Patients whose blood cancers have failed to respond to repeated rounds of chemotherapy may be candidates for a new type of gene therapy that could send their cancers into remission for years.
But the two approved therapies, with price tags of hundreds of thousands of dollars, have roiled the insurance approval process, leading to delays and, in some cases, denials of coverage, clinicians and analysts say.
The therapy involves collecting patients' own T cells, a type of white blood cell, genetically modifying them, and then infusing them back into patients, where they hunt down and kill cancer cells. Known as CAR T-cell therapy, it has been called a "living drug."
Two drugs, Kymriah and Yescarta, were approved last year to treat patients whose blood cancers haven't responded to at least two other rounds of treatment. Kymriah is approved for people up to age 25 with a form of acute lymphoblastic leukemia, the most common cancer in children. Kymriah and Yescarta are both approved for adults with advanced lymphomas.
Researchers report that some critically ill patients who received the therapy have remained cancer-free for as long as five years.
"This is what patients need," said Dr. Yi Lin, a hematologist who oversees the CAR-T cell practice and research for the Mayo Clinic. "With the likelihood of getting patients into durable survival, we don't want to deny them the therapy." She said she receives no personal financial support from the drugs' makers.
But it comes at a cost. The drugs are hugely expensive. Kymriah and Yescarta cost $373,000 to treat adults with advanced lymphomas, while Kymriah costs $475,000 to treat acute lymphoblastic leukemia in children and young adults. In addition, many patients experience serious side effects that can land them in a hospital intensive care unit for weeks, pushing treatment costs more than $1 million.
All of this gives government and private insurers pause.
Most commercial insurers are covering CAR-T therapies now, but they do so on an individual basis, writing single-patient agreements each time, said cancer experts. Large insurers that are already familiar with complicated therapies like stem-cell transplants are getting speedier at handling CAR-T treatment requests, they said. But that's not always the case at smaller or regional plans, where delays can add weeks to the approval process.
"A request for CAR-T may end up with somebody on the payer authorization team who doesn't understand the technology or the urgency of the request, when somebody has only weeks or months to live," said Stephanie Farnia, director of health policy and strategic relations at the American Society for Blood and Marrow Transplantation.
Farnia is in contact with many of the more than 50 medical centers that are authorized to provide treatment. The process of getting to a treatment center and evaluated for therapy is involved, she said, "to then be substantially delayed due to paperwork is incredibly frustrating" for patients.
Medicare and Medicaid often pose greater coverage challenges than do private insurers, according to insurance experts.
Some Medicaid programs don't cover the treatment, said Dr. Michael Bishop, director of the cellular therapy program in the hematology-oncology section at the University of Chicago. Medicaid, the state-federal health program, covers children in low-income households and some adults.
"Medicaid has been very tough," he said. "Certain states just deny coverage, even states with balanced budgets."
Matt Salo, executive director of the National Association of Medicaid Directors, said states have to evaluate the cost as well as the drugs' effectiveness. "Medicaid is a finite pot of money, and it's stretched threadbare even on a good day," he said.
People who are on Medicare, the health insurance program for people age 65 and older and some people with disabilities, typically haven't faced coverage denials to date, clinicians say. But the government's reimbursement rates are raising concerns for providers.
Last spring, Medicare announced payment rates for providers who administer Yescarta and Kymriah on an outpatient basis. The payments would more than cover the costs of the drugs. Medicare beneficiaries' out-of-pocket costs would be capped at $1,340 plus their Part B deductible, if it hasn't been met, the agency said.
The problem with this plan: Facilities typically provide treatment on an inpatient basis, because of the potential for severe, systemic side effects.
"There's a lot of toxicity and questions about whether it can even be provided in an outpatient setting," said Gary Goldstein, the business manager at the blood and marrow transplant program at Stanford Health Care in Stanford, Calif.
For inpatient care, "CAR T-cell therapy … would be paid at a much lower amount compared to outpatient hospital use," according to officials at the Centers for Medicare & Medicaid Services.
The agency is considering how to handle payment for inpatient CAR-T care for the upcoming fiscal year that starts in October. For now, some medical centers are absorbing whatever Medicare doesn't pay.
"How can you tell a patient who's 66, ‘If only you'd gotten lymphoma when you were 64'? Goldstein asked.
But the current approach can't continue indefinitely, he said.
"Even if there aren't any centers that are making that decision today, if coverage doesn't change for Medicare, it absolutely is going to be a problem tomorrow," said Goldstein.
If the Affordable Care Act’s protections for people with preexisting medical conditions are struck down in court, residents of the Republican-led states that are challenging the law have the most to lose.
"These states have been opposed to the ACA from the beginning," said Gerald Kominski, a senior fellow at the UCLA Center for Health Policy Research. "They’re hurting their most vulnerable citizens."
The states’ lawsuit argues that because Congress eliminated the Obamacare tax penalty for not having insurance coverage, effective next year, the entire law is unconstitutional. By extension, the suit calls on federal courts to find the health law’s protections for people with preexisting conditions unconstitutional — and Sessions agrees.
Nine of the 11 states with the highest rates of preexisting conditions among adults under 65 have signed onto the lawsuit to strike down the ACA, according to data from insurance companies and the U.S. Centers for Disease Control and Prevention. The 2015 data, the most recent available, were analyzed by the Kaiser Family Foundation in 2016. (Kaiser Health News, which produces California Healthline, is an editorially independent program of the foundation.)
Those who support the lawsuit contend that there are other means of protecting people with preexisting conditions.
"If a court strikes down the constitutionality of the ACA, there are ways to repeal and replace without Arizonans with preexisting conditions losing their coverage," said Katie Conner, a spokeswoman for Arizona Attorney General Mark Brnovich.
Conner said her boss, who is party to the lawsuit, believes preexisting conditions should "always be covered." In Arizona, more than 1 in 4 adult adults under 65 have a preexisting condition, according to the data.
The state with the highest rate of adults with preexisting conditions is West Virginia — 36 percent of those under age 65. That means that about 1 in 3 of them could have a hard time buying insurance through the individual marketplace without the ACA protections.
The office of West Virginia Attorney General Patrick Morrisey, who joined the legal challenge against the ACA, declined to comment. But a spokesman for Morrisey’s re-election campaign told PolitiFact last month that "help should be provided to those who need it most, including those with preexisting conditions."
Plaintiffs in the lawsuit "are paying lip service to these critical protections for people, but they are in fact engaged in a strategy that would get rid of those protections," said Justin Giovannelli, an associate research professor at Georgetown University's Center on Health Insurance Reforms. "Frankly, it's hard to square what they're saying on the one hand and what they're arguing in the courts on the other."
