California health regulators have allowed poor care to proliferate at nursing homes around the state, and the number of incidents that could cause serious injury or death has increased significantly in recent years, according to a stinging state audit released this week.
The state auditor singled out the California Department of Public Health for particular criticism, saying it had not performed necessary inspections or issued timely citations for substandard care. The audit also found that the department’s nursing home licensing decisions were inconsistent and lacking in transparency.
“Together, these oversight failures increase the risk that nursing facilities may not provide adequate care to some of the State’s most vulnerable residents,” California State Auditor Elaine Howle wrote.
Safety and accountability problems at nursing homes across the United States are rampant. Federal inspection reports, for example, show that infection control is routinely ignored. At the same time, the Trump administration has scaled back the use of penalties to punish nursing homes that put residents at risk of injury.
In California, confirmed cases of substandard care at nursing homes statewide increased by 31 percent from 2006 to 2015, according to the audit. And incidents of nursing home noncompliance that caused or could have caused serious injuries or fatalities rose by 35 percent in the same period.
In a written response, published in the auditor’s report, the public health department rejected the allegation of faulty oversight. “CDPH disagrees with this conclusion,” wrote Karen Smith, the agency’s director. “In fact, CDPH believes that the increased number of … deficiencies cited demonstrates that CDPH has increased its enforcement activities.”
But the audit showed that in the vast majority of cases where investigators found problems that could severely harm patients, the public health department failed to cite or fine the facility involved.
“There is an expectation of a level of care and safety,” said state Assemblyman Jim Wood (D-Healdsburg). “When that doesn’t happen, it’s really disconcerting.”
Wood said it was “very, very disturbing” that the public health department was not holding nursing homes accountable. The failure to issue citations, as well as delays in issuing them, are particularly worrisome, he said. “They are not doing their job.”
The California legislature ordered the audit last year after a request by Wood, who chairs the Assembly Health Committee, and Sen. Mike McGuire (D-Healdsburg).
In her written response, Smith dismissed the claim that licensing by the department was inconsistent, saying the auditor did not completely understand the process. But she agreed the department should issue citations in a more timely way and said it is working on that. The agency has begun training investigators to write citations properly, and it is creating a standard template for them, she said.
The quality of care at nursing homes will be critical as baby boomers age and demand for these services grows, the auditor wrote.
The state audit also investigated three large private nursing home operators whose net incomes have skyrocketed over the past decade — from less than $10 million each in 2006 to between about $35 million and $54 million in 2015. It said the owners of the three companies are swelling their profits by doing business with companies they own or in which they have a financial interest.
The three companies, Brius Healthcare Services, Plum Healthcare Group and Longwood Management Corporation, paid between $37 million and $66 million to related companies from 2007 to 2015, according to the audit.
The report singled out Brius, which has been the subject of media coverage, investigations and wrongful death lawsuits. One report, by the National Union of Healthcare Workers, claimed that the owner, Shlomo Rechnitz, steered millions of dollars to companies he owns to provide goods and services for his nursing homes. The state audit found that Brius had been cited for poor care more often than other nursing home operators in the state.
Mark Johnson, a lawyer representing Brius, said the audit’s quality of care assessment was flawed because of errors in the data. The company’s profits rose because the company grew, but profit per bed actually declined, he said.
Transactions between related companies “is the industry standard,” Johnson argued. “It leads to increased efficiency.”
The practice is becoming more commonplace around the nation. Kaiser Health News found last year that about three-quarters of nursing facilities in the country outsource services to companies that they control or in which they have an interest. Nursing homes that do it have higher rates of patient injury, Kaiser Health News found.
The risk of such arrangements, according to the audit, is that owners will inflate their prices to increase cross-company profits and that it is easier for commonly owned companies to engage in fraud and conceal it.
Medi-Cal, the state’s health insurance program for low-income people, is the state’s largest payer of nursing home care. The audit concluded, however, that because of built-in safeguards, it is “extremely unlikely” that Medi-Cal would pay for the profits companies earn from their related-party transactions.
Still, Michael Connors, with California Advocates for Nursing Home Reform, expressed alarm that nursing home operators are making such big profits by doing business with their own companies. Nursing home chains are using these deals to “siphon off money intended for care in order to pad and hide profits” — and that hurts residents, he said.
Legislation pending in the California State Assembly would increase the transparency of dealings among nursing home owners.
Now that employers, insurers, and government seem determined to curb growth in health care spending, the bets health systems placed on expensive medical technologies are less of a sure thing.
The Maryland Proton Treatment Center chose “Survivor” as the theme for its grand opening in 2016, invoking the reality-TV show’s tropical sets with its own Tiki torches, palm trees and thatched booths piled with pineapples and bananas.
It was the perfect motif for a facility dedicated to fighting cancer. Jeff Probst, host of CBS’ “Survivor,” greeted guests via video from a Fiji beach.
But behind the scenes, the $200 million center’s own survival was less than certain. Insurers were hesitating to cover procedures at the Baltimore facility, affiliated with the University of Maryland Medical Center. The private investors who developed the machine had badly overestimated the number of patients it could attract. Bankers would soon be owed repayment of a $170 million loan.
Only two years after it opened, the center is enduring a painful restructuring with investors poised for huge losses. It has never made money, although it has ample cash to finance operations, said Jason Pappas, its acting CEO since November. Last year it lost more than $1 million, he said.
Volume projections were “north” of the current rate of about 85 patients per day, Pappas said. How far north? “Upper Canada,” he said.
For years, health systems rushed enthusiastically into expensive medical technologies such as proton beam centers, robotic surgery devices and laser scalpels — potential cash cows in the one economic sector that was reliably growing. Developers got easy financing to purchase the latest multimillion-dollar machine, confident of generous reimbursement.
There are now 27 proton beam units in the U.S., up from about half a dozen a decade ago. More than 20 more are either under construction or in development.
But now that employers, insurers and government seem determined to curb growth in health care spending and to combat overcharges and wasteful procedures, such bets are less of a sure thing.
The problem is that the rollicking business of new medical machines often ignored or outpaced the science: Little research has shown that proton beam therapy reduces side effects or improves survival for common cancers compared with much cheaper, traditional treatment.
