Congress is working on legislation to shield American patients from steep medical bills. But that’s only one piece of the puzzle for cancer patients and their families, who face financial burdens far beyond just the costs of care.
Cancer patients may have to quit their job while undergoing treatment. They may have to travel out of state to see specialists. They may have to follow a special, more expensive diet. The burdens can be augmented for parents of children with cancer, placing huge stress on the entire family.
That’s why Grammy-winning band Imagine Dragons has created a foundation specifically to provide nonmedical assistance to families dealing with a pediatric cancer diagnosis. The purpose of the Tyler Robinson Foundation — which members of the band described during a Post Live interview yesterday — is to provide such families with extra dollars to support their well-being in a variety of ways while grappling with cancer.
These families might use the funds to buy Christmas presents they couldn’t otherwise afford. Or they might put them toward a special vacation or defray extra costs for transportation or lodging.
“Pediatric cancer is not a diagnosis for one child. It hits the entire family,” Daniel Platzman, the band’s drummer, said at The Post’s “Chasing Cancer” event.
“A lot of times one of the parents will have to quit their job in order to be a full-time caregiver,” added bassist Ben McKee.
“A lot of times, these families have four or five kids and one of their kids has a diagnosis,” he said. “All of a sudden, every extra dollar they have is sucked up in trying to pay for these medical procedures, so life is harder for this family all around.”
As we noted recently, medical-related debt remains the leading cause of bankruptcy in the United States. Medical expenses are a contributing factor in two-thirds of individual bankruptcy filings. In a 2016 Kaiser Family Foundation poll, more than a quarter of U.S. adults ages 18 to 64 said they or someone in their household had problems paying medical bills in the past year.
When it comes to cancer, which often requires months of chemotherapy or radiation, the indirect costs are even greater than the direct costs of the care. Indirect costs such as lost income account for 70 percent to 85 percent of the total costs for these patients, studies have found.
In a 2008 study of 28 families with a child diagnosed with cancer, nearly nine in 10 of the mothers cut back on their work hours or quit altogether because of the diagnosis. The families also reported severe financial losses resulting from traveling for treatment and follow-up care, out-of-pocket expenses for treatment and an inability to get help from financial assistance programs.
Imagine Dragons took up the cause of pediatric cancer after the bandmates befriended a young fan, Tyler Robinson, who was fighting a rare form of cancer that affects muscles and other connective tissues in the body. After hearing Tyler’s story from his brother, the band played their hit “It’s Time” for Tyler at a concert, in a performance they described as the most powerful moment of their career.
“When we played that show that night, his brother held him up on his shoulders,” said the band’s lead singer, Dan Reynolds. “The most impactful moment of our 10-year career. I can’t really explain to you the magic that was in that room.”
A video from that night:
After Tyler died in 2013, the band decided to start a foundation in his honor. Reynolds said the idea was born the night after Tyler's death.
“I called his brother, and we talked on the phone and said what can we do to help Tyler’s impact and legacy live on,” Dan said.
The Tyler Robinson Foundation has since raised nearly $10 million for grants to families to help them with housing, energy and utility expenses, treatment travel costs, and funeral and burial expenses. The band members said the foundation especially tries to help families just above the poverty line, who may not be eligible for public assistance programs.
Lead guitarist Wayne Sermon said it was a “no-brainer” to get behind the cause of helping kids with cancer.
“Not only did you get the worst news of your entire life, also, you might go bankrupt,” he said. “To battle those two fronts at the same time — it takes only a slight bit of empathy for that to be a cause you can get behind.”
—I also spoke with YouTube host “Dr. Mike” Varshavski and Fred Hutchinson Cancer Research Center's Dr. Anne McTiernan about how lifestyle factors like diet, exercise and sleep can increase or decrease your chances of getting cancer. A clip from thata conversation:
AHH, OOF and OUCH
AHH: A judge has summoned drug company executives, state attorneys general and the lawyers representing 2,600 cities and counties to meet today to discuss a possible settlement in the landmark litigation over who should be held responsible for the opioid epidemic.
U.S. District Judge Dan Aaron Polster summoned everyone to his courtroom, a sign that negotiations “are progressing to a potential settlement that could avert a two-month trial,” our Post colleagues Lenny Bernstein, Scott Higham, Sari Horwitz and Aaron C. Davis report. “That proceeding seeks billions of dollars from six drug companies to pay for the fallout of the worst drug crisis in U.S. history.”
The parties will discuss a $50 billion deal involving cash and drug treatment medications. If a deal succeeds, it could mean an expedited flurry of funding for cities and counties to pay for drug treatment, emergency services and law enforcement needed to deal with the crisis. It would also mean drug companies would end the thousands of lawsuits costing them million in legal fees and bad publicity. Just how much of the settlement money will go to private lawyer fees is another sticking point.
OOF: A new report estimates that the opioid epidemic at the center of that landmark litigation has cost the U.S. economy at least $631 billion.
A study from the Society of Actuaries out this week found the biggest costs associated with the opioid crisis were losses from unrealized earnings for people who have died because of addictive painkillers and from costs related to health-care expenditures.
“According to the actuaries’ analysis, nearly one-third — $205 billion — of the estimated economic burden was pinned to excess health care spending for people with opioid-related disorders. Premature mortality costs accounted for 40 percent — $253 billion — of estimated losses, mainly due to lost lifetime earnings for people who died of overdoses,” our Post colleague Rachel Siegel reports. “The remaining economic losses were linked to costs associated with the criminal justice system, child and family assistance programs and lost productivity, including absenteeism, lower workforce participation rates and incarceration for drug-related crimes.”
OUCH: Juul Labs announced it will suspend four of its flavored products amid growing scrutiny around a surge of youth vaping.
The flavors — mango, crème, fruit and cucumber — have been available through Juul’s website since late last year. Three other flavors — mint, menthol and tobacco — will still be for sale online and in retail stores, though Juul is considering halting sales of mint and menthol, our Post colleague Laurie McGinley reports.
The suspension comes as health officials have been worried not just about the rise in use of e-cigarette and vaping products by young people but the growing number of cases of a mysterious vaping-related lung illness across the country.
“The action comes ahead of an expected Trump administration ban on most flavored cigarettes,” Laurie writes. “Last month, President Trump announced the Food and Drug Administration would ban all flavored e-cigarettes — except tobacco-flavored ones — in an effort to stem the increase in youth vaping.”
— The Centers for Disease Control and Prevention said the number of deaths linked to vaping nationwide is up to 33. And there are 1,479 lung injuries associated with e-cigarette use, according to the agency, up from at least 1,299 cases and 26 deaths last week.
Cases have been reported in every state except Alaska, as well as one U.S. territory and the District of Columbia.
“The numbers that have risen rapidly since the first death was reported in August have helped fuel a crackdown on battery-powered devices that simulate smoking,” our Post colleague Hannah Knowles reports. “… Announcing the latest increase in illnesses, the CDC reiterated its conclusion that products containing THC, the psychoactive component of marijuana, are a main culprit and should be avoided. About 78 percent of patients say they used vaping products containing THC, according to the CDC, and nearly a third of patients reported only using THC products. Ten percent said they only vaped nicotine, although doctors caution that people may be reluctant to admit to using marijuana.”
HEALTH ON THE HILL
House Speaker Nancy Pelosi remembers and pays tribute to Rep. Elijah Cummings. The longtime Maryland Democrat has died at age 68 following "complications concerning longstanding health challenges," his office announced early this morning. https://t.co/SPYNRaXtRO pic.twitter.com/eNauDKMLFn— CNN (@CNN) October 17, 2019
— House Speaker Nancy Pelosi (D-Calif.) said Democrats plan to name their key bill to bring down prescription drugs after Rep. Elijah Cummings (D-Md.), who died early Thursday.
Cummings, the chair of the House Oversight and Reform Committee, was a longtime champion for lower drug costs.
“It was Cummings who most famously called to account Martin Shkreli, the hedge fund manager of ‘pharma bro’ fame, after his pharmaceutical company acquired the rights to a 6o-year-old antiparasitic medication and raised its price from $13.50 to $750,” Stat’s Lev Facher reports. “… More recently, in one of his first actions as Oversight Committee chairman, Cummings launched a sweeping investigation into the price of prescription drugs. The probe, which remains ongoing, sought information from 12 drug companies, seeking 10 years of data ranging from total revenues to patent practices to executive and employee compensation. It is unclear what Cummings’ death means for the investigation, or which Democratic lawmaker will chair the committee in his place.”
— The insurer trade group America’s Health Insurance Plans sent a letter to congressional leaders urging them to continue tackling high health-care costs in the final weeks of this year’s legislative period.
“We urge you to enact bipartisan legislation in three critical policy areas: (1) surprise medical bills; (2) prescription drug prices and costs; and (3) health care taxes that undermine affordability and access,” reads the letter from Matt Eyles, the group's president and chief executive, to Pelosi, House Minority Leader Kevin McCarthy (R-Calif.), Senate Majority Leader Mitch McConnell (R-Ky.) and Senate Minority Leader Chuck Schumer (D-N.Y.). “AHIP and its member health insurance providers stand ready to help you enact policies to improve health care affordability for every American.”
— The National Association of Manufacturers launched a six-figure print and digital advertising campaign calling on lawmakers to oppose drug pricing measures with "price controls."
“Want to lower drug costs?” the ad asks. “Some in Washington wrongly think price controls are the solution. Price controls are a hidden tax on manufacturers that harm innovation, competitiveness and R&D investments in new cures.”
The association also sent to the House Ways and Means and Education and Labor committees calling on the members to oppose Pelosi’s drug pricing bill, which will enable Medicare to negotiate directly with drug companies.
“While well-intentioned, an orientation towards price controls would abandon a market-based core principle of the Medicare Part D program and act as a hidden tax on both manufacturers and innovation,” NAM’s vice president wrote in the letter.
— The Food and Drug Administration announced this week that the agency approved a record 1,171 generic drugs in 2019, following a record number of approvals in the last two years.
“Three record-setting years of generic drug approvals by the FDA are playing a major role in delivering lower prices and more access to prescription drugs, as evidenced by a historic drop in the Consumer Price Index for prescription drugs,” HHS Secretary Alex Azar said in a statement. “… Lower drug prices are an important part of delivering American patients the affordability they need and, ultimately, promoting better health.”
In a statement, acting FDA commissioner Ned Sharpless said the generic approvals included an emergency opioid overdose treatment as well as medications to treat pulmonary arterial hypertension, breast cancer, seizures and depression.
— And here are a few more good reads:
- The House Veterans' Affairs Subcommittee on Economic Opportunity holds a hearing on benefits for all servicemembers on Oct. 23.
- The House Energy and Commerce Subcommittee on Oversight and Investigations holds a hearing on “The Trump Administration’s Attack on Health Care” on Oct. 23.
Watch a few of Rep. Elijah E. Cummings's most powerful moments: