Tagged California Healthline

‘Tsunami’ Of Alzheimer’s Cases Among Latinos Raises Concerns Over Costs, Caregiving

SACRAMENTO, Calif. — Florence Marquez liked to describe herself as a cannery worker, even though she was best known in her heavily Latino East San Jose neighborhood as a community activist.

She strode alongside Cesar Chavez in the farmworker movement during the 1960s and 70s. She helped build affordable housing for poor families near her local church.

But eight years ago, Florence, now 86, couldn’t find her way to the house she had lived in for 50 years. “That’s when we knew she needed 24-hour care,” said her oldest daughter, Barbara Marquez, 61.

Florence was diagnosed with Alzheimer’s disease, which robbed her of her memory and her fierce independence. Across the United States, stories like hers are becoming more common, particularly among Latinos — the fastest growing minority in the country.

With no cure in sight, the number of U.S. Latinos with Alzheimer’s is expected rise by more than eight times by 2060, to 3.5 million, according to a report by the USC Edward R. Roybal Institute on Aging and the Latinos Against Alzheimer’s network.

Advanced age is the leading risk factor for Alzheimer’s disease and the likelihood of developing Alzheimer’s doubles about every five years after age 65. As a group, Latinos are at least 50 percent more likely than whites to have Alzheimer’s, in part because they tend to live longer, the report notes.

Barbara Marquez visits her mother Florence Marquez at her nursing home on Friday, December 16, 2016. Barbara was her mother’s primary caregiver until the family decided to put their mother in a 24-hour care facility. (Heidi de Marco/KHN)

Barbara Marquez visits her mother Florence Marquez at her nursing home, Sagebrook Senior Living, in Carmichael, Calif., in December 2016. Barbara was her mother’s primary caregiver until the family decided to put their mother in a 24-hour care facility. (Heidi de Marco/KHN)

“This is an incoming tsunami,” said Dr. William Vega, one of the report’s authors and the Roybal Institute’s executive director. “If we don’t find breakthrough medication, we are going to be facing a terrible financial crisis.”

That tidal wave of Alzheimer’s cases is prompting some tough conversations in Latino families, who often pride themselves on caring for elders at home, rather than placing them in nursing homes.

Those talks come with a lot of guilt, Barbara said. Until recently, Barbara was her mother’s primary caregiver. Her sister and brother helped out.

“But it was more than I could have anticipated,” Barbara said, recalling sleepless nights as she tried to make sure Florence didn’t get up and wander off. “It impacts your health, it impacts your marriage. So we looked for help.”

About 1.8 million Latino families nationwide care for someone with Alzheimer’s and other types of dementia. And while the Roybal report shows that Latino families are less likely than whites to use formal care services, such as nursing home care, institutionalized care is becoming more common among these families.

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Between 1999 and 2008, the number of elderly Latinos living in U.S. nursing homes grew by about 55 percent, a rate that outpaced the growth of the overall Latino population during that time, according to research published in July 2011 in Health Affairs.

That can be costly. Nationwide, the average cost for basic services in an assisted living facility is $43,200 per year, according to the Alzheimer’s Association. Yearly nursing home care now averages more than twice that, at slightly more than $92,000.

For many Latino families, getting outside help isn’t an option. It’s often too expensive for seniors who aren’t eligible for Medi-Cal, California’s version of the Medicaid program for low-income people, which generally pays for nursing home care. Immigrants who are in the country unlawfully do not qualify for it, nor do people whose incomes are too high.

Florence’s children decided to take their mother out of her house in San Jose, and they brought her to live with her daughter Barbara in Fair Oaks, just outside Sacramento. They sold the San Jose house, thinking it would help pay for institutionalized care should their mom need it down the road.

She did not qualify for Medi-Cal, so she lived with Barbara for about three years. But after trying out a senior day care program outside of the house at a cost of about $78 a day, Barbara and her family placed Florence in a senior home in the Sacramento suburb of Carmichael, where she has been living for the past year.

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Dwindling Resources

The decision to institutionalize Florence Marquez left her children feeling both guilty and overwhelmed by the steep expense. Her care now costs $3,000 to $4,000 per month, they said. They pay extra for specialized services.

They had the proceeds from the sale of Florence’s house, “but those resources are dwindling,” Barbara said. “What do we do when that money is gone?”

Marquez, 85, was diagnosed with Alzheimer’s disease eight years ago. She lived in the same house for 50 years, but one day she couldn’t find her way back home. (Heidi de Marco/KHN)

Florence Marquez, 85, was diagnosed with Alzheimer’s disease eight years ago. She lived in the same house for 50 years, but one day she couldn’t find her way back home. (Heidi de Marco/KHN)

The Roybal study estimates that the cumulative economic impact of Alzheimer’s among Latinos will hit $2.35 trillion by 2060. That figure includes the costs of medical and long-term care, as well as the lost earnings of family members who provide unpaid in-home care, and of the Alzheimer’s victims themselves, according to the study.

Gustavo Lopez of Chicago cares for his mother, Agustina Lopez, 76, who was diagnosed with Alzheimer’s disease seven years ago.

Gustavo, 48, and his four siblings looked into assisted living but couldn’t afford it. Agustina, after moving between her children’s homes, eventually landed with Gustavo, her youngest.

When Gustavo first took on the role of primary caregiver, his mother still did most things on her own, he said. But she now relies on him to help her eat, bathe, dress and take her medication.

So Gustavo needs a job with flexible hours. He’s worked mostly as a waiter. Other employment opportunities have come his way, some with better pay, but caring for his mother comes first, he said.

Asking For Help

Gustavo does get some help from family friends who check in on his mom while he is at work. He also found Casa Cultural in Chicago, a social service agency that offers a day program for seniors. He can drop his mom off at the center for a few hours, giving him a respite.

Free or low-cost programs like these are available in many communities, but families need to do research and ask for help, said Constantina Mizis, president of the Chicago-based Latino Alzheimer’s and Memory Disorders Alliance.

The alliance, formed in 2009, focuses on family members who are primary caregivers. Mizis said she has met many caregivers who are near their breaking point. The nonprofit offers training for them, helps find resources to boost their own well-being and puts on community events for families.

When seeking support, the best place to start is at a local community group or center — a church, a nonprofit, a United Way office, or the local Alzheimer’s Association chapter, for example, Mizis said. These groups will most likely refer caregivers to a county’s Agency on Aging or a state’s Department of Aging.

There, families are assigned a social worker who can discuss what benefits are available. If an Alzheimer’s patient qualifies for Medicaid, these benefits could include caregiver training and payment through programs such as California’s In-Home Supportive Services. But benefits and eligibility vary by state.

In 2010, the Social Security Administration recognized early-onset Alzheimer’s as a medical condition eligible for disability income. That could help people whose Alzheimer’s disease is diagnosed before the age of 65, but many Latino families aren’t aware the program exists, Mizis said.

A Push For Awareness

Because Latinos are more likely to use informal and more affordable care options, the Roybal report calls for improving training and resources for families in both English and Spanish.

Among the caregivers who opt to keep a parent with Alzheimer’s at home is Julia Garcia, of Houston, Texas. She rotates with her three daughters to watch her mother, Marcela Barberena, 85, who was diagnosed with the disease last year.

Julia, who had been unfamiliar with Alzheimer’s, initially thought her mother’s forgetfulness and childlike behavior was due to age.

“Too often people will see Alzheimer’s as a result of old age, but this brain-deteriorating disease is not natural,” said Vega, co-author of the report.

Julia Garcia said she realized it was something more serious when her mother took a shuttle bus from Houston’s international airport without knowing her destination.

“We had agreed I’d pick her up, but she left on her own,” Julia said. “She ended up downtown. It was the scariest moment of my life.”

As a new caregiver, Julia reached out to her local Alzheimer’s Association chapter for information. While some resources are available in Spanish in the Houston chapter, Julia noticed very few Latinos attending the informational workshops or classes.

Barbara Marquez takes her mother, Florence Marquez, on a walk on Friday, December 16, 2016. (Heidi de Marco/KHN)

Barbara Marquez takes her mother, Florence Marquez, on a walk. (Heidi de Marco/KHN)

Spanish-language media provided little information about the disease. “You rarely hear anything about it on TV or the radio,” she said.

In addition, many Latinos, including the Marquez, Lopez and Garcia families, are often unaware of clinical trials through which families can gain access to experimental therapies and medications at little or no cost.

Latinos are underrepresented in clinical trials sponsored by the National Institutes of Health: They account for 17 percent of the U.S. population but only 7.5 percent of participants at the 32 NIH-funded Alzheimer’s research centers across the country, according to the Roybal study.

Latino volunteers for these trials are important in helping researchers develop Alzheimer’s treatments that work for all ethnic groups, the report says.

“This is why it is so important to invest in the education of these communities,” Mizis said.

Her group helps train promotoras, or community health educators, in regions with large Latino communities — including San Francisco, Los Angeles, Baltimore and New York. Going door-to-door, promotoras educate families about the disease.

“I see firsthand everyday how much help our communities need,” Mizis said. “And this need keeps growing.”

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Categories: Aging, California Healthline, Mental Health, Public Health, Syndicate

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For California’s Smallest Businesses, Obamacare Opened The Door

If Republicans in Congress scrap the Affordable Care Act, Carmina Bautista-Ortiz might have to go back to Mexico for health care. But she’d rather spend the time running the printing shop she and her husband own in Jurupa Valley, a city about 50 miles east of Los Angeles.

For at least 10 years, before the Affordable Care Act made it possible for them to get insurance, Bautista-Ortiz and her husband Roger had been uninsurable — she because of a heart condition known as tachycardia, he because of high cholesterol.

Bautista-Ortiz crossed the border to get tests and specialty care for her rapid heartbeat. Her husband was slapped with a $20,000 hospital bill, which Carmina spent two years negotiating down until the hospital dismissed the debt.

Three years ago, the couple was finally able to buy subsidized health coverage through the state’s Obamacare exchange, Covered California, and Bautista-Ortiz said they now spend less time worrying about how to get care.

“Our health is … basically the most important thing that we have,” said Bautista-Ortiz. “If you’re not feeling well, you’re not going to do your job the right way.”

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Under Republican-led plans to repeal the Affordable Care Act, hundreds of thousands of self-employed people in California are at risk of losing their ability to buy affordable insurance. Some business owners welcome the rollback of the law, but the smallest of California businesses — entrepreneurs and contract workers who buy insurance on their own through Covered California — have the most to lose under a repeal.

That worries small business advocates who favor the Affordable Care Act. They say putting health care coverage out of reach of the self-employed could threaten Americans’ entrepreneurial spirit and burden people who create jobs and take on financial risk.

“When you’re providing a benefit that allows folks to take that risk with a little more of a safety net … that allows more entrepreneurs to take the plunge,” said Mark Herbert, California Director for Small Business Majority, an advocacy organization that opposes repeal.

Nationally, California has one of the highest rates of small business owners who get their coverage through a health insurance exchange — 16 percent — according to a U.S. Department of the Treasury analysis of 2014 data. And Covered California officials say nearly a quarter of enrollees — 377,000 people — declared themselves “self-employed” as of December. Enrollees receive an average of $440 a month in tax credits to help offset insurance premium costs, a spokesperson for the exchange said.

Herbert said rolling back subsidized health care and the no-exclusion policy for preexisting conditions could lead entrepreneurs to abandon their endeavors for more secure jobs, or prevent them from setting up shop in the first place.

“Uncertainty is very scary,” Herbert said. “There are enough variables and challenges that small business owners face,” said Herbert.

Other self-employed people say the looming repeal of Obamacare may not make them change careers, but it would change their relationship to health care.

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Charlie Murphy, a sewer pipe inspector in San Rafael, Calif., signed up for health insurance through Covered California last year. He recently lost 20 pounds after a doctor’s check-up. (Courtesy of Charlie Murphy)

Charlie Murphy, a sewer pipe inspector in Marin County, says if the hefty government subsidies that help him pay his monthly premium disappeared, he’d drop his coverage, or get a skeletal policy instead.

“My focus would be more [on] something catastrophic, than [a plan that supports] health maintenance,” said Murphy, 54, who pays a fraction of a monthly premium of roughly $500. The rest is subsidized with federal money.

When Murphy signed up for health care last year, he decided it was time for a check-up, the first in seven years. He barely interacted with doctors during the previous fifteen years, which he spent uninsured.

He was surprised to hear that his blood sugar and blood pressure were higher than they should be.

“I thought I was in better health than I was,” Murphy said.

The doctor’s visit — and a break up with a girlfriend — inspired Murphy to lose 20 pounds this past year. He cut down on smoking and drinking alcohol, and learned he can “survive without cookies and pie.”

He got some mental health treatment for anxiety, too, which improved his “outlook,” he said.

Although Obamacare may have made a notable impact on his health, he said he wouldn’t pay more for insurance or abandon his career to keep the same health care access he has now.

“I like working for myself, it’s nice … Driving around with the dog,” said Murphy, who performs site visits on homes for sale, inspecting sewage systems.

Just as each individual experiences the health care system differently, small business owners’ perspectives on Obamacare also vary widely and are influenced by ideological views and how much care costs.

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Sunder Ramani, owner of Westwind Media in Burbank, Calif., pays the health care premiums for roughly a dozen employees who opt into his employer-sponsored plans. He says premiums he have been steadily increasing in recent years. (Courtesy of Sunder Ramani)

Sunder Ramani, who owns Westwind Media, a post-production company in Burbank, Calif., offers small group coverage to roughly a dozen employees, even though he’s not legally required to. He pays 100 percent of their premiums.

“I’ve been paying higher and higher premiums, but for what appears to be packages that are less and less attractive,” said Ramani. He is a member of the California Leadership Council of the National Federation of Independent Business, a conservative small business association which opposes the Affordable Care Act and sued to overturn the law when it was first passed.

Ramani said if his business revenue hadn’t grown over the past several years, he might have shifted more of the health cost burden onto his employees. While Obamacare may not be solely responsible for health cost increases, Ramani said, the law didn’t bring them down as much as it could have.

In California, premiums in the small group market have been going up, but recent premium hikes have been smaller than in previous years, according to data from one of California’s two insurance regulators, the California Department of Managed Health Care. Premiums grew by almost 10 percent for small employer plans in 2011, whereas this year, they rose less than 6 percent, according to the data.

Businesses with 50 or more workers have greater legal responsibilities under the Affordable Care Act. The health reform law requires them to offer employees affordable coverage or pay a penalty.

That employer mandate has created an administrative “headache” for small business owners, say the insurance agents who help them comply with new required paperwork.

What’s more, the new requirement on employers hasn’t increased the rate of people with job-based coverage, because most employers of that size already offered employee health care before Obamacare, according to researchers at the Urban Institute.

But to the individuals who run the smallest of California’s enterprises, the law gave them benefits that didn’t exist before — the guaranteed availability of insurance, and the financial support to pay for it.

The promised repeal of the federal health law, as well as other policy changes under President Donald Trump, is complicating Carmina Bautista-Ortiz’s decisions to hire more employees or offer health care to the two she currently has.

Right now, those two employees, hired late last year, are responsible for their own health care. One is covered through her husband, and Carmina suggested to the other that he find a policy on the open market.

Bautista-Ortiz plans to look into a group health policy and help her employees pay for coverage. But right now, she says, those decisions are on hold.

She’s not sure how a repeal of Obamacare would affect her business yet, but she knows it will affect her personally.

“We’re ready for the worst, and hoping for the best,” she said.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Categories: California, California Healthline, Covered California, Insurance, Repeal And Replace Watch, Syndicate, The Health Law, Uninsured

California Regulator Slams Health Insurers Over Faulty Doctor Lists

California’s biggest health insurers reported inaccurate information to the state on which doctors are in their networks, offering conflicting lists that differed by several thousand physicians, according to a new state report.

Shelley Rouillard, director of the California Department of Managed Health Care, said 36 of 40 health insurers she reviewed — including industry giants like Aetna and UnitedHealthcare — could face fines for failing to submit accurate data or comply with state rules.

Rouillard said she told health plan executives in a meeting last week that such widespread errors made it impossible for regulators to tell whether patients have timely access to care in accordance with state law.

“I told the CEOs it looks to me like nobody cared. We will be holding their feet to the fire on this,” Rouillard said in an interview with California Healthline. “I am frustrated with the health plans because the data we got was unacceptable. It was a mess.”

The state wasn’t assessing the accuracy of online provider directories that are used by consumers. But the new report suggests that insurers may be misrepresenting which providers they have under contract or are unable to collect accurate information.

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Flawed provider directories are a longstanding problem industrywide, and the proliferation of narrow networks on the Obamacare insurance exchanges and in employer health plans has sparked numerous consumer complaints.

Outdated and inaccurate provider lists can hinder patients from getting treated and, in some cases, lead to huge unforeseen medical bills when people unwittingly go out of network for care.

California officials discovered the latest problems while reviewing annual reports filed by insurers. In those reports, insurers submitted two sets of provider lists, one used during the year to measure patient access and the other a year-end tally. Often they were dramatically different.

UnitedHealthcare, the nation’s largest health insurer, listed 9,135 primary-care doctors on the provider list used during the year who were absent from year-end list — a discrepancy of 45 percent.

Cigna, another big insurer, named 8,572 on the one list who were not on the other, a 36 percent discrepancy. For Anthem Blue Cross, the discrepancy was 8,165 primary-care physicians, or 36 percent, and for Blue Shield of California it was 4,371 primary-care doctors, or 22 percent.

In another instance, the state said Aetna counted the same cardiologists in one county more than 160 times, inflating the number of specialists overall by 2,293. That overstated the list of specialists by 82 percent.

Overall, for seven insurers, the two sets of lists differed by 50 percent or more for in-network specialists.

Rouillard said provider directories can fluctuate over time, so some small variations between one list used during the year and another at year’s end would be expected. But she said the wildly different figures that were reported raised red flags and made it impossible to know whether enough doctors were available to see patients.

Some of these issues are not new. In 2015, California’s managed care agency fined Anthem $250,000 and Blue Shield of California $350,000 for overstating the breadth of their doctor networks.

Both Anthem and Blue Shield of California declined to comment on the state’s most recent findings. Aetna said it was still reviewing the state’s analysis.

Other health insurers referred questions to an industry trade group. Charles Bacchi, chief executive of the California Association of Health Plans, said some mistakes may have been made but emphasized that measuring patient access to physicians is difficult.

“Health plans are committed to providing timely access to health care and we believe that we provide that successfully,” Bacchi said. “Clearly this report demonstrates that we have work to do to improve our survey responses, and health plans are committed to working with the department to address it.”

Under California law, patients must get urgent care appointments within 48 to 96 hours. Primary-care visits must be scheduled within 10 business days and appointments with a specialist must come within 15 business days.

Yet many consumers continue to struggle to find in-network doctors to meet their needs.

David Discher of Redwood City, Calif., said he tried most of last year to find doctors who would take his Anthem Blue Cross insurance. The 39-year-old suffers from psoriatic arthritis and requires regular infusion treatments.

The Anthem directory for consumers listed three rheumatologists in his area. One doctor’s phone was disconnected and the other two were no longer accepting his Anthem plan, Discher said. His joint pain and swelling worsened while he waited nearly two months to see a specialist.

“It boggles my mind that insurers can’t keep their list up to date,” Discher said. “There is no excuse for how messy it is. Health insurers are engaged in false advertising.”

Consumer outrage over provider directories led to passage of a state law last year that requires insurers and medical providers to ensure the lists are accurate and regularly updated. It also requires health plans to reimburse consumers who are charged out-of-network prices because of an inaccurate provider list.

This latest review by regulators stemmed from a 2014 law sponsored by state Sen. Ed Hernandez (D-West Covina) that required insurers file reports to the state to combat problems with provider lists and barriers to care. He and consumer advocates urged regulators to step up enforcement against insurers that are violating the law.

“Their inability to accurately document which providers are in their networks raises serious questions about the reliability of these networks,” said Hernandez, chairman of the Senate Health Committee.

The state report analyzed data for 2015, and it applied to people in employer plans, individual policies and Medicaid.

Only four health plans submitted information without substantial errors. Two were full-service health plans, Community Health Group and Inland Empire Health Plan. The two others specialize in behavioral health: Human Affairs International of California and Managed Health Network.

The next round of reports from insurers on patient access and provider lists are due next month.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Categories: California, California Healthline, Insurance, Syndicate

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