If the dot-com bubble and the housing bubble marked previous decades, something of a medical-equipment bubble may be showing itself now. And proton beam machines could become the first casualty.
“The biggest problem these guys have is extra capacity. They don’t have enough patients to fill the rooms” at many proton centers, said Dr. Peter Johnstone, who was CEO of a proton facility at Indiana University before it closed in 2014 and has published research on the industry. At that operation, he said, “we began to see that simply having a proton center didn’t mean people would come.”
Sometimes occupying as much space as a Walmart store and costing enough money to build a dozen elementary schools, the facilities zap cancer with beams of subatomic proton particles instead of conventional radiation. The treatment, which can cost $48,000 or more, affects surrounding tissue less than traditional radiation does because its beams stop at a tumor rather than passing through. But evidence is sparse that this matters.
And so, except in cases of childhood cancer or tumors near sensitive organs such as eyes, commercial insurers have largely balked at paying for proton therapy.
“Something that gets you the same clinical outcomes at a higher price is called inefficient,” said Dr. Ezekiel Emanuel, a health policy professor at the University of Pennsylvania and a longtime critic of the proton-center boom. “If investors have tried to make money off the inefficiency, I don’t think we should be upset that they’re losing money on it.”
Investors backing a surge of new facilities starting in 2009 counted on insurers approving proton therapy not just for children, but also for common adult tumors, especially prostate cancer. In many cases, nonprofit health systems such as Maryland’s partnered with for-profit investors seeking high returns.
Companies marketed proton machines under the assumption that advertising, doctors and insurers would ensure steady business involving patients with a wide variety of cancers. But the dollars haven’t flowed in as expected.
Indiana University’s center became the first proton-therapy facility to close following the investment boom, in 2014. An abandoned proton project in Dallas is in bankruptcy court.
California Protons, formerly associated with Scripps Health in San Diego, landed in bankruptcy last year.
A number of others, including Maryland’s, have missed financial targets or are hemorrhaging money, according to industry analysts, financial documents and interviews with executives.
The Hampton University Proton Therapy Institute in Virginia has lost money for at least five years in a row, recording an operating loss of $3 million in its most recent fiscal year, financial statements show.
The Provision CARES Proton Therapy Center in Knoxville, Tenn., lost $1.7 million last year on revenue of $23 million — $5 million below its revenue target. The center is meeting its debt obligations, said Tom Welch, its president.
Centers operated by privately held ProCure in Somerset, N.J., and Oklahoma City have defaulted on debt, according to Loop Capital, an investment bank working on deals for new proton facilities.
A facility associated with the Seattle Cancer Care Alliance, a consortium of hospitals, lost $19 million in fiscal 2015 before restructuring its debt, documents show. Patient volume is growing but executives “continue to be disappointed in the slower-than-expected acceptance of proton therapy treatment” by insurers, said Annika Andrews, CEO of SCCA Proton Therapy.
A center near Chicago lost tens of millions of dollars before restructuring its finances in a 2013 sale to hospitals now affiliated with Northwestern Medicine, documents filed with state regulators show. The facility is “meeting our budget expectations,” said a Northwestern spokesman.
Representatives from ProCure and the facilities in San Diego and Hampton did not respond to repeated requests for interviews.
“In any industry that’s really an emerging industry, you often have people who enter the business with over-exuberant expectations,” said Scott Warwick, executive director of the National Association for Proton Therapy. “I think maybe that’s what went on with some of the centers. They thought the technology would grow faster than it has.”
In the absence of evidence showing protons produce better outcomes for prostate, lung or breast cancer, “commercial insurers are just not reimbursing” for these more common tumors, said Brandon Henry, a medical device analyst for RBC Capital Markets.
The most expensive type of traditional, cancer-fighting radiation — intensity modulated radiation therapy — costs around $20,000 per treatment, while others cost far less. The government’s Medicare program for seniors covers proton treatment more often than private insurers but is insufficient by itself to recoup the massive investment, analysts said.
The rebellion by private insurers “is very, very good” and may signal the health system “is finally figuring out how to say no to low-value procedures,” said Amitabh Chandra, a Harvard health policy professor who has called proton facilities unaffordable “Death Stars.”
Proton centers are fighting back, enlisting patients, legislators and nonprofits to push for reimbursement. Oklahoma has passed and Virginia has considered legislation to effectively require insurers to cover proton therapy in more cases.
An entire day at the 2017 National Proton Conference in Orlando was dedicated to tips on getting paid, including a session titled “Strategies for Engaging Health Insurance on Proton Therapy Coverage.”
Proton facilities tell patients the therapy is appropriate for many kinds of cancer, never mentioning the cost and guiding them through complicated appeals to reverse coverage denials. The Alliance for Proton Therapy Access, an industry group, has online software for generating letters to the editor demanding coverage.
In hopes of navigating a difficult market, many new centers are smaller — with one or two treatment rooms — and not as expensive as the previous generation of units, which typically have four or five rooms, like the Baltimore facility, and cost $200 million or more.
Location is also critical. Treatment requires near-daily visits for more than a month, which may explain why larger centers such as Maryland’s never attracted the out-of-town business they needed.
To make the finances work, hospitals are combining forces. The first proton beam center in New York City is under construction, a joint project of Memorial Sloan Kettering, Mount Sinai and Montefiore Health System.
Smaller facilities, which can cost less than $50 million, should be able to keep their rooms full in many major metro areas, said Prakash Ramani, a senior vice president at Loop Capital, which is helping develop such projects in Alabama, Florida and elsewhere.
Maryland’s center hopes to break even by year’s end, executives said. That will involve refinancing, converting to nonprofit, inflicting losses on investors and issuing municipal bonds.
But plans call for four centers soon to be open in the D.C. area.
“It’s a real arms race,” said Johnstone, the former proton-center CEO, who has co-authored papers on proton-therapy economics. He is now vice chair of radiation oncology at Moffitt Cancer Center in Tampa, which doesn’t have a proton center. “What places need now are patients — a huge supply of patients.”
Millions of low-income Californians eligible for food stamps are not receiving the benefit, earning the state one of the lowest rankings in the nation for its participation in the program.
