The Week From Brianna Labuskes

If you’ve been glued to your preferred weather service (as I have) over the past few days watching Hurricane Florence lumber toward the East Coast, you may have missed that it was a fairly huge news week for health. So, let’s get right to it!

President Donald Trump shocked and angered both allies and critics with accusations that the latest death toll from Hurricane Maria was inflated by the Democrats to make him look bad.

Bloomberg: Trump Defies Science With Rejection of Puerto Rico Death Toll

4 Takeaways On Puerto Rico’s Death Toll, In The Wake Of Trump’s Tweet Storm


For the first time since 2010, the decline in the uninsured rate stalled. Some blame the Trump administration’s whacks at the health law, but others say it’s just the marketplace leveling off.

The Washington Post: For First Time Since 2010, America’s Progress on Health Insurance Stalls

The fact that Sen. Joe Manchin (D-W.Va.) is using health care while campaigning in a deep-red state that loves Trump shows just how far politics has evolved on the issue. (Even though he’s certainly not mentioning “Obamacare” by name.)

The New York Times: Manchin Counts on Health Care to Stave Off Republican Tide in West Virginia

But a look at tweets on the topic shows it doesn’t matter to Russian trolls which way that popularity pendulum swings — they recognize the health law as a plank sure to sow discord and pit sides against each other.

The Wall Street Journal: Nearly 600 Russia-Linked Accounts Tweeted About the Health Law


Baltimore health commissioner Dr. Leana Wen, an emergency room physician with a reputation for fiercely taking on the Trump administration, has been tapped as Planned Parenthood’s next president. Wen brings firsthand experience with the organization as a child of a low-income family.

The New York Times: Planned Parenthood Names Leana Wen, a Doctor, Its New President


More than 4,300 beneficiaries in Arkansas were kicked off the state’s Medicaid rolls after failing to report their required work hours. Republican Gov. Asa Hutchinson focused on the 1,000 or so residents who have found employment under the new regulations, but critics were quick to point to the number as confirmation of their worst fears that the new fervor for work requirements will lead to a lot of Americans losing insurance.

The Associated Press: Arkansas Drops 4,300 From Medicaid Plan Over New Work Rules


A letter alleging a sexual misconduct incident in Supreme Court nominee Brett Kavanaugh’s past, which Sen. Dianne Feinstein (D-Calif.) has turned over to the FBI, is adding fuel to an already fiery battle on the Hill.

A Sexual-Misconduct Allegation Against the Supreme Court Nominee Brett Kavanaugh Stirs Tension Among Democrats in Congress

Meanwhile, accusations of bribery are coming out of Maine, where advocates have guaranteed $1 million in fundraising pledges to Republican Sen. Susan Collins’ 2020 opponent if she votes to confirm Kavanaugh.

The Associated Press: $1 Million Pledged Against Collins If She Backs Kavanaugh


A pharma exec’s defense that raising drug prices 400 percent was a “moral requirement” raised more than a few eyebrows. It was a bold claim in an era where most companies are trying to at least appear concerned about the topic.

Financial Times: Pharma Chief Defends 400% Drug Price Rise As a ‘Moral Requirement’

Want to know how those pharmacy benefit managers (yup, the ones now getting lots of fingers pointed at them for the high cost of drugs) can pocket almost $200 for a bottle of pills that’s valued at $6? Check out Bloomberg’s explainer.


In the interest of making this “breezy,” here are some other big news stories from the week: Apple kills two birds with one stone with its new watch: convincing people they need to buy a low-selling product and edging into the health care industry; the number of immigrant teens being held by the government has ballooned; and lawmakers may perform what might be called, in this partisan landscape, a miracle and actually fund the government on time. (See, I was not exaggerating about the amount of news this week!)

Stat: The New Apple Watch, With FDA’s Blessing, Comes With an EKG App

The New York Times: Detention of Migrant Children Has Skyrocketed to Highest Levels Ever

Stat: Trump Wants Drug Prices in TV Ads. The Latest Roadblock? Republicans

Politico: Congress Dares Trump To Shut Down The Government In New Spending Deal


In a story that you can’t make up: A member of the family that owns Purdue Pharma (the maker of OxyContin and subject of more than 1,000 lawsuits regarding its role in the opioid epidemic) has been awarded a patent for a treatment for opioid use disorder.

