Hospital prices increased a whopping 42% from 2007 to 2014 for inpatient care and 25% for outpatient care, compared with 18% and 6% for physicians.
Editor's note (9/6/19): HealthLeaders changed the first word of this article's headline from "analysis" to "opinion" to describe its contents more accurately. A version of this article appeared in the opinion section of The New York Times. The opinions expressed in this piece do not constitute the opinions of HealthLeaders or its editorial team.
This article was first published on Thursday, September 5, 2019 in Kaiser Health News.
As voters fume about the high cost of health care, politicians have been targeting two well-deserved villains: pharmaceutical companies, whose prices have risen more than inflation, and insurers, who pay their executives millions in salaries while raising premiums and deductibles.
Although the Democratic presidential candidates have devoted copious airtime to debating health care, many of the country's leading health policy experts have wondered why they have given a total pass to arguably a primary culprit behind runaway medical inflation: America's hospitals.
Data shows that hospitals are by far the biggest cost in our $3.5 trillion health care system, where spending is growing faster than the gross domestic product, inflation and wage growth. Spending on hospitals represents 44% of personal expenses for the privately insured, according to the Rand Corp.
A report this year from researchers at Yale and other universities found that hospital prices increased a whopping 42% from 2007 to 2014 for inpatient care and 25% for outpatient care, compared with 18% and 6% for physicians.
So why have politicians on both the left and right let hospitals off scot-free? Because a web of ties binds politicians to the health care system.
Every senator, virtually every congressman and every mayor of every large city has a powerful hospital system in his or her district. And those hospitals are as politically untouchable as soybean growers in Iowa or oil producers in Texas.
As hospitals and hospital systems have consolidated, they have become the biggest employers in numerous cities and states. They have replaced manufacturing as the hometown industry in a number of Rust Belt cities, including Cleveland and Pittsburgh.
Can Kamala Harris ignore the requests of Sutter Health, Kaiser Permanente, UCLA or any of the big health care systems in California? Can Elizabeth Warren ignore the needs of Partners HealthCare, Boston's behemoth? (Bernie Sanders may be somewhat different on this front because Vermont doesn't have any nationally ranked hospitals.)
Beyond that, hospitals are often beloved by constituents. It's easy to get voters riled up about a drugmaker in Silicon Valley or an insurer in Hartford. It's much riskier to try to direct their venom at the place where their children were born, that employed their parents as nurses, doctors and orderlies, that sponsored local Little League teams, that was associated with their Catholic Church.
And, of course, there's election money. Hospital trade groups, medical centers and their employees are major political donors, contributing to whichever party holds power — and often to the out-of-power party as well. In 2018, PACs associated with the Greater New York Hospital Association, and individuals linked to it, gave $4.5 million to the Democrats' Senate Majority PAC and $1 million to their House Majority PAC. Its chief lobbyist personally gave nearly a quarter of a million dollars to dozens of campaigns last year.
Sen. Sanders has called on his competitors for the Democratic nomination to follow his lead and reject contributions from pharma and insurance. Can any candidate do the same for hospitals? The campaign committees of all 10 candidates participating in the upcoming Democratic debate have plentiful donations linked to the hospital and health care industry, according to Open Secrets.
But the symbiosis between hospitals and politicians operates most insidiously in the subtle fueling of each other's interests. Zack Cooper, a health economist at Yale, and his colleagues looked at this life cycle of influence by analyzing how members of Congress voted for a Medicare provision that allowed hospitals to apply to have their government payments increased. Hospitals in districts of members who voted "yea" got more money than hospitals whose representatives voted "nay," to the collective tune of $100 million. They used that money to hire more staff and increase payroll. They also spent millions lobbying to extend the program.
Members who voted yea, in turn, received a 25% increase in total campaign contributions and a 65% increase in contributions from individuals working in the health care industry in their home states. It was a win-win for both sides.
To defend their high prices, medical centers assert that they couldn't afford to operate on Medicare payments, which are generally lower than what private insurers pay. But the argument isn't convincing.
The cost of a hospital stay in the United States averaged $5,220 a day in 2015 — and could be as high as over $17,000, compared with $765 in Australia. In a Rand study published earlier this year, researchers calculated that hospitals treating patients with private health insurance were paid, overall, 2.4 times the Medicare rates in 2017, and nearly three times the rate for outpatient care. If the plans had paid according to Medicare's formula, their spending would be reduced by over half.
Most economists think hospitals could do just fine with far less than they get today from private insurance.
While on paper many hospitals operate on the thinnest of margins, that is in part a choice, resulting from extravagance.
It would be unseemly for these nonprofit medical centers to make barrels of money. So when their operations generate huge surpluses — as many big medical centers do — they plow the money back into the system. They build another cancer clinic, increase CEO pay, buy the newest scanner (whether it is needed or not) or install spas and Zen gardens.
Some rural hospitals are genuinely struggling. But many American hospitals have been spending capital "like water," said Kevin Schulman a physician-economist at Stanford. The high cost of hospitals today, he said, is often a function of the cost of new infrastructure or poor management decisions. "Medicare is supposed to pay the cost of an efficient hospital," he said. "If they've made bad decisions, why should we keep paying for that?"
If hospitals were paid less via regulation or genuine competition, they would look different, and they'd make different purchasing decisions about technology. But would that matter to medical results? Compared with their European counterparts, some American hospitals resemble seven-star hotels. And yet, on average, the United States doesn't have better outcomes than other wealthy nations. By some measures — such as life expectancy and infant mortality — it scores worse than average.
As attorney general in California, Kamala Harris in 2012 initiated an antitrust investigation into hospitals' high charges. But as a senator and presidential candidate, she has been largely silent on the issue — as have all the other candidates.
As Uwe Reinhardt, the revered Princeton health economist who died in 2017, told me, "If you want to save money, you have to pay less." That means taking on hospital pricing.
So fine, go after drugmakers and insurers. And, for good measure, attack the device makers who profit from huge markups, and the pharmacy benefit managers — the middlemen who negotiate drug prices down for insurers, then keep the difference for themselves.
But with Congress returning to Washington in the coming days and a new Democratic debate less than two weeks away, our elected officials need to address the elephant in the room and tell us how they plan to rein in hospital excesses.
DENVER — A Christian-run health system in Colorado has fired a veteran doctor who went to court to fight for the right of her patient to use the state's medical aid-in-dying law, citing religious doctrine that describes "assisted suicide" as "intrinsically evil."
Centura Health Corp. last week abruptly terminated Dr. Barbara Morris, 65, a geriatrician with 40 years of experience, who had planned to help her patient, Cornelius "Neil" Mahoney, 64, end his life at his home. Mahoney, who has terminal cancer, is eligible to use the state's law, overwhelmingly approved by Colorado voters in 2016.
The growing number of state aid-in-dying provisions are increasingly coming into conflict with the precepts of faith-based hospitals, which oppose the practice on religious grounds.
