A proposal to sharply cut a drug discount program that many hospitals rely on drew some 1,400 comments when the Trump administration announced its plan last year. Hundreds appeared to come from patients across the country — pleas from average Americans whose treatments for diseases such as cancer depend on costly medicines.
But a review of the responses found that some individuals were not aware they apparently had become part of an organized campaign to oppose what's known as the "340B" program. Some had no memory of signing anything, much less sending their opinions about it.
Of the 1,406 comments that specifically mentioned 340B — part of several thousand comments submitted on a broad proposal to revise medical payment systems — about half included the same or similar wording and were submitted anonymously, an analysis by Kaiser Health News found. Those comments lamented "abuse" of the drug discounts, faulted hospitals for being "greedy" and used phrasing such as "quality, affordable, and accessible."
Two that were duplicated hundreds of times made the very same grammatical mistake.
They "are clearly related," said Robert Leonard, a forensic linguistic expert at Hofstra University whose team analyzed the submissions for KHN.
In fact, the wording in the duplicate comments tracks language in a formal letter submitted to regulators by a nonprofit trade group, the Community Oncology Alliance, which receives funding from pharmaceutical companies.
Cancer survivor Janice Choiniere's name is on a public comment saying reform of the 340B program will help "those suffering from this insidious disease." But when reached by phone, the 69-year-old Florida resident said she had "no idea" what the program is and didn't recall signing a petition.
"My first thought is, I don't fill out and send in responses casually," Choiniere said. "I'm hoping nobody lifted my information."
The quarter-century-old federal program requires pharmaceutical companies to sell certain drugs at steep discounts to eligible hospitals and clinics, which don't have to share their savings with patients. Critics, including Republican lawmakers, have questioned what the facilities do with the money. Doctors in private practice, who are not eligible for the reduced rates, have warned that the program's continued growth makes it susceptible to exploitation.
The administration's plan, finalized in November, reduced by $1.6 billion annually what the Centers for Medicare & Medicaid Services pays for the targeted drugs. In late July, the agency proposed expanding those payment cuts.
As with any proposed rule, the purpose of requesting public comments is to help lawmakers and regulators consider the potential effects of their actions. But the pattern identified in the 340B comments, which were posted online by CMS, suggests the system can easily be manipulated. Patients may be especially vulnerable to being used.
"It feels like inappropriate influence," said Peter Ubel, a physician and behavioral scientist at Duke University's Fuqua School of Business. "When you have a life-threatening illness, you need to know you can trust your physician to care about your interests ahead of their own."
KHN reached 10 individuals whose names appeared in the comments — either as a signature on a personal note or on a petition also signed by others. All were patients, former patients or caregivers seen at private practices connected to the Community Oncology Alliance.
Two patients confirmed they had written notes, although they couldn't say when. Several said they must have signed or written something amid the paperwork handed to them at a doctor's office during appointments or in follow-up correspondence. A few drew mental blanks.
The name of an 84-year-old melanoma patient shows as an online signature in an individual public comment that described the program's reform as a matter of "life or death." But the Florida man, who asked not to be identified, had little recollection of writing it. His wife remembered that he signed something at his doctor's office "out front on a clipboard" before getting his biweekly cancer treatment.
"If my doctor wanted me to sign something, I would sign it for him," the man said. He "saved my life."
Julie Yarbrough, whose husband received treatment at New England Cancer Specialists in Maine, remembered signing a petition "at the [doctor's] check-in area" about hospitals abusing 340B discounts. She was the only individual contacted who had a basic understanding of the program.
The patients reached by KHN sought care at either New England Cancer Specialists, which has three locations in Maine, or Florida Cancer Specialists, which runs nearly 100 treatment centers in that state. Data posted on the federal website regulations.gov show that more than 60 percent of the 340B-specific comments originated in Florida.
"We do a good job of educating patients and letting them know how to get involved," said Michael Diaz, director of patient advocacy for Florida Cancer Specialists and vice president on the Community Oncology Alliance's executive committee. "They need to be able to contribute and give their opinion."
Steve D'Amato, executive director of New England Cancer Specialists and an Alliance board member, mentioned patients' support in a letter accompanying a petition posted multiple times to the government portal Oct. 10. The petition included the trade group's website; D'Amato noted that "patient signatures obtained in just 2 days" were attached.
When asked recently about patients who didn't recall signing something, D'Amato said he did not have the petition in front of him and referred all questions to the Alliance's executive director, Ted Okon. In an interview, Okon denied that the organization had any role in soliciting patient comments.
"We didn't do anything with patient petitions," said Okon, although talking points and material were sent to practices nationwide for them to use when submitting comments. "This is what we do in terms of advocating."
Susannah Rose, scientific director of research in the Cleveland Clinic's patient experience office, said there is "always a worry about coercion" when doctors make a request of patients, but more so when oncologists do the asking.
"Cancer patients often feel very much in the hands of their oncologists, and they are often suffering from significant distress," said Rose, who serves on the ethics committee of the American Society of Clinical Oncology.
The Washington-based Alliance represents private oncology practices as well as about 50 corporate members, according to its website. Formed in 2003 when Congress approved Medicare's prescription drug program, it was a leading critic of a controversial 2016 proposal to change how CMS paid for some drugs in Medicare. The group's revenue nearly quadrupled that year, to $16.3 million from $4.4 million in 2015, according to federal tax filings. The proposal never became reality.
Pharmaceutical giants Sanofi, Pfizer, Eli Lilly, Bristol-Myers Squibb and Merck each confirmed paying annual dues of $75,000 to the Alliance. The five companies also paid it nearly $1 million between 2014 and 2017 for research papers, conferences, filming and patient education, according to corporate transparency reports.
Walgreens and PhRMA, the pharmaceutical industry trade group, also confirmed membership but did not disclose how much they pay in dues. Okon said corporate membership fees range from $25,000 to $75,000 annually while individual oncologists and their practices pay "usually on the order of a thousand dollars, two thousand dollars."
Drug manufacturers do not influence the Alliance's position on 340B, he said, noting in an email that "correlation is not causality."
After the comment period ended, CMS slashed 340B payments to hospitals by $1.6 billion annually. Medicare had been paying hospitals 6 percent above a drug's average sales price; it now pays them 22.5 percent less than the average sales price.
CMS Administrator Seema Verma and Eric Hargan, deputy secretary of the Health and Human Services Department, emphasized that public comments played into their decision. In the 1,133-page final rule, they said they shared the concern that current Medicare payments "are well in excess of the overhead and acquisition costs" for drugs bought under the program.
"We thank the commenters for their support," they wrote.
While states increasingly pass laws to protect patients from balance bills as more hospitals and doctors go after patients to collect, the federal ERISA law does not prohibit balance billing.
When Drew Calver had a heart attack last year, his health plan paid nearly $56,000 for the 44-year-old's four-day emergency hospital stay at St. David's Medical Center in Austin, Texas, a hospital that was not in his insurance network. But the hospital charged Calver another $109,000. That sum — a so-called balance bill — was the difference between what the hospital and his insurer thought his care was worth.
Though in-network hospitals must accept pre-contracted rates from health plans, out-of-network hospitals can try to bill as they like.
Calver's bill eventually was reduced to $332 after Kaiser Health News and NPR published a story about it last month. Yet his experience shines a light on an unintended consequence of a wide-ranging federal law, which potentially blindsides millions of consumers.
The federal law — called ERISA, for the Employee Retirement Income Security Act of 1974 — regulates company and union health plans that are "self-funded," like Calver's. That means they pay claims out of their own funds, even though they may be administered by a major insurer such as Cigna or Aetna. And while states increasingly pass laws to protect patients from balance bills as more hospitals and doctors go after patients to collect, ERISA law does not prohibit balance billing.
Although Texas is one of nearly two dozen states that provide consumers with some degree of protection against surprise balance bills, those state laws don't apply to self-funded plans.
It's a fairly common problem. About 60 percent of workers who get coverage through their job have self-insured plans, and 18 percent of people with coverage through a large employer who were admitted to the hospital in 2016 received at least one bill from an out-of-network provider, according to an analysis by the Kaiser Family Foundation. (Kaiser Health News is an editorially independent program of the foundation.)
Health researchers and advocates have identified a number of potential solutions that could tackle the problem at the federal or state level. The courts are another option. Yet whether these efforts are politically feasible when health care is in play as a partisan football is another matter.
Polarized views on appropriate reimbursement levels for medical services "limit stakeholders at both the federal and state level from making progress," said Kevin Lucia, a research professor at Georgetown's Center on Health Insurance Reforms, who has analyzed state laws that restrict balance billing.
A look at options that experts say might address the problem:
Change Federal Law
The simplest way to stop surprise bills would be through restrictions imposed by federal legislation that would apply to both state-regulated policies sold by insurers and employer-sponsored self-funded health plans, which are federally regulated.
There's a precedent for this. The Affordable Care Act added provisions that apply to both types of plans. That law requires plans that cover dependents to allow children to stay on their parents' plans until they turn 26, for example, and cover preventive benefits without charging patients anything out-of-pocket.
New legislation could plug a big loophole in the ACA. The health law offered some consumer protections for out-of-network emergency care, one of the biggest trouble spots for balance billing. Not only do people sometimes wind up at out-of-network hospitals when they have an emergency, but even if they visit an in-network hospital, the emergency physicians, specialists and other providers such as pathologists and labs may not be in their health plan's network.
The ACA limited a patient's cost sharing for emergency services to what they would face if they were at an in-network facility. It also established standards for how much health plans have to pay the hospital or doctors for that care.
But the law didn't prohibit out-of-network emergency doctors, hospitals and other providers, such as ambulance services, from balance billing consumers for the amounts their health plan didn't pay.
Federal legislation could close that loophole by prohibiting balance billing for emergency services, as well as hospital admissions related to that emergency care.
Analysts at the University of Southern California-Brookings Schaeffer Initiative for Health Policy, who have suggested such a remedy, say the federal law could apply to any doctors and hospitals that participate in the Medicare program, as most do, to ensure that the effect would be widespread.
They also propose prohibiting balance billing in non-emergency situations when someone visits an in-network facility but receives care from out-of-network doctors or is referred for outpatient lab or diagnostic imaging that is outside of the person's health plan network.
Still, the deep political scars left by the health law battles would seem to preclude any bipartisan efforts in Washington to change it.
"I'd love to see any kind of federal action," said Loren Adler, associate director at the USC center, who co-authored the proposal. "It's just hard to be super optimistic about anything happening in the near future."
Revise Federal Regulations
The federal executive branch could also weigh in on fixing the problem for self-insured coverage. The Department of Labor could, for example, issue a ruling that clarifies that states can regulate provider payment, or require self-funded plans to participate in state dispute-resolution programs.
But experts say relying on regulatory changes to fix surprise bills may also be a nonstarter in this political climate.
"I don't foresee the administration taking a hard look at the limits of its powers under the ACA," said Sara Rosenbaum, professor of health law and policy at George Washington University.
Look To The States
More than 20 states have laws protecting consumers to some degree from surprise bills from out-of-network emergency providers or in-network hospitals if they're covered by a state-regulated insurance policy, according to an analysis by Georgetown researchers published by the Commonwealth Fund.
State laws vary. Texas, for example, requires that consumers in HMO plans be held harmless from balance billing in out-of-network emergency and in-network situations, but consumers in PPO plans can be balance-billed.
New York's law is more comprehensive, covering both types of plans and settings. New York protects consumers from liability for out-of-network emergency and other surprise bills, requires plans to disclose how they determine a reasonable provider payment and has a binding independent dispute-resolution process.
These laws typically don't apply to self-funded plans, however. But that could change. A New Jersey law that went into effect last month allows self-funded plans to opt in to the state's balance billing dispute-resolution process. If a federally regulated plan decides to participate in the state program, doctors, hospitals and labs would be prohibited from balance-billing those consumers, and any disputes will be handled through a binding arbitration process.
For self-funded employers, especially those who choose to pay their employees' surprise bills, "this provides for a more formal structure and some relief," said Wardell Sanders, president of the New Jersey Association of Health Plans.
There are other possibilities for addressing surprise bills at the state level, policy experts say. While states can't regulate self-funded health plans, they do regulate doctors and hospitals and other providers.
States could simply cap the amount that providers can charge for out-of-network care, for example, or prohibit practitioners like radiologists and pathologists, who don't deal directly with patients, from billing them for services, said Adler.
"As long as providers can charge whatever they please, the problem won't go away," said Adler.
Will The Courts Weigh In?
These billing disputes rarely end up in court, mainly because attorneys are hesitant to take them since there are no guaranteed attorney's fees.
A recent Colorado case was a rare success for a patient. A jury in June sided with Lisa French, a clerk at a trucking company, who was stunned by a $229,000 balance bill for spinal fusion surgery. Saying the charges were unreasonable, the jury knocked down her share of that bill to just $766.74.
The hospital was paid nearly $75,000 by her health coverage, an amount her insurer felt built in a fair profit margin, but the hospital claimed fell short.
That raises the question at the heart of many disputes over balance billing: What is a fair price?
Hospitals argue they should get whatever amount they set as charges on their master list of prices. Attorneys for patients, however, argue that a fair price should be closer to those discounted rates hospitals accept in their contracts with insurers.
Hospitals generally refuse to disclose those discounted rates, leaving patients fighting surprise bills little information about what other people pay.
Several recent court cases — including state Supreme Court rulings in Georgia and Texas — required hospitals to provide those discounted rates, although the rulings did not say those discounted prices are ultimately what patients would owe.
Thousands of cases across the country allege that enfeebled nursing home patients endured hospital treatments for sepsis that many of the lawsuits claim never should have happened.
Shana Dorsey first caught sight of the purplish wound on her father's lower back as he lay in a suburban Chicago hospital bed a few weeks before his death.
Her father, Willie Jackson, had grimaced as nursing aides turned his frail body, exposing the deep skin ulcer, also known as a pressure sore or bedsore.
"That was truly the first time I saw how much pain my dad was in," Dorsey said.
The staff at Lakeview Rehabilitation and Nursing Center, she said, never told her the seriousness of the pressure sore, which led to sepsis, a severe infection that can quickly turn deadly if not cared for properly. While a resident of Lakeview and another area nursing home, Jackson required several trips to hospitals for intravenous antibiotics and other sepsis care, including painful surgeries to cut away dead skin around the wound, court records show.
Dorsey is suing the nursing center for negligence and wrongful death in caring for her dad, who died at age 85 in March 2014. Citing medical privacy laws, Lakeview administrator Nichole Lockett declined to comment on Jackson's care. In a court filing, the nursing home denied wrongdoing.
The case, pending in Cook County Circuit Court, is one of thousands across the country that allege enfeebled nursing home patients endured stressful, sometimes painful, hospital treatments for sepsis that many of the lawsuits claim never should have happened.
My father was like my best friend. Most people go to their mom to talk and tell all their secrets, and for me it was my dad.
Shana Dorsey
Year after year, nursing homes around the country have failed to prevent bedsores and other infections that can lead to sepsis, an investigation by Kaiser Health News and the Chicago Tribune has found.
No one tracks sepsis cases closely enough to know how many times these infections turn fatal.
However, a federal report has found that care related to sepsis was the most common reason given for transfers of nursing home residents to hospitals and noted that such cases ended in death "much more often" than hospitalizations for other conditions.
A special analysis conducted for KHN by Definitive Healthcare, a private health care data firm, also suggests that the toll — human and financial — from such cases is huge.
Examining data related to nursing home residents who were transferred to hospitals and later died, the firm found that 25,000 a year suffered from sepsis, among other conditions. Their treatment costs Medicare more than $2 billion annually, according to Medicare billings from 2012 through 2016 analyzed by Definitive Healthcare.
In Illinois, about 6,000 nursing home residents a year who were hospitalized had sepsis, and 1 in 5 didn't survive, according to Definitive's analysis.