According to a poll released in June, also by the Kaiser Family Foundation, three-quarters of Americans say that maintaining protections for people with preexisting conditions is "very important." This includes majorities of Democratic, Republican and independent voters.
Before the health law was adopted, insurance companies routinely denied coverage to millions of people with preexisting conditions who purchased insurance through the individual marketplace. If they didn’t deny coverage outright, some health plans charged consumers exorbitant premiums, or offered policies that excluded coverage for pricey conditions. (Although many people got insurance through their employers or public plans that covered preexisting conditions, they could have been left vulnerable if their employment status or other circumstances changed.)
The KFF analysis estimated that at least 27 percent of adults under 65 — more than 50 million Americans — had at least one preexisting condition that would have jeopardized their coverage pre-ACA. The foundation said its estimates were an undercount because some diseases that insurers cited when declining coverage are not in the survey data. Also, each insurance company set its own rules and conditions for denials, making accurate counts of those who could be affected hard to nail down.
Less precise estimates by other researchers and the Department of Health and Human Services show that up to half of all adults under age 65 have at least one preexisting condition.
As the Trump administration looks to reduce the number of asylum applicants, this clinic and others like it seek evidence that can help determine whether someone should gain asylum in the U.S.
OAKLAND, Calif. — Dr. Nick Nelson walks through busy Highland Hospital to a sixth-floor exam room, where he sees patients from around the world who say they have fled torture and violence.
Nelson, who practices internal medicine, is the medical director of the Highland Human Rights Clinic, part of the Alameda Health System. A few times each week, he and his team conduct medical evaluations of people who are seeking asylum in the United States. The doctors listen to the patients' stories. They search for signs of trauma. They scrutinize injuries, including electrocution scars, bullet wounds and unset broken bones.
As the Trump administration looks to reduce the number of asylum applicants, citing loopholes and fraudulent claims, this clinic — and others like it in San Diego, Los Angeles, New York and Chicago — seeks evidence that can help determine whether someone should gain asylum in the U.S.
The Highland clinic opened in 2001 as a place for asylum seekers and refugees to get care. Five years later, the staff started offering forensic exams that aim to discern whether there is evidence of torture or abuse. Nelson, who took over as director in 2012, says his team does between 80 and 120 evaluations each year.
Nelson and his colleagues diagnose physical and psychological ailments and, in many cases, substantiate these patients’ claims about how they were hurt. Sometimes the asylum seekers have health coverage that pays for the exams, but the county covers the cost for those who don't.
"Our job is to make sure that the asylum office understands all the medical and psychological facts about a person's case so that they can make a decision," Nelson said.
Nelson bases his findings on an internationally recognized protocol for torture documentation.
For example, he may be called on to judge whether a scar or injury could have occurred as the patient describes. Sometimes, Nelson said, attorneys ask him to answer specific questions, such as, "Is this burn scar consistent with a cigarette burn?" or "Are these marks on his back consistent with being beaten with PVC pipe?"
Nelson has had some medical training on what to expect to see in cases of torture. He also applies his general expertise as a doctor in knowing how to interview and examine patients, and has learned something about the countries these asylum seekers are fleeing and the injuries they may have endured.
Juan Lopez Aguilar, who fled Guatemala three years ago, meets with Nelson at the Highland Hospital in Oakland, Calif., in June 2018. (Heidi de Marco/KHN)
For example, when someone is hit with a long, stiff object, it produces a pair of parallel bruises like railroad tracks, he said.
"That's a specific thing that I didn't learn in medical school or residency," he said, "but that I have learned through taking care of a lot of people who have been tortured."
In most cases, Nelson said, he finds evidence to support the stories his patients tell him. But there are also exams that don't yield definitive evidence.
Nelson also addresses the asylum seekers' health needs, sometimes diagnosing cases of tuberculosis or HIV that were previously undiagnosed. Nearly all of the patients he sees need mental health referrals, he said, because of years of torture or abuse in their native countries.
One of the patients Nelson recently treated is 60-year-old Juan Lopez Aguilar, an indigenous Maya who fled Guatemala three years ago. He said he was beaten and threatened off and on for nearly four decades because of his ethnicity and feared for his life back home. Lopez Aguilar's son also was murdered in 2005 and his daughter fled because of threats, his attorney said.
"I'm worried," Lopez Aguilar told the doctor through a translator, as he sat in the exam room. "There are a lot of gangs. They want to kill people in my community."
Nelson first examined and interviewed Lopez Aguilar earlier this spring and wrote a report corroborating the man's account for his asylum case, formally filed last year.
Lopez Aguilar, who grew up in a family of peasant farmers, told Nelson that his community was attacked by soldiers when he was in his 20s and that his father was killed during that attack. Lopez Aguilar moved to another part of Guatemala, where he continued to be the victim of "race-based harassment, extortion and threats," Nelson said.
Lopez Aguilar, who has worked as a dishwasher, has now returned to the clinic for a regular medical visit. He tells the doctor in his native language that he has been having severe headaches and dizziness since soon after he arrived in the U.S.
His wife and some of his children are back in Guatemala, he explained, and he can't petition to bring his wife to the States unless and until he is granted asylum. That won't be before 2020, when his court date is scheduled.
Men like Lopez Aguilar have faced increasingly tough odds since early June, when U.S. Attorney General Jeff Sessions announced that gang violence and domestic abuse would no longer be considered grounds for granting asylum.
Nelson searches Tefamicael for signs of trauma and examines injuries and wounds. (Heidi de Marco/KHN)
To be eligible for asylum, applicants must prove they face physical violence, or fear it, based on factors such as race, ethnicity or religion.
Even before the Trump administration's recent crackdown, getting asylum was a difficult and time-consuming proposition. In 2017, only about 38 percent of asylum seekers in the U.S. were granted that status by the immigration court, according to data from the nonpartisan Transactional Records Access Clearinghouse at Syracuse University.
The harsher federal policies, including detentions at the border, have generated anxiety and uncertainty among those seeking asylum and their advocates and immigration lawyers.
"Every day is a roller coaster," said Oakland attorney Haregu Gaime, who frequently refers her clients to the Highland clinic.
Niloufar Khonsari, executive director of Pangea Legal Services, a Bay Area legal advocacy group, said the obstacles won't deter people from seeking a safe place to live or from seeking judicial help to stay in the U.S.
When applicants are examined at the Highland clinic, Khonsari said, it "definitely makes a difference for judges."
Gaime said the clinic's reports frequently help corroborate her clients' experiences in a way that their testimony alone cannot.
"Sometimes a traumatized person is not able to relay what happened to them in a way that tells the full story," she said.
