If you could invest $56 billion each year in improving healthcare for older adults, how would you spend it? On a hugely expensive medication with questionable efficacy — or something else?
This isn't an abstract question. Aduhelm, a new Alzheimer's drug approved by the Food and Drug Administration last month, could be prescribed to 1 million to 2 million patients a year, even if conservative criteria were used, according to Biogen and Eisai, the companies behind the drug.
The total annual price tag would come to $56 billion if the average list price, $56,000, is applied to the lower end of the companies' estimate.
That's a huge sum by any measure — more than the annual budget for the National Institutes of Health (almost $43 billion this year). Yet there's considerable uncertainty about Aduhelm's clinical benefits, fueling controversy over its approval. The FDA has acknowledged it's not clear whether the medication will actually slow the progression of Alzheimer's disease or by how much.
"This drug raises all kinds of questions about how we think about health and our priorities," said Dr. Kenneth Covinsky, a geriatrician and professor of medicine at the University of California-San Francisco.
Since most Alzheimer's patients are older and on Medicare, the medication would become a significant financial burden on the federal government and beneficiaries. Several experts warn that outlays for aducanumab, marketed as Aduhelm, could drive up premiums for Medicare Part B and Medicare supplemental policies and raise out-of-pocket expenses.
A likely additional cost: lost opportunities to invest in other improvements in care for older adults. If Medicare and Medicaid must absorb drug spending of this magnitude, other priorities are less likely to receive attention.
I asked a dozen experts — geriatricians, economists, health policy specialists — how they would spend an extra $56 billion a year. Their answers highlight significant gaps in care for older adults. Here's some of what they suggested.
Make Medicare more affordable. High out-of-pocket expenses are a growing burden on older adults and discourage many from seeking care, and Dr. David Himmelstein, a distinguished professor of urban public health at Hunter College in New York City, said extra funding could be directed at reducing those costs. "I'd cut Medicare copayments and deductibles. I think that would go a long way toward improving access to care and health outcomes," he said.Bottom of Form
On average, older adults on Medicare spent $5,801 out-of-pocket for healthcare in 2017 — 36% of the average annual Social Security benefit of $16,104, according to a report last year from AARP. By 2030, out-of-pocket health expenses could consume 50% of average Social Security benefits, KFF predicted in 2018.
Pay for vision, hearing and dental care. Millions of older adults can't afford hearing, vision and dental care — services that traditional Medicare doesn't cover. As a result, their quality of life is often negatively affected and they're at increased risk for cognitive decline, social isolation, falls, infections and depression.
"I'd use the money to help pay for these additional benefits, which have proved very popular with Medicare Advantage members," said Mark Pauly, a professor of healthcare management at the University of Pennsylvania's Wharton School of Business. (Private Medicare Advantage plans, which cover about 24 million people, usually offer some kind of hearing, vision and dental benefits.)
Over 10 years (2020 to 2029), the cost of adding comprehensive hearing, vision and dental benefits to Medicare would be $358 billion, according to the Congressional Budget Office.
Support family caregivers. Nearly 42 million people provide assistance — help with shopping, cooking, paying bills and physical care — generally to older relatives trying to age in place at home. Yet these unpaid caregivers receive little practical support.
Dr. Sharon Inouye, a geriatrician and professor of medicine at Harvard Medical School, suggests investing in paid services in the home to lessen the burden on unpaid caregivers, especially those tending to people with dementia. She would fund more respite care programs that give family caregivers short-term breaks, as well as adult day centers where older adults can socialize and engage in activities. Also, she recommends devoting substantial resources to expanding caregiver training and support and paying caregivers stipends to lessen the financial impact of caregiving. For the most part, Medicare doesn't cover those services.
"Providing these supports could make a huge difference in people's lives," Inouye said.