Stat: Richard Sackler, Member of Clan Behind OxyContin, Has Patent for Opioid Treatment


If all of that wasn’t enough for you, here are a few must-read miscellaneous stories from the week: Nearly two decades after Kendra Webdale was pushed to her death in the subway, the law named in her honor designed to shore up mental health systems is acting more like a band-aid than a cure; advocates are shifting gears on gun safety by going after bullets, which are largely unregulated; recent transparency controversies have some asking: Why do medical journals still take authors at their word?; and a look at the people behind suicide hotlines.

The New York Times: A Horrific Crime on the Subway Led to Kendra’s Law. Years Later, Has It Helped?

The New York Times: California Tries New Tack on Gun Violence: Ammunition Control

Stat: Why Do Medical Journals Keep Taking Authors at Their Word?

CNN: When Someone Is Thinking of Suicide, These Are the People Who Talk Them Out of It


If you had a gloomy 2017, at least take heart in the fact that it wasn’t just you.

Please have a safe weekend if you’re in Florence’s path!

Cancer Doctor Resigns From Sloan Kettering Over Financial Disclosure Controversy

Dr. José Baselga’s resignation comes as top officials at Memorial Sloan Kettering struggle to contain the fallout from an investigation into Baselga’s financial ties to companies like the Swiss drugmaker Roche and several small biotech startups. Meanwhile, the controversy shines a light on the need for transparency when it comes to experts who contribute to medical journals.

Is ‘Precision Medicine’ The Answer To Cancer? Not Precisely.

Facing incurable breast cancer at age 55, MaryAnne DiCanto put her faith in “precision medicine” — in which doctors try to match patients with drugs that target the genetic mutations in their tumors. She underwent repeated biopsies to identify therapies that might help.

“She believed in it wholeheartedly,” said her husband, Scott Primiano of Amityville, N.Y., a flood-insurance broker. “You live on hope for so long, it’s hard to let go.”

Around this point in the average news story, readers would learn how DiCanto — mother to a blended family of five — took a chance on an experimental drug that no one expected to work.

She would be the scrappy protagonist whose determination to “keep fighting” enabled her to beat the odds — allowing us to celebrate the triumph of modern science and worry a bit less about our own mortality.

But there’s a serious problem with talking about precision medicine for cancer this way.

It misleads the public.

In spite of DiCanto’s high hopes, none of it helped. DiCanto died last year at age 59.

Doctors and hospitals love to talk about the patients they’ve saved with precision medicine, and reporters love to write about them. But the people who die — patients like DiCanto, who succumb to advanced cancer despite the advanced testing — still vastly outnumber the rare successes.

“There are very few instances in which we can look at a genomic test and pick a drug off the shelf and say, ‘That will work,’” said Dr. Nikhil Wagle, a cancer specialist at Boston’s Dana-Farber Cancer Institute who helped develop precision-medicine tests. “That’s our goal in the long run, but in 2018 we’re not there yet.”

Reflecting on his family’s experience with “precision” treatment, Primiano said, “You think it’s going to be more precise, like a laser versus a shotgun. But it’s still a shotgun.”

There has been real progress, of course.

MaryAnne DiCanto(Courtesy of Scott Primiano)

Testing for genetic mutations has become the standard of care in lung cancer, melanoma and a handful of other tumor types. But the number of people with advanced cancer eligible for these approaches is just 9 percent to 15 percent, experts estimate. These targeted therapies help about half of patients who try them, said Dr. Vinay Prasad, an associate professor at Oregon Health and Science University.

Targeted therapies tend to be less successful in patients like DiCanto, who have exhausted all standard treatments. In a large study published last year in Cancer Discovery, precision medicine failed to help 93 percent of the 1,000 patients who signed up for the study.

At the most recent meeting of the American Society of Clinical Oncology — the largest cancer meeting in the world — researchers presented four precision-medicine studies. Two were total failures. The other two weren’t much better, failing to shrink tumors 92 percent and 95 percent of the time.

The studies received almost no news coverage.

Some experts, including Dr. David Hyman of New York’s Memorial Sloan Kettering Cancer Center, say that such testing should be available to everyone with advanced cancer, because no one can predict which individual might have a rare mutation that can be targeted with a new or experimental drug. When patients respond to these drugs, they tend to do very well, and some survive much longer than expected.

But Hyman acknowledged that many people who pursue precision medicine will be disappointed, because testing won’t lead to a new treatment. Precision medicine “is not addressing the needs of the majority of cancer patients,” he said.