Just three states — all much more conservative than the Golden State — have lower rates of participation, according to the latest available federal data. The poor performance stands in sharp contrast to California's leadership on enrollment in Medi-Cal, the state’s version of Medicaid, which also serves people living in low-income households.
The reasons for California’s low rate of participation in the food assistance program, known as CalFresh, remain a “persistent puzzle,” said Kim McCoy Wade, chief of the CalFresh branch of the state’s Department of Social Services. But she and others suggest it may be due to the less-than-optimal quality of customer service and a bulky bureaucracy.
About 4.1 million Californians, or 70 percent of those eligible, are enrolled in CalFresh. That leaves about 2 million who could be getting the benefit but aren’t, according to a January report citing the 2015 federal data.
The national average is 83 percent. Several states — including Illinois, New Mexico and Oregon — report 100 percent enrollment of those who qualify for the food stamp program, known at the federal level as the Supplemental Nutrition Assistance Program, or SNAP.
Medi-Cal now serves more than 13.5 million people, or about one-third of California's population, a number significantly boosted by Medicaid's expansion under the Affordable Care Act. Only about 322,000 people who qualify for Medi-Cal aren’t signed up, according to a 2016 report by University of California-Berkeley researchers. They estimate that more than 90 percent of those eligible for Medi-Cal who don’t have another source of insurance are enrolled.
But California has begun leveraging its vast pool of new Medi-Cal beneficiaries to boost enrollment in CalFresh. Officials are building upon relationships between county welfare departments and new Medi-Cal enrollees, using electronic records on Medicaid recipients to identify food stamp candidates and then guiding them through the enrollment process.
“We are taking the successes from the Affordable Care Act and are turning to our next-biggest program and trying to apply those lessons,” said McCoy Wade. “The Medi-Cal-CalFresh connection is something where we think there is a lot of room to grow.”
The push comes as both programs are under threat from Washington, D.C. Just last month, Republicans in Congress unveiled a farm bill that would mandate stricter work requirements for SNAP beneficiaries. Several times over the past few years, President Donald Trump and congressional Republicans have proposed overhauling the Medicaid program to rein in costs.
The food stamp program is administered at the county level — and there are 58 counties. Only 10 states run their programs that way. “Because we are decentralized … it takes us longer to move the whole ship,” McCoy Wade said.
However, that explanation does not fully address the issue in California, since Medicaid, too, is run by counties.
About 74 million Americans are on Medicaid and about 42 million people are in the food program.
“Doing things to help integrate the programs can be mutually beneficial, both for saving on administrative costs and being able to enroll more families,” said Michael Katz, a research associate at the Urban Institute. SNAP and Medicaid have different eligibility rules, but they serve similar populations.
“It’s not a perfect overlap, but it is a pretty close Venn diagram,” said Jared Call, managing nutrition policy advocate at California Food Policy Advocates.
Several California counties have tried to be proactive in enrolling food stamp candidates. San Francisco County placed a CalFresh eligibility worker at a public hospital and a community clinic. Los Angeles County mailed over 1 million flyers to Medi-Cal recipients who potentially qualified for food stamps.
San Bernardino County has self-service kiosks and staff members at the entrances of county offices, who help people enroll in CalFresh if they are interested. “It’s a one-stop shop,” said Nancy Hillsdale, who manages an office in Colton, Calif.
But residents can be reluctant to apply. Some immigrants living in the country legally fear that if they receive food stamps it may affect their chances of becoming citizens later. (Undocumented immigrants don’t qualify, but any family members who are citizens do.) Others feel the “stigma around food stamps,” said Gladys Deloney, Sacramento County’s deputy director of human services. That sentiment is not as prevalent in seeking help with medical expenses, she said.
The percentage of Medi-Cal beneficiaries enrolled in CalFresh varies widely by county. In 2016, for example, San Francisco County enrolled 31 percent of its Medi-Cal recipients in the food stamp program compared with nearly double that rate in Fresno County. A coalition of food advocates recommended last year that the state set a target for counties, and that the counties launch campaigns to raise awareness about food assistance.
In San Diego County, officials printed CalFresh materials for health fairs and sent texts to everyone who applied for Medi-Cal with a link to apply for the food benefits, said Rick Wanne, director of eligibility operations for the county. But Wanne said enrolling people in CalFresh is a lot more difficult than in Medicaid. “There is a laundry list of long-standing … rules and regulations that make it difficult to get on the program,” he said.
For example, applicants for CalFresh must be re-interviewed every year and update their information every six months. Medicaid, by contrast, does annual renewals without requiring interviews.
McCoy Wade said CalFresh eliminated some of the most burdensome requirements, including providing fingerprints, and it’s starting to make a difference. The state increased its participation rate from 66 percent to 70 percent in the most recent report. That occurred as the economy improved and fewer needed the help. “We are closing the gap,” though there is still work to be done, McCoy Wade said.
Lack of transportation, long lines at county offices and lack of flexibility in setting appointment times may also contribute to low participation, county officials said. And paperwork often gets mailed to residences, making it harder for homeless people or those who move frequently to stay enrolled. That’s what happened to 25-year-old Crystle Conant, who lives only part time at her father’s house in San Bernardino County.
“When I swipe my card at the store and it gets declined, then I know,” she said. “I haven’t renewed in time.”
In a surprising reversal, Dr. Tom Price said he now thinks getting rid of the individual mandate was a bad idea.
Yet this is the same Tom Price who only last summer laid the groundwork for the mandate’s eventual dismantling, saying it was “driving up the costs for the American people.”
In some of his first public remarks since resigning as secretary of Health and Human Services amid a scandal about his travel expenses last September, Price criticized the elimination of the Affordable Care Act’s penalty for those who don’t have insurance.
“There are many, and I’m one of them, who believes that that actually will harm the pool in the exchange market,” he said Tuesday, as one of several dozen keynote speakers at the annual World Health Care Congress in Washington. “Because you’ll likely have individuals that are younger and healthier not participating in that market, and consequently that drives up the costs for other folks within that market.”
At the conference, Price re-introduced himself — a third-generation physician who did “a short stint at HHS” — to insurers, drugmakers and other health industry types.
Washington could be forgiven for thinking they had met before.