Morris' dismissal presents an early test of state laws. The Trump administration has moved to broaden the latitude of providers to refuse to participate in medical interventions they object to on religious grounds, though that has previously applied primarily to abortion and contraception.
As hospitals across the country have consolidated, five of the top 10 hospital systems by net patient revenue are associated with the Roman Catholic Church, according to Definitive Health. That includes hospitals that did not previously have any religious affiliation. Meanwhile, there are 10 U.S. jurisdictions where aid-in-dying has been approved and public support for the option is increasing.
The Aug. 26 firing came days after Morris joined with Mahoney in filing a state lawsuit that alleges that Centura's faith-based policy violates the law that allows doctors to prescribe lethal drugs to dying patients who want to end their own lives.
Officials at Centura, a system jointly run by Catholic and Seventh-day Adventist churches, told Morris on Monday that she had defied church doctrines that govern her employment.
"I was shellshocked," Morris said in an exclusive interview with Kaiser Health News. "Because of all the things I expected them to do, that was not in the playbook. Because it seemed so obvious that they can't do it."
But in legal documents filed Friday that ask to elevate the case to federal court and invoke the First Amendment in defense of their actions, Centura officials said Morris had violated terms of her physician's employment agreement and "encouraged an option that she knew was morally unacceptable to her employer."
For Mahoney, the firing deals yet another setback in his quest to use the law. Mahoney, who in July was given four to 14 months to live, said he watched his mother die a slow, painful death and hopes to avoid that for himself.
"Knowing that I could die at home is huge," said Mahoney, who has lost 30 pounds since April, even as his belly swelled painfully with fluid as a result of the cancer. "This gets dragged out too long."
The Trump administration in May approved a so-called conscience rule that strengthens the rights of hospitals and health workers to refuse to participate in patient care based on religious or moral grounds.
At the same time, more doctors and patients in the country are providing and receiving health care subject to religious restrictions. About 1 in 6 acute care beds nationally is in a hospital that is Catholic-owned or -affiliated, said Lois Uttley, a program director for the consumer advocacy group Community Catalyst.
In Colorado, one-third of the state's hospitals operate under Catholic guidelines.
"Rather than encouraging patient Cornelius Mahoney to receive care consistent with that doctrine or transferring care to other providers, you have encouraged a morally unacceptable option," the letter said.
The directives state that Catholic health care providers "may never condone or participate in euthanasia or assisted suicide in any way." Such acts are described as "intrinsically immoral" and "intrinsically evil" in the document.
"Patients experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering," the document states.
Centura officials confirmed Thursday that Morris is no longer employed there, adding in a statement that the firm "expects all our caregivers to act in a manner consistent with our Mission and Core Values."
Company officials did not address claims that Centura violated state law but argued that its policy prohibiting doctors from prescribing drugs or otherwise participating in medical aid-in-dying is federally protected.
"We believe the freedom of religion doctrine at the heart of the First Amendment to the U.S. Constitution supports our policies as a Christian health-care ministry," Centura spokeswoman Wendy Forbes said in an email. "We will vigorously defend our Constitutional rights."
Legal experts said that Morris' firing may be rare or even unprecedented, but the argument based on the First Amendment has gained support recently in conservative circles.
"In recent years, the radical right has gotten traction with the argument that religious peoples' constitutional rights are violated if they have to follow the same law as everybody else," said Robert Rivas, a Florida lawyer who serves as general counsel for the Final Exit Network, a nonprofit group that promotes right-to-die causes.
"When you look closely at what they are saying," he said, "it turns out they really want to be empowered to force their religion on others."
Officials with the Archdiocese of Denver said they supported Centura's efforts to uphold church doctrine.
"Asking a Christian hospital to play any role in violating the dignity of human life is asking the Christian hospital to compromise its values and core mission," spokesman Mark Haas said in a statement. "This is not the hospital forcing its beliefs upon others, but rather having outside views forced upon it."
The issue is playing out against growing federal protections for religious views of health care, said Kathryn Tucker, executive director of the End of Life Liberty Project and co-counsel on the Centura lawsuit filed Aug. 21.
The Trump administration conscience rule, which was challenged by two dozen states and cities, including Colorado, has been delayed until Nov. 22.
"What's getting lost here is the patient, and the doctor may hold equally strong ethical and religious views as Centura," Tucker said. "Why should their views be overridden by the views of corporate religious medicine?"
Morris' termination was immediate, according to the letter. She was asked to hand over her badge and her company laptop computer. The action abruptly halted her care of 400 geriatric patients and left Morris worried about their future.
"These are complex, ill patients," Morris said. "We have a pretty big thing in medicine about not abandoning patients, so that's a pretty big issue."
In the lawsuit, Morris joined with Mahoney, a Golden, Colo., nursery manager diagnosed in July with stage 4 metastatic cancer. The pair alleged that Centura's policy prohibiting doctors from prescribing aid-in-dying drugs is broader than state law allows.
Colorado's End of Life Options Act, approved by 65% of voters in 2016, allows hospitals and health systems to opt out of offering aid-in-dying drugs for use on their premises.
In addition, another Colorado law says health care facilities may not "limit or otherwise exercise control" over a physician's medical judgment.
The suit asks a judge to rule that the hospital system may not bar Morris from prescribing the lethal drugs — or penalize her if she does.
Centura officials expressed sadness over Mahoney's illness but said the institution promotes "the sacredness of every human life."
After he received his grim diagnosis, Mahoney asked an oncologist and a social worker at his cancer center to help him access aid-in-dying. Both said no.
"I feel like I got slapped in the face," Mahoney said.
Mahoney was advised to transfer his care to a secular provider, but he said he didn't want to undergo additional tests, costs and travel as he struggled with debilitating symptoms.
Morris said she understood that Centura was religiously affiliated when she was hired but didn't anticipate a problem.
"I didn't think it was going to affect my general family practice," she said. "Until these conversations about medical aid-in-dying, I hadn't felt any interference."
Once the law passed, however, a growing number of patients asked about the option.
"I've had patients as they face devastating illness or the end of life where they say, 'Will you do this for me?'" she said, adding later: "At a certain point, we have to stand up for what's right."
Morris is considering her next steps, including separate legal action against Centura over her termination. Mahoney, who is scheduled for his third round of chemotherapy soon, said he's not sure what to do in the wake of the firing.
Raised Catholic, he said, he rejected that theology long ago.
"I don't believe in church. I don't believe in religion," he said. "I just think they're getting way too much power."
Insurance premiums for Washington's individual market are rising less than 1% on average next year, and regulators credit much of that moderation to homegrown insurance companies.
This article was first published on Friday, August 30, 2019 in Kaiser Health News.
SEATTLE — Although few states have finalized their 2020 health insurance rates yet, preliminary reports suggest that increases in premiums for plans sold on the Affordable Care Act's marketplaces will be moderate again this year.
One analysis of those early state filings, which noted some states appear poised to have lower premiums next year, found that Washington had a lower rate increase than almost half the other states.