Strengthen long-term care. Shortages of direct care workers — aides who care for older adults at home and in assisted living facilities, nursing homes, residential facilities and other settings — are a growing problem, made more acute by the coronavirus pandemic. PHI, a research organization that studies the direct care workforce, has estimated that millions of direct care jobs will need to be filled as baby boomers age.
"We could greatly improve the long-term care workforce by paying these workers better and training them better," said Dr. Joanne Lynn, a geriatrician and policy analyst at Altarum, a research and consulting organization.
Help people age in place. Most older adults want to age in place, but many need assistance over time, surveys show. Will they be able to climb the stairs? Cook for themselves? Do the laundry? Take a shower?
Simple solutions can help, including relatively inexpensive home renovations (installing handrails on staircases, grab bars in bathrooms and better lighting, for example) and assistive devices such as raised toilet seats, shower stools or scooters. But Medicare doesn't pay for renovations or certain helpful devices.
Covinsky of UCSF would make a program known as CAPABLE (Community Aging In Place — Advancing Better Living for Elders) a Medicare benefit, available to all 61 million members. That program combines at-home visits from an occupational therapist and a registered nurse, usually conducted over 10 weeks, with up to $1,300 in services from a handyman.
Evidence shows it has a significant positive impact, helping seniors perform daily activities and stay out of nursing homes. The total cost: $3,000 per person. "For less than one infusion of aducanumab, you can greatly improve someone's quality of life and well-being," Covinsky said.
Find out what older adults need. Sarah Szanton, director of the Center for Innovative Care in Aging at the Johns Hopkins School of Nursing, developed CAPABLE. She would use $56 billion to assess every older adult annually to "figure out what they need to be able to live comfortably and independently. From that, I would generate a list of tailored interventions" — specific action items that might include CAPABLE or other programs, she told me.
Initiatives that could use extra funding might focus on managing depression, preventing falls or structuring activities for people with dementia, Szanton said.
Focus on prevention. A growing body of evidence suggests that dementia could be prevented — perhaps up to 40% of the time — if people didn't drink excessive amounts of alcohol, controlled blood pressure and obesity, managed depression, used hearing aids, stopped smoking, and regularly engaged in exercise, social interactions and cognitively stimulating activities, among other strategies.
"If I had $56 billion to spend, I'd focus on prevention," said Laura Gitlin, a dementia expert and dean of Drexel University's College of Nursing and Health Professions.
"There is more evidence for these strategies than there is for Aduhelm at the moment," said Dr. David Reuben, chief of UCLA's geriatrics department and director of its Alzheimer's and dementia care program.
Invest in social determinants of health. The health of older adults is shaped by the environments in which they live, their interactions with other people and how easy it is to fulfill basic needs.
Recognizing this, Dr. Anthony Joseph Viera, a professor of family medicine and community health at Duke University School of Medicine, said he would invest in "transportation for the elderly. Safe housing. Food. Programs that reduce social isolation. Those would end up helping a lot more people."
DUTTON, Mont. — Vern Greyn was standing in the raised bucket of a tractor, trimming dead branches off a tree, when he lost his balance. He fell 12 feet and struck his head on the concrete patio outside his house in this small farming town on the central Montana plains.
Greyn, then 58, couldn't move. His wife called 911. A volunteer emergency medical technician showed up: his own daughter-in-law, Leigh. But there was a problem. Greyn was too large for her to move by herself, so she had to call in help from the ambulance crew in Power, the next town over.
"I laid here for a half-hour or better," Greyn said, recounting what happened two years ago from the same patio. When help finally arrived, they loaded him into the ambulance and rushed him to the nearest hospital, where they found he had a concussion.
In rural America, it's increasingly difficult for ambulance services to respond to emergencies like Greyn's. One factor is that emergency medical services are struggling to find young volunteers to replace retiring EMTs. Another is a growing financial crisis among rural volunteer EMS agencies: A third of them are at risk because they can't cover their operating costs.
"More and more volunteer services are finding this to be untenable," said Brock Slabach, chief operations officer of the National Rural Health Association.