As a congressman and then HHS secretary, he’d been a vocal critic of the ACA, lambasting its many elements — including the individual mandate — and pressing for the law’s full repeal. Months after Price’s resignation, that penalty was removed by Congress as part of a tax bill even as the ACA itself remained, having withstood multiple Republican attempts to kill it.
It has been seven months since Price stepped down amid reports he misspent hundreds of thousands of dollars of taxpayer money on private charter and military air travel. Price sidestepped questions Tuesday about the Trump administration and his change of heart on the individual mandate.
But Price’s re-emergence offered a snapshot of a tarnished former Trump administration official working on his next act. In January, he joined the board of the Atlanta-based Jackson Healthcare, a health care staffing and technology company.
A conference spokeswoman did not respond to inquiries about the decision to invite Price and whether he was paid to give remarks. The conference organizers played down Price’s remarks, billed as “a candid perspective” on the prospects for efforts to repeal and replace the Affordable Care Act and timed early on the third day of the four-day conference. He was conspicuously absent from the headshots of featured speakers splashed across the conference website and cagey about his plans for the future, referring only to his “advisory roles” when asked.
Gone was the Tom Price who, as a leading critic of the ACA while a Republican congressman from Georgia, attracted the attention of President Donald Trump. But it was the administration’s fight against the ACA that, by many accounts, cost him Trump’s support.
Price “better get the votes,” Trump said in a speech last July, days before the Senate rejected one of the last in a round of attempts to repeal President Barack Obama’s signature health care law. “Otherwise I will say, ‘Tom, you’re fired’.”
“From a policy standpoint, the repeal-and-replace battle last year was kind of the height of political frustration, wasn’t it?” Price mused to the audience Tuesday.
Instead of hammering the ACA, Price offered a brisk, occasionally perfunctory assessment of the health care landscape, ticking off a list of challenges (regulation, bad; wearables such as Fitbits, good) and developments (the health care market, stable; association health plans, under review). The states are doing their own assessments and reacting to it — and rightfully so, he said, pointing to decisions by Republican-led states such as Utah to expand Medicaid. (He had opposed the expansion of Medicaid as a congressman.)
On this, Price could offer an expert up-close opinion: “These are states that have looked at the situation, don’t necessarily see a solution coming out of Washington.”
When an inmate needs to see a medical specialist, getting that care can be complicated.
Prisons are often located in rural areas far from medical centers that have experts in cancer, heart and other disease treatments. Even if the visit just involves a trip to a hospital across town, the inmate must be transported under guard, often in shackles.
The whole process is expensive for the correctional facility and time-consuming for the patient.
Given the challenges, it’s no wonder many correctional facilities have embraced telemedicine. They use video conferencing to allow inmates to see medical specialists and psychiatrists without ever leaving the facility.
A survey by the federal Centers for Disease Control and Prevention of prison health care in 2011 found that 30 states out of 45 that responded said they used telemedicine for at least one type of specialty or diagnostic service. The participating states reported that telemedicine was most commonly used for psychiatry (62.2 percent) and cardiology (26.6 percent), according to the research, which was published in 2016.
Among the corrections facilities offering these services is Rikers Island, which houses nine jails on an island near LaGuardia Airport in New York City. It recently began to provide telehealth services for female inmates who need oncology, rheumatology and hematology services. Other specialties are expected to be added in the future.
Male inmates on Rikers have been receiving telehealth services since 2016. Roughly 40 inmates have virtual visits each month with specialists in those same areas as well as infectious disease, urology, dermatology, pulmonology and gastroenterology.
“Initially we implemented [telehealth] for the efficiency part, to avoid hours of transport,” said Dr. Ross MacDonald, chief medical officer for NYC Health + Hospitals/Correctional Health Services, which runs the health care services at Rikers. “But what we’ve learned over time is that it really improves clinical care.” Telehealth allows the referring physician at the jail to consult with the specialist at the hospital as a team, and together clarify information for the patient, MacDonald said.
Clinicians provide regular primary care at the jail. When a medical concern is identified that requires a specialist’s attention, the patient visits the jail’s medical clinic with the provider who referred her, and the two of them go over the patient’s medical history and symptoms with a specialist at NYC Health + Hospitals/Elmhurst in Queens who is visible on the monitor. If vital signs need to be checked or other tests performed, the primary care provider can handle that and relay the information to the specialist.
If after that meeting, a face-to-face exam with the specialist is necessary, that would be scheduled, MacDonald said.
“This is not meant to replace in-person visits, it’s meant to complement them,” he said.
Still, some prisoner advocates worry about the increasing use of telemedicine. Khalil Cumberbatch said he’s concerned that the video visits may heighten inmates’ feelings of isolation. Cumberbatch spent nearly a year on Rikers Island, first as he awaited trial on first-degree robbery charges in the early 2000s and later when he appealed his conviction.
He now works as the associate vice president of policy at the Fortune Society, a nonprofit organization that supports efforts to help prisoners re-enter society after incarceration.
“You’re removing contact with the outside world,” he said. “There’s a level of engagement that can be lost when you’re doing it on the screen.”
But for sick prisoners, that may not be a priority, others say.
“Lots of them don’t want to go to the outside facility,” said Dr. Edward Levine, the medical director for prison care for Ohio State University Wexner Medical Center, which has been doing telemedicine with the Ohio Department of Rehabilitation and Correction since 1995. “These people are sick. They have to get on a bus, it’s bumpy, and there are delays, and if [they’re] not feeling well, they don’t like it.”
Levine estimates he sees up to 150 gastroenterology patients a year at Ohio’s 29 prisons through telemedicine visits. “You develop a relationship with them the same as you would if you saw them in a clinic,” he said.
Although inmates may owe copayments if they see a provider for run-of-the-mill aches and pains, they won’t generally have to pay for specialty care, whether provided on-site or through telemedicine, said Dr. Anne Spaulding, an epidemiologist and associate professor at Emory University’s public health school in Atlanta who has worked as a medical director in corrections. That’s because a medical provider typically initiates specialty care. Inmates are more commonly charged for medical visits that they initiate, she said.
Telemedicine can improve continuity of care and help patients keep chronic conditions under control. In one study of HIV-infected adults incarcerated at Illinois Department of Corrections facilities, 91 percent of telemedicine patients achieved complete suppression of the virus during the first six visits, compared with 59 percent of patients who received standard care on-site at the facilities. The study credited the results to having specialists provide evidence-based, up-to-date care through telemedicine, rather than relying on primary care physicians at the correctional facilities.