Insurance premiums for Washington's individual market are rising less than 1% on average next year, and the state's insurance commissioner, Mike Kreidler, credits much of that moderation to homegrown insurance companies.
"We've had locally grown insurers that dominated the health insurance market for individuals," Kreidler said. These insurers are tied to the local community and must succeed in Washington or in the Pacific Northwest region to stay in business. That motivates them to try harder to meet the needs of their customers, he said.
"Insurers that are local and tied to the community — not from out of state, coming in and out — they were ones that need to stay or they weren't going to be in business," Kreidler said.
Nearly 250,000 people who do not get coverage through their employers or the government buy health insurance in Washington's individual market, most of them shopping on the state's ACA exchange, the Washington Healthplanfinder.
The individual insurance market here features companies that do business only in the Pacific Northwest, such as Asuris Northwest Health and Premera Blue Cross. Both nonprofits have been selling health insurance in the region for many years. Premera and its subsidiary LifeWise Health Plan have taken about 13% of the total health insurance market in Washington, selling to companies and individuals, both inside and outside of the Obamacare marketplace.
"Local plans can really make a difference in stabilizing their state-based marketplace," said Emily Curran, a research fellow at the Center on Health Insurance Reforms at the Georgetown University Health Policy Institute in Washington, D.C. They help fill in geographical market gaps and build better partnerships with local doctors and hospitals, and are more effective at reaching underserved populations.
One key to their success, she said, is their commitment to a local market. They can succeed only if they make the business work locally.
"They have an incentive to make sure the market is stable," she said.
Premera, based in Mountlake Terrace, a Seattle suburb, has been selling insurance in Washington for more than 80 years and is now an independent licensee of the Blue Cross Blue Shield Association. It sells plans in 38 of the state's 39 counties and also operates in Alaska.
Asuris has been in the Washington market since 1933 and became part of Portland, Ore.-based Cambia in 1994. Asuris, which is too small to make the top 10 list of insurers in the state, sells health insurance outside the ACA marketplace. Its products are available in eastern Washington and Oregon as well as northern Idaho.
But the two largest companies in Washington's health insurance market are based elsewhere: Kaiser Foundation Health Plan has seized 19% of the market and UnitedHealth Group controls 14%. Washington's Healthplanfinder has shrunk slightly since 2014, from eight companies to six in 2019, but two new outside companies plan to join the market in 2020. (Kaiser Health News has no ties to Kaiser Permanente or the Kaiser Foundation Health Plan.)
Homegrown insurance companies aren't as prominent in other states, where national companies dominate most markets. But Curran said New York is another example of a state with a base of local insurers.
Companies with a bigger footprint can afford more customer churn in their business. The smaller guys need to hang on to its customers, so they offer a wide variety of insurance options, in gold, silver and bronze tiers, both inside and outside of the state marketplace.
But buying from a local plan sometimes has disadvantages. Some companies' plans limit consumers' ability to get full health coverage in other parts of the nation. While local companies are more likely to have agents and brokers who know their customers and their plan offerings, they also have smaller teams than the big national companies and may not be available on weekends and at night, so they cannot respond as quickly to customers' requests.
While Asuris has considered expanding — to the Seattle market, for example — Brady Cass, its president, said that just doesn't make business sense. "Health insurance is personal and it's very local," he said, adding that companies that find their niche, as Asuris has, can more easily weather marketplace storms.
Asuris also markets itself to local companies. Cass, who is a Washington native and has worked for Asuris for 14 years, mentioned examples such as a concierge program Asuris started for both employers and individuals that is designed to help immigrants from Latin America. His company also sent crisis counselors to a workplace where an employee had died on the job.
Barry Baker, CEO of Baker Construction & Development in Spokane, Wash., said Asuris helped his company find economical options for both the company and its employees.
Baker also likes that Cass is involved in his community; they have served on several nonprofit boards together. "He's super community-minded," Baker said. They share business values, making a profit but also putting their profit back to work right where it was earned, he said.
Said Cass: "We've kept our feet squarely in the market that we have built."
In a career full of twists, turns and high-powered assignments, Thomas Insel may now be embarking on one of his most daunting tasks yet — helping California find its way out of a worrisome mental health care crisis.
This year, he assumed a new role to help Gov. Gavin Newsom revamp mental health care in the state. Newsom called Insel his "mental health czar," though his position is unpaid and Insel says it grants him "no authority." Even so, he is zigzagging across California this summer, visiting mental health facilities to try to understand what works and what doesn't.
Insel's meandering career path began early. A precocious student, he enrolled in a joint B.A.-M.D. program at Boston University at age 15 and then took a one-year hiatus to volunteer in clinics across Asia. He returned to finish his medical degree and later completed a three-year psychiatry residency at the University of California-San Francisco.
As a young scientist at the National Institute of Mental Health in the 1980s, Insel researched the effects of antidepressants, then shifted gears to study the neurobiology of emotional attachment in the prairie vole, a rodent known for monogamous behavior.
His groundbreaking research revealedthat the vole's devotion to a single mate was attributable to higher levels of a protein in its brain. That work — along with earlier research on anxiety in monkeys — led to a job running the Yerkes National Primate Research Center in Atlanta starting in 1994. He returned to NIMH in 2002 as its director and headed the institute, the world's largest funder of mental health research, for the next 13 years.
In 2015, Insel left NIMH to lead mental health initiatives at Verily, Google's life sciences research subsidiary. He jumped ship after a year and a half to join a startup, Mindstrong Health, which hopes to prove that the way people use their smartphones can reveal the state of their mental health — and provide opportunities to intervene. Insel also serves as board chairman of the Steinberg Institute, a Sacramento-based nonprofit focused on California mental health policy.
In May, he took a temporary leave from Mindstrong to work intensively, at Newsom's behest, on a mental health plan for the state. He intends to return to the company early next year and continue advising the governor for "as long as I can be useful."
California Healthline joined Insel on Aug. 19 as he toured Oakland's Trust Clinic, a medical and mental health center serving the city's homeless population. We sat down with him for an interview afterward. His comments have been edited for space and clarity.
Q: How would you describe the state of mental health in California and in the U.S.?
California has all the issues every other state has — incarceration, homelessness, fragmentation. More than half of people with mental illness are not getting care. There is a very shallow workforce, particularly for kids. We don't have inpatient beds where we need them.
I've spent 40 years working in this field. We have seen vast improvement in those 40 years in infectious diseases, cardiovascular care, many areas of medicine, but not behavioral health. Suicides are up about 33% since the turn of the century. Overdose deaths are skyrocketing. People with serious mental illness die about 23 years early — and we're not closing that gap. We've got to come up with better solutions now.
Q: What insights are you gaining as you visit programs around the state?
People managing these programs are heroic in what they're able to do with limited resources and tremendous demands. We have 58 mental health systems because we have 58 counties, and we have a separate system for mild to moderate mental illness. It's very fragmented — including between mental health and substance use. One family might interact with four different providers to get behavioral health care. That's not the system one would design if you're starting with the patient.