Rural ambulance services rely heavily on volunteers. About 53% of rural EMS agencies are staffed by volunteers, compared with 14% in urban areas, according to an NRHA report. More than 70% of those rural agencies report difficulty finding volunteers.
In Montana, a state Department of Public Health and Human Services report says, about 20% of EMS agencies frequently have trouble responding to 911 calls for lack of available volunteers, and 34% occasionally can't respond to a call.
When that happens, other EMS agencies must respond, sometimes having to drive long distances when a delay of minutes can be the difference between life and death. Sometimes an emergency call will go unanswered, leaving people to drive themselves or ask neighbors to drive them to the nearest hospital.
According to state data, 60% of Montana's volunteer EMTs are 40 or older, and fewer young people are stepping in to replace the older people who volunteer to save the lives of their relatives, friends and neighbors.
Finding enough volunteers to fill out a rural ambulance crew is not a new problem. In Dutton, where Greyn fell out of the tractor bucket, EMS Crew Chief Colleen Campbell says getting people to volunteer and keeping them on the roster has been an issue for most of the 17 years she's volunteered with the Dutton ambulance crew.
Currently the Dutton crew has four volunteers, including Campbell. In its early days, the Dutton ambulance service was locally run and survived off limited health insurance reimbursements and donations. At its lowest point, she said, her crew consisted of two people: her and her best friend.
That made responding to calls, doing the administrative work and organizing the training needed to maintain certifications more than they could handle. In 2011, the Dutton ambulance service was absorbed by Teton County.
That eased some of Campbell's problems, but her biggest challenge remains finding people willing to go through the roughly 155 hours of training and take the written and practical tests in this town of fewer than 300 people.
"It's just a big responsibility that people aren't willing to jump into, I guess," Campbell said.
In addition to personnel shortages, about a third of rural EMS agencies in the U.S. are in immediate operational jeopardy because they can't cover their costs, according to the NRHA.
Slabach said that largely stems from insufficient Medicaid and Medicare reimbursements. Those reimbursements cover, on average, about a third of the actual costs to maintain equipment, stock medications and pay for insurance and other fixed expenses.
Many rural ambulance services rely on patients' private insurance to fill the gap. Private insurance pays considerably more than Medicaid, but because of low call volumes, rural EMS agencies can't always cover their bills, Slabach said.
"So, it's not possible in many cases without significant subsidies to operate an emergency service in a large area with small populations," he said.
Slabach and others say sagging reimbursement and volunteerism means rural parts of the U.S. can no longer rely solely on volunteers but must find ways to convert to a paid staff.
Jim DeTienne, who recently retired as the Montana health department's EMS and Trauma Systems chief, acknowledged that sparsely populated counties would still need volunteers, but he said having at least one paid EMT on the roster could be a huge benefit.
DeTienne said he believes EMS needs to be declared an essential service like police or fire departments. Then counties could tax their residents to pay for ambulance services and provide a dedicated revenue stream.
Only 11 states have deemed EMS an essential service, Slabach said.
The Montana health department report on EMS services suggested other ways to move away from full-volunteer services, such as having EMS agencies merge with taxpayer-funded fire departments or having hospitals take over the programs.
In the southwestern Montana town of Ennis, Madison Valley Medical Center absorbed the dwindling volunteer EMS service earlier this year.
EMS Manager Nick Efta, a former volunteer, said the transition stabilized the service, which had been struggling to answer every 911 call. He said the service recently had nine calls in 24 hours. That included three transfers of patients to larger hospitals miles away.
"Given that day and how the calls played out, I think under a volunteer model it would be difficult to make all those calls," Efta said.
Rich Rasmussen, president and CEO of the Montana Hospital Association, said an Ennis-style takeover might not be financially viable for many of the smaller critical access hospitals that serve rural areas. Many small hospitals that take over emergency services do so at a loss, he said.
"Really, what we need is a federal policy change, which would allow critical access hospitals to be reimbursed for the cost of delivering that EMS service," he said.