“If we can see them in real time without having to leave the facility, we get better outcomes,” said Dr. Jeremy Young, an infectious-disease specialist and associate professor of medicine at the University of Illinois at Chicago, who was the lead author of the study.
Back in 2008, Mary Hogden was homeless, living on the streets of Berkeley, Calif.
“I got beat up really badly out there,” says Hogden, 62. “It’s not a safe place for women.”
She landed in the hospital and then in a boarding home for adults with mental illness. But her big break came when she started volunteering for a mental health program called the Pool of Consumer Champions, run by Alameda County.
Participants, who offer each other support, also advise the county’s behavioral health division on how to better meet consumers’ needs. The county has adopted some of the group’s recommendations, Hogden says.
“People rallied around me when I was unstable and struggling with my mental health,” Hogden recalls.
She didn’t know at the time that the program was paid for by the state’s Mental Health Services Act (MHSA). But after two years as a volunteer, she became a paid staffer and learned that the program wouldn’t exist without that funding.
“I wouldn’t be where I’m at in my wellness and recovery had it not been for the Mental Health Services Act,” Hogden says.
In 2004, Californians approved the act, originally known as Proposition 63, which imposes a 1 percent tax on personal income over $1 million to help counties expand mental health care services.
The tax has raised billions, and Gov. Jerry Brown expects it will bring in roughly $1.8 billion in the coming fiscal year.
“Counties were able to take Mental Health Services Act dollars and either revamp existing programs or completely create new programs that didn’t exist at all,” says James Wagner, deputy director of Alameda County Behavioral Health Care Services.
The act has been “wildly successful” at improving the ability of counties to respond to the mental health needs of their residents, he says.
But counties and the state have faced criticism from the Little Hoover Commission, an independent state oversight agency, and others for their implementation of the law. In February, a state audit accused counties of hoarding the mental health money — and the state of failing to ensure the money was being spent.
Still, there’s no question “these programs have helped hundreds of thousands of people,” says Heidi Strunk, president of the California Coalition for Mental Health.
A 2016 compilation of MHSA-funded programs across the state lists page after page of offerings that address homelessness, suicide, caregivers, veterans, children and dozens of other topics and populations, including scholarships for college students pursuing degrees in mental health.
But what’s available — and to whom — depends on your county. For instance, most programs are for low-income residents, but that’s not true across the board. Unfortunately for consumers, researching county programs and determining whether you or your loved ones qualify may not be easy.
“It’s so hard for individuals and families to know what kind of services are available, especially because there’s no statewide standard,” says Jessica Cruz, CEO of NAMI California, an advocacy group for individuals, and their families, who have been affected by serious mental illness.
“Access is an issue,” Cruz says. “There’s not one singular place to look and see what’s available.”
Strunk’s coalition is advocating for a statewide, interactive map that will allow you to click on your county and see its Mental Health Services Act programs. NAMI California, which compiled the 2016 list of programs statewide, is working on an update, but that won’t be out until this summer, Cruz says. (Check NAMI California’s website at namica.org for the update.)
“We’re still trying to resolve issues with how to get information to the public,” Strunk says.
Until there’s a central information source, you will have to use your research skills, plus a little telephone work.
To get started, Strunk suggests Googling your county’s name and the term “MHSA coordinator.” Then call that person. You can also find your county’s MHSA plan online.
Some counties have toll-free hotlines that will help connect you with appropriate programs based on your needs. (In Orange County, for example, it’s 855-625-4657. In Alameda County, dial 800-491-9099. Riverside County residents can call 800-706-7500.)
“Each county webpage looks different,” Strunk warns. “Some counties have super user-friendly landing pages, for some counties it’s buried, and some you can’t find at all.”
MHSA programs primarily serve recipients of Medi-Cal, California’s version of the federal Medicaid program for low-income residents, and uninsured people with serious mental illnesses. But there are also services for a broader range of the population.
About 20 percent of Mental Health Services Act dollars are earmarked for “prevention and early intervention,” and these are more likely to serve a wider cross section of people.
Sharon Ishikawa, Orange County’s Mental Health Services Act coordinator, points to OC ACCEPT as one example. The program provides counseling, vocational support and other services to people — and their families — who are confronting challenges related to sexual orientation and gender identity.
“It is open to anybody with or without insurance,” says Dawn Smith, a program manager who oversees several of the county’s MHSA-funded services. “They might have a really high deductible and don’t have a way to pay that or they might not be able to afford the copay.”
But the majority of participants are uninsured, Smith says.
NAMI, which has chapters across the state, operates some MHSA-funded programs on behalf of counties, and eligibility is not based on insurance status, Cruz says.
“For us, anybody’s eligible. Anybody can come to a family-to-family class. Anybody can come to a support group. You don’t have to be referred by the county,” she explains.
NAMI Orange County runs the MHSA-funded Peer Connector program, says Diana Fernandez, one of the peer mentors.
The program is for people, regardless of income, who have a family member or friend who is struggling with mental illness, a learning disorder or a behavioral problem. Participants can have a one-hour phone call each week for up to 12 weeks with peer mentors who have had personal experience finding help for themselves or loved ones, Fernandez explains.
Fernandez has five children, and two have struggled with dyslexia and attention deficit hyperactivity disorder (ADHD).
Last week, Fernandez spoke with a man who told her he felt suicidal. She stayed on the phone and connected him with the county’s crisis assessment team, then waited until she knew he was on his way to the hospital.
That situation was unusual, she says. More typically, Fernandez helps parents of children who are struggling in school, or caregivers who are emotionally and physically spent.
“We assure clients that they are normal and typical for what they’re going through,” she says. “That gives them a feeling of hope they may not have had before.”
Pharma businesses overall made political donations of $12.1 million last year, down from a $13.6 million election-year surge in 2016 but 9 percent higher than 2015.
Business looked challenging for Novo Nordisk at the end of 2016. As pressure mounted over the pharma giant’s soaring insulin prices, investors drove its stock down by a third on fears that policymakers would take action, limit prices and hurt profits.