Q: How should the system be designed?
The system now is crisis-driven. The biggest transformation will come when we can identify problems and intervene earlier. That's when we get the best outcomes in diabetes, heart disease, cancer. It's equally true in behavioral health. We have to manage crisis better, keep people out of the criminal justice system, provide more continuity of care. But we also have to move upstream and capture people much earlier in their journey. This will require building infrastructure we don't have right now: crisis residential beds, sub-acute beds, places for people to live.
Q: So how do we bring about the needed changes?
California has one advantage few states enjoy. The Mental Health Services Act (MHSA) will provide $2.4 billion this year, including for early intervention, prevention and innovation. We also have [other] funds. Every county is using those funds in the way it sees fit.
The time has come to ask: How can we reduce suicide, overdose deaths and re-hospitalization in California? One approach would be to set goals for these, i.e., reduce suicide by X% in Y years. Housing and incarceration have gotten worse over time. Should the state make a pledge to its citizens to do better in those areas?
Q: Who would ensure such a pledge is honored?
Counties are still ground zero for all this. They're our connection to schools and jails, and places where the mental health crisis is playing out. The question is, can the state do more to help them succeed? One thing I've heard from every county is that the burden for documentation means that 35% to 40% of the time is taken up with paperwork, not providing services. Can we set them loose to do what they want to do?
Q: Can technology play a role in improving mental health?
As much as one might hope there'd be an app for that — it's really complicated. In the months I've focused on creating a mental health plan for California, technology is barely in the conversation. Having said that, I do think in the future using digital tools to connect people to care will be transformative.
Q: The recent mass shootings in El Paso and Dayton, like numerous others before them, were perpetrated by angry, alienated young men. What does this say about our culture and the American psyche?
It's a complicated question. There is an element of untreated mental illness that leads to high risk of violence. That violence is usually self-directed in the form of suicide; occasionally, it's other-directed. We did better, oddly enough, when I started in the field than we're doing today in providing more comprehensive, continuous care. I think we are in a crisis, but it's a crisis of care. So whether the mass shootings are a reflection of that or not — maybe to some extent, but they're a small part of a much bigger issue. We are failing to provide care to people with brain disorders. We need to do better.
An Oklahoma judge has ruled that drugmaker Johnson & Johnson helped ignite the state's opioid crisis by deceptively marketing painkillers and must pay $572 million to the state.
Oklahoma sought $17 billion, blaming Johnson & Johnson's marketing practices for fueling the crisis that has claimed the lives of 6,000 people in the state.
It's the first ruling to hold a pharmaceutical company responsible for one of the worst drug epidemics in American history.
Judge Thad Balkman delivered his decision from the bench after presiding over an eight-week civil trial in the college town of Norman, Okla.
"Defendants caused an opioid crisis that is evidenced by increased rates of addiction, overdose deaths and neonatal abstinence syndrome in Oklahoma," Balkman said in the ruling.
Johnson & Johnson immediately released a statement saying that the company "plans to appeal the opioid judgment in Oklahoma."
Oklahoma Attorney General Mike Hunter's suit alleged that Johnson & Johnson, through its pharmaceutical subsidiary Janssen, helped ignite a public health crisis that has killed thousands of state residents.
Balkman, in the ruling, said the state made its case that Johnson & Johnson contributed to the state's opioid crisis.
"The opioid crisis is an imminent danger and menace to Oklahomans," Balkman said. "The state met its burden," proving the company acted improperly with its "misleading marketing and promotion of opioids."
The case is being closely watched by plaintiffs in other opioid lawsuits, particularly the roughly 2,000 cases pending before a federal judge in Ohio.
Initially, Hunter's lawsuit included Purdue Pharma, the maker of OxyContin. In March, Purdue Pharma settled with the state for $270 million, about $200 million of which will fund an addiction research and treatment center at Oklahoma State University in Tulsa. Soon afterward, Hunter dropped all but one of the civil claims, including fraud, against the two remaining defendants.
Just two days before the trial began, one of those two defendants, Teva Pharmaceuticals, based in Israel, announced an $85 million settlement with the state.
Both companies deny any wrongdoing.
Johnson & Johnson marketed the opioid painkillers Duragesic and Nucynta. Lawyers for the company say that its products were highly regulated by the Food and Drug Administration, among other agencies, and that the state did not provide any evidence showing that the company's sales practices helped fuel the crisis.
This story is part of a reporting partnership that includes NPR, StateImpact Oklahoma and other member stations.
In the heat of the most ferocious battle over drug prices in years, pharmaceutical companies are showering U.S. senators with campaign cash as sweeping legislation heads toward the floor.
In the first six months of this year alone, political action committees run by employees of drug companies and their trade groups have given the 30 senators expected to run for reelection nearly $845,000, the latest update to Kaiser Health News' "Pharma Cash to Congress" databaseshows. That hefty sum stands out with Election Day more than 14 months away.
Lowering drug prices is one of the rare causes that has united Democrats and Republicans, and at least one proposal that would change the way the industry does business could get a vote in Congress this year. One of the most promising and aggressive updates would cap drug prices under Medicare so they do not outpace inflation.
The number of big contributions and the lawmakers receiving them signal the industry is building loyalty as voters push candidates to talk about drug prices in the 2020 elections.
For the drug industry, the stakes are high.
"If the Senate flips" to Democrats, "then PhRMA's probably going to have to double its budget," said Kent Cooper, a former Federal Election Commission official who has tracked political money for decades, referring to the industry's biggest lobbying group, the Pharmaceutical Research and Manufacturers of America.
Most of the biggest donations in the first half of 2019 have gone to Republicans, who control the Senate and tend to be more reluctant to restrict drugmakers. And even those who do not serve on committees that oversee the industry or represent states with significant industry ties have benefited from drugmaker cash this year.
"We support candidates from both political parties who support innovation and patient access to medicines," said PhRMA spokeswoman Holly Campbell.
Several senators facing tough reelection campaigns have raked in tens of thousands of dollars this year, with some collecting much more than the industry has given them in the past decade, if ever.
"If it looks as though somebody is going to have a tough run — maybe a friend, maybe somebody you want to develop a better relationship with — you put some extra money in place," said Steven Billet, a former AT&T lobbyist who teaches PAC management at George Washington University.
Thus far, senators running for reelection have together pulled in over $115,000 more than the 27 senators who were running for reelection in mid-2017.
The biggest single beneficiaries were Sens. Chris Coons, a Democrat from Delaware, and Thom Tillis, a North Carolina Republican, who took in a whopping $103,000 and $102,000 respectively in the first six months of the year. Tillis and Coons, the leaders of a Senate subcommittee on intellectual property, have been working on legislation to overhaul the patent system — perhaps the most powerful tool brand-name drugmakers have to keep prices, and profits, high.
Sen. John Cornyn (R-Texas) has been a vocal critic of the way some drugmakers use patents to extend their monopolies on drugs and block competitors, introducing a bill that would empower the government to sue drugmakers for gaming the system.
Cornyn, who faces a difficult reelection fight, received about $65,500.
Another top recipient was Sen. Cory Gardner of Colorado, who is considered the most vulnerable Republican up for reelection in 2020. John Hickenlooper, the state's former governor who dropped out of the Democratic presidential primary on Aug. 15, has decided to challenge Gardner, further complicating his chances of being reelected.
Despite Gardner's lack of pharma-related committee assignments, he received about $81,000 from drugmaker PACs this year, ranking him among the top 10 recipients of pharma cash in Congress. Another vulnerable Republican incumbent, Sen. Joni Ernst of Iowa, received about $35,500 — a huge bump for a lawmaker who, before this year, had collected about $15,000 total during her first term.
Sen. Gary Peters (D-Mich.) is also considered in danger as he runs for reelection in a state that voted for President Donald Trump in 2016. Like Gardner and Ernst, he does not serve on key committees, nor has he played a high-profile role in this year's pushes on drug prices.
Peters received about $49,500 in campaign contributions from drugmaker PACs in the first half of the year, a personal record since being sworn in in 2015. Last year he received about $10,500 from drugmaker PACs in total.
Congressional leaders, who also help fund the campaigns of party members, are a common target of pharmaceutical industry contributions. And with Republicans controlling what legislation comes up in the Senate, Majority Leader Mitch McConnell, also running for reelection, has seen an uptick in donations: He received more than $85,000 during the first half of the year, a record for him over the course of the past eight years.
Drugmaker PACs typically give to most members of Congress, regardless of party. But with Democrats pushing some of the most aggressive proposals to regulate drugmakers, the industry may stand to lose more ground should Democrats regain control of Congress — and political experts say that is a possibility. Democrats are likely to make drug prices a key campaign issue.
"While it may not be true at this very moment, it may well be true that the Democrats will have enough seats in play to really fight for the majority," said Jennifer Duffy, a senior editor at the nonpartisan Cook Political Report. "I think it's a tossup at this point."
The 19 Senate Republicans running in 2020 collected an average of more than $32,500 each from the pharmaceutical industry, while the 11 Democrats collected an average of nearly $20,500 each.
Sen. Bill Cassidy, a Louisiana Republican who is a gastroenterologist by trade and has been active on health care issues, received about $76,000 from drugmaker PACs in the first half of the year despite the likelihood he will be reelected next year.
Pharmaceutical company PAC contributions are only part of the picture, though. Dollars from individual drug company employees may flow in the same direction, as well as "dark money" spending that often dwarfs what must be disclosed.
"The PAC contribution is a signal to other folks who are associated with the industry," Billet said.
Drug prices have been among Americans' top concerns for years. Large, bipartisan majorities favor policiesto control drug costs, including importing drugs from Canada and government negotiations to lower prices paid by Medicare.
Prescription prices remain far higher in the U.S. than in other wealthy countries. Prices for hospital medicines continue to rise. High-deductible health plans have increased the number of patients who feel the drug-price sting directly before insurance kicks in.
New therapies such as genetically altered immune cells to fight cancer, which can cost $1 million per treatment, threaten to renew the cost spiral.
The House also saw an uptick in donations from drug industry PACs during the first half of the year, with the Republican leader, Rep. Kevin McCarthy of California, and the top Republican on the House Energy and Commerce Committee, Rep. Greg Walden of Oregon, taking in the most. McCarthy received about $89,000, while Walden collected about $86,500.
Wyoming, the reddest of Republican states and a bastion of free enterprise, thinks it may have found a way to end crippling air ambulance bills that can top $100,000 per flight.
The state's unexpected solution? Undercut the free market by using Medicaid to treat air ambulances like a public utility.
The issue has come to a head in Wyoming, where rugged terrain and long distances between hospitals forces reliance on these ambulance flights. Costs for such emergency transports have been soaring, with some patients facing massive unexpected bills as the free-flying air ambulance industry expands with cash from profit-seeking private-equity investors.
Other states dealing with the same dynamic have tried to rein in the industry but have continually run up against the Airline Deregulation Act, a federal law that preempts states from regulating any part of the air industry.
So, Wyoming officials are instead seeking federal approval to funnel all medical air transportation in the state through Medicaid, a joint federal-state program for residents with lower incomes. The state officials plan to submit their proposal in late September to Medicaid's parent agency, the Centers for Medicare & Medicaid Services; the plan will still face significant hurdles there.
If successful, however, the Wyoming approach could be a model for the nation, protecting patients in need of a lifesaving service from being devastated by a life-altering debt.
"The free market has sort of broken down. It's not really working effectively to balance cost against access," said Franz Fuchs, a policy analyst for the Wyoming Department of Health. "Patients and consumers really can't make informed decisions and vote with their dollars on price and quality."
Freewheeling Free-Market System
The air ambulance industry has grown steadily in the U.S. from about 1,100 aircraft in 2007 to more than 1,400 in 2018. During that same time, the fleet in Wyoming has grown from three aircraft to 14. State officials said an oversupply of helicopters and planes is driving up prices because air bases have high fixed overhead costs. Fuchs said companies must pay for aircraft, staffing and technology such as night-vision goggles and flight simulators, incurring 85% of their total costs before they fly a single patient.
But with the supply of aircraft outpacing demand, each air ambulance is flying fewer patients. Nationally, air ambulances have gone from an average of 688 flights per aircraft in 1990, as reported by Bloomberg, to 352 in 2016. So, companies have raised their prices to cover their fixed costs and to seek healthy returns for their investors.
A2017 report from the federal Government Accountability Office notes that the three largest air ambulance operators are for-profit companies with a growing private equity investment. "The presence of private equity in the air ambulance industry," the report said, "indicates that investors see profit opportunities in the industry."
While precise data on air ambulance costs is sparse, a 2017 industry reportsaid air ambulance companies spend an average of $11,000 per flight. In Wyoming, Medicare pays an average of $6,000 per flight, and Medicaid pays even less. So air ambulance companies shift the remaining costs — and then some — to patients who have private insurance or are paying out-of-pocket.
As that cost-shifting increases, insurers and air ambulance companies haven't been able to agree on in-network rates. So the services are left out of insurance plans. When a consumer needs a flight, it's billed as an out-of-network service. Air ambulance companies then can charge whatever they want. If the insurer pays part of the bill, the air ambulance company can still bill the patient for the rest — a practice known as balance billing.
"We have a system that allows providers to set their own prices," said Dr. Kevin Schulman, a Stanford University professor of medicine and economics. "In a world where there are no price constraints, there's no reason to limit capacity, and that's exactly what we're seeing."
Nationally, the average helicopter bill has now reached $40,000, according to a 2019 GAO report, more than twice what it was in 2010. State officials say Wyoming patients have received bills as high as $130,000.
Because consumers don't know what an air ambulance flight will cost them — and because their medical condition may be an emergency — they can't choose to go with a lower-cost alternative, either another air ambulance company or a ground ambulance.
A Different Way of Doing Things
Wyoming officials propose to reduce the number of air ambulance bases and strategically locate them to even out access. The state would then seek bids from air ambulance companies to operate those bases at a fixed yearly cost, under a sort of Netflix model. It's a regulated monopoly approach similar to the way public utilities are run.
"You don't have local privatized fire departments springing up and putting out fires and billing people," Fuchs said. "The town plans for a few fire stations, decides where they should be strategically, and they pay for that fire coverage capacity."
Medicaid would cover all the air ambulance flights in Wyoming and then recoup those costs by billing patients' insurance plans for those flights. A patient's out-of-pocket costs would be capped at 2% of the person's income or $5,000, whichever is less, so patients could easily figure out how much they would owe. Officials estimate they could lower private insurers' average cost per flight from $36,000 to $22,000 under their plan.
State Rep. Eric Barlow, who co-sponsored the legislation, recognizes the irony of a GOP-controlled, right-leaning legislature taking steps to circumvent market forces. But the Republican said that sometimes government needs to make sure its citizens are not being abused.
"There were certainly some folks with reservations," he said. "But folks were also hearing from their constituents about these incredible bills."
Industry Pushback
Air ambulance companies have opposed the plan. They say the surprise-billing problem could be eliminated if Medicare and Medicaid covered the cost of flights and the companies wouldn't have to shift costs to other patients. They question whether the state truly has an oversupply of aircraft and warn that reducing the number of bases would increase response times and cut access to the lifesaving service.
Richard Mincer, an attorney who represents the for-profit Air Medical Group Holdings in Wyoming, said that while 4,000 patients are flown by air ambulance each year in the state, it's not clear how many more people have needed flights when no aircraft was available.
"How many of these 4,000 people a year are you willing to tell, 'Sorry, we decided as a legislature you're going to have to take ground ambulance?'" Mincer said during a June hearing on the proposal.
But Wyoming officials say it indeed might be more appropriate for some patients to take ground ambulances. The vast majority of air ambulance flights in the state, the state officials say, are transfers from one hospital to another, rather than on-scene trauma responses. The officials say they've also heard of patients being flown for nonemergency reasons such as a broken wrist or impending gallbladder surgery.
Air ambulance providers say such decisions are out of their control: They fly when a doctor or a first responder calls.
But those companies have ways of drumming up business. Air ambulance companies heavily market memberships that cover a patient's out-of-pocket costs, eliminating any disincentive for the patient to fly. Companies also build relationships with doctors and hospitals that can influence the decision to fly a patient. Some have been reported to deliver pizzas to hospitals by helicopter to introduce themselves.
Mincer, the Air Medical Group Holdings attorney, said the headline-grabbing large air ambulance bills don't reflect what patients end up paying directly. The average out-of-pocket cost for an air ambulance flight, he said, is about $300.
The industry also has tried to shift blame onto insurance plans, which the transporters say refuse to pay their fair share for air ambulance flights and refuse to negotiate in-network rates.
Doug Flanders, director of communications and government affairs for the medical transport company Air Methods, said the Wyoming plan "does nothing to compel Wyoming's health insurers to include emergency air medical services as part of their in-network coverage."
The Profit Model
Other critics of the status quo maintain that air ambulance companies don't want to change, because the industry has seen investments from Wall Street hedge funds that rely on the balance-billing business model to maximize profits.
"It's the same people who have bought out all the emergency room practices, who've bought out all the anesthesiology practices," said James Gelfand, senior vice president of health policy for the ERISA Industry Committee, a trade group representing large employers. "They have a business strategy of finding medical providers who have all the leverage, taking them out of network and essentially putting a gun to the patient's head."
The Association of Air Medical Services counters that the industry is not as lucrative as it's made out to be, pointing to the recent bankruptcy of PHI Inc., the nation's third-largest air ambulance provider.
Meanwhile, Blue Cross Blue Shield of Wyoming is supportive of the state's proposal and looks forward to further discussion about the details if approved, according to Wendy Curran, a vice president at the health insurance firm. "We are on record," Curran said, "as supporting any effort at the state level to address the tremendous financial impacts to our [Wyoming] members when air ambulance service is provided by an out-of-network provider."
The Wyoming proposal also has been well received by employers, who like the ability to buy into the program at a fixed cost for their employees, providing a predictable annual cost for air ambulance services.
"It is one of the first times we've actually seen a proposal where the cost of health care might actually go down," said Anne Ladd, CEO of the Wyoming Business Coalition on Health.
The real challenge, said Fuchs, will be convincing federal officials to go along with it.
Daniella Mohazab didn't know what to expect from her first pelvic exam in 2016. The University of Southern California sophomore, then 19, was startled when her doctor examined her vagina for several minutes without gloves, but assumed it was standard procedure.
It wasn't until two years later, when she read about Dr. George Tyndall's alleged sexual abuse against USC students, that she realized she may have been sexually violated by him as well.
Driven by stories like Mohazab's, California Assembly members Ian Calderon (D-Whittier) and Cottie Petrie-Norris (D-Laguna Beach) have proposed a bill to require doctors to give first-time pelvic exam patients a pamphlet about how the exams are supposed to be conducted, and a phone number should they want to report misconduct to the state medical board. Doctors would face a fine if they did not collect a patient's signature confirming they received the pamphlet.
Mohazab said a pamphlet would have helped her immensely.
"It would give people an answer about what's right or wrong," said the Los Angeles resident who now works at a tech startup. "I trusted my doctor, and now, years later, I'm dealing with the consequences of that."
Legislators in Michigan proposed similar legislation last year in response to the scandal involving Dr. Larry Nassar, the former Michigan State University and USA Gymnastics team physician who pleaded guilty to sexually assaulting minors and possession of child pornography. Nassar had sexually abused hundreds of young women and girls under the guise that he was performing physical therapy.
The bill, which failed, would have created a standardized consent form for guardians, outlining basics such as the use of gloves, before a minor could undergo any treatment involving vaginal or anal penetration.
Doctors have pushed back hard on the bills in both states, mostly because of the signature requirements.
Health researchers say these measures are part of a broader national shift in the doctor-patient relationship. The old-school dynamic, in which the doctor is viewed as the ultimate authority, is giving way to another perspective: Physicians can be questioned, and patients have a right to speak up if they feel uncomfortable.
In addition to Tyndall and Nassar, several high-profile sexual misconduct scandals have come to light since 2014, including cases at prestigious universities and hospitals such as UCLA, Johns Hopkins Hospital and the Ohio State University. In all of the cases, the doctors are accused of using their medical authority to victimize hundreds — and in the Johns Hopkins case, thousands — of patients.
"There are unfortunately too many times where we need to protect people from their physicians," Petrie-Norris said.
There's no evidence that informed consent laws prevent sexual assault.
However, these pamphlets might send a strong message to all clinicians — including potential predators — that patients will be on their guard, said Robin Fretwell Wilson, director of the Epstein Health Law and Policy Program at the University of Illinois College of Law.