Ira Mehlman, spokesman for the Federation for American Immigration Reform, which favors stricter controls on immigration, noted that there are limits to a doctor's ability to interpret these cases. Doctors may be able to determine if somebody suffered an injury, he said, but not necessarily the circumstances that led to it. "And they can't determine if it was because of political persecution," he said.
Mehlman said there is no question that there is violence in Central America and that gangs are rampant, but the U.S. can't accept everyone who is danger.
On the same morning that Nelson saw Lopez Aguilar at Highland clinic, he also examined Gebremeskl Tefamicael, an asylum seeker from Eritrea. Nelson took notes as he listened to Tefamicael's story of being conscripted into the military, then imprisoned and tortured.
Nelson asked Tefamicael exactly what his tormentors used to tie him up.
It was a rope made from tree bark, the patient responded, as Nelson wrote in his notebook a description of the scars on Tefamicael's wrists.
Afterward, Nelson's report for the court stated that Tefamicael's physical scars and psychological state are consistent with the man's description of what happened to him.
Nelson said he got involved with the clinic because he wanted to treat people who were underserved. People fleeing their countries and seeking asylum here are "definitely one of the more … underserved and generally marginalized" communities, he said.
Often, Nelson doesn't hear until months or years later whether his patients have been granted asylum. But when the request is approved, he said, he sees a tremendous change in them.
Getting asylum doesn't take away the trauma, but it relieves these people of the fear of returning to a country where they are not safe, Nelson said.
"When someone who has got a real basis for an asylum claim gets granted, and you were part of demonstrating why that should be the case," he said, "that feels really good."
These companies tout their expertise at spotting suspicious billing patterns and chasing down criminals, but HHS OIG found their results don’t always match the rhetoric.
Despite receiving billions of dollars in taxpayer money, Medicaid insurers are lax in ferreting out fraud and neglect to tell states about unscrupulous medical providers, according to a federal report released Thursday.
The U.S. Health and Human Services' inspector general's office said a third of the health plans it examined had referred fewer than 10 cases each of suspected fraud or abuse to state Medicaid officials in 2015 for further investigation. Two insurers in the program, which serves low-income Americans, didn't identify a single case all year, the report found.
Some health plans terminated providers from their networks for fraud but didn't inform the state. The inspectors said that could allow those doctors or providers to defraud other Medicaid insurers or other government programs in the same state.
In addition, some insurance companies failed to recover millions of dollars in overpayments made to doctors, home health agencies or other providers. The inspector general said insurers stood to benefit financially from this because higher costs can justify increased Medicaid rates in the future. (The report didn't name specific insurers or states.)
Medicaid plans "are required by law to find fraud and abuse and to share information with states," said Meridith Seife, a deputy regional inspector general in New York and a co-author of the report. "We are concerned anytime we see evidence that managed-care organizations are not doing that in a rigorous way. There's a lot of taxpayer dollars at stake."
In general, Medicaid has struggled for years with poor oversight and billions lost to improper payments, drawing regular scrutiny from federal auditors but little improvement. Authorities have found clinics overprescribing opioids to Medicaid patients and doctors running pill mills. Hospitals and other providers have falsified Medicaid claims, paid illegal kickbacks for patient referrals and billed for unnecessary services.
Health insurers serve about 55 million Medicaid patients across 38 states, and play an increasingly vital role in running the giant public insurance program. States generally split the cost of Medicaid with the federal government.
One in 5 Americans is on Medicaid and enrollment is poised to rise even further as more states consider expansion under the Affordable Care Act. About 75 percent of Medicaid patients are part of a privatized system in which managed-care companies are paid fixed fees per patient to coordinate their care. Big, publicly traded companies such as UnitedHealth, Anthem and Centene dominate the business. In some states like California, evidence shows the funding often flows to the plans with little oversight, sometimes regardless of their performance.
These companies tout their expertise at spotting suspicious billing patterns and chasing down criminals using sophisticated data mining, but the inspector general found that their fraud-fighting results don't always match the rhetoric.
Andy Schneider, a former federal health official and now a research professor at Georgetown University's Center for Children and Families, said the lack of reporting to states is "a big problem."
"If states don't know a provider has ripped off the managed-care organization, how can they protect other state programs or insurers from that behavior?" he said.
Last year, new Obama-era rules went into effect that seek to strengthen fraud-detection efforts in Medicaid managed care. For now, the Trump administration has endorsed those changes.
Last month, the administration said they would monitor state compliance and conduct more audits.
"With historic growth in Medicaid comes an urgent federal responsibility to ensure sound fiscal stewardship and oversight of the program," Seema Verma, administrator of the Centers for Medicare & Medicaid Services, said in a statement last month.
In a May 17 response to the inspector general, Verma cited the Obama administration's managed-care rules and she agreed with nearly all of the recommendations the inspector general made to help remedy the problems.
In the report, the inspector general's office examined data from the health plan with the largest Medicaid spending in each of the 38 states with managed care. Inspectors also conducted interviews with officials and insurance companies in five states. Among the findings:
The 38 plans received $62.2 billion in federal and state money in 2015. That represents about a quarter of the $236 billion Medicaid plans received that year. That figure has grown to nearly $300 billion last year, or about half of Medicaid spending overall.
The health insurers identified $57.8 million in overpayments related to fraud or abuse during 2015. Health plans only recovered $12.5 million, or 22 percent, of those overpayments. (Four of the health plans found no such overpayments all year.)
Insurers performed better on erroneous billing and other overpayments not related to fraud. Health plans collected 68 percent of the $831.4 million they identified in 2015.
Insurance industry officials say they couldn't comment specifically on the audit until they had more time to review the findings. They agreed that the number of cases identified and shared with states appeared relatively small in comparison to the Medicaid spending involved.
Jeff Myers, chief executive of Medicaid Health Plans of America, an industry trade group, said state contracts vary widely and may not require health plans to report every questionable provider or billing discrepancy.
"Those numbers do seem low," Myers said of the fraud instances cited in the report. "If the Trump administration and states decide they need to get more data and do more rigorous analysis, plans will provide it."
Myers pushed back on the inspectors' suggestion that insurers are purposely ignoring wasteful spending in order to boost their own revenue and profits from states.
"States look very seriously at ways to reduce Medicaid spending because every dollar spent on Medicaid is a dollar not spent somewhere else," Myers said.
Some health-policy experts said the federal report reflects the insurance industry's resistance to what it perceives as meddling in its private business even though plans are participating in a public program. "This kind of behavior, like not reporting bad actors, is totally consistent with their broader philosophy of ‘It's my money and let me run my business,'" said Schneider, the former federal official.
Christopher Koller, former Rhode Island health insurance commissioner, said states bear the responsibility to address these problems in their contracts with health plans.
"This is one more example of how state oversight can often be insufficient," said Koller, president of the Milbank Memorial Fund, a foundation focused on health policy. "States who think they can outsource all of the work to the private-sector ‘experts' are not serving their citizens well."
In 2015, the 38 health plans examined by inspectors collectively took 2,668 corrective actions, such as payment suspensions, against providers suspected of fraud or abuse, according to the report.
Eighteen health plans canceled contracts for a total of 179 providers "for cause" in 2015. Three of those insurers said they didn't typically notify the state of provider terminations.
Now the new Medicaid regulations require insurers to notify states about providers' terminations and other changes in their status, according to the report.
The kidney doctor sat next to Judy Garrett's father, looking into his face, her hand on his arm. There are things I can do for you, she told the 87-year-old man, but if I do them I'm not sure you will like me very much.
The word "death" wasn't mentioned, but the doctor's meaning was clear: There was no hope of recovery from kidney failure. Garrett's father listened quietly. "I want to go home," he said.
It was a turning point for the man and his family. "This doctor showed us the reality of my father's condition," Garrett said, gratefully recalling the physician's compassion. A month later, her father passed away peacefully at home.
This kind of caring is what older adults want when they become seriously ill and move back and forth between the hospital and other settings, according to the largest study ever of patients' and caregivers' experiences with care transitions.
Two other priorities are also crucially important, according to recently published research: Patients and caregivers want to feel prepared to look after themselves or loved ones when they leave the hospital, and they want to know that their needs will be attended to until they stabilize or recover, however long that takes.
What's striking is how often hospitals fail to fulfill these expectations, even though it's been known for decades that care transitions are problematic and strategies to reduce preventable hospital readmissions have been widely adopted.
"Despite millions of dollars of investment and thousands of hours of effort, the health care system still feels very hazardous, unsafe and stressful from the perspective of patients and caregivers," said Dr. Suzanne Mitchell, assistant professor of family medicine at Boston University School of Medicine and lead author of the new report.
She's part of a team of experts spearheading Project ACHIEVE, a five-year, $15 million study investigating the effectiveness of interventions designed to improve care transitions. The focus is on what Medicare patients and caregivers need and want when a hospital stay ends and they return home.
One part of the project involves asking people who undergo these transitions — mostly older adults — about their experiences: what went well, what didn't. In addition to the new report, a survey of more than 9,000 patients and 3,000 caregivers is close to completion. Results will be published this fall.
Another part involves looking at what hospitals are doing to try to improve transitions, such as teaching patients and caregivers how to care for wounds or arranging follow-up phone calls with a nurse, among other strategies. A preliminary research report published last year found common problems with transition programs, including haphazard, uncoordinated approaches and a lack of teamwork and leadership.
Several areas deserve special attention, according to people who participated in focus groups and in-depth interviews for Project ACHIEVE:
Getting Actionable Information
Too often, doctors speak to patients and caregivers in "medicalese" and fail to address what patients really want to know — such as "What do I need to do to feel better?" — said Dr. Mark Williams, Project ACHIEVE's principal investigator and chief transformation and learning officer at the University of Kentucky HealthCare system.
"You really need someone to walk you through what you're going to need, step by step," Williams said.
Nothing of the sort occurred when Anita Brazill's parents, ages 86 and 87, were hospitalized seven times in Scranton, Pa., between Dec. 25, 2016, and Feb. 13, 2017.
First, her mother needed emergency gastrointestinal surgery, then her father became ill with pneumonia. Both went to an understaffed rehabilitation facility after leaving the hospital, and both bounced right back to the hospital — five times altogether — because of complications.
Each time her parents left the hospital, Brazill felt unprepared.
"You're out on the concrete of the discharge pavilion and they send you off by ambulance or car without a guidebook, without any sense of what to expect or who to call," she said.
Planning Collaboratively
Ideally, when preparing to release a patient, hospital staff should inquire about older patients' living circumstances, social support and the help they think they'll need, and discharge plans should be crafted collaboratively with caregivers.
In practice, this doesn't happen very often.
In May, Art Greenfield, 81, was admitted at 3 a.m. to a hospital near his home in Santa Clarita, Calif., with severe food poisoning and dehydration. Less than six hours later, after a sleepless night, a hospitalist he had never met walked into his room and told him she was sending him home because his situation had stabilized. (Hospitalists are physicians who specialize in caring for people in the hospital.)
"She had no idea if he could pee without the catheter they'd put in or get out of bed on his own," said Hedy Greenfield, 76, his wife. "I wasn't there, and no one asked him if there was somebody who could take care of him at home when he got there. Fortunately, he had the presence of mind to say I'm not ready, I need to stay another day."
Expressing Caring
Over and over again, patients and caregivers told Project ACHIEVE researchers how important it was to feel that health professionals care about their well-being.
Simple gestures can make a difference. "It's looking at you, rather than the computer," said Carol Levine, director of the families and health care project at United Hospital Fund in New York. "It's knowing your name and giving you a sense of ‘I'm here for you and on your side.'"
Without this sense of caring, patients and caregivers often feel abandoned and lose trust in health care professionals. With it, they feel better able to handle concerns and act on their doctors' recommendations.
Kathy Rust of Glendale, Calif., remembers walking into a room at an outpatient clinic and seeing a doctor stroking her mother's hair and calming her before reinserting a feeding tube that the 93-year-old woman had pulled out. "He was making sure she was comfortable," Rust said, recalling how moved she was by this doctor's sensitivity.
Anticipating Needs
Few people know what they'll need in the aftermath of a medical crisis: They want doctors, nurses, pharmacists, social workers or care managers to help them figure that out and devise a practical plan.
Under the CARE Act — now enacted in 36 states, the District of Columbia and Puerto Rico — hospital staff are required to ask patients if they want to identify a caregiver (some choose not to do so) and to educate that caregiver about medical responsibilities they'll face at home. But implementation has been inconsistent, Levine and other experts said.
Rust panicked the first time her mother's feeding tube came out, by accident. "I called the transition service at my hospital's outpatient clinic, and they sent someone over in 30 minutes," she said. "They were very reassuring that I had done the right thing in calling them, very calming. It was such a positive experience that I wasn't afraid to contact them with all kinds of questions that came up."
Too often, however, discharges are hurried and caregivers unaware of what they'll face at home. Levine tells of an older woman who was handed a pile of paperwork when her husband was being released from the hospital. "She couldn't read it because she had macular degeneration and no one had thought to ask ‘Do you understand this and do you have any questions?'"
Ensuring Continuity Of Care
"Patients and families tell us that once they leave the hospital, they don't know who's responsible for their care," said Karen Hirschman, an associate professor and NewCourtland Chair in Health Transitions Research at the University of Pennsylvania School of Nursing.
The name of a person to call with questions would be helpful as would round-the-clock access to emergency assistance — for months, if needed.
"It's not just ‘Now you're home and we called you a few times to follow up,'" Hirschman said. "It can take much longer for some patients to recover, and they want to know that someone is accountable for their well-being all the way through."
Judy Garrett found that having cellphone numbers for a home health care nurse and a doctor who made house calls was essential, until hospice took over shortly before her father's death.
"My advice to families is be physically present as much as possible, although I know that's not always easy," she said. "Appoint one person in the family to be the point person for medical professionals to reach out to. Request cellphone numbers, but use them only when you have to. And if you don't understand what professionals are telling you, ask until you do."
The Trump administration's decision Tuesday to slash funding to nonprofit groups that help Americans buy individual health insurance coverage sparked outrage from advocates of the Affordable Care Act. Using words like "immoral" and "cold-hearted," they saw it as the Republicans' latest act of sabotage against the sweeping health law.
But as the ACA's sixth open-enrollment period under the health law approaches in November, the lack of in-person assistance is unlikely to be a disaster for people seeking coverage, insurance and health experts say.
"I think alone it will have a very small impact on enrollment for 2019," said William Hoagland, a senior vice president with the Bipartisan Policy Center in Washington.
But combined with other recent actions by the Trump administration, the decision sets a negative tone, Hoagland said.
"It does send a signal of course that the administration is not promoting enrollment," he said.
The Centers for Medicare & Medicaid Services announced it is cutting money to the groups known as navigators from $36 million to $10 million for the upcoming 45-day enrollment period.
This reduction comes a year after the Trump administration decreased navigators' funding by 40 percent from $62.5 million — and cut advertising and other outreach activities.
CMS Administrator Seema Verma said the navigators that operate in the 34 states that use the federal marketplace — including many health and religious organizations — were ineffective and had outlived their usefulness.
She pointed out that they helped with fewer than 1 percent of enrollments in 2017 — though she counts navigators as "helping" only if consumers sign up in their presence.
CMS also notes that after last year's navigator funding was reduced, the overall enrollment in Obamacare plans increased slightly (when counting people who paid their first month's premiums) to 10.6 million people.
Florida Blue, an insurer that enrolls among the largest number of Obamacare consumers nationwide, said it won't miss the help from the federally funded grass-roots helpers.
"Given our large and unique distribution-channel strategy of utilizing our retail centers along with our telesales efforts, our dedicated field agents and our direct in-market enrollment efforts, we do not depend on navigators to enroll ACA members," said spokesman Paul Kluding.
Greg Fann, a fellow with the Society of Actuaries, said the role of navigators has been overstated.
"I am a numbers guy, and what really matters to people are the numbers and price of the coverage," he said. Nearly 9 in 10 people buying coverage on the ACA exchanges qualify for federal subsidies based on their incomes, and the amount those subsidies rose last year because of an increase in silver-plan premiums.
The navigators, Fann added, were needed more in 2013 and 2014 when the marketplaces were in their first years and millions of people who hadn't bought insurance before were considering the health law's new options.
Insurers and brokers, Fann said, should step in to make up for navigator funding.
Don't count on it, said Steve Israel, a Boynton Beach, Fla., insurance agent and past president of the Florida Association of Health Underwriters. He said most independent brokers want nothing to do with ACA plans because insurers have cut their commissions. "We've been sending people to navigators," Israel said.
Some states that operate their own marketplaces, however, are continuing to invest in these grass-roots aides.
Covered California, for example, is holding its navigator funding steady, dedicating $6.5 million to navigators in this year's budget.
That's more than half of what healthcare.gov is investing in navigators in 34 states.
California has 1.5 million people in Obamacare plans, second highest in the nation behind Florida, which has 1.6 million.
Death By 1,000 Cuts?
Trump spent his first year in office trying to repeal the health law and came within one vote in the U.S. Senate of achieving that goal. Immediately after Sen. John McCain (R-Ariz.) cast the deciding vote to block the dramatic repeal effort, Trump implored Republicans to let the law disintegrate.
"Let ObamaCare implode, then deal," Trump tweeted on July 28, 2017.
But his administration has not stood idly by.
The Republican-controlled Congress in December passed a law that next year will eliminate the requirement that most Americans have insurance, a move likely to drive healthier people out of insurance market and lead to higher prices for those who are left.
Just last week, CMS said because of a pending lawsuit it was suspending a program created by the law to even out the burden on health insurers whose customers are especially unhealthy or sick. That could take millions of dollars away from some insurers, causing them to hike prices or abandon markets.
The Trump administration also issued new rules to try to make it easier for individuals and small businesses to buy health plans that cost less than ACA coverage because they cover fewer medical services. These plans would bypass the law's protections that prevent companies from charging higher prices to women, older people and those with preexisting medical conditions.
Critics deride such plans as "junk insurance."
CMS now wants the navigators to promote these policies in addition to steering people toward ACA-compliant plans and Medicaid.
This adds to the concern about the lack of navigator funding.
The availability of such new types of coverage will increase consumer demand for specially trained navigators, said Elizabeth Hagan, a senior consultant with Transform Health, a consulting firm.
She said the problem with reducing consumer assistance is not so much that fewer people will buy coverage but that people will buy policies that don't fit their needs.
Jodi Ray, who leads the University of South Florida's navigator program — the largest one in the state — said her staffers do much more than help with enrollment. They also help consumers file appeals with insurers.
"This is how health care disparities are exacerbated — we will be put in the awful position of pitting populations that need assistance against each other in order to prioritize how we can use the resources," she said.
Senate Democrats, who are divided on abortion policy, are instead turning to health care as a rallying cry for opposition to President Donald Trump’s Supreme Court nominee.
Specifically, they are sounding the alarm that confirming conservative District Court Judge Brett Kavanaugh could jeopardize one of the Affordable Care Act’s most popular provisions — its protections for people with preexisting health conditions.
“Democrats believe the No. 1 issue in America is health care, and the ability of people to get good health care at prices they can afford,” said Senate Minority Leader Chuck Schumer (D-N.Y.).
The Kavanaugh nomination, he added, “would put a dagger” through the heart of that belief.
Democratic senators spent Tuesday trying to connect the dots between potential threats to health care and Trump’s high court pick.
“President Trump as a candidate made it very clear that his priority was to put justices on the court who would correct for the fatal flaw of John Roberts,” said Sen. Chris Murphy (D-Conn.) on the Senate floor Tuesday. Chief Justice Roberts was the decisive fifth vote to uphold the ACA in a key case in 2012. “[Republicans’] new strategy is to use the court system to invalidate the protections in the law for people with preexisting conditions,” Murphy said.
Murphy — and many of his Democratic colleagues — are referring to a case filed in Texas in February by 20 Republican state attorneys general. The AGs charge that because the tax bill passed by Congress last year eliminated the tax penalty for not having health insurance, it rendered the entire health law void.
Their reasoning was that Roberts based his opinion upholding the ACA on Congress’ taxing power. Without the tax, the AGs argue, the law should be held unconstitutional.
The Trump administration, which would typically defend the ACA because defending federal law is part of what the Justice Department is tasked to do, opted to follow a different course of action.
In a response filed in June, political appointees in the department said eliminating the penalty should not invalidate the entire law. But it should nullify provisions that prevent insurers from refusing to sell insurance to people with preexisting conditions or charging them higher premiums.
If this argument were to be upheld by a newly reconstituted Supreme Court, the health law would be dealt a serious blow.
The lawsuit, however, is only in its earliest stages. And many legal scholars on both sides doubt it will get very far.
In an amicus brief filed with the court in June, five liberal and conservative legal experts who disagreed on previous ACA cases argued that both the Republican attorneys general and the Justice Department are wrong — that eliminating the mandate penalty should have no impact on the rest of the law.
Their position is rooted in something called “congressional intent.” When a court wants to invalidate a portion of a law, it usually also has to determine whether Congress would have considered other aspects of the law unworkable without it.
But that is not a problem in this case, the legal experts argued in their brief. “Here, Congress itself has essentially eliminated the provision in question and left the rest of a statute standing,” they wrote. “In such cases, congressional intent is clear.”
The merits of the lawsuit notwithstanding, the issue works well for Democrats.
For one thing, the health law’s preexisting condition protections are among its most popular parts, according to public opinion polls.
And unlike abortion, defending the health law is something on which all Senate Democrats agree. That includes some vulnerable senators in states that voted for Trump in 2016, including Sens. Joe Manchin (D-W.Va.), Heidi Heitkamp (D-N.D.) and Joe Donnelly (D-Ind.). None are strong supporters of abortion rights. But all have stood firm against GOP efforts to take apart the Affordable Care Act.
Manchin, for example, said in a statement about the nomination, “The Supreme Court will ultimately decide if nearly 800,000 West Virginians with preexisting conditions will lose their health care.”
Manchin’s opponent in November is Republican Attorney General Patrick Morrisey. He is one of the officials who filed the suit against the health law.
Reversing the landmark case would not automatically make abortion illegal across the country. Instead, it would return the decision about abortion legality to the states.
What would the U.S. look like without Roe v. Wade, the 1973 case that legalized abortion nationwide?
That’s the question now that President Donald Trump has chosen conservative Judge Brett Kavanaugh as his nominee to replace retiring Supreme Court Justice Anthony Kennedy.
Reversing the landmark case would not automatically make abortion illegal across the country. Instead, it would return the decision about abortion legality to the states, where a patchwork of laws are already in place that render abortion more or less available, largely depending on individual states’ political leanings.
“We think there are 22 states likely to ban abortion without Roe,” due to a combination of factors including existing laws and regulation on the books and the positions of the governor and state legislature, said Amy Myrick, staff attorney at the Center for Reproductive Rights, which represents abortion-rights advocates in court.
“The threat level is very high now,” Myrick said.
Kavanaugh never opined on Roe v. Wade directly during his tenure on the U.S. District Court in Washington, D.C. In his 2006 confirmation hearing for that position, though, he said he would follow Roe v. Wade as a “binding precedent” of the Supreme Court — which lower-court judges are required to do.
Abortion opponents are buoyed by the pick.
“Judge Kavanaugh is an experienced, principled jurist with a strong record of protecting life and constitutional rights,” said a statement from Susan B. Anthony List President Marjorie Dannenfelser. She spearheaded support for Trump in his presidential campaign after he promised to appoint to the Supreme Court only justices who would overturn Roe v. Wade.
Kennedy, by contrast, was a swing vote on abortion issues. He frequently sided with conservatives to uphold abortion restrictions. However, in key cases in 1992 and 2016, he sided with liberals to uphold Roe’s core finding that the right to abortion is part of a right to privacy that is embedded within the U.S. Constitution.
Even now, with Roe v. Wade’s protections in place, a woman’s ability to access abortion is heavily dependent on where she lives.
According to an analysis by the Guttmacher Institute, a reproductive-rights think tank, 19 states adopted 63 new restrictions on abortion rights and access.
At the same time, 21 states adopted 58 measures last year intended to expand access to women’s reproductive health.
Since 2011, states have enacted nearly 1,200 separate abortion restrictions, according to Guttmacher, making these types of laws far more common.
As of now, four states — Louisiana, Mississippi and North and South Dakota — have what are known as abortion “trigger laws.” Those laws — passed long after Roe was handed down — would make abortion illegal if and when the Supreme Court were to say Roe is no more.
“They are designed to make abortion illegal immediately,” said Myrick.
Another dozen or so states still have pre-Roe abortion bans on the books.
Some have been formally blocked by the courts, but not repealed. Those bans could, at least in theory, be reinstated, although “someone would have to go into court and ask to lift that injunction,” said Myrick.
States could simply begin enforcing other bans that were never formally blocked, like one in Alabama that makes abortion providers subject to fines and up to a year in jail.
At the same time, Myrick said, “there are 20 states where abortion would probably remain safe and legal.”
The Path To The High Court
Several major challenges to state abortion laws are already in the judicial pipeline. One of these will have to get to the Supreme Court to enable a majority to overturn Roe v. Wade.
“It’s not a question of if, it’s a question of what or when,” said Sarah Lipton-Lubet, vice president for reproductive health and rights at the National Partnership for Women and Families.
The cases fall into three major categories.
The first — and most likely type to result in the court taking a broad look at Roe v. Wade — are “gestational” bans that seek to restrict abortion at a certain point in pregnancy, said Lipton-Lubet.
Mississippi has a 15-week ban, currently being challenged in federal court. Louisiana enacted a similar ban, but it would take effect only if Mississippi’s law is upheld. Iowa earlier this spring passed a six-week ban, although that is being challenged in state court, not federal, under the Iowa Constitution.
The second category involves regulations on abortion providers.
One pending case, for instance, involves an Arkansas law that would effectively ban medication abortions. Finally, there are bans on specific procedures, including several in Texas, Arkansas and Alabama that would outlaw “dilation and evacuation” abortions, which are the most common type used in the second trimester of pregnancy.
Myrick and Lipton-Lubet agree that there is no way to predict which abortion case is likely to reach the high court first.
The case that’s actually closest to the Supreme Court, noted Myrick, is a challenge to an Indiana law that would outlaw abortion if the woman is seeking it for sex selection or because the fetus could be disabled. A federal appeals court found that law unconstitutional in April.
Many analysts also agree that even with the court’s likely philosophical shift, Roe v. Wade might not actually be overturned at all.
Instead, said Lipton-Lubet, a more conservative court could “just hollow it out” by allowing restrictive state laws to stand.
“The court cares about things like its own legitimacy,” said Myrick, “and how often a precedent has been upheld in the past.” Given that Roe’s central finding — that the decision to have an abortion falls under the constitutional right to privacy — has been upheld three times, even an anti-abortion court might be loath to overrule it in its entirety.
The day a gunman fired into a crowd of 22,000 people at the country music festival in Las Vegas, hospital nursing supervisor Antoinette Mullan was focused on one thing: saving lives.
She recalls dead bodies on gurneys across the triage floor, a trauma bay full of victims. But "in that moment, we're not aware of anything else but taking care of what's in front of us," Mullan said.
Proud as she was of the work her team did, she calls it "the most horrific evening of my life" — the culmination of years of searing experiences she has tried to work through, mostly on her own.
"I can tell you that after 30 years, I still have emotional breakdowns and I never know when it's going to hit me," said Mullan.
Calamities seem to be multiplying in recent years, including mass shootings, fires, hurricanes and mudslides. Just last week, a gunman burst into the newsroom of the Capital Gazette in Annapolis, Md., killing five journalists and injuring two others.
Many of the men and women who respond to these tragedies have become heroes and victims at once. Some firefighters, emergency medical providers, law enforcement officers and others say the scale, sadness and sometimes sheer gruesomeness of their experiences haunt them, leading to tearfulness and depression, job burnout, substance abuse, relationship problems, even suicide.
Many, like Mullan, are stoic, forgoing counseling even when it is offered.
"I don't have this sense that I need to go and speak to someone," said Mullan. "Maybe I do, and I just don't know it."
In 2017, there were 346 mass shootings nationwide, including the Las Vegas massacre — one of the deadliest in U.S. history — according to Gun Violence Archive, a nonprofit organization that tracks the country's gun-related deaths.
The group, which defines mass shootings as ones in which four or more people are killed or injured, has identified 159 so far this year, through July 3.
Signs that read "Vegas Strong" can be seen all around Las Vegas. "Certain things trigger emotions that I didn't expect," says Antoinette Mullan, nursing supervisor at University Medical Center of Southern Nevada. (Heidi de Marco/KHN)
The "first responders" who provide emergency aid have been hit hard not just by recent large-scale disasters but by the accumulation of stress and trauma over many years, research shows. Many studies have found elevated rates of post-traumatic stress disorder among nurses, firefighters and paramedics. A 2016 report by the International Association of Fire Fighters found that firefighters and paramedics are exhibiting levels of PTSD similar to that of combat veterans.
Experts have found a dearth of research on treatment, insufficient preparation by employers for traumatic events and significant stigma associated with seeking care for the emotional fallout of those events.
"When we have these national disasters or have a guy take a truck and run people over … those are added stressors we aren't prepared for," said Jeff Dill, a former firefighter and licensed counselor.
Dill said the emotional toll of these large-scale horrific events is magnified because everyone is talking about them. They are inescapable and become emotional "trigger points."
"Anniversaries are the hardest," he said.
Some employers are working on developing greater peer support, he said, but it often comes after the fact rather than proactively. "We met a lot of resistance early on because of the [stoic] culture," said Dill, who travels the country teaching mental health awareness workshops for firefighters and other emergency personnel.
He said the culture is slowly shifting — particularly because of the rise in mass public shootings across the country.
‘I Was Scared'
In 2015, Gary Schuelke, a police watch commander, raced to the scene of a holiday party in San Bernardino, Calif., where he and his fellow officers faced a fusillade of gunfire from a pair of homegrown terrorists.
He'd seen a lot on the force over the years, but this call was different — and not just because of the numerous casualties. His son, a young police officer, was there with him.
Schuelke and his son, Ryan, chased the assailants' car as the bullets whizzed by. It was the younger Schuelke's first time exchanging fire with suspects.
The Inland Regional Center (IRC) in San Bernardino, Calif. (Heidi de Marco/KHN)
Afterward, when both were safe, "I asked him, You doing OK?" Gary Schuelke recounted. "If you're not, it's cool. You can talk to me about it. He said, ‘I'm good, Dad. I'm very happy to be part of taking down the bad guys.'"
Ryan was "just like I was when I was in my 20s … chasing bad guys and making arrests," the elder Schuelke said. He said he had decided early in his career to try to "compartmentalize" his work experiences so they wouldn't affect his personal life.
Still, certain calls have stuck with him. Like many first responders, he is particularly affected when kids are hurt or killed. He still recalls his first homicide, a 13-year-old girl shot in the hip.
"She bled out and took her last breath right there in front of me," Schuelke said. "That was the first time I was like, man, this job is real."
Generally, no one focused on officers' mental health back then, he said, but experience has taught him how important it is to do just that. After the 2014 terrorist attack, which left 14 would-be revelers dead, his department quickly set up a "debriefing" meeting for the officers involved.
"I made it a point in that meeting that I was going to talk about the fact that I was scared," said Schuelke. "Not try to be macho in there and act like nothing bothered me about it."
Cumulative Stress
In 25 years as a firefighter, Randy Globerman was called upon time and again to cope with other people's traumas and disasters. He never really took account of how the experiences affected him.
"You spend all your career suppressing that stuff," he said.
Then came the Thomas Fire, considered the largest in California's history, which decimated hundreds of homes in Ventura and Santa Barbara counties. As his fellow firefighters were deployed to save what they could of their community, Globerman faced the real prospect of losing his own home.
For 36 hours, armed only with a bucket and water from his Jacuzzi, he fought to keep the flames back. He was frantic. "I was kind of a mess," said Globerman, 49. "I felt sick, I felt sad. I went through all sorts of crazy emotions."
A memorial sign near the Inland Regional Center (IRC) in San Bernardino honors the 14 people killed and 22 others seriously injured during a shooting on Dec. 2, 2015. (Heidi de Marco/KHN)
In the end, he was successful — his home survived — and he went back to work, responding just months later to mudslides from the denuded, rain-soaked hills.
But Globerman struggled emotionally, and, as experts say is often the case among first responders, it affected his family life.
"My kids would do something silly that would otherwise make me laugh, but instead I would start crying," he said.
He experienced several episodes in which he felt as if he was having a heart attack. "It would come out of nowhere," Globerman said. "I felt like I was losing my mind."
He thinks now that his own near disaster unleashed "demons" he didn't even know he had from incidents throughout his career. And he felt he couldn't ask for help.
"A lot of the support you'd get from a normal incident wasn't there," he said. "Other than a few people, everybody worked on the fire for about a month straight."
He struggled through it on his own. Anxiety medication seemed to help. He said he's not proud of having used it, but "after five months, I can honestly say that the demons don't seem to bother me anymore."
Mullan, the Las Vegas nurse who did not seek counseling, said she is not sure she has "processed" the mass shooting almost a year later.
"Certain things trigger emotions that I didn't expect," Mullan said.
At a recent luncheon she attended, victims from the shooting shared their stories.
"It hit me like a ton of bricks," Mullan said. "And, yes, I did cry."
The effort developed partly out of the realization that untreated mental health conditions negatively affect patients' physical health, thus costing the system more money.
AUSTIN, Texas — Kerstin Taylor fought alcohol and substance abuse problems for two decades. She periodically sought help through addiction and psychiatric treatments to stay sober, but she continued to relapse.
That unrelenting roller coaster, and the emotional and mental fallout, left her with little energy or resources to take charge of her overall health. Taylor, 53, has asthma and doctors told her she was at risk of developing diabetes.
"I wasn't doing anything to help myself," she said about her physical health.
Then an opportunity to get coordinated mental and physical health care services helped turn life around for Taylor, who also lives with bipolar and obsessive-compulsive disorders.
Until recently, health care professionals, in general, treated the mind and body separately and cared for them under different systems. That meant someone like Taylor, who relies on public transportation, had trouble getting to referrals for physical care at locations far away from her psychiatric appointments. That made follow-ups unlikely.
In 2012, Integral Care in Austin offered Taylor a holistic approach, with access to physical health care and a program to manage chronic disease, on top of her regular psychiatric care. Many of the services were available either at the clinic or in her home, and one case manager would help Taylor handle it all.
The seamless care made a big difference, Taylor said, because her recovery depends on addressing all aspects of her health, not just her mental state.
"With chronic-disease [management], resting well, good nutrition, that's a full package right there," Taylor said. "It has really built me up to be a better woman."
Now she has her own efficiency apartment in south Austin and plans to volunteer for a local animal charity. She walks regularly with a chronic-disease case manager and has taken courses to learn how to cook healthful food on a budget.
Efforts to provide integrated care are spreading, especially in public health clinics.
It developed partly out of the realization that untreated mental health conditions negatively affect patients' physical health, thus costing the system more money.
And in 2010, the Affordable Care Act established a mandate to give parity to mental health services.
A desire to reduce costly emergency room visits also is driving the trend.
A 2007 survey conducted by the Agency for Healthcare Research and Quality indicated that 1 in 8 emergency room visits were related to a mental health or substance abuse diagnosis. Those patients were also more than twice as likely to be admitted to the hospital during that visit.
Over the past decade, the federal government has bet on integrated care to help relieve the problem. From 2009 to 2015, the Substance Abuse and Mental Health Services Administration (SAMHSA) awarded 187 grants worth over $162 million to implement integrated care models.
The Centers for Medicare & Medicaid Services also is investing in integrated care. A 2013 report by SAMHSA found that Medicaid is the largest single payer for mental health services, and nearly a quarter of the inpatient hospital stays covered by the program were for mental health and substance abuse issues.
In Texas, 64 of the state's 73 federally qualified health centers offer some mental health services, according to data from the Health Resources and Services Administration. That's a jump from just 36 clinics over a decade ago.
Integrated health care is "fundamental" to achieving state goals such as reducing suicide rates, lowering incarceration rates for people with mental health issues and developing a savvier mental health care workforce, according to the state's behavioral health strategic plan.
Learning To Be Flexible And Multitask
Austin's CommUnity Care is a federally qualified health care clinic that serves mostly low-income and uninsured patients in several locations around the city. Pediatrician Tracy Lama-Briseño sees the benefits and challenges of integrated care there every day.
She said the average person would be surprised to learn how many young children and teens deal with mental health issues.
"We do have some pretty young kids that start to present at an early age with symptoms of anxiety or sadness," she said. "Parents separating … the loss of a loved one. All that can be pretty confusing to a young child."
Lama-Briseño's clinic sees about 23,000 medical patients per year, approximately 1,700 of whom use mental health services.
Sometimes the boundaries of responsibility can get blurred between mental and physical health care, she said. "I feel like I do a little bit more social work than I would like," she said. "But in the end, it's about taking care of the kids and the families."
Addressing mental health in primary care gives access to people who might never seek it out, but it also opens the door to additional responsibilities for Lama-Briseño. For instance, CommUnity Care administers a two-question depression screening to every new patient older than 12 and repeats it for existing patients once a year. The results can prompt further action.
Lama-Briseño describes how her young patients can come in for one thing, like an earache, and then the visit turns into something completely different. She said it all happens quickly.
"You can't say ‘OK, make another appointment,'" she added. "It has to be, you know, dealt with then and there. And so I definitely had to learn how to be flexible and sort of multitask."
Lack Of Mental Health Specialists
One of the challenges for the integrated model is recruiting mental health professionals. Approximately 1 million adults statewide have a "serious mental illness," according to the Texas Health and Human Services Commission, and more than 80 percent of Texas' 254 counties don't have enough mental health professionals to care for patients.
"My concern, actually, is that we don't have a big enough pipeline to fill these jobs that are gonna be available," said Neftali Serrano, executive director of the Collaborative Family Healthcare Association, an advocacy group for integrated care.
Serrano likened the problem to trying to build a plane while flying it. The health care system can't just stop, so people need to be trained in this new way so that, as integrated care becomes more common, they'll be ready to work, he said.
"This is not just about plopping a mental health professional in a primary care setting," he said. "It takes … a certain kind of behavioral health professional, and well-trained physicians and nurse practitioners and [physician assistants] to do this work well."
Buy-in from primary care doctors is another piece to the complicated puzzle of integrated care. While surveys show many support integrating mental health professionals with primary care, some lack the incentive to change their practices.
Dr. Ernest Buck is chief medical officer of Driscoll Health Plan, which serves mostly kids and families on Medicaid in a highly rural area that spans 26,000 square miles from south of San Antonio all the way down to Brownsville. Buck said most practices in his network aren't willing to bring on a therapist.
"It's hard to start a new model where a physician's practice could be put at risk, particularly at Medicaid rates," which tend to be lower than private insurance plan payments, he said.
Also, many primary care doctors simply weren't trained to work this way — collaboratively, on a team with mental health professionals.
Bill Tierney, head of Population Health at the University of Texas-Austin's Dell Medical School, said that when he was a practicing family doctor he rarely worked with mental health professionals.
"For 15 years, I practiced with no mental health support," he said. "If I sent [patients] to the mental health clinic, I didn't know whether they got there. They had a separate information system, I couldn't see how they were being treated, and patients often didn't want to go to see the shrink."