Many of the doctors I interview as a health care reporter are uncomfortable talking about patients who don’t survive.

While acknowledging that not all patients are helped by tumor sequencing, they quickly pivot to talking about people they’ve saved. They rush past the disappointing present and fast-forward to a future in which every patient gets the treatment she or he needs. If you don’t listen carefully, you could easily be led to believe those future cures are already here.

There are very few instances in which we can look at a genomic test and pick a drug off the shelf and say, ‘That will work.’

Dr. Nikhil Wagle, cancer specialist at Boston’s Dana-Farber Cancer Institute

Hospitals promote their precision-medicine programs by showcasing the stories of long-term survivors. Companies such as Foundation Medicine, Caris Life Sciences and Guardant Health — which sell the tests that look for cancer mutations — highlight only the best-case scenarios on their websites. In drug company marketing, patients are cheerleaders for the latest treatment fad.

Against this backdrop of hope and desperation, how are patients supposed to make informed decisions?

DiCanto gave precision medicine everything she had, including biopsies from her lungs and liver, where her cancer had spread. Over 2½ years, her doctor sent seven blood and tissue samples to specialized labs for “next-generation sequencing,” which can quickly scan hundreds of genes. The tests aim to locate a cancer’s Achilles’ heel — a genetic vulnerability that can be targeted with a drug.

MaryAnne DiCanto preps for a biopsy. Doctors took samples of cancer cells from her lung, liver and blood.(Courtesy of Scott Primiano)

DiCanto’s first genomic test matched her to a newly approved drug she would have tried anyway, Primiano said. When it stopped working, she had another biopsy.

That time, tests matched her to a different drug approved for breast cancer. But it proved so toxic that it “nearly killed her,” Primiano said.

Additional tests matched DiCanto to drugs available only in clinical trials. Eligibility criteria for clinical trials are notoriously strict, however, and often exclude people who’ve been heavily treated with other medications. DiCanto wasn’t eligible for any of them. Even when patients are eligible for trials, many turn them down. They’re just too frail and sick to travel to the metropolitan areas where most trials are run.

Although DiCanto benefited from standard cancer treatments, none of the targeted therapies recommended through genetic testing extended her life, Primiano said.

“She didn’t give up,” Primiano said. “Her body gave up. Her body just couldn’t take it anymore.”

Primiano said patients should remember that precision medicine is in its infancy. Although scientists have identified tens of thousands of genetic “variations” — changes from normal DNA that could play a role in cancer — doctors have only a few dozen drugs with which to target them. In the majority of cases, genetic mutations are of “unknown significance”; they’re essentially useless, because scientists don’t know if they affect how patients respond to drugs.

Even when drugs are a good match for a specific mutation, they don’t always work. A targeted therapy that works in melanoma, for example, doesn’t help people with colorectal cancer — even when patients have the exact same mutation, said Wagle, a member of the medical advisory board for Living Beyond Breast Cancer, a patient advocacy group in which DiCanto was active.

MaryAnne DiCanto and her husband, Scott Primiano, spoke with Democratic presidential candidate Hillary Clinton about health care costs during the 2016 campaign. Primiano says Clinton stayed in contact with DiCanto throughout her treatment and called on the day she died to thank her.(Courtesy of Scott Primiano)

Paying for tests and treatment poses its own hurdles. Insurers often tell patients that next-generation sequencing is unproven. Even when insurers agree to cover the testing, they won’t necessarily cover nonstandard or experimental treatments that sequencing companies recommend.

Primiano, a insurance broker, said his family was able to handle the costs: $500,000 out-of-pocket on his wife’s cancer care over 13 years. But managing his wife’s cancer “was a full-time job — doing the research, finding the clinical trials, dealing with the insurance companies, managing the money.”

He worries about people with fewer resources, especially patients tempted to drain their savings account to pay for a treatment with little to no chance of working.

The very words “precision medicine” suggest a high rate of success, Primiano said. While its successes should be celebrated, its failures must be acknowledged and tallied, reminding us how much is left to learn. When patients and their families have so much on the line, they deserve to understand what they’re paying for.

“Let’s not pretend this is something it isn’t,” Primiano said. “I’m not saying we shouldn’t try it. I just don’t want people to have false hope.”


KHN’s coverage of these topics is supported by
John A. Hartford Foundation
and
Gordon and Betty Moore Foundation