Then things got worse. A Massachusetts law firm sued the company and two other pharma firms on behalf of patients, claiming that high insulin prices of hundreds of dollars a month forced diabetics to starve themselves to minimize their blood sugar while skimping on doses. At least five states began investigating insulin makers and their business partners.
As scrutiny rose, Novo Nordisk engaged in what analysts say is a time-honored response to public criticism. It aggressively ratcheted up spending to spread its influence in Washington and to have a louder say in the debates over drug prices.
The drugmaker’s political action committee spent $405,000 on federal campaign donations and other political outlays last year, more than in 2016 — an election year — and nearly double its allocation for 2015, data compiled by Kaiser Health News show.
“We remain committed to being part of the discussion,” said Tricia Brooks, head of government relations and public affairs for Novo Nordisk, acknowledging scrutiny over insulin prices but saying the company has many other issues to work on with policymakers. “I don’t want us to run away from it and hide or keep our head down and wait for it to roll over.”
Novo Nordisk also spent $3.2 million lobbying Congress and federal agencies in 2017, its biggest-ever investment in directly influencing U.S. policymakers, according to the Center for Responsive Politics.
Part of that surge included summoning more than 400 Novo Nordisk employees to contact lawmakers and their staffs on Capitol Hill, “a huge increase from anything we’ve ever done before,” Brooks said.
Taken together, the increases represent a “major corporate policy shift” for the company and appear to be a classic business response to growing political risk, said Kent Cooper, a former Federal Election Commission official who has tracked political money for decades.
The pharma industry as a whole has behaved similarly, cranking up political contributions and lobbying. Meanwhile, despite much talk about change, Congress and the Trump administration have done little to control drug prices or threaten drug-company profits.
Pharma businesses overall made political donations of $12.1 million last year, down from a $13.6 million election-year surge in 2016 but 9 percent higher than the haul for 2015, according to the KHN analysis. Pharma industry lobbying expenses surpassed $171 million last year, the highest level since 2009, during negotiations over the Affordable Care Act, according to CRP.
“It’s been hot in the health care arena for — how many years now?” said Steven Billet, who teaches lobbying and PAC management at George Washington University. “Anybody in this world now is sitting there thinking, “When I go back to the board next year, I’m going to ask for 15 percent more in my [lobbying and campaign finance] budget. Because this isn’t going away.’”
Like most big corporations, Novo Nordisk runs a political action committee, or PAC, which solicits employee donations and gives the proceeds to political candidates’ campaigns. The company is Danish. Only workers who are U.S. citizens or permanent residents are allowed to support the PAC.
Like many PACs, Novo Nordisk spreads money to both parties, concentrating on powerful committee members and other leaders. Since 2013 it has given $22,500 to House Speaker Paul Ryan, a Republican, and $20,472 to South Carolina’s James Clyburn, a member of the Democratic House leadership.
Brooks gave the PAC $4,370 last year, the data show. Some employees gave as little as $20 or $30.
The firm’s influence-seeking has grown along with its U.S. sales, which went from hundreds of millions of dollars in the early 2000s to some $9 billion last year. Its biggest business is diabetes, including various types of insulin whose list prices have more than doubled in recent years.
The wholesale list price for a vial of Novo Nordisk’s Levemir, a long-acting insulin, went from $144.80 in 2012 to $335.70 in January, when the price rose 4 percent, according to Connecture, a research firm.
Even Alex Azar, a former Eli Lilly executive who became Health and Human Services secretary in January, said in his confirmation hearing that “insulin prices are high, and they’re too high.” Along with Novo Nordisk and Sanofi, Lilly is one of the three big insulin makers under investigation by state attorneys general for price increases that seem suspiciously similar in size and timing.
Sanofi and Lilly both spent more last year on political donations and federal lobbying than Novo Nordisk. Lilly’s political spending was $548,100 for 2017, up 12 percent from 2015, the previous off-election year, the data show. Sanofi’s was $527,200, down from 2015.
But potential insulin price limits threaten Novo Nordisk more than those companies because diabetes-related drugs account for an exceptionally big portion of its business, analysts said. Several proposals under consideration by Congress could lower insulin prices or limit future increases.
One would allow the Medicare program for seniors to negotiate prices for covered drugs, thus lowering the cost.
Other proposals would make it easier for competing, “biosimilar” alternatives to break through the thicket of patents created by sellers of complex drugs such as insulin. Others would bring more transparency, requiring companies to publish and justify price increases.
None of the proposals has made it out of congressional committees. In the face of inaction by Washington, Novo Nordisk’s stock has recovered much of the ground it lost in 2016.
Novo Nordisk rejects suggestions that it coordinated price increases with competitors. So do Sanofi and Lilly.
List prices such as those tracked by Connecture don’t reflect what patients or their insurers ultimately pay, said Novo Nordisk spokesman Ken Inchausti. Growing discounts and rebates substantially reduced the reported list price, he said.
Even including discounts, however, the company’s net profit margin for 2017 was 34 percent, its highest since at least 2000, when it was half that high.
Official filings show Novo Nordisk lobbyists have been weighing in on numerous measures related to drug prices, including proposals to import less expensive drugs from Canada.
The company lobbies Washington on a wide range of issues including diabetes prevention, budget matters, chronic disease and making obesity an accepted medical disease that insurers will pay to prevent, Brooks said.
But last year’s increase in campaign donations and lobbying doesn’t look like business as usual for Novo Nordisk, said Billet, a former AT&T lobbyist who directs GWU’s Legislative Affairs program.
“I’m not surprised,” he said. “They’ve obviously had some issues recently. This is maybe a predictable enough element in their strategy.”
As she left a 12-hour day on the labor and delivery shift, Dr. Katie Merriam turned off her pager.
"I don't know what I'd do without it, you know? It's another limb. I always know where it is," she said, laughing.
The third-year resident in obstetrics and gynecology at the Carolinas Medical Center hospital in Charlotte, N.C., works in a medical specialty dominated by women, treating women. She feels a special connection to her patients, Merriam said.
"You just, you can feel what they feel and understand why they feel certain ways. I do feel a special bond," she said.
Nationally, 82 percent of doctors matching into OB-GYN residency programs are women. Many OB-GYN patients say they prefer female doctors. Merriam's residency class is a bit of an anomaly — half of its members are men. Though it's nice to work with so many women, Merriam said, she and some of her female colleagues also like the perspective that men bring to the work environment.
"No one could really pinpoint about what balance they bring, but there's something nice about having them," she said.
It's important to have men in the field, she said, if only to continue to give patients options in their choice of providers. But most of her friends and other women she talks to, she said, want female doctors.
Blake Butterworth, a fourth-year obstetrics and gynecology resident at the Medical University of South Carolina in Charleston, said he doesn't take it personally when he hears that sort of thing from a patient.
"I don't get discouraged; I don't get offended," Butterworth said. "I gladly hand that patient off."
He's one of only two male residents in the program of 24 at MUSC and said he finds it rewarding when he can win a new patient's confidence.
"I have patients that clearly express disdain to have to see a guy," he said. "Then I develop rapport with her. And she says, 'I expected you to be X, Y, Z, and you were better than that.'"
Butterworth said he chose obstetrics and gynecology because it lets him develop long-term relationships with patients — providing routine OB-GYN care and more complicated surgeries, if need be.
"Once you really get into it, and get involved in it, I don't think that bias [that the field is best left to women] holds true," he said.
Butterworth said he believes it is incumbent on male OB-GYNs to talk to male medical students about the benefits of having men in the field. Students need to know it's OK to have an interest in the field, he said, and that they will find work.
In fact, says Dr. Ashlyn Savage, an associate professor of obstetrics and gynecology at MUSC, it may be the opposite.
"In an effort to really diversify the applicant pool, we will apply in some cases different screening standards to decide who we are going to interview," Savage said. "For example, we might consider an applicant with a slightly lower board score — just to enhance how many men we are interviewing and considering."
It has been a challenge to find male OB-GYNs for the program, she said. The gender that at one time dominated the field is now at some schools considered a diversity hire. But Savage questions whether balancing the number of men and women in the specialty is as important as racial or ethnic diversity.
"The interesting thing to me is the primary motivation to [seek a diverse candidate pool] is so that patients have the opportunity to seek out physicians who might...feel like themselves," she said. "In this particular case...all of the patients for OB-GYNs are women."
Among practicing OB-GYNs in the U.S., a little fewer than half are men, according to the American College of Obstetricians and Gynecologists, formerly known as the American Congress of Obstetricians and Gynecologists. But ACOG predicts that 10 years from now, two-thirds of the doctors in that specialty will be female.
Still, male doctors hold many key posts in OB-GYN professional organizations.
"Leadership tends to be held by people who are older," Savage said. "And we are still in a scenario where [more of] our older faculty tend to be men."
A study published last fall found that women are underrepresented in leadership roles in medical school departments of obstetrics and gynecology throughout the country. That ratio was most lopsided in men's favor in the South.
It's perhaps only a matter of time before that, too, changes. Savage said she recently learned that her program's incoming class of OB-GYN residents next year will be all female.
President Donald Trump has railed against the high price of prescription drugs and famously bemoaned how pharmaceutical companies are “getting away with murder.” Yet, many Americans aren’t seeing a change in what they pay out-of-pocket.
Trump promised a speech on prescription drug prices, and it’s expected anytime.
Here’s a look at the rhetoric thus far versus the results.
"You’ll be seeing drug prices falling very substantially in the not-too-distant future, and it’s going to be beautiful."
What’s Happening:
The White House and administration leaders, including Health and Human Services Secretary Alex Azar and Food and Drug Administration Commissioner Scott Gottlieb, say increasing competition is a priority. Gottlieb — whom Trump has called a star — said the FDA has approved a record number of generic drugs and eliminated a backlog in approvals.
The agency is looking for ways to boost price competition for biologics, which are made from natural sources and are among the most expensive drugs on the market. Currently, pharmacists cannot substitute a lower-cost “biosimilar” version when the doctor prescribes a biologic. FDA has proposed “interchangeability” rules that could change the status quo.
The Outlook:
Driving down drug prices through competition may take awhile. That’s because even after gaining FDA approval, generic drugs often have trouble being launched, according to Chip Davis, president of the Association for Accessible Medicines, a trade group for makers of generics and biosimilars. Only three of nine biosimilars approved are available for patients, largely due to patent protections.
"We have to get the prices of prescription drugs way down and unravel the tangled web of special interests that are driving prices up for medicine and for really hurting patients."
What’s Happening:
To say health care is complicated is an understatement. The system that dictates how patients get prescriptions and what they pay includes an array of buyers and payers, such as insurance companies and pharmacy benefit managers. In February, the White House pitched the idea of passing on the discounts and rebates negotiated by PBMs, the financial middlemen between insurers and drugmakers, to seniors who buy drugs through Medicare Part D. This idea, first floated under President Barack Obama’s administration, would mean seniors would pay less out-of-pocket but could also increase premiums if insurers took on added costs.
The Outlook:
Late last year, the administration released a request for public comment on this idea, and pressure is building for the administration to take action. “It’s the one thing you could say that has immediate benefit to consumers,” said John Rother, president of the National Coalition on Health Care. But House Minority Leader Nancy Pelosi said she isn’t convinced much will really change: “At this point, no one is surprised that President Trump has found another reason not to act on prescription drug costs,” Pelosi said in a statement to Kaiser Health News. “While President Trump is making more excuses, Democrats will be discussing real solutions.”
"I have directed my administration to make fixing the injustice of high drug prices one of our top priorities for the year. And prices will come down substantially. Watch."
What’s Happening:
The White House has pitched moving drugs covered under Medicare Part B into the popular Part D program. Part B is the bucket of Medicare that covers drugs that are administered in hospital outpatient settings and doctor’s offices, including expensive chemotherapy and rheumatoid arthritis infusions. Insurers compete for business in Part D and negotiate prices for their members, but there is no such price negotiation in Part B. Total drug spending in the Part B program was about $26 billion in 2015, and the upward trend is ominous.
The Outlook:
While providers and insurers are likely to fight it, there’s no reason the idea wouldn’t work, said Tom Scully, the former Centers for Medicare & Medicaid Services administrator who designed the Medicare prescription drug programs in the early 2000s. He worked closely with HHS’ current leader, Azar, who was then general counsel for HHS. “There’s no reason to have Part B,” said Scully, adding that moving the drugs under Part D would require price negotiation. “If you really want to drive down drug prices, you have to put somebody’s money at risk other than the taxpayers’.”
"For Medicare, for Medicaid, we have to get the prices way down, so that’s what we’re going to be talking about."
What’s Happening:
When the White House announced Trump’s forthcoming speech, it also noted that it would coincide with a formal request for information from Health and Human Services on various drug-pricing ideas. The request leaves the door wide open for proposed changes in Medicare and Medicaid. Several experts predict the administration will test payment models through demonstrations under the broad authority of the Center for Medicare & Medicaid Innovation, or CMMI.
The Outlook:
Ideas such as moving drugs to Part D as well as allowing certain states to create drug lists under their Medicaid formularies, as Massachusetts has requested, and other value-based pricing models would be possible under a CMMI demonstration, said Andrea Harris, who leads the health care team at Height Capital Markets. Still, this process could take awhile, and Harris said, “I don’t think anything will meaningfully impact drug-related stocks between now and the midterms [elections].”
"Prescription drug prices are out of control. The drug prices have gone through the roof. … The drug companies, frankly, are getting away with murder.”
What’s Happening:
While there has been no direct proposal that would force the pharmaceutical industry to lower the launch price of its drugs, the industry lost a battle last month when Congress reduced how much seniors would pay for prescription drugs in Medicare. It was a rare loss and signaled that the powerful industry may be in a defensive position. And Trump has another card to play with the Federal Trade Commission.
The Outlook:
Trump has nominated Joe Simons, a Washington antitrust lawyer, to lead the FTC. During his nomination hearings in February, he said he’s “very concerned” with price increases for prescription drugs. The agency, which polices anticompetitive behavior, has several vacancies to fill.
After Keith Beck died of bile duct cancer last year, family members said more than 900 people showed up to pay respects to the popular athletic director at the University of Findlay in northwestern Ohio.
Many were former students who recalled acts of kindness during Beck's nearly 30-year career: $20 given to a kid who was broke, textbooks bought for a student whose parents were going through bankruptcy, a spot cleared to sleep on Beck's living room floor.
But few knew about Beck's final gesture of generosity. The 59-year-old had agreed to a "rapid autopsy," a procedure conducted within hours of his death on March 28, 2017, so that scientists could learn as much as possible from the cancer that killed him.
"He was 100 percent for it," recalled his ex-wife, Nancy Beck, 63, who cared for Beck at the end of his life. "It wasn't the easiest thing to do, but it was important."
Beck donated his body to a rapid-autopsy research study at the Ohio State University, part of a small but growing effort by more than a dozen medical centers nationwide. The idea is to obtain tumor tissue immediately after death — before it has a chance to degrade. Scientists say such samples are the key to understanding the genetics of cancers that spread through the body, thwarting efforts to cure them.
"People are recognizing that cancer is more heterogeneous than we realize," said Dr. Sameek Roychowdhury, a medical scientist at OSU's Comprehensive Cancer Center. "Different parts of your body may have different cancer cells, even though they originated from the same cancer."
In Beck's case, results from the rapid autopsy showed he had developed a mutation that caused the experimental drug he was taking, known as an FGFR inhibitor, to stop working. Roychowdhury and colleagues plan to report on Beck's case in an upcoming paper.
"This is helping us shape how we develop this new drug," Roychowdhury said. "How can we make a better drug? Or can we make a better drug combination?"
But only in recent years have more hospitals been launching and expanding programs, said Dr. Jody Hooper, director of the Legacy Gift Rapid Autopsy Program at Johns Hopkins Medicine in Baltimore. At last count, there were 14 similar programs in the U.S.
Funding for them varies, Hooper said, but typically they're supported by a mix of cancer program resources, grants and researcher fees.
Scientists recognize the value of examining tissue from multiple sites soon after death and obtaining larger samples than they could while a patient was living. Cancer cells can be retrieved during such autopsies and kept alive, allowing researchers to experiment with ways to treat — or kill — them.
"It's the power of sampling over the entire body at the same time," said Hooper, who conducts about one rapid autopsy a month, often providing tissue for up to a half-dozen researchers interested in different questions.
Most programs focus on cancer, but efforts are underway to expand the practice, possibly to shed light on virus reservoirs in HIV patients, for instance.
Speed is essential to preserve RNA and DNA, the building blocks of cells, which can degrade quickly after death. It's best to obtain specimens of living cells within six hours of death and other tissue within 12 hours, Hooper said.
The need for speed is also what makes such autopsies challenging. Families must consent to the procedure, often while freshly grieving their loved one's death. And the logistics surrounding retrieving a body, conducting an autopsy and then returning the body for a funeral are often complicated. Traffic is unpredictable and "one time, there was a blizzard," Hooper said.
Roychowdhury said he and one of his clinical fellows are on call at all times.
"The patients have our cellphone numbers, as well as the next of kin," he said.
Broaching the subject with patients and families requires tact and compassion. Most patients are enrolled in clinical trials and learn about the autopsies from their doctors or pathologists like Hooper. Many are willing, even eager, to cooperate, she said.
"These are mostly patients with metastatic cancer," she said. "They've made their peace with the outcome long before."
For some, the rapid autopsy is simply the final phase of the clinical trial.
"They want to do something not only for themselves, but also to help others," Roychowdhury said.
That's how Linda Boyed, 52, of Lewis Center, Ohio, sees it. Like Beck, she has bile duct cancer and is enrolled in a trial to treat it. The drugs are working now, but Boyed said she has agreed to a rapid autopsy after death so scientists can learn from her when they're no longer effective.
"I have a strong Christian faith," she said. "I believe we're put on this Earth to help each other."
Because the rapid autopsies are paid through program funds and grants, there's no cost to the families. Bodies are returned within a day and in a condition that doesn't affect funeral plans.
"My emphasis is that it was all done with dignity and respect," said Nancy Beck. "We felt honored to be able to do this."
Performing the autopsy after treating a patient in life is an honor for doctors, too, Roychowdhury said.
"This was once a living, breathing person that came into my office every other week," he said. "The thing I want to think about each day is that they've given so much so that others can benefit.