"This is an enormous public health problem for the United States," said Dr. Steven Simpson, a professor of medicine at the University of Kansas and a sepsis expert. "People don't go to a nursing home so they can get sepsis and die. That is what is happening a lot."
The costs of all that treatment are enormous. Court records show that Willie Jackson's hospital stays toward the end of his life cost Medicare more than $414,000. Medicare pays Illinois hospitals more than $100 million a year for treatment of nursing home residents for sepsis, mostly from Chicago-area facilities, according to the Medicare claims analysis.
Sepsis is a bloodstream infection that can develop in bedridden patients with pneumonia, urinary tract infections and other conditions, such as pressure sores. Mindful of the dangers, patient safety groups consider late-stage pressure sores to be a "never" event because they largely can be prevented by turning immobile people every two hours and by taking other precautions. Federal regulations also require nursing homes to adopt strict infection-control standards to minimize harm.
Yet the failures that can produce sepsis persist and are widespread in America's nursing homes, according to data on state inspections kept by the federal Centers for Medicare & Medicaid Services. Many of the lawsuits allege that bedsores and other common infections have caused serious harm or death. The outcome of these cases is not clear, because most are settled and the terms kept confidential.
Cook County, where the private legal community is known to take an aggressive approach to nursing homes, has more of these suits than any other metro area in the U.S., KHN and the Tribune found by reviewing court data.
State inspectors also cite thousands of homes nationally for shortcomings that have the potential to cause harm. Inspections data kept by CMS show that since 2015 94 percent of homes operating in Illinois have had at least one citation for conditions that increase the risk of infection. These citations include care related to bedsores, catheters, feeding tubes and the home's overall infection-control program.
"Little infections turn to big infections and kill people in nursing homes," said William Dean, a Miami lawyer with more than two decades of experience suing nursing homes on behalf of patients and their families.
Much of the blame, regulators and patient advocates say, lies in poor staffing levels. Too few nurses or medical aides raises the risks of a range of safety problems, from falls to bedsores and infections that may progress to sepsis or an even more serious condition, septic shock, which causes blood pressure to plummet and organs to shut down.
Staffing levels for nurses and aides in Illinois nursing homes are among the lowest in the country. In the six-county Chicago area, 78 percent of the facilities' staffing levels fall below the national average, according to government data analyzed by KHN.
Matt Hartman, executive director of the Illinois Health Care Association, which represents more than 500 nursing homes, acknowledged low staffing is a problem that diminishes the quality of nursing care.
Hartman blamed the state's Medicaid payment rates for nursing homes — about $151 a day per patient on average — which he said is lower than most other states. Medicaid makes up about 70 percent of the revenue at many homes, he said.
Last October, CC Care LLC, an Illinois nursing home group that specializes in treating mentally ill patients on Medicaid, filed for bankruptcy, arguing that the state's "financial troubles have been disastrous for all nursing homes."
In a July court filing, CC Care creditors' committee argued that the company couldn't stay afloat relying on Illinois Medicaid payments, which it called "slow, erratic and significantly less than what we are due."
Pat Comstock, executive director of the Health Care Council of Illinois, said nursing homes she represents "are operating in an increasingly difficult environment in Illinois, yet they continue to prioritize delivering the best care possible to residents in a safe and secure setting."
A Festering Complaint
Shana Dorsey remembers her father as a quiet but friendly man. He worked as a uniformed bank security guard and picked up extra cash fixing neighbors' cars in an empty lot adjacent to his West Side apartment building. He was a stickler for detail, who relished teaching his granddaughter the state capitals and was always ready to lend a hand to help his daughter, who now works for a Chicago property management firm.
But age and declining health caught up with the Army veteran, who by his early 80s began to exhibit signs of dementia and moved into an assisted living apartment.
Dorsey knew her dad needed more specialized care when she found him sitting in his favorite peach recliner in his apartment, unable to get up and incontinent.
He required more intense medical and personal care as his kidney disease worsened and he became more confused, medical records show. In his last 18 months of life, he cycled in and out of hospitals eight times for treatment of septic bedsores and other infections, according to court records.
The Chicago law firm representing Dorsey, Levin & Perconti, provided KHN and the Tribune with medical records and additional court filings that cover Jackson's care.
Jackson had two pressure sores in late November 2012 when he was first admitted to Lakeview nursing center from the Jesse Brown VA Medical Center in Chicago, according to lawyers for his daughter.
These wounds healed, but in late September 2013, Jackson spiked a fever and had an infected sore in his lower back that exposed the bone, causing what Dorsey's lawyers called "significant pain."
The nursing home transferred Jackson to Presence St. Joseph Hospital in Chicago, where surgeons cut away the dead skin and administered antibiotics. At that time, the sore was as wide as a grapefruit and had "copious purulent drainage, foul smell and bleeding," Dorsey's lawyers argue. Tests confirmed sepsis, and the wound had grown so deep that it infected the sacral bone in his back, a condition known as osteomyelitis, the lawsuit said.
In November 2013, Dorsey moved her father to another nursing home. He required three more hospital visits before Dorsey made the difficult decision to place Jackson in hospice care. He died March 14, 2014, from "failure to thrive," according to a death certificate.
In her suit, Dorsey, 39, argues that Lakeview nursing staff knew Jackson was at "high risk" for bedsores because of his declining health. Yet the home failed to take steps to prevent the injuries, such as turning and repositioning him every two hours, according to the suit. That didn't happen about 140 times in August 2013 alone, Dorsey's lawyers said.
"My father was like my best friend. Most people go to their mom to talk and tell all their secrets, and for me it was my dad," Dorsey said in a November 2015 deposition.
While Lakeview declined to discuss Jackson's treatment, it has denied negligence and argued in court filings that its actions were not to blame for Jackson's death. Lockett, the home's administrator, said the facility "strictly follows" all regulations to minimize the effects of skin breakdowns that can occur naturally with age.
"We are grateful for the daily opportunity to enhance the lives of seniors and other chronically ill populations in our community," Lockett said in a statement.
Infection Control
Poor infection control ranks among the most common citations in nursing homes. Since 2015, inspectors have cited 72 percent of homes nationally for not having or following an infection-control program. In Illinois, that figure stands at 88 percent of homes.
Illinois falls below national norms for risks of pressure sores or failure to treat them properly in nursing homes. Inspectors have cited 37 percent of the nation's nursing homes for this deficiency, compared with 60 percent in Illinois, according to CMS records. Only three states were cited more frequently.
Inspectors in November 2016 cited Alden Town Manor Rehabilitation and Health Care Center in Cicero, Ill., for neglect due to its care of an unnamed 83-year-old man with pressure ulcer sores that went untreated. Gangrene had set in by the time the staff sent him to the hospital, where surgeons ended up amputating his right leg above the knee, according to the inspectors' report and citation. Alden Town Manor had no comment.
Dean, the Miami lawyer, said that nursing home staffs often miss early signs of infection, which can start with fever and elevated heart rate, altered mental status or not eating. When those symptoms occur, nurses should call a doctor and arrange to transfer the patient to a hospital, but that process often takes too long, he said.
"They don't become septic on the ambulance ride over to the hospital," Dean said.
There is little agreement over how much staff should be required in nursing homes. Federal regulations simply mandate that a registered nurse must be on duty eight hours per day, every day. In 2001, a federal government study recommended a daily minimum of 4.1 hours of total nursing time per resident, which includes registered nurses, licensed practical nurses and certified nursing assistants, often referred to as aides. That never became an industry standard or federal regulation, however.
Most states set requirements lower and face industry resistance to raising the bar. A California law requiring 3.5 hours per resident as of this July 1 is drawing intense criticism from the industry, for instance.
In addition, staffing can fluctuate, particularly over the weekends. A recent KHN investigation found that on some days, nursing home aides could be in charge of twice as many residents as normal.
At a minimum, Illinois requires 2.5 hours of direct care daily for residents. Yet federal nursing home payroll data show that at least 1 in 4 Chicago-area nursing home residents live in facilities that aren't consistently providing that much care, KHN found.
Nationally, each aide is responsible for 10 residents on average; in the six-county Chicago area, the average is 13 residents per aide.
Federal officials have linked inadequate staffing to bedsores and other injuries, such as falls. If left unattended, even a small ulcer or sore can become septic, and once that happens, a patient's life is in imminent danger.
In October 2014, Milwaukee-based Extendicare denied wrongdoing but paid $38 million to settle a federal False Claims Act lawsuit that accused it of not having enough staff on hand in 33 nursing homes in eight states, including Indiana, and failing to take steps to prevent bedsores or falls.
In other cases, federal officials have alleged that some nursing homes overmedicate residents — which can result in injuries such as falls from beds or wheelchairs and bedsores — rather than staff up to care for them properly.
Little infections turn to big infections and kill people in nursing homes.
William Dean, a lawyer who represents patients and their families
In May 2015, owners of two nursing homes in Watsonville, Calif., agreed to pay $3.8 million to settle a whistleblower lawsuit alleging the homes persistently drugged patients, contributing to infections and pressure sores.
The suit alleged that an 86-year-old man who could barely move after receiving a shot of an anti-psychotic medication lost his appetite and spent most of the day in bed, "was not turned or repositioned and developed additional pressure ulcers." He ran a 102-degree fever, but the staff failed to notify his doctor for three days, according to the suit.
Hospital doctors later diagnosed the man with sepsis and an infected pressure ulcer. The home did not admit wrongdoing and had no comment.
Personal injury lawyers and medical experts say that poor infection control often sends nursing home residents to hospitals for emergency treatment — and that the stress can hasten death.
Elderly people often "don't have the ability to bounce back from an infection," said Dr. Karin Molander, a California emergency room physician and board member of the Sepsis Alliance advocacy group.
That odyssey of multiple, stressful trips to the hospital is a common thread in negligence and wrongful death lawsuits involving sepsis or bedsores. KHN identified more than 8,000 suits filed nationwide from January 2010 to March of this year that allege injuries from failing to prevent or treat pressure sores and other serious infections.
Molander said serious bedsores indicate "someone is being ignored for an extended time period."
"When we see patients like that we file [patient neglect] complaints with adult protective services," she said.
Some of these cases led to million-dollar jury verdicts. In 2017, a Kentucky jury awarded $1.1 million to the family of a woman who suffered from bedsores and sepsis in a nursing home. In a second case last year, a jury awarded $1.8 million to a widow who alleged a Utah nursing home failed to turn her husband often enough to prevent bedsores, which led to his death.
Lawyers filed more than 1,400 of the cases from January 2010 to March of this year in Cook County Circuit Court, which tops all metro areas across the country in the KHN sample.
Nursing homes complain that garish billboards to solicit clients are a fixture in Chicago, where many attorney websites also boast of recent million-dollar verdicts from bedsore cases alone.
"We see an incredible amount of lawsuits out there," said Hartman, of the Illinois nursing home association. "We feel we have a target on our backs."
Trial lawyers counter that nursing homes often try to duck responsibility for poor care by creating complex corporate structures to limit their liability. Yet Hartman derided these suits as "cash cows" for law firms that can rack up six-figure legal fees as cases drag on. The nursing home industry supports tort reforms that would compensate injured persons but also bring a quicker resolution of claims, he said.
"That is something that needs to be fixed in Illinois," Hartman said.
Avoidable Hospital Transfers
In September 2013, the Centers for Medicare & Medicaid Services said it was working to reduce avoidable transfers from nursing homes to hospitals. CMS had previously called these trips "expensive, disruptive and disorienting for frail elders and people with disabilities."
The plans came in the wake of a critical 2013 Department of Health and Human Services audit that found Medicare had paid about $14 billion in 2011 for these transfers. Care related to sepsis cost Medicare more than the next three costliest conditions combined, according to the audit.
The auditors have not checked in to see if Medicare has since reduced those costs and have no plans to do so, a spokesman for the HHS Office of Inspector General said.
However, Definitive Healthcare's analysis of billing data, modeled after the HHS audit, shows little change between 2012 and 2016, both in terms of deaths and costs.
Wendy Meltzer, executive director of Illinois Citizens for Better Care, said that hospital trips caused by treatment for sepsis can be "emotionally devastating" for confused elderly patients.
"It's not a choice anybody makes. It's horrible for people with dementia," Meltzer said. "Some never recover from that. It's a very real phenomenon and it's cruel."
Lawmakers in at least 11 states intend to consider opioid taxes in upcoming legislative sessions. The proceeds would mostly pay for addiction treatment and prevention.
After almost slapping a tax on makers of opioid pills earlier this year, Minnesota lawmakers are set to try again when they meet in January.
The drug manufacturers that helped create the opioid addiction crisis should help fix it, said state Sen. Chris Eaton, whose daughter died of an overdose.
"I'm definitely going to pursue it" in the next legislative session, said Eaton, a Democrat. "Whether it has a chance or not kind of depends on the election."
Lawmakers in at least 10 other states intend to consider opioid taxes in upcoming legislative sessions. Many pin their hopes on the November midterm elections.
If Democrats retake governorships and legislatures this fall, lawmakers and policy analysts predict other states would be more likely to follow New York, whose groundbreaking opioid tax to raise $100 million a year took effect July 1.
November results "are absolutely going to drive some of this," said Tara Ryan, vice president of state government affairs for the Association for Accessible Medicines, which represents makers of generic medications and opposes opioid taxes. "If the Democrats take the elections, like some people say they will, it could definitely change the votes."
California, Delaware, Iowa, Kentucky, Maine, Massachusetts, Montana, New Jersey, Tennessee and Vermont are all eyeing renewed attempts to pass opioid taxes, officials in those states say. The proceeds would mostly pay for addiction treatment and prevention.
"We'll be back come January," said Tim Ashe, president pro tempore of the Vermont Senate, which overwhelmingly passed a tax measure this year that faded in the House and was opposed by the state's Republican governor, Phil Scott, who is up for re-election.
New York's law taxes manufacturers and distributors according to an opioid medication's strength and will direct proceeds toward addiction treatment, prevention and education. The tax is expected to amount to roughly a dime per lower-strength opioid pill and higher for more powerful ones.
"I think it's a good idea," said Andrew Kolodny, an opioid-policy researcher at Brandeis University and frequent critic of the pharma industry. "The human and economic costs of these meds are enormous."
Adding to the momentum is frequent support from Republicans, who are normally reluctant to tax businesses.
"I'm probably the No. 2 or 3 most conservative individual in the legislature, and I'm standing up there proposing a[n opioid] sales tax," said Montana Republican Sen. Roger Webb.
But an industry backlash is growing. An association representing pharmaceutical distributors sued in July to block the New York law, arguing that those businesses were unfairly targeted.
Pharma's main trade group has also fought hard against such measures, arguing they drive up the cost of medicine and unfairly penalize patients with chronic pain.
"We do not believe levying a tax on prescribed medicines that meet legitimate medical needs is an appropriate funding mechanism for a state's budget," said Priscilla VanderVeer, spokeswoman for the Pharmaceutical Research and Manufacturers of America, or PhRMA.
New York's law prohibits passing the tax on to consumers and other purchasers such as insurance companies, but enforcing that could be tricky, according to legal experts.
The Association for Accessible Medicines opposes all opioid taxes but especially objects to that measure because it taxes drugs per pill rather than according to revenue. That puts most of the burden on makers of cheap generics and largely spares brand-name sellers, whose marketing helped fuel the addiction crisis, Ryan said.
Drugmakers will prove to be tough opponents regardless of electoral outcomes, said Regina LaBelle, a visiting fellow at Duke-Margolis Center for Health Policy who worked on drug strategy in the Obama White House.
"These types of taxes face an uphill battle in state legislatures as powerful forces, including industry and industry-funded groups, ally against them," she said. Pharma-funded chronic-pain patients can be a powerful lobby, she said.
Surging mortality rates caused by fentanyl, heroin and other illegal opioids give pharma companies a chance to deny blame, even if many of those victims became addicted through prescription pills, LaBelle said.
Drug overdoses killed more than 70,000 people last year, a record, according to new, preliminary estimates from the Centers for Disease Control and Prevention.
Dozens of cities, counties and states have sued opioid makers and distributors, arguing the companies downplayed the dangers of addictive pills and ignored signs they were being abused on a massive scale. Often compared to litigation against tobacco companies in the 1990s, the cases could produce billions of dollars in government revenue to fight addiction and overdose.
But that could take years. Through opioid taxes and related measures, states could quickly supplement addiction-prevention funds made available by Washington, which many consider inadequate and unpredictable.
Members of Congress have pushed more opioid legislation this summer, but the House's package so far has no clear path to becoming law.
Federal funding "is a drop in the bucket," said Patrick Diegnan, a Democratic New Jersey state senator who backed an opioid tax this year. "We really basically have to put in place the infrastructure for treatment. It will cost a lot of money."
Minnesota's proposed opioid tax had bipartisan support this year, passing the state Senate by a huge margin. But under heavy pressure from drug companies, a measure in the Republican-controlled house failed at the end of the legislative session in May.
In the governor's race this fall, Tim Walz, a Democratic congressman, faces Jeff Johnson, a county commissioner who upset former Gov. Tim Pawlenty in the Republican primary.
Minnesota recently got Washington's permission to bill Medicaid, the state and federal program designed for low-income people, for psychiatric hospital stays for those with intense addiction-treatment needs.
But none of the moves so far will furnish resources adequate to relieve the crisis, argue patient advocates. Many see an element of justice in making opioid companies contribute.
"Why is it important for the drug industry to pay reparations?" said Lexi Reed Holtum, executive director of the Steve Rummler Hope Network, a Minnesota advocacy group named for her fiancé, who died of an overdose in 2011. "No matter what, this is going to go on for decades to come."
A majority of the public also blamed high healthcare costs on waste and fraud, unnecessarily high hospital charges, excessive insurance profits, and the cost of new medical technologies.
Unexpected medical bills top the list of health care costs Americans are afraid they will not be able to afford, with 4 in 10 people saying they had received a surprisingly large invoice within the past year, according to a new poll.
The Kaiser Family Foundation poll found that 67 percent of people worry about unexpected medical bills, more than they dread insurance deductibles, prescription drug costs or the basic staples of life: rent, food and gas. (Kaiser Health News is an editorially independent program of the foundation.)
Thirty-nine percent of insured adults under age 65 said they had received a medical bill within the previous 12 months that they'd figured would be covered or that was higher than they anticipated. Half of those people said the bill was less than $500, but nearly 1 in 8 said they were on the hook for $2,000 or more.
A quarter of people who said they received a surprisingly large bill attributed it to a doctor, hospital or other provider that was not in their insurance network. Such providers often will not accept the amount an insurer thinks a procedure or test should cost, and they bill the patient for the difference. That practice, known as balance billing, is one of the most common types of outsize charges that KHN and NPR profile in the “Bill of the Month” series.
Another poll recently conducted by NORC at the University of Chicago, a research group, found similar numbers of people had received a surprise bill. The most common charges were for a physician's service or a lab test.
Once again, the Kaiser poll found that a majority of the public — regardless of political party — does not want insurers to be allowed to deny coverage or charge higher premiums because of someone's medical history or health status. Both practices were standard in the health insurance industry until they were outlawed by the Affordable Care Act in 2010.
Those protections would be suspended if a group of Republican attorneys general who assert the law is unconstitutional persuade a federal court judge in Texas this week that the health law be put on hold while their case against the ACA is litigated. The ACA protections are supported by at least 86 percent of Democrats, 71 of independents and 56 percent of Republicans, the poll found.
Americans said there was plenty of blame to go around for the high cost of health care. At the top, 78 percent of the public said excessive drug company profits were a major reason health care costs are rising. That is a 7 percentage point increase from 2011 and more than any other single reason. A majority of the public also blamed waste and fraud, unnecessarily high hospital charges, excessive insurance profits and the cost of new medical technologies.
The poll was conducted Aug. 23-28 among 1,201 adults. The margin of error was +/-3 percent.
Even if the judge were to rule in favor of the Republicans' request to stop the law's enforcement immediately, the decision could be quickly appealed up the line, including, if necessary, before the Supreme Court.
Wednesday is looking like yet another pivotal day in the life-or-death saga that has marked the history of the Affordable Care Act.
In a Texas courtroom, a group of Republican attorneys general, led by Texas' Ken Paxton, are set to face off against a group of Democratic attorneys general, led by California's Xavier Becerra, in a lawsuit aimed at striking down the federal health law. The Republicans say that when Congress eliminated the penalty for not having health insurance as part of last year's tax bill, lawmakers rendered the entire health law unconstitutional. The Democrats argue that's not the case.
But first, the sides will argue before U.S. District Judge Reed O'Connor in Fort Worth, Texas, whether the health law should be put on hold while the case is litigated. The GOP plaintiffs are seeking a "preliminary injunction" on the law.
Ending the health law, even temporarily, "would wreak havoc in our health care system," said Becerra in a call with reporters last week. "And we don't believe Americans are ready to see that their children are no longer able to see a doctor or that they cannot get treated for a preexisting health condition."
Here are five questions and answers to help understand the case, Texas v. U.S.
1. What is this suit about?
In February, 18 GOP attorneys general and two GOP governors filed the suit in federal district court in the Northern District of Texas. They argue that because the Supreme Court upheld the ACA in 2012 by saying its requirement to carry insurance was a legitimate use of Congress' taxing power, eliminating the tax penalty for failure to have health insurance makes the entire law unconstitutional.
"Texans have known all along that Obamacare is unlawful and a divided Supreme Court's approval rested solely on the flimsy support of Congress' authority to tax," Paxton said in a statement when the suit was filed. "Congress has now kicked that flimsy support from beneath the law."
The lawsuit asks the judge to prohibit the federal government "from implementing, regulating, enforcing, or otherwise acting under the authority of the ACA."
2. Why are Democratic attorneys general defending the law?
The defendant in the case is technically the Trump administration. But in June, the administration announced it would not fully defend the law in court.
The Justice Department, in its filing in the case, did not agree with the plaintiffs that eliminating the tax penalty should require that the entire law be struck down. But it did say that without the tax, the provisions of the law requiring insurance companies to sell to people with preexisting conditions and not charge them more should fall, beginning Jan. 1, 2019. That is when the tax penalty goes away.
The Republican attorneys general say they still believe the entire law should be invalidated, but if that does not happen, they would accept the elimination of the preexisting condition protections.
The Democratic attorneys general applied to "intervene" in the case to defend the law in its entirety. They say they needed to step forward to protect the health and well-being of their residents. The judge granted them that status on May 16.
3. What would happen if the judge grants a preliminary injunction?
The GOP plaintiffs say the law needs to be stopped immediately, "both because individuals will make insurance decisions during fall open-enrollment periods and because the States cannot turn their employee insurance plans and Medicaid operations on a dime," according to their brief.
But setting aside the ACA while the case proceeds "would throw the entire [health] system into chaos," Becerra said. That's because the ACA made major changes not just to the insurance market for individuals, but also to Medicare, Medicaid and the employer insurance market.
Even in 2012, when the Supreme Court was considering the constitutionality of the law before much of it had taken effect, some analysts from both parties predicted that finding the law unconstitutional could have serious repercussions for the Medicare program and the rest of the health care system.
In practice, however, even if Judge O'Connor were to rule in favor of the Republicans' request to stop the law's enforcement immediately, the decision could be quickly appealed up the line, including, if necessary, before the Supreme Court.
4. Is this case purely Republicans versus Democrats?
The case is largely partisan — with Republicans who oppose the health law arguing for its cancellation and Democrats who support it fighting to keep it in place.
But a friend-of-the-court brief filed by five law professors who disagree on the merits of the ACA said that, regardless, both the GOP states and the Justice Department are wrong to conclude that eliminating the tax penalty should result in the entire law being thrown out.
In this case, "Congress itself has essentially eliminated the provision in question and left the rest of a statute standing," so courts do not need to guess whether lawmakers intended for the rest of the law to remain, they wrote.
5. What is Congress doing about this?
Technically, Congress is watching the case just as everyone else is. But Republicans in particular, while they mostly oppose the health law, are aware that the provisions protecting people with preexisting conditions are by far the most popular part of the ACA. And Democrats are already using the issue to hammer opponents in the upcoming midterm elections.
Last month, 10 GOP senators introduced legislation they said would maintain the ACA's preexisting condition protections in the event the lawsuit succeeds.
"This legislation is a common-sense solution that guarantees Americans with preexisting conditions will have health care coverage, regardless of how our judicial system rules on the future of Obamacare," said Sen. Thom Tillis (R-N.C.), the bill's lead sponsor, in a statement.
Critics, however, were quick to point out that the bill doesn't actually offer the same protections that are embodied in the ACA. While the health law requires coverage for all conditions without extra premiums, the GOP bill would require that insurers sell to people with preexisting conditions, but not that those policies actually cover those conditions.
Fraught reactions to loss and death are common among nursing assistants and other staff in long-term-care facilities, research shows. When feelings aren’t acknowledged, grief can go underground and lead to a host of physical and psychological symptoms, including depression, distancing, and burnout.
GRAY, Ga. — One by one, their names were recited as family members clutched one another's hands and silently wept.
Seventeen men and women had died within the past year at Gray Health & Rehabilitation, a 58-bed nursing home. Today, their lives were being honored and the losses experienced by those who cared for them recognized.
Death and its companion, grief, have a profound presence in long-term-care facilities. Residents may wake up one morning to find someone they saw every day in the dining room gone. Nursing aides may arrive at work to find an empty bed, occupied the day before by someone they'd helped for months.
But the tides of emotion that ripple through these institutions are rarely openly acknowledged.
"Long-term care administrators view death as something that might upset residents," said Dr. Toni Miles, a professor of epidemiology and biostatistics at the University of Georgia. "So, when someone passes away, doors are closed and the body is wheeled discretely out the back on a gurney. It's like that person never existed."
At Gray Health's memorial service on this warm, sunny day, a candle was lit for each person who had died. Their images — young and vibrant, then old and shrunken — flashed by in a video presentation. "Our loved ones continue to live on in the memories in your hearts," Rev. Steve Johnson, pastor of Bradley Baptist Church, said from a podium.
Dozens of family members gathered outside, each holding a white balloon. At the count of three came the release. Cries of "I love you" echoed as the group turned their faces to the sky.
Miles wants to see bereavement openly acknowledged at facilities throughout Georgia to end what she calls "the silence surrounding loss and death in long-term care." Following in-depth discussions with more than 70 staffers, residents and family members at nine facilities in central Georgia, she has created two handbooks on "best practices in bereavement care" and is gearing up to offer educational seminars and staff training in dozens of nursing homes and assisted living residences across the state.
"Dr. Miles' work is incredibly important" and has the potential to ease end-of-life suffering, said Amanda Lou Newton, social services team leader at Hospice of Northeast Georgia Medical Center.
Fraught reactions to loss and death are common among nursing assistants and other staff in long-term-care facilities, research shows. When feelings aren't acknowledged, grief can go underground and lead to a host of physical and psychological symptoms, including depression, distancing and burnout.
Joanne Braswell, director of social services at Gray Health, remembers a resident with intellectual disabilities who would stay in Braswell's office much of the day, quietly looking at magazines. Over time, the two women became close and Braswell would buy the resident little gifts and snacks.
"One day, I came in to work and they told me she had died. And I wanted to cry, but I couldn't," Braswell recalled, reflecting on her shock, made more painful by memories of her daughter's untimely death several years earlier. "I promised myself never again to [become] attached to anyone like that." Since then, when residents are actively dying, "I find myself pulling away," she said.
Sylvia McCoullough, 56, came to Gray Health's memorial ceremony for her father, Melvin Daniels, who died on April 19 at age 84.
Two years earlier, not long before her mother passed away, McCoullough had realized that her father had dementia. "He was the strong one in our family. … He always took care of us," she said, explaining that her father's confusion and hallucinations shook her to her foundation.
"I cry all the time," McCoullough continued, looking distressed. "It's like I'm lost without my mom and dad." But Gray's ceremony, she said, brought some comfort.
Edna Williams, 75, was among dozens of residents at the event, sitting quietly in her wheelchair.
"I love to recall all the people that have passed away through the year," said Williams, who sends sympathy cards to family members every time she learns of a fellow resident's death. On these occasions, Williams said, she's deeply affected. "I go to my room" and "shed my own private tears" and feel "sadness for what the family has yet to go through," she said.
Chap Nelson, Gray Health's administrator, has instituted several policies that Miles' bereavement guide recommends as best practices. All staff members are taught what to do when a resident dies. When possible, they're encouraged to attend the off-site funerals. Every death is acknowledged inside the building, rather than hidden away.
If one of his staff members seems distressed, "I go out and find them and talk to them and ask how I can help them with the feelings they may be having," Nelson said.
Other best practices include offering support to grieving residents and relatives of the deceased, recognizing residents' bereavement needs in care plans, and having a protocol to prepare bodies for final viewing.
Some facilities go further and create unique rituals. In one Georgia nursing home, staff members' hands are rubbed with essential oils after a resident's death, Miles said. In Ontario, Canada, St. Joseph's Health Centre Guelph holds a "blessing ritual" in the rooms where people pass away.
Fifteen miles away from Gray, in Macon, Ga., Tom Rockenbach runs Carlyle Place, an upscale facility with four levels of care: independent living, assisted living, memory care and skilled nursing services. Altogether, about 325 seniors live there. Last year, 40 died.
"We don't talk about it enough when someone passes here; we don't have a formal way of expressing grief as a community," Rockenbach said, discussing what he learned after Miles organized listening sessions for staff and residents. "There are things I think we could do better."
When a death occurs at this continuing care retirement community, an electric candle is lit in the parlor, where people go to pick up their mail. If there's an obituary, it's placed in a meditation room, often with a sign-in book in which people can write comments.
Since working with Miles, Rockenbach has a keener appreciation for the impact of death and loss. He's now considering starting a support group for staff and hosting a death cafe for residents where "people could come and hear what other people have gone through and how they got through it."
Tameka Jackson, a licensed practical nurse who has worked at Carlyle Place for eight years, became distraught after the death of one resident, in his 90s, with whom she had grown close.
"Me and him, we were two peas in a pod," she said, recalling the man's warmth and sense of humor.
Over time, the old man confided in the nurse that he was tired of living but holding on because he didn't want family members to suffer. "He would tell me all kinds of things he didn't want his family to worry about," Jackson said. "In a way, I became his friend, his nurse and his confidante, all in one."
One morning, she found his room was bare: He'd died the night before, but no one had thought to call her. Jackson's eyes filled with tears as she recalled her hurt. "I'm a praying person, and I had to ask God to see me through it," she said. "I found comfort in knowing he knew I genuinely loved him."
Jan Peak, 81, was dealing with grief of a different sort in mid-May: Her husband, David Reed, who had rapidly advancing Parkinson's disease, had recently moved to Carlyle Place's assisted living section from their independent-living apartment— signaling the end of their time living together.
Like other people at Carlyle Place, Peak had a lot of adjusting to do when she moved into the facility five years ago after her first husband had died. "Lots of people here have come here from somewhere else and given up their homes, their friends and their communities, often after the death of a spouse," Peak said. "Once you're here, loss — either your own or someone else's — is around you continually."
She found herself turning to David, whose first wife had died of a brain tumor and whom she describes as a "soft, sweet, wise man." Before they married, they talked openly about what lay ahead, and Peak promised she would carry on.
"No one can stop the heartache that accompanies loss," but "my friends and family still need me," she said.
In late May, David sustained a severe head injury after falling and died. "I miss him greatly as we were very happy together," Peak wrote in an email. "I am doing as well as I can."
Officials across the West have issued health warnings to alert sensitive groups—such as young children, older adults and people with respiratory diseases—of the potential risks.
EAST BAKERSFIELD, Calif. — Viviana Aguirre, 14, knows the air is bad when she has to reach for her inhaler once, maybe twice a week.
But this summer, the high school freshman has relied on her inhaler almost every day to keep her asthma under control.
The air in her low-income neighborhood has been thick with smoke for weeks, she said, forcing her to remain indoors most of the time. It's hard for Viviana to tell whether the smoke is coming from the usual controlled burns in the farmers' fields surrounding her home — or from the record-breaking wildfires blazing to the north and south of her, she said.
"I do see smoke," Viviana said, "but I see smoke most of the time."
People like Viviana and her family are hit disproportionately when wildfires ignite — because smoke adds another layer of toxic substances to the already dirty air, experts say.
"Without a doubt, these communities are at higher risk" when fires break out, said Emanuel Alcala, a postgraduate fellow with the Central Valley Health Policy Institute at California State University-Fresno. "Especially because you already have other environmental hazards: toxic waste sites, poor quality of water, and sometimes no air conditioning."
More than a dozen major blazes still rage across California, including the two Mendocino Complex fires in the northern part of the state that together have charred nearly 460,000 acres. One of those fires, the Ranch Fire, is the largest in state history.
Fires are also burning in Colorado, Oregon, Washington and Idaho. Smoke from these blazes has drifted as far as Ohio. Portions of northern Nevada recorded some of their worst ozone pollution ever last month because of the fires, and officials across the West have issued health warnings to alert sensitive groups — such as young children, older adults and people with respiratory diseases — of the potential risks.
In neighborhoods like Viviana's, which lies within a few miles of dairy farms, packing sheds and oil fields, particulate and ozone pollution already poses a health threat. The air is sullied by a constant, diesel-spewing stream of big rigs as well as pesticides and dust from agricultural operations.
The smell of petroleum and cows saturates the neighborhood, said Gustavo Aguirre, Viviana's dad, and creates a toxic brew with the wildfire smoke.
"When I go outside just to hang out with my friends, I start coughing and I have to come back in," Viviana said.
About 26 percent of school-aged children in the San Joaquin Valley have asthma — the highest rate in the state, according to California Health Interview Survey.
Cities in the San Joaquin Valley, the state's agricultural heartland, top the list of those with the worst air pollution in the country. The valley is also home to some of the state's poorest communities: Seven of the 10 California counties with the highest child poverty rates are there, according to a 2017 report by the San Joaquin Valley Health Fund.
"The geography and climate of the valley can trap unhealthy air for days, if not weeks," said Will Barrett, clean-air advocacy director for the American Lung Association in California.
The combination of industrial ozone and fine particulate matter from wildfire smoke becomes trapped between the mountains surrounding the valley and pushes air quality to dangerous levels. "You're combining two of the most widespread and pervasive pollutants," Barrett said. "It really is a double whammy."
Adding smoke to existing pollution can not only exacerbate someone's asthma symptoms, but also trigger new cases of the respiratory disease, said Dr. Kari Nadeau, director of the Sean N. Parker Center for Allergy & Asthma Research at Stanford University.
In some cases, all it takes is about five days of exposure to wildfire smoke for people without asthma, especially children, to develop wheezing, coughing and other symptoms, she said.
In already polluted places like the San Joaquin Valley, "the wildfires worsen your rates of asthma by fourfold and increase the rate of heart attack by 42 percent," she said. "This is just going to make it exponentially worse."
In southwest Fresno, a community dense with public housing, Maria Garcia, 62, lives within 2 miles of a poultry processing plant, warehouses and Highway 99.
Garcia considers herself healthy, but a persistent cough this summer left her gasping for air.
She compares some of her recent symptoms — such as chest pressure and headaches — to those experienced by her adult son, who has asthma.
"My guess is it's probably the smoke," Garcia said.
Other regions in the state also are suffering. Smoke from the Mendocino Complex fires has drifted into the San Francisco Bay Area, about a three-hour drive south of the blazes.
A mobile asthma clinic called the Breathmobile provides free appointments and pulmonary function tests for children at East Bay schools with a high number of students enrolled in Medi-Cal, California's Medicaid program for low-income residents, said Mary Frazier, a registered nurse and project director of the Northern California Breathmobile program.
"Kids on Medi-Cal have more asthma," she said. "It can be because they are exposed to more triggers. They live in low-income housing, which has some poor indoor-air quality and the houses are near freeways or industry."
When she starts visiting kids again in September after classes resume, Frazier knows she will encounter many children who have been coughing and wheezing because of the smoke.
Back in southwest Fresno, Gary Hunt, 54, has remained mostly housebound this summer, leaving only for important errands and medical appointments. Even then, he wears a mask.
Pollution from fires are "definitely making a drastic difference," worsening Hunt's asthma, causing more fatigue, chest pain and headaches, he said.
But extinguishing wildfires doesn't guarantee relief. There is a meat-rendering plant near his home, and busy state Route 41 is about a quarter-mile away.
"Because of where we are, we don't really get a break," he said.
Three years ago, Hunt had a severe asthma attack that sent him to the hospital. He had to leave his job as a school maintenance worker and lost his job-based insurance. He enrolled in Medi-Cal, and soon learned that not all doctors accept public insurance — which means that getting quick access to care during fire season can be a problem.
For instance, he said, he needs to see a pulmonologist — but has to wait three months for an appointment.
People with Medi-Cal or those without insurance can in some cases wait up to a year for treatment, said Kevin Hamilton, a respiratory therapist and CEO of the Central California Asthma Collaborative.
Hunt said he is frequently asked, even by doctors, why he and his family don't move to a healthier community. The answer is that he simply can't afford it.
Surgery is a mainstay of breast cancer treatment, offering most women a good chance of cure.
For frail nursing home residents, however, breast cancer surgery can harm their health and even hasten death, according to a study published Wednesday in JAMA Surgery.
The results have led some experts to question why patients who are fragile and advanced in years are screened for breast cancer, let alone given aggressive treatment.
The study examined the records of nearly 6,000 nursing home residents who had inpatient breast cancer surgery the past decade. It found that 31 to 42 percent died within a year of the procedure. That's significantly higher than the 25 percent of nursing home residents who die in a typical year, said Dr. Victoria Tang, lead author and an assistant professor of geriatrics and hospital medicine at the University of California-San Francisco.
Although her study doesn't include information about the cause of death, Tang said she suspects that many of the women died of underlying health problems or complications related to surgery, which can further weaken older patients. Patients who were the least able to take care of themselves before surgery, for example, were the most likely to die within the following year. Dementia also increased the risk of death.
It's unlikely that many of the deaths were due to breast cancer, which often grows slowly in the elderly, Tang said. Breast cancers often take a decade to turn fatal.
"When someone gets breast cancer in a nursing home, it's very unlikely to kill them," said study co-author Dr. Laura Esserman, director of the UCSF breast cancer center. "They are more likely to die from their underlying condition."
Yet most patients in the study got sicker and less independent in the year following breast surgery.
Among patients who survived at least one year, 58 percent suffered a serious downturn in their ability to perform "activities of daily living," such as dressing, bathing, eating, using the bathroom or walking across the room.
Women in the study, who were on average 82 years old, suffered from a variety of life-threatening health problems even before being diagnosed with breast cancer. About 57 percent suffered from cognitive decline, 36 percent had diabetes, 22 percent had heart failure, 17 percent had chronic lung disease, and 12 percent had survived a heart attack.
The high mortality rate in the study is striking because breast surgery is typically considered a low-risk procedure, said Dr. Deborah Korenstein, chief of general internal medicine at New York's Memorial Sloan Kettering Cancer Center.
The paper provided an example of how sick, elderly people can suffer from surgery. An 89-year-old woman with dementia who underwent a mastectomy became confused after surgery and pulled off all her bandages. Health care workers had to restrain her in bed to prevent her from pulling off the bandages again. The woman died 15 months later of a heart attack.
Surgery late in life is more common than many realize. One-third of Medicare patients undergo surgery in the year before they die, according to a 2011 study in The Lancet. Eighteen percent of Medicare patients have surgery in their final month of life and 8 percent in their final week.
Nearly 1 in 5 women with severe cognitive impairment, such as Alzheimer's disease, get regular mammograms, according to a study in the American Journal of Public Health.
The new study leaves some important questions unanswered.
The paper didn't include healthier nursing home residents who are strong enough to undergo outpatient surgery, said Dr. Heather Neuman, a surgeon and associate professor at the University of Wisconsin School of Medicine and Public Health. These women may fare better than those who are very ill.
Esserman and Tang said their findings suggest doctors need to treat breast cancer differently in very frail patients.
"People think, 'Oh, a lumpectomy is nothing,'" Esserman said. "But it's not nothing in someone who is old and frail."
In recent years, doctors have tried to scale back breast cancer therapy to help women avoid serious side effects. In June, for example, researchers announced that sophisticated genetic tests can help predict which breast cancers are less aggressive, a finding that could allow 70 percent of patients to avoid chemotherapy.
The Medicare database used in this study didn't mention whether any of the patients had chemotherapy, radiation or other outpatient care. So the UCSF researchers acknowledged that they can't rule out the possibility that some of the women suffered complications due to these other therapies. In general, however, authors noted that only 6 percent of nursing home residents with cancer are treated with chemotherapy or radiation.
The authors said doctors should give very frail patients the option of undergoing less aggressive therapy, such as hormonal treatments. In other cases, doctors could offer to simply treat symptoms as they appear.
The new study raises questions about the value of screening nursing home residents for breast cancer, Korenstein said. Although the American Cancer Society hasn't set an upper age limit for breast cancer screening, it advises women to be screened as long as they're in good health and expected to live at least another decade.
Residents of nursing homes generally can't expect to live long enough to benefit from breast screening, Korenstein said.
"It makes no sense to screen people in nursing homes," Korenstein said. "The harms of doing anything about what you find are far going to outweigh the benefits."
Democrats hope to gain control of Congress by harnessing what polls show to be voters’ dissatisfaction with both Capitol Hill and President Donald Trump.
Dr. Rob Davidson, an emergency physician from western Michigan, had never considered running for Congress. Then came February 2017. The 46-year-old Democrat found himself at a local town-hall meeting going toe-to-toe with Rep. Bill Huizenga, his Republican congressman of the previous six years.
"I told him about my patients," Davidson recalled. "I see, every shift, some impact of not having adequate health care, not having dental insurance or a doctor at all."
His comments triggered cheers from the audience but didn't seem to register with Huizenga, a vocal Obamacare critic. And that got Davidson thinking.
"I've always been very upset … about patients who can't get health care," he said. But it never inspired him to act. Until this June, that is, when the political novice joined what is now at least eight other Democratic physicians running in races across the country as first-time candidates for Congress.
Democrats hope to gain control of Congress by harnessing what polls show to be voters' dissatisfaction with both Capitol Hill and President Donald Trump. The president maintains Republican support but registers low approval ratings among Americans overall, according to news organization FiveThirtyEight. Democrats also see promise in candidates such as Davidson, a left-leaning physician who may have a special advantage: firsthand health system experience.
Of the Democratic doctors running for office, all but one are seeking House seats. In addition to the nine newcomers, there are two incumbents up for re-election. Each candidate is campaigning hard on the need to reform the health care system.
And they present a stark contrast to Congress' current physician makeup.
Twelve of the 14 doctors now in Congress are Republicans. Three are senators. Half of the 14 practice in high-paying specialties such as orthopedic surgery, urology and anesthesiology.
By contrast, these stumping Democratic physicians hail predominantly from specialties such as emergency medicine, pediatrics and internal medicine, though one is a radiologist. They're fighting to represent a mix of rural, urban and suburban districts.
"Electing Democratic doctors would certainly change the face of medicine in Congress, and perhaps lend more credence in that body to more liberal health care policies," said Dr. Matthew Goldenberg, a psychiatrist at Yale School of Medicine who has researched political behavior and advocacy among doctors.
Physicians once trended Republican. The infusion of female and minority doctors, experts said, has changed this. Now, more than 50 percent of party-affiliated doctors are Democrats, and the medical establishment has — following Republican efforts to undo Obamacare — emerged as a staunch defender of the law.
Indeed, many doctor-candidates point to the GOP's repeal-and-replace efforts as their motivation.
"It's at a boiling point for many of these physicians," said Jim Duffett, executive director of the left-leaning Doctors for America, which supports universal health care.
While health care consistently emerges as a top issue, Democrats are more likely to rank it No. 1. For independents and Republicans, though, it's neck and neck with the economy — and some political analysts question how effective it will be in flipping conservative districts.
"Democrat voters blame Republicans for the problems with health care right now. Republicans blame Democrats. Independents say, 'A pox on both your houses,'" argued Jim McLaughlin, a Republican pollster working on several 2018 races who has previously worked with Trump. "They're making a big mistake thinking they can run on [health care]."
That said, doctors can be effective messengers, especially in their communities.
Research suggests Americans hold their own physicians in high regard.
"Voters listen carefully to what physicians have to say about health policy," said Jonathan Oberlander, a professor of social medicine and health policy at the University of North Carolina. "In a district that's not so one-sided red or blue, there's no question that the white coat confers prestige. It's something physician candidates can speak to with authority."
Davidson, for instance, supports a "Medicare-for-all"-style overhaul, an approach that involves expanding the federal insurance program for seniors and disabled people to all Americans. If elected, he said, he intends to join Democrats' burgeoning support for a single-payer system, in which the government runs the sole health insurance program, guaranteeing universal coverage. He did not have a primary challenge and is running against Huizenga, the Republican incumbent, in the general election for Michigan's 2nd Congressional District.
Or there's Dr. Kyle Horton, an internist running in the North Carolina 7th District. She supports expanding Medicare, by lowering the eligibility age from 65 to 50. She also supports a "public option" health insurance plan sold by the government.
Dr. Hiral Tipirneni, an emergency physician in Arizona's 8th Congressional District, asserts all Americans should be able to buy in to Medicare.
Physicians can have an advantage on other controversial topics, by casting them as public health issues, said Howard Rosenthal, a political scientist at New York University.
Davidson's campaign, for instance, posts videos on Facebook in which he talks about topics such as health care access and gun violence. One — filmed after an overnight ER shift — has gotten 41,000 views so far.
Also spurring physicians: concerns about abortion access.
Dr. Cathleen London, a Maine doctor, launched her campaign against four-term incumbent GOP Sen. Susan Collins for the 2020 election. She said she had been considering a run, but the upcoming vote for a justice to replace Anthony Kennedy on the Supreme Court — which could have sweeping implications for reproductive health law — pushed her to declare.
"Doctors are really frustrated with Washington, frustrated with the lack of listening to us," London said.
Many of these Democrats face steep climbs.
Of races featuring newcomer physicians, the Cook Political Report, which analyzes elections, rates only Arizona's 2nd Congressional District as leaning Democratic, and the doctor in that race is just one of seven candidates in the primary. The outcome for Washington's 8th District, where Dr. Kim Schrier, a pediatrician, is a candidate, is considered a toss-up and a Democratic pickup target.
Tipirneni is the only non-incumbent doctor to have a fundraising advantage so far, according to data from Open Secrets, a nonpartisan, nonprofit project tracking campaign-finance records.
Regardless of electoral results, many observers say the potential implications are sizable — even if few doctors go to Washington.
"They are planting a flag, and they're going to be raising some important issues — not just health care, but health care is going to be front and center," said Duffett, from Doctors for America. "That will help change the political debate and political landscape."