Tagged Chronic Disease Care

Dialysis Patients Panic As Financial ‘Life Raft’ Becomes Unmoored

Russell Desmond received a letter a few weeks ago from the American Kidney Fund that he said felt like “a smack on the face.”

The organization informed Desmond, who has kidney failure and needs dialysis three times a week, that it will no longer help him pay for his private health insurance plan — to the tune of about $800 a month.

“I am depressed about the whole situation,” said the 58-year-old Sacramento resident. “I have no clue what I’m going to do.”

Desmond has Medicare, but it doesn’t cover the entire cost of his care.  So, with assistance from the American Kidney Fund, he pays for a private plan to cover the difference.

Now, the fund, which helps about 3,700 Californians pay their premiums and out-of-pocket costs, is threatening to pull out of California because of a new state law that is expected to cut into the dialysis industry’s profits — leaving patients like Desmond scrambling.

The letter portrayed the fund as helpless. “We are heartbroken at this outcome,” it read. “Ending assistance in California is the last thing we want to do.”

But supporters of the new law are calling the threat a scare tactic. State Assemblyman Jim Wood (D-Healdsburg), the author of AB-290, said there is nothing in the measure that prohibits the fund from continuing to provide financial assistance to patients.

“AKF has simply made a conscious decision, without merit, to leave the state despite the many accommodations I made by amending the bill in the Senate to ensure that it can continue to operate in California,” Wood said in a written statement.

What’s behind this dispute is the tight relationship between the American Kidney Fund and the companies that provide dialysis, which filters the blood of people whose kidneys are no longer doing the job.

People on dialysis usually qualify for Medicare, the federal health insurance program for people 65 and older, and those with kidney failure and certain disabilities. If they’re low income, they may also qualify for Medicaid, which is called Medi-Cal in California.

But dialysis companies can get higher reimbursements from private insurers than from public coverage. And one way to keep dialysis patients on private insurance is by giving them financial assistance from the American Kidney Fund, which helps nearly 75,000 low-income dialysis patients across the country.

The fund gets most of its money from DaVita and Fresenius Medical Care, the two largest dialysis companies in the country. The fund does not disclose its donors, but an audit of its finances reveals that 82% of its funding in 2018 — nearly $250 million — came from two companies.

Insurance plans, consumer advocacy groups and unions have accused the American Kidney Fund of helping dialysis providers steer patients into private insurance plans in exchange for donations from the dialysis industry. Wood said his bill is intended to discourage that practice.

American Kidney Fund CEO LaVarne Burton denied the accusations and said her group plays no role in patients’ coverage choices.

Starting in 2022, the new law will limit the private-insurance reimbursement rate that dialysis companies receive for patients who get assistance from groups such as the American Kidney Fund to the rate that Medicare pays. The rate change won’t apply to patients who are currently receiving assistance as long as they keep the same health plans. The bill will also address a similar dynamic in drug treatment programs.

To determine which patients receive financial aid, the law will require third-party groups to disclose patients’ names to health insurers starting July 1, 2020.

These disclosure requirements are spurring the American Kidney Fund’s decision to leave, Burton said. She argues that they conflict with federal rules and violate patient privacy.

“AKF has no choice but to leave or seek legal relief,” Burton said.

Brian Carroll says he had to move back in with his parents in 2016 after dialysis treatment because it left him too weak to work. Without premium assistance from the American Kidney Fund, he says, he’ll face even more financial strain. (Ana B. Ibarra/California Healthline)

In mid-October, the fund started sending letters to its financial aid recipients in California warning of its departure. And Nov. 1, it joined two dialysis patients in filing suit against the state, asking a U.S. District Court to rule the law unconstitutional.

Gov. Gavin Newsom cautioned against such actions when he signed the bill, and urged “both opponents and supporters to put patients first.”

But as the threats and legal battle play out, patients are caught “squarely in the middle,” said Bonnie Burns, a consultant with California Health Advocates, a Medicare advocacy group.

Their options may be limited, she said. Those who don’t work won’t have access to employer-sponsored coverage to make up the difference. And in California, Medicare recipients under age 65 are not eligible to purchase supplemental insurance known as Medigap.

The state Department of Managed Health Care offers a fact sheet for affected patients, directing them to programs such as Covered California and Medi-Cal.

DaVita and Fresenius said insurance counselors and social workers at their clinics are working with patients to find other options.

“We will continue to treat all patients, regardless of insurance status,” said Paige Hosler, vice president of insurance management at DaVita. Hosler noted that some patients may qualify for DaVita’s charity care program.

Dialysis companies have been at the center of recent legislative and ballot-box battles, and have spent big to defend their bottom lines. Last year, they poured a record-breaking $111 million into a campaign to defeat Proposition 8, a ballot initiative that would have capped their profits. The measure failed.

The industry also spent about $2.5 million in California on lobbying and campaign contributions in the first half of this year to oppose Wood’s measure.

Desmond said he understands why lawmakers targeted the dialysis industry but can’t fathom why they did so at the expense of patients.

Desmond was laid off from his job as a computer programmer in Massachusetts in 2009 and moved to California to join his brother. One year later, he was diagnosed with kidney failure.

He lives off his Social Security Disability Insurance benefits, which come to about $2,000 a month after his Medicare premiums are deducted. Medicare pays for 80% of his care.

He also qualifies for Medi-Cal coverage that comes with high out-of-pocket costs, so he relies instead on a private Aetna insurance plan to cover the remaining 20%. The American Kidney Fund has been paying the premiums for his private plan since 2015.

“What they did is take away our life raft and left us to drown,” he said of lawmakers.

Brian Carroll, 40, of Sacramento, has been on dialysis for five years. He moved back in with his parents in 2016 because, he said, dialysis left him too weak to work.

“I am now completely depending on other people,” Carroll said. The American Kidney Fund pays the $270 monthly premium for his private insurance plan that covers what Medicare doesn’t. “That’s an entire month of groceries and gas for me,” he said.

Carroll said he supported Proposition 8, even though dialysis companies argued it would force them to cut back services and shut down clinics.

In this situation, he’s not sure whom to blame — the lawmakers, who passed the law with no backup plan for patients, or the fund, which is essentially holding patients hostage.

“What I do know is that you can’t just leave dialysis patients like this,” Carroll said. “It’s cruel.”

This KHN story first published on California Healthline, a service of the California Health Care Foundation.

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When Caring For A Sick Spouse Shakes A Marriage To The Core

For a dozen years, Larry Bocchiere, 68, didn’t find it especially difficult to care for his wife, Deborah, who struggled with breathing problems. But as her illness took a downward turn, he became overwhelmed by stress.

“I was constantly on guard for any change in her breathing. If she moved during the night, I’d jump up and see if something was wrong,” he said recently in a phone conversation.  “It’s the kind of alertness to threat that a combat soldier feels. I don’t think I got a good night’s sleep for five years. I gained 150 pounds.”

As her chronic obstructive pulmonary disease worsened and heart failure set in, Deborah was taking 24 medications each day and rushing to the hospital every few weeks for emergency treatments.

“Toward the end, I couldn’t stay in the same room with her for too long because I couldn’t stand to watch her being so sick,” Bocchiere said. His wife died in 2013.

For many years, Larry Bocchiere cared for his wife, Deborah, who struggled with chronic obstructive pulmonary disease. When a spouse is seriously ill, Bocchiere says, “we lose our best friend, our love, our future. But your children, friends, relatives – they don’t get it.”(Courtesy of Larry Bocchiere)

Marriages are often shaken to the core when one spouse becomes sick or disabled and the other takes on new responsibilities. 

“You have to rewrite the relationship’s expectations. And the longer you’ve been married, the harder that is to do,” said Zachary White, an associate professor of communications at Queens University of Charlotte. With Donna Thomson, he’s the author of “The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver.”

Compared to adult children who care for their parents, spouses perform more tasks and assume greater physical and financial burdens when they become caregivers, an analysis of 168 studies shows. Symptoms of depression as well as strains on relationships are more common.

Communication often becomes problematic, as husbands and wives feel disoriented and uncertain about how to respond to each other. Especially early on, illness tends to “heighten emotion and short-circuit communication,” write Barbara Kivowitz and Roanne Weisman in their book, “Love In The Time of Chronic Illness: How to Fight the Sickness – Not Each Other.”

Both women were cared for by their husbands (Kivowitz suffered from chronic pain; Weisman had a stroke). “We were gobsmacked by how much illness took over the relationship,” Kivowitz said earlier this year in a video presentation.

Complicating these issues is isolation. “We often hear about family members who won’t get involved or are overly critical of the well spouse but never pitch in or visit,” said Robert Mastrogiovanni, 72, president of the Well Spouse Association, which offers support groups to members. “And then there are lifelong friends who drop out of the picture.”

Most of the time (55%), older spouses are caregiving alone as husbands or wives come to the end of their lives, without help from their children, other family members or friends or paid home health aides, according to research published earlier this year.

The risk is that marriages will be undermined by illness and essential emotional connections lost.

“The well spouse can go from being a partner and a lover to a nurse and a caregiver, which is an entirely different kind of relationship,” said Mastrogiovanni, who cared for his wife, Kathleen. She had multiple sclerosis for 50 years before she passed away last year.

Or spouses can become distant as they struggle with feelings of loss, fear, and, frequently, misunderstanding and anger.

“He wouldn’t talk to me. He would seem like he was angry at me, but I didn’t really understand,” said Terri Corcoran, 69, whose husband Vincent had Fragile-X associated tremor/ataxia syndrome, a neurodegenerative disorder.

It took five years for Vincent to get a diagnosis. During that time, Corcoran said, “I felt like I married someone I didn’t know. It was devastating. It took me a long time to realize his brain was impaired.”

Terri Corcoran’s husband, Vincent, had Fragile-X associated tremor/ataxia syndrome, a neurodegenerative disorder. Although Vincent couldn’t talk, Terri says she would sit with him and talk to him about what she was feeling: “He would put his arms around me, and I would say ‘I’m doing the best I can. I know this isn’t your fault, but it’s really hard.’ And I always ended up feeling better.”(Courtesy of Terri Corcoran)

How can older couples navigate these challenges and protect their relationships – an essential source of comfort and support – when illness strikes? Several experts offered suggestions:

Reset expectations. Couples need to face what is being lost as a result of illness and, at the same time, focus on what remains intact.

Dr. John Rolland, an adjunct professor of psychiatry at Northwestern University’s Feinberg School of Medicine and author of “Helping Couples and Families Navigate Illness and Disability: An Integrated Approach,” tells of a couple in their early 70s he’s counselling. Both were working when the wife started having symptoms of Parkinson’s disease five years ago.

In retirement, the couple had planned to do a lot of biking, hiking and adventure travel. Now her mobility is limited, he’s down in the dumps and tension has invaded the relationship.

Rolland’s advice: Figure out what you can do together and what each of you can do separately. He helped them see that they can share some cherished activities – reading books together and attending the theater – and add new ones, such as cooking. And the husband can still go biking, without worrying about making his wife feel bad, so long as they communicate openly about respecting each other’s needs.

Divvy up responsibilities. Couples need to retain a sense of balance in their relationships, to the extent possible. Often this is threatened as one spouse becomes less able to function and the other takes on more responsibilities.

Kivowitz has a practical suggestion: Create a list of everything that needs to be done in your household, then divide up tasks. If there are things that neither of you wants to do, brainstorm ways to find help.

In her video, she describes how she and her husband Richard did this. Kivowitz signed up for laundry, meal preparation, keeping medical records in order, researching her condition and arranging help at home. Richard took on grocery shopping, getting medications, dealing with insurance, paying bills, financial planning and working to keep the household afloat. Neither wanted to do housecleaning – a task that could be given to someone else.

Robert Mastrogiovanni cared for his wife, Kathleen, who had multiple sclerosis for 50 years before she passed away last year. They are pictured here at their wedding in 1968.(Courtesy of Robert Mastrogiovanni)

Include the ill spouse. Avoid assigning the ill spouse to a passive role of being “cared for.” To the extent possible, set boundaries around caregiving and maintain reciprocity in the relationship.

Rolland tells of a woman with polycystic kidney disease whose husband helped administer home dialysis three times a week: “They would go into a room where all the equipment was kept, and, when dialysis was over, close the door and focus on being a couple.”

When Mastrogiovanni retired from an accounting job with the government, he and his wife bought a van with a ramp and travelled all over the country. When she could no longer feed herself, they’d still go out to restaurants where he’d feed her by hand – something the couple’s therapist had encouraged.

When joint activities are no longer possible, just being with someone can express closeness and solidarity.

Although Corcoran’s husband couldn’t talk, she’d sit with him and talk to him about what she was feeling: “He would put his arms around me, and I would say ‘I’m doing the best I can. I know this isn’t your fault, but it’s really hard.’ And I always ended up feeling better.”

Expand your network. If friends and family members don’t seem to understand what you’re going through, find people who do. Well and ill spouses may need to find support in different places.

Bocchiere, who’s chairman of the Well Spouse Association, said that when a spouse is seriously ill, “we lose our best friend, our love, our future. But your children, friends, relatives – they don’t get it.”

The first time he went to one of the association’s support groups and listened to other spouses tell their stories, “I was home,” he said.

Make meaning. “At some point,” White said, “you have to be able to make meaning of what you’re going through as a caregiver and incorporate this into a new sense of identity.”

For many people, meaning revolves around the notion of “fidelity” – commitment to their spouse, their vows and the “we” of their relationship, he said.

Corcoran converted to Catholicism the year that her husband was diagnosed and found solace in her faith and her church. “I kept praying that our marriage would have meaning,” she said.

Learning that people from her church saw her marriage as “loving” gave a deep sense of satisfaction. Ultimately, Corcoran came to understand “this is a cross my husband and I were carrying together.”

Kivowitz has observed a profound shift in herself and others, from “caregiving as a set of daily responsibilities” to caregiving as an expression of compassion.

“Measure success,” she said, “by how well you connect, love and feel loved.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

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