For almost two decades, Wilson has lobbied states to pass laws banning pelvic exams on anesthetized patients without prior consent — a common practice in teaching hospitals.
"We're really sensitized to this now in the #MeToo era," Wilson said. "It's a time when we can empower patients."
In California, two powerful doctor groups, the California Medical Association and the California Academy of Family Physicians, oppose the bill's signature requirement, saying it would burden doctors with extra paperwork without preventing crime, and could cause a victim to blame herself after the fact for not having stopped the abuse.
The American Congress of Obstetricians and Gynecologists, a national organization, also weighed in on the measure, saying it is generally opposed to any proposal that mandates how doctors communicate with their patients.
The state Assembly has already approved the bill, which is now in the state Senate. Its supporters include the Consumer Attorneys of California and the Medical Board of California.
Dr. Joyce Sutedja, an OB-GYN resident at the University of California-Irvine Medical Center, said she was abused by Tyndall when she was a student. At the California Medical Association's request, she argued against the bill's signature requirement in a state Senate hearing in June, saying it might make victims feel responsible for what had happened to them.
"If I had signed a piece of paper stating that I knew the components of a normal pelvic exam — whether I had actually read the document or not — and the same thing had happened despite my signing the form, it would be near impossible to keep from blaming myself for letting it happen anyway," Sutedja wrote in a letter to lawmakers.
The signature requirement in Michigan's bill led to its demise.
Doctors were worried that minors would decide not to seek sexual health care services because they would need permission from their parents or guardian beforehand, Michigan Rep. Daire Rendon (R-Lake City) said.
But a signature can be empowering for patients, argued Christy Leach, 43, who testified at the same California Senate hearing as Sutedja.
"It forces the predatory doctor to keep his sick notions at bay," she said.
When Leach attended USC, she went to the student health center in 1998 for a sinus infection. During the appointment, Tyndall talked her into her first pelvic exam as well, during which he pushed his ungloved fingers in and out of her vagina for what seemed to her like five minutes. The experience was extremely painful, Leach said, but she had no idea to expect anything different.
When she had a gynecological appointment a few years later with a different doctor, Leach was surprised when the properly conducted pelvic exam was painless and over in seconds. Her trust in her doctors was so strong, however, that she reasoned that Tyndall must have given her a more rigorous exam.
"The human spirit is strong, and wants to believe the best in people," Leach said. "And so I just really thought that this thorough exam must be only every couple of years."
This year's political spending is aimed at killing a bill in the California legislature that would disrupt the industry's business model — and likely reduce its profits.
This article was first published on Friday, August 23, 2019 inKaiser Health News.
The dialysis industry spent about $2.5 million in California on lobbying and campaign contributions in the first half of this year in its ongoing battle to thwart regulation, according to a California Healthline analysis of campaign finance reports filed with the state.
Last year, dialysis companies poured a record-breaking $111 million into a campaign to defeat a ballot initiative that would have capped their profits.
This year's political spending, which includes an online and broadcast advertising blitz, is aimed at killing a bill in the state legislature that would disrupt the industry's business model — and likely reduce its profits. The dialysis industry counters that the bill would threaten some low-income patients' access to the lifesaving treatment.
"Nobody is spending $2.5 million out of the goodness of their hearts," said David Vance, a spokesman for Common Cause, a nonprofit group that advocates for campaign finance reform. "That kind of money is spent to get the attention of legislators and to get results."
And the spending doesn't appear to be slowing. Since the most recent campaign finance reporting deadline, which showed a total of $2.5 million spent through June, a campaign committee backed by the industry has spent at least $470,000 more since then.
Dialysisfilters the blood of people whose kidneys are no longer doing the job. People on dialysis, who typically need three treatments a week, usually qualify for Medicare, the federal health insurance program for people 65 and older, and those with kidney failure and certain disabilities.
But dialysis companies can get higher reimbursements from private insurers than from Medicare. One way dialysis patients remain on private insurance is by getting financial assistance from the American Kidney Fund, which helps nearly 75,000 low-income dialysis patients, including about 3,700 in California.
The American Kidney Fund receives most of its donations from DaVita Inc. and Fresenius Medical Care, the two largest dialysis companies. The fund does not disclose its donors, but an audit of its finances reveals that 82% of its annual funding in 2018 — nearly $250 million — came from two companies.
Critics of this system, including some California lawmakers, insurance companies and a powerful nurses union, say it's a way for the dialysis industry to inflate profits by steering patients away from Medicare and other public insurance coverage to private insurance, which pays higher rates.
The measure under consideration in the legislature, AB-290 by state Assemblyman Jim Wood (D-Santa Rosa), would limit the private-insurance reimbursement rate that dialysis companies receive for patients who get assistance from groups such as the American Kidney Fund. The bill would also address a similar dynamic in drug treatment programs.
"The minute you try to close one of those loopholes, the folks involved spend millions and millions to fight you," Wood said.
The state Assembly approved the bill in May, and the state Senate is now considering it. The legislature passed a similar measure last year that former Gov. Jerry Brown vetoed, saying the language was too broad and the move would have allowed providers to refuse care to some patients.
DaVita and Fresenius declined to comment and directed questions to Kathy Fairbanks, spokeswoman for the "Dialysis is Life Support" coalition, which includes dialysis providers, industry groups, patients and caregivers. She said the dialysis industry isn't the only stakeholder trying to influence the political process.
Groups supporting the measure, including large insurance companies and labor unions, also are spending big, she said. For instance, a committee formed and funded by the Service Employees International Union-United Healthcare Workers West to support last year's initiative — and challenge the dialysis industry and its profits — spent $580,000 in the first half of this year.
The $2.5 million in political spending by the dialysis industry between January and June falls into two categories: lobbying the legislature, and campaign contributions to support candidates and influence public opinion. Campaign spending made up about $1.3 million of the total.
DaVita accounted for the biggest chunk of the campaign spending: $580,000. Fresenius spent $270,000.
These contributions went to 48 of the state's 80 Assembly members and 21 of the state's 40 senators, primarily to their prospective 2020 or 2022 campaigns.
Of the 69 legislators who received money from DaVita and Fresenius, Assemblyman James Ramos (D-Highland) got the most: $16,800 in the first half of the year. Ramos did not respond to requests for comment.
Nine other Assembly members and two senators each also received more than $10,000 in contributions from DaVita and Fresenius.
The rest of the $1.3 million in campaign spending was doled out by the campaign committee formed and funded by the industry to defeat Proposition 8 last year. The "Patients and Caregivers to protect dialysis patients" committee spent $440,000 in the first half of 2019, mostly on an advertising campaign to sway public opinion against Wood's measure.
The media campaign began by promoting the message "Dialysis is Life Support" via social media accounts anda slick website, which emphasized the importance of dialysis to people with kidney failure. But the messaging has shifted and is now urging people to contact their legislators to oppose the bill. The committee spent $33,000 on advertising with Politico and $26,000 with The Sacramento Bee, among others, according to campaign finance reports.
The coalition and the patients featured in the ads argue the measure will threaten the health care and possibly survival of the California patients who get assistance from the American Kidney Fund, which has said it would cease operations in the state if the bill is adopted.
Home dialysis for older adults will become more common in the years ahead, experts predict — but not without overcoming significant challenges.
By 2025, the Trump administration wants 80% of people newly diagnosed with kidney failure to receive home dialysis or kidney transplants, according to an executive order issued in July. Currently, more than 85% of such patients are treated at dialysis centers.
In a notable move, retail health giant CVS Health has said it will enter the dialysis business, while the companies that dominate this market — Fresenius Medical Care and DaVita — have confirmed plans to expand their home dialysis offerings.
"We think there's definitely an opportunity to get more of our patients home," said Dr. Dinesh Chatoth, associate chief medical officer at Fresenius, which this year bought NxStage Medical, a leading provider of home dialysis technology. (About 12% of Fresenius' 208,000 U.S. dialysis patients are on home therapies.)
"I think it's realistic to expect 40% to 50% of patients to be able to do home dialysis," said Dr. Martin Schreiber, chief medical officer for DaVita home modalities. (About 13% of DaVita's 203,000 U.S. dialysis patients now receive home therapies.)
Other experts think that's optimistic. "I think 25% to 30% of patients is more realistic," said Dr. Thomas Golper, a professor of medicine at Vanderbilt University, whose home dialysis program is among the largest in country.
Home dialysis has several advantages over dialysis in treatment centers: Patients can get therapy more frequently, which puts less stress on their bodies; it's more convenient; it's less expensive; and patients' quality of life is generally better, according to numerous studies. On the downside, doing this therapy at home can be isolating, fraught with anxiety, technologically challenging and burdensome for patients and caregivers.
What changes are needed to bring home dialysis to more patients — especially older adults, the fastest-growing group of patients with serious, irreversible kidney disease? We asked nephrologists, patient advocates and dialysis company officials for their thoughts.
Better patient education. Medicare pays for "pre-dialysis education" that informs patients about treatment options before their kidneys fail. Yet, fewer than 2% of Medicare members with advanced kidney disease receive this benefit, according to a U.S. Government Accountability Office report.
"We need to improve the education of patients regarding their [dialysis] modality choices," said Schreiber of DaVita. Patients who attend that company's Kidney Smart education classes are six times more likely to select home dialysis as a treatment option, according to materials supplied by DaVita.
Ongoing education about how to handle issues that arise during home dialysis is also needed. In a recent survey of caregivers providing complex care at home, 60% of caregivers assisting with home dialysis said they needed "more/better instruction" while 18% called for "more help from others."
"Right now, patients are educated on the mechanics of the treatment," said Nieltje Gedney, treasurer of Home Dialyzors United, a patient group that has been testing an education curriculum. "But in order to be successful at home, patients also have to learn much more about how to manage their treatment."
More personal assistance. In Canada, Australia and other countries where home dialysis is much more common than in the U.S., patients can get assistance from health workers who help them set up for a dialysis treatment and wind things down when treatment is over. On each end, tasks required can take half an hour or longer.
Medicare doesn't pay for this kind of assistance, but it should — especially for older adults, several experts suggest.
"Imagine trying to move someone 75 or older who's socioeconomically disadvantaged onto home dialysis," said Dr. Holly Mattix-Kramer, president of the National Kidney Foundation and a professor of medicine at Loyola University Medical Center in Chicago. "Maybe they feel insecure and kind of afraid. Maybe they need some extra time going over skills. Maybe they need some extra support the first few months before they feel comfortable with the routine."
Home health aides or community health workers could provide help of this kind. Dori Schatell, executive director of the Medical Education Institute, which specializes in serving people with kidney disease, called for a demonstration project of paid home dialysis helpers.
"Assisted dialysis in the home would have tremendous advantages, I believe, especially for the elderly," Schreiber said, and DaVita has been talking to the Centers for Medicare & Medicaid Services about how this might work.
New technologies. In the next several years, Chatoth of Fresenius envisions that new technologies will allow people on home dialysis to be monitored much more closely, day by day. Two-way portals would allow data to flow back and forth between patients and clinicians. Telehealth would allow physicians, nurses, social workers and dietitians to interact with patients remotely and provide more ongoing support.
This kind of connectivity is especially important for older adults with multiple medical conditions who need extra oversight and may have difficulty traveling to a dialysis center.
Fresenius is doing a telehealth pilot, and "we think by the end of the year we should have this rolled out across most of our [home dialysis] programs," Chatoth said.
Dr. Eric Wallace, an associate professor of nephrology at the University of Alabama at Birmingham and a pioneer in the use of telehealth for home dialysis, thinks telehealth has considerable potential but voiced concerns.
For instance, poor patients and patients in rural areas often don't have enough internet bandwidth to support videoconferencing. While physicians rely on laboratory tests to evaluate dialysis patients, "there aren't mechanisms in place to do labs inside a patient's home," Wallace said. And some older patients may become even more isolated without regular face-to-face visits to medical providers.
"Telehealth is going to open up new ways to connect with patients," he said. "But I don't think it's quite as easy as people want to make it sound."
Also, several companies are developing technologies that could make home dialysis safer and easier, including NxStage, CVS, Outset Medical of San Jose, Calif., Quanta Dialysis Technologies of the United Kingdom, and Physidia, out of France.
"They each have their own specific angle, but the general theme with all of them is the 'Apple-fication' of dialysis machines," said Dr. Frank Liu, director of home hemodialysis at the Rogosin Institute in New York City.
Altering physician practices. A precondition for change is educating physicians about home dialysis and persuading them to offer it to more patients, experts suggest.
Only one-third of patients who need to start dialysis are told peritoneal dialysis at home is an option, while only 12% are offered home hemodialysis, researchhas shown.
Dr. Matthew Rivara, a nephrologist and investigator at the University of Washington Kidney Research Institute, faults "inadequate training in home dialysis" in nephrology fellowship programs, as do several other leading nephrologists.
"There's almost nothing on board examinations that tests physicians' knowledge about home dialysis; nephrologists can pass with flying colors and know very little about these therapies," said Golper of Vanderbilt who's helped launch a training program for physicians, Home Dialysis University.
Easing transitions. When patients learn they have potentially fatal kidney disease, "you're literally blinded with fear. There's no way you can think about your options until you get past that," said Gedney of Shepherdstown, W.Va., who has relied on home hemodialysis since 2014.
Transitional programs that help people adjust to the need for dialysis and understand what it entails should become more widely available, she said.
Fresenius has nearly 40 programs of this kind across the U.S., and more are starting up. Over four to six weeks, people start receiving dialysis at a center and learn about specifics such as what they can eat, who's going to pay for dialysis, how their lives might change and how much support they'll need.
The goal is to help patients "cope with the diagnosis," Chatoth said. After going through transitional programs, he added, more than half of patients choose home dialysis.