Under current Medicare policy, federally designated critical access hospitals can get fully reimbursed for EMS only if there's no other ambulance service within 35 miles, Rasmussen said. Eliminating that mileage requirement would give the hospitals an incentive to take on EMS, Rasmussen said.
"It's a long haul to do this, but it would dramatically improve EMS access all across this country," he said.
A Centers for Medicare & Medicaid Services pilot program is testing the elimination of mileage minimums for emergency services with select critical access hospitals.
The rural EMS crunch puts a greater burden on the closest urban ambulance services. Don Whalen, who manages a private EMS service in Missoula, the state's second-largest city, said his crews regularly respond to outlying communities 70 miles away and sometimes across the Idaho line because local volunteer agencies often can't answer emergency calls.
"We know if we're not going, nobody is coming for the patient, because a lot of times we're the last resort," he said.
Missoula EMS is responsible for calls in the city and Missoula County. Whalen said Missoula EMS has agreements with a couple of volunteer EMS agencies in smaller communities to provide an ambulance when volunteers have difficulty leaving work to respond to calls.
Those agreements, on top of responding to other towns where 911 calls are going unanswered, are taking resources from Missoula, he said.
Communities need to find ways to stabilize or convert their volunteer programs, or private services like his will need financial support to keep responding in other communities, Whalen said.
But lawmakers' appetite for finding ways to fund EMS is limited. During Montana's legislative session earlier this year, DeTienne pushed for a bill that would have studied the benefit of declaring EMS an essential service, among other possible improvements. The bill quickly died.
Back in Dutton, the EMS crew chief is thinking about her future after 17 years as a volunteer. Campbell said she wants to spend more time with her grandchildren, who live out of town. If she retires, there's no guarantee somebody will replace her. She's torn about what to do.
"My license is good until March of 2022, and we'll just see," Campbell said.
In his multiple attempts to overcome a methamphetamine addiction that ground through two decades of his life, Tyrone Clifford Jr. remembers well the closest he came. "The most success I had," he said, "is when my dealer was in jail."
Then Clifford walked into a rehab clinic in San Francisco called PROP, the Positive Reinforcement Opportunity Project. There, he encountered an approach so simple he sounds slightly bemused explaining it. The secret? The program paid him to show up and stay clean.
"It wasn't much money — very little, in fact, and I didn't really need it," said Clifford, 52. "But I did need the support. I did need the connection. I was doing something positive for the first time in a long, long time, and it changed my outlook."
The concept of a reward for sobriety — known as contingency management — lies at the heart of many an addiction therapy success story. Research showing it's a highly effective tool for managing substance use disorder, especially for stimulants, goes back decades.
The Department of Veterans Affairs has long employed the therapy, providing it to more than 5,600 veterans. Some 92% of the 72,000 urine samples collected during treatment tested negative for the targeted drug, said Dominick DePhilippis, a clinical psychologist and researcher who helped launch the VA's program in 2011.
But outside of the VA? "It is used almost zero," said Richard Rawson, a professor emeritus at UCLA who has researched the therapy for nearly 30 years. Providers worry that by paying patients they'll violate anti-kickback regulations and thus jeopardize their federal funding through Medicaid.
But California appears poised to challenge the regulations. On June 1, the state Senate unanimously passed SB 110, introduced by Sen. Scott Wiener (D-San Francisco), which declares contingency management (CM) a legal practice and authorizes its funding by adding it to the list of drug treatment services offered through Medi-Cal, the state's version of Medicaid. The price tag for the bill depends on how many patients use the therapy, but it would cost only about $179,000 a year to include the approach in treatment for 1,000 people trying to kick stimulant use, according to a financial analysis.
California's latest budget, still being hammered out, may include money for a CM pilot program for next year. Wiener's bill would provide permanent funding — if, that is, Medi-Cal can get federal signoff on the practice.
The federal anti-kickback statute prohibits offering an inducement to a patient to choose a specific program or type of treatment. The Department of Health and Human Services' Office of the Inspector General has to this point agreed with the Centers for Medicare & Medicaid Services that a violation would occur at any monetary incentive beyond $75 a year, which contingency management experts say isn't enough to get results.
More than a dozen organizations have written to the Department of Health and Human Services to ask for a waiver of the anti-kickback statute as it pertains to the therapy. A group led by Dr. Westley Clark, former director of the federal Center for Substance Abuse Treatment, is asking Congress to instruct HHS to allow the treatment in Medicaid programs.
In response to questions from KHN, a spokesman for the HHS Office of the Inspector General declined to comment on "any regulations or waivers in development," but said the OIG "recognizes that contingency management interventions are the most effective currently available treatment for stimulant use disorders." Any CM program put in place would be evaluated on a case by case basis, he said, and going over the $75 annual limit "does not mean that such incentive automatically violates the statute and is illegal."
The VA can ignore the rule altogether because the department's budget covers all its costs. "VA is in many ways the ideal setting for [the therapy's] implementation," said DePhilippis. "We're not subject to the funding concerns that I hear expressed by my colleagues in programs outside of the VA."
As the name implies, patients in a CM program are rewarded on a contingency basis for modifying their behavior — specifically, by not missing recovery meetings or failing a drug test. While the approach can be employed to treat any type of substance addiction, it's been especially useful for stimulants like meth and cocaine, for which there is no well-established addiction-combating medication, such as methadone for an addiction to opioids.
Patients at VA recovery sessions draw from a plastic fishbowl that holds 500 slips of paper. Half of those slips contain positive messages: "Good job." "Way to go." Another 209 slips are worth $1, while 40 are worth $20 and one "jumbo" prize of $100 lurks in every bowl. As patients continue to stay clean, the number of slips they get to draw increases, to a maximum of eight. If they skip meetings or test positive, they go back to drawing a single slip. The money is paid in the form of vouchers that can be used through the VA's canteen system to buy food and other items, but not alcohol or tobacco.
In other programs that employ the approach, including the one Tyrone Clifford found in San Francisco in 2011, patients receive gift cards worth $300 to $400 over 12 weeks in exchange for regularly attending meetings and producing clean tests. Most of the incentive programs are designed to end after three months, on the theory that patients have used the time to regularly attend counseling and therapy sessions and kick-start their recoveries.
That is what happened to Clifford, who fell into meth use after learning he was HIV-positive at age 21. He and his partner (now husband) soon moved from Georgia to San Francisco, where his use spiraled out of control until he was advised to visit PROP, administered through the San Francisco AIDS Foundation.
"The money wasn't the main thing for me — but it is for some of the guys who come in here," Clifford said. "They may need that small amount to keep a cellphone bill paid. They may need that for a doctor. I hear people say, 'Why should we pay a drug user to stop using drugs?' My answer is that it works. You keep coming in, week after week, and pretty soon you're back on your feet."
Some critics have moral qualms about paying a patient for good behavior, and therapists are sometimes wary of the approach. But effective approaches are needed. In San Francisco, the meth overdose death rate has increased more than 500% since 2008, and half of all psychiatric emergency room admissions at Zuckerberg San Francisco General Hospital are now meth-related.
"As a gay man in San Francisco, my community has been deeply affected by meth use," said Wiener. Meth use spiked 20% nationally among those tested in the early months of the pandemic.
Those who've seen the approach used successfully in treating meth addiction are befuddled by its unavailability, especially now that states offer everything from marijuana to Yankees tickets to persuade people to get vaccinated against COVID-19.
Still, Rawson said he doubts California's bill can override the HHS restrictions as currently written. Wiener, on the other hand, doesn't believe the use of therapy was ever in violation of anti-kickback statutes.
Tyrone Clifford simply knows it works.
"I see it now from the other side," said Clifford, who is 10 years sober and now counsels those trying to kick meth addiction through the San Francisco AIDS Foundation. "Guys keep coming back. You can see it building every week."
In the Inland Empire county of San Bernardino, for instance, officials detailed the ground lost tackling problems like congenital syphilis and opioid misuse even before the COVID response sapped resources.
This article was published on Friday, July 2, 2021 in Kaiser Health News.
SACRAMENTO, Calif. — After more than a decade of fruitless entreaties from public health advocates, Democratic lawmakers have secured a landmark agreement that promises $300 million a year in new state funding to fortify and reimagine California's hollowed-out public health system, a complex network of services shouldered largely by the state's 61 local health departments.
The deal, outlined this week as the Democratic-controlled legislature approved a record $262.6 billion state budget for fiscal year 2021-22, marked a dramatic reversal for Gov. Gavin Newsom, who had rebuffed requests the past three years to bolster annual spending on public health, arguing that federal funding would suffice. At Newsom's insistence, the infusion for public health won't kick in until July 2022.
What persuaded the first-term Democrat to change course, according to people involved in the negotiations, was an unprecedented public health campaign buttressed by powerhouse lobbyists and organized labor. The state's largest public employee union, the Service Employees International Union, California, in January joined healthcare leaders to create a coalition called "California Can't Wait," mounting a fierce lobbying effort on behalf of public health, a core government function that for years has gone without a voice in California's Capitol corridors.
Their target was Newsom, and they pressed their case with his Cabinet officials, advisers and the public, even as he was navigating seething resentment in some communities over COVID-related business closures and a burgeoning Republican-driven recall effort to oust him from office.
"We knew we'd have to fight," said Tia Orr, the top lobbyist for SEIU in California, which represents 750,000 members, including healthcare workers, janitors, and city, county and state employees, among others. "I hate that it took a crisis, but COVID-19 allowed us to push back collectively, and we all realized that we'd have to get louder than we've ever been on public health."
From January to April, union leaders, public health advocates and the trade groups representing local health officials held more than 40 in-person and video meetings with state lawmakers to lay out how years of shrinking budgets had left them without the personnel, lab capacity and basic infrastructure needed to carry out critical public health functions. Disinvestment had left counties unprepared for the pandemic, they argued, and systems essential to tracking and controlling an array of infectious and chronic diseases had been decimated.
In the Inland Empire county of San Bernardino, for instance, officials detailed the ground lost tackling problems like congenital syphilis and opioid misuse even before the COVID response sapped resources. Officials in Mono County in the eastern Sierra explained they had no public health lab and just one communicable disease nurse to conduct contact tracing for a county of 14,000 people.
"A lot of what we did is just educate [State Senate and Assembly] members about what public health does," said Kim Saruwatari, Riverside County's director of public health. "They were interested in the work we were doing and receptive to the conversation."
Also critical to the effort: County health officials reached outside their inner circle, hiring veteran Sacramento public relations firm Paschal Roth Public Affairs, an influential power broker whose strategists represent multiple deep-pocketed interest groups, including SEIU.
"Look, we had the key ingredients for a winning campaign: a razor-sharp message, an incredible coalition and an undeniable sense of timing," said Mike Roth, who operates the firm with his partner, Nikki Paschal. "After what we experienced last year with COVID, no one could argue that the stakes weren't life or death. Public health officials knew they needed to approach this differently."
Epidemiologists, public health nurses and other county workers who weren't used to the spotlight became the face of the operation. As Newsom and lawmakers negotiated the budget behind closed doors, the campaign launched an aggressive Twitter campaign that accused Newsom of neglecting public health and extolled the two lawmakers who championed the budget request in the Capitol, state Sen. Richard Pan (D-Sacramento) and Assembly member Jim Wood (D-Santa Rosa), who chair legislative health committees.
News coverage soared, with headlines reflecting the political battle and editorial pages weighing in on the side of public health: "If Newsom invested in public health agