Phyllis Krantzman knows what she should do, but like many of her peers, the 71-year-old doesn’t know how to approach a casual acquaintance to ask who will take care of her when she needs it most.
Krantzman, of Austin, Texas, is among a growing number of seniors who find themselves alone just when aging and end-of-life care becomes real.
Unmarried, with no children, her younger sister, by seven years, died in 2014. Krantzman’s social network is limited to a handful of work colleagues and a few acquaintances.
“I’m very fearful of when I reach that place in my life when I really need help and maybe can’t take care of myself anymore,” she said. “I have nobody to turn to.”
Krantzman represents a universe that’s come to be known among geriatric specialists as “elder orphans” — seniors with no relatives to help them deal with physical and mental health challenges. Their rising numbers prompted the American Geriatrics Society this week to unveil guidelines for a segment of these older adults who can no longer make their own medical decisions and have no designated surrogates. The nonprofit dubbed them “unbefriended” and called for a national effort to help prevent a surge among incapacitated seniors who don’t have a decision maker and face a health crisis.
Single seniors have always existed, but demographic and social changes have slowly transformed aging America. In 1900, average life expectancy was 47. Now, the combination of increased longevity, the large and graying baby boom generation, the decline in marriage, the rise in divorce, increased childlessness and family mobility has upended the traditional caregiving support system.
Among the indicators:
— A Centers for Disease Control and Prevention report this year shows the number of Americans older than 100 years old increased almost 44 percent between 2000 to 2014.
— Twenty-two percent of people over age 65 are — or risk becoming — elder orphans, according to a 2015 study by New York geriatrician Maria Torroella Carney.
— A U.S. Census report from 2014 projected by 2050 the 65 and older population to be 83.7 million — almost double the 2012 estimate of 43.1 million.
— The nonprofit Population Reference Bureau in Washington, D.C., reported earlier this year that family provides more than 95 percent of informal care for older adults who aren’t in nursing homes.
“Americans are spending less time than ever in the married state,” said Susan Brown of the National Center for Family & Marriage Research at Bowling Green State University in Ohio, which “raises questions about who’s going to care for these people as they age and experience health declines.”
Reference Bureau demographer Mark Mather said the combination of aging boomers and family dislocation is creating “a potential caregiving crisis or at least major challenges down the road.”
The oldest boomers are now 70. With more on the horizon, the impact of smaller family size will become more pronounced: Baby boomers had fewer children than previous generations and significant numbers are childless, said demographer Jonathan Vespa, of the U.S. Census.
“As people have fewer children, there are fewer people in that next generation to help take care of that older generation,” he said.This KHN story also ran in USA Today. It can be republished for free (details).
New 2015 U.S. Census data also reflects more elders who live alone — 42.8 percent of those 65 and older. Yet new twists have emerged, such as cohousing, in which people live independently in housing clusters with a common building for meals and socializing. Such thinking, said gerontologist Jan Mutchler, of the University of Massachusetts Gerontology Institute in Boston, suggests a “shift [in] the way people are thinking about who can I rely on and who’s going to be there for me.”
Katie McGrail, 77, spent much of her working life in San Antonio or New York, finally retiring to Texas five years ago. McGrail and her friends daydream about “having these little houses around the spoke of a wheel and at center have a nurse and a good cook.”
Mary Gleason, 85, is an unmarried only child with no children. She’s lived on St. Thomas in the Virgin Islands for 51 years, where she developed a close group of “extremely supportive friends.” Most, she said, are five to 15 years younger, which proved important in January when Gleason had open heart surgery.
“That was it,” she said, noting she never talked about future care. “Now that I’m feeling so much better, I try to keep away from discussing that kind of stuff.”
It’s a mindset Mutchler knows well.
“People in general avoid planning for unpleasant things,” she said. “A lot of people don’t have wills or think about long-term care or what they would do if they needed it.”
Timothy Farrell, a physician and associate professor at the University of Utah School of Medicine in Salt Lake City who worked on the new policies, said he would “regularly encounter patients with no clear surrogate decision maker.”
The guidelines include “identifying ‘non-traditional’ surrogates — such as close friends, neighbors, or others who know a person well.”
Boosting social ties among elders is part of a national campaign launched last week by the AARP Foundation and the National Association of Area Agencies on Aging, a nonprofit. The aim is to combat loneliness.
Krantzman says insomnia, which has plagued her for decades, has deepened her isolation.
“I had to give up having close friends and that is one of the reasons why I find myself so alone,” she said.
Although she works part-time and lives in a government complex for low-income seniors, Krantzman said the computer she bought at age 62 has expanded her reach to connect with others.
“The computer is so important to me because I have so few people in my life,” she said. “Having the computer thoroughly altered my entire life.”
KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.
To the millions of Californians who obtained health insurance as a result of the Affordable Care Act, know this: Despite the election of Donald Trump, who has promised to repeal the health law, nothing is going to happen to your coverage immediately.
In fact, open enrollment for Covered California plans continues through January 31 despite the election outcome.
“Don’t panic. The open enrollment period is set,” says Myles Pappadato, an insurance agent based in Valencia whose firm, QuoteBroker, has about 600 clients with Covered California policies. He fielded about a dozen calls the morning after the election from worried consumers.
“Don’t make any decisions based on speculation,” he adds.
Beyond that, uncertainty reigns.
In California, two major Obamacare initiatives brought health insurance to millions of people: About 1.3 million of you have plans through Covered California, the state health insurance exchange. And about 3.7 million others joined Medi-Cal, the state’s Medicaid program for low-income residents, after it expanded its eligibility criteria.
It’s not yet clear how Trump and the Republican-dominated Congress will seek to pick apart Obamacare next year — or how long that could take. An outright repeal might be difficult because it would require 60 votes in the U.S. Senate to overcome a Democratic filibuster, which means the Republicans would need the support of at least eight Democrats.
Republicans could use budget procedures instead to kill critical portions of the law, including the funding for Medicaid expansion in states like California and the federal tax credits that lower premiums for most Covered California enrollees.Ask Emily
A series of columns answering consumers’ questions about California’s changing medical landscape.
Send questions for Emily to AskEmily@kff.org
“If the subsidies go away, the vast majority of folks are not going to be able to afford their coverage. They’re struggling as it is,” Pappadato says.
Officials from Covered California, Medi-Cal and the state Health and Human Services Agency are scrambling to figure out what’s next, but the outlook isn’t good.
“I cannot provide false comfort,” says Anthony Wright, executive director of the advocacy group Health Access California. “This is a real risk for coverage that millions of Californians depend on.”
Lyn Jutronich, of San Diego, came close to tears when describing the anxiety she felt before Obamacare. Jutronich, 44, has three children under the age of 12 who are now covered by Medi-Cal. She and her husband, a contractor, have a Covered California plan and receive tax credits.
“When my child got sick or injured, I used to ask myself, ‘How am I going to pay for this?’ That burden was completely relieved” by Obamacare, she says.
“The thought of having to go back to that is just shattering.”
Before the law, Jutronich went without insurance for more than a year because she had preexisting medical conditions. At that time, insurers were not required to cover people who had previous medical problems, or they could charge them significantly more.
The premiums for the family’s insurance — with her included — would have been about $3,000 to $4,000 a month before Obamacare, so they opted to buy a plan for the kids and her husband, because of his dangerous job.
“I’m terrified that in the near future I will have to go without insurance again, and that I will again have that horrible ‘Do I really need to take my child to the emergency room today or can it wait?’ question looming in my head,” Jutronich says.
Covered California’s executive director, Peter Lee, wants to reassure consumers, saying it’s business as usual for now.
“People have some reasonable questions and those questions will take time to answer,” Lee says. “We will be working very hard to get the word out that the subsidies are available and the rules remain in place under the law.”
The Department of Health Care Services, which administers Medi-Cal, says “there are no immediate changes” to that program. It did not offer advice to Medi-Cal enrollees.
But Jen Flory, a senior attorney at the Western Center on Law & Poverty, says Medi-Cal expansion enrollees should “feel free to use their Medi-Cal. If they qualify and haven’t applied, they should still apply. No new law has been passed.”
And if you’ve been waiting to get a medical procedure or delaying an exam, “don’t put anything off,” Flory suggests.Use Our Content This story can be republished for free (details).
State Sen. Ed Hernandez, D-West Covina, chair of the Senate Health Committee, also wants Californians to keep enrolling in the coverage they’re eligible for and using the coverage they have.
“Continue doing what you’ve been doing. You have health insurance. Use it as you need it,” he says.
Hernandez expects California lawmakers to do “everything we can to protect patients to make sure they have access to health care.”
Could that include finding state money to replace any federal funding that may be cut?
“We have to ask ourselves the billion-dollar question: Does the state take on that responsibility?” Hernandez says. “That’s a discussion the state Legislature will have to have, but we’re not there yet.”
Wright, of Health Access, urges Californians to advocate for themselves in the meantime.
“Until something happens, people should sign up for the benefits and then join the political fight to keep them,” he says.
Jeffrey Kolsin, a certified public accountant in Fountain Valley, agrees that consumers need to speak up.
Kolsin, 61, and his wife receive tax credits for their Covered California policy, and the cost of their monthly premiums would double if federal funding were cut.
“What happens to people like myself who have depended on those tax credits, and all of a sudden they’re gone and now you have this huge bill?” he asks. “How do you pay for it?”
He plans to share his opinion with lawmakers, asking them not to repeal or gut Obamacare without coming up with a replacement plan first. He wants others to do the same.
“Write to the existing and new Congress members and Trump,” Kolsin says. “Fill their mailboxes, basically saying ‘Whatever you do with the Affordable Care Act, do not kill it until the day the new law goes into effect.’”
Chris Cunningham was so thrilled with Indiana Gov. Mike Pence’s Medicaid expansion under the Affordable Care Act, she readily accepted his invitation to an event celebrating its first anniversary in January.
Gaining Medicaid ended her eight years without health coverage and paid for her treatment of a thyroid problem, her lung disease and prescription drugs to help both. She stopped working in 2008 to care for her disabled husband.
“It was a game changer for me,” the Indianapolis woman said late last week.
Election Day’s game-changing results are on her mind now.
Indiana Gov. Mike Pence was one of 10 Republican governors to expand Medicaid under Obamacare, but as President-elect Donald Trump’s running mate, Pence is now calling for the health law’s repeal and replacement.This KHN story also ran on NPR. It can be republished for free (details).
If that happens, millions of low-income people around the country added to the state-federal insurance program since 2014 under the health law are at risk of losing their health insurance. Thirty-one states and the District of Columbia have expanded Medicaid, extending coverage to about 12 million Americans.
“I don’t see how a compassionate human being can rip health care away from millions of people,” Cunningham said.
What Pence did with Indiana’s Medicaid program may place him in a conciliatory middle ground in the political battles to come over Obamacare’s future. He called for the law’s repeal even before joining Trump, but also pushed Medicaid’s expansion in a conservative direction in advocating stricter eligibility requirements on low-income people receiving government-paid health care.
Neither Trump nor other top Republicans have spelled out what a replacement would look like. Trump has said he supports Medicaid block grants to states — a way of stabilizing federal funding that could raise states’ costs and force them to cut benefits or eligibility.
The health law allowed states to open Medicaid to all adults with incomes at or below 138 percent of the federal poverty level, with all the extra costs paid by the government for the first three years, 2014 through 2016.
Pence took the federal money but won the Obama administration’s approval to add features that set Indiana apart from other expansion states. For example, recipients are required to pay money — $1 a month for many — into special accounts that Pence contends will make them more conscious of the costs associated with health care.
Healthy Indiana Plan 2.0 pushed Medicaid’s traditional boundaries, which is why it has captured attention in conservative states. The plan demands something from all enrollees, even those below the poverty level. Individuals who fail to keep up their contributions lose dental and vision coverage and face copayments. Those above the poverty level can temporarily lose all coverage if they fall behind on contributions.
Proponents, including Pence, have said the strategy makes Medicaid recipients share financial responsibility for their care and that it will save Indiana money by reducing unnecessary services and inappropriate emergency room use.
Pence has said Indiana’s program has lowered ER use, led to recruitment of more physicians to treat recipients and succeeded in getting most recipients to contribute monthly payments.
“This is an innovative, fiscally responsible program,” Pence said at the expansion’s first anniversary event that Cunningham attended. “We are improving outcomes, improving lives and improving the fortunes of Hoosiers.”
Cunningham said last week she remembers that day well and the personal connection Pence made with her and other new enrollees.
“It does give me hope that Gov. Pence started Medicaid expansion here and talked highly of it,” she said. “When I met him that day, it gave me a sense that even though I didn’t agree with 75 percent of what he stood for, I found him to be a really good man [who] really wanted to improve the health situation for people of Indiana.”
Indiana hospitals are also hoping Pence will be an advocate for preserving the expansion.
The expanded Medicaid program pumped millions of dollars into the state’s hospital industry by providing them more paying patients and increasing their Medicaid reimbursements.
Brian Tabor, executive vice president of the Indiana Hospital Association, said the election results have him worried about future of Medicaid and Obamacare. But knowing Pence will have Trump’s ear could make a difference.
Pence “understands that with some flexibility, states can be successful at expanding coverage and that bodes well for states like Indiana,” he said. “He is passionate about the health and security that Medicaid provides to Hoosiers. I am confident that he will have a significant policy role in the White House and will use that in a way to preserve what we have in Indiana.”
Tabor said that while block grants or a per capita cap for Medicaid would give states more autonomy in running the program, he worries it would mean cuts in federal funding that would hurt recipients and providers.
Medicaid expansion’s in Indiana has provided vital funding to hospitals, particularly those in rural areas that have struggled to stay open. “It’s been a lifeline to many rural providers,” he said.
Susan Jo Thomas, executive director of Covering Kids & Families of Indiana, an advocacy group, seems less hopeful for the future of Medicaid expansion and the program overall even with Pence as VP.
“It’s scary to us,” she said of the prospect of losing Obamacare and Medicaid becoming a block grant program. While Republicans have proposed the block grant idea since the 1980s, she noted it could find stronger support because Congress has turned more conservative and most states have conservative governors.
For Cunningham, Medicaid expansion in 2015 came at the right time. She had been managing several group homes for the disabled in 2008 when she ended her career to care for her own disabled husband.
“I was in a desperate situation and I’ve been very grateful for the help,” she said.
For her at least, worries about not having insurance will disappear next May.
That’s when she will turn 65 and enroll in Medicare.
The 21st Century Cures Act now being refined by the lame-duck Congress is one of the most-lobbied health care bills in recent history, with nearly three lobbyists working for its passage or defeat for every member on Capitol Hill.
More than 1,455 lobbyists representing 400 companies, universities and other organizations pushed for or against a House version of a Cures bill this congressional cycle, according to federal disclosure forms compiled by the Center for Responsive Politics.
Work is nearing completion on a compromise expected to come up for a vote soon. While final details are still being negotiated, the House version that passed in June 2015 provided the National Institutes of Health $1.75 billion in additional annual funding over five years. The bill would keep generics off the market longer for drugs treating rare diseases and speed the drug and device approval process.This KHN story also ran on NPR. It can be republished for free (details).
Other than major appropriations bills, a transportation spending bill and an energy infrastructure funding bill, the Cures Act garnered more lobbying activity than any of the more than 11,000 bills proposed in the 114th Congress, an analysis of the CRP data shows. It’s also the second-most lobbied health care bill since 2011, following only the Medicare Access and CHIP Reauthorization Act of 2015, which, among other things, overhauled Medicare payments to health providers.
Putting a price tag on the lobbying is difficult because spending reports don’t break down spending by specific measures. The reports show that interested groups spent as much as half a billion dollars from 2015 through the second quarter of 2016 on all lobbying disclosures that included the 21st Century Cures Act.
“In a bill of this importance and consequence, a lot of groups have a lot of interest in every line in that bill, and they’re going to put as much pressure as they can on legislators — and maybe some executive branch people as well — to get favorable language in that bill to support their interests,” said former Rep. Lee Hamilton, who founded the Indiana University Center on Representative Government after spending more than three decades in the House of Representatives. “The more intense the lobbying, the more money is at stake.”
Senate Majority Leader Mitch McConnell identified the legislation as a priority after a 2016 election that has cast doubt on the future of the Affordable Care Act. Republican President-elect Donald Trump has vowed to eliminate “red tape” at the FDA but hasn’t specifically commented on the Cures Act.
“Absolutely this has gained a lot of attention on K Street,” said Tim LaPira, a political science professor at James Madison University. Every Congress, he said, a few dozen bills spark a “feeding frenzy.”
Even so, the bill hasn’t spurred as much lobbying as the Affordable Care Act in 2009, which brought out more than 1,200 organizations, according to CRP data.
The Pharmaceutical Researchers and Manufacturers of America, or PhRMA, the main trade group for brand-name drugmakers, applauded the House bill’s passage. The group’s lobbying reports naming the bill accounted for $24.7 million in spending by the group, which spent $30.3 million overall.
Its spokeswoman Allyson Funk said in a statement the trade group “appreciate[s] Congress’ continued interest in improving biomedical innovation and accelerating new treatments for patients.”
Several nonprofit patient advocacy and research groups have opposed the bill, citing concerns about endangering patients with simplified drug and device approvals.
Beyond the pharmaceutical industry, the bill’s supporters include universities, medical schools and groups representing them, as well as patient groups funded by drug and device companies, said Diana Zuckerman of the nonprofit National Center for Health Research, which has not lobbied the bill but has launched a campaign to convince Congress to “fix” it.
“It really is a David and Goliath issue of where the money is,” Zuckerman said.
AbbVie, the maker of Humira, a drug used to treat arthritis, ulcerative colitis and Crohn’s disease, reported $7.7 million in lobbying expenditures in disclosures listing the bill as an issue. The company’s total lobbying was $9.5 million this cycle.
Hospitals and medical schools, which oppose rising drug costs, supported the bill because the NIH funding could propel grants to medical and research institutions, Zuckerman said.
Johns Hopkins Medicine called enhanced biomedical research funding “long overdue.” Spokeswoman Jania Matthews said in an email that the bill would also “provide new tools at the FDA to accelerate the approval of new therapies and medical devices.”
The U.S. Chamber of Commerce generally supports the bill and reported $87.1 million in expenditures in disclosure reports that cited the Cures Act, with overall spending of $136.5 million through the second quarter of 2016.
The U.S. Oil and Gas Association, with lobbying expenditures of $293,000, lists the Cures Act as a legislative issue. Funding for the bill would partly come from selling crude oil from the U.S. Government’s Strategic Petroleum Reserve.
According to the House Committee on Energy and Commerce, money from selling oil would go toward NIH funding “because just as energy reserves are a national resource designed to protect and serve our citizens, so too is an investment in health innovation and research.”
The U.S. Oil and Gas Association declined to comment.
Additional lobbyists may be working on the bill under the radar. LaPira explained that lax lobbying disclosure requirements mean that some lobbyists may not disclose work on the bill, H.R. 6. That’s what he saw when the Affordable Care Act was passed, too.
“The clerk’s office is supposed to list the bill number if they know it, but nobody ever checks,” he said. “That’s another sort of trick of the trade: to hide in plain sight.”
The bill is considered a swan song for sponsor Rep. Fred Upton, whose tenure as chair of the Energy and Commerce Committee is nearing an end, said Paul Heldman, an analyst at Heldman Simpson Partners LLC, a research firm that provides health policy analysis to investors. The Michigan Republican garnered broad support from devicemakers, drug manufacturers, researchers and patient advocacy groups. He’s received more than half a million campaign dollars from pharmaceutical and health product groups in the last two election cycles.
The committee has received at least 36 letters of support. But in October, 13 groups, including the Center for American Progress, AFL-CIO and Public Citizen, urged members in a letter not to rush passage of the bill without first amending it to include drug price controls.
Before the election, it was unclear whether opposition from think tanks close to the Obama administration and Hillary Clinton would impede passage.
“It may still be an important issue, but I think less likely given the outcome of the election,” Heldman said.
KHN’s coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.
One of the privileges I have in taking photographs for In Custodia Legis is getting to see the Law Library’s rare book collection. For preservation’s sake, the rare books must be confined to a locked climate-controlled room, so it is always a treat when these items emerge from the vault. I have been snapping photos of the endpapers of the collection items that we’ve featured in blog posts over the years. Marbled papers in law books bring a particular surprise, like a happy ending to a ponderous legal story or a rest for weary eyes. Below are just three examples.
The Law Library’s copy of the Constitution of Norway features endpapers with a monochromatic shell pattern. The deep red color brings to mind a slide you might have seen under a microscope in high school biology class. This example is interesting in that it has a distinct glossy finish, as you might be able to see from the glare on the left side of the photo.
The Laws of Maryland, Enacted at a Session of Assembly, Begun and Held at the City of Annapolis, on Thursday the tenth day of October 1727 [bound with] Laws of Maryland … 1729 is a new acquisition to the Law Library’s collection this year. We have not yet featured this item on the blog, so this is a sneak peek! The book cover is a Turkish pattern that features five colors – salmon, teal, ochre, burgundy, and black.
CBPP will take a break over the long Thanksgiving weekend, but we’ll be back on our regular schedule on Monday.
This week we focused on the safety net. Alicia Mazzara reminded us that millions of Americans lack food and shelter this holiday season, though the numbers would be much higher if not for key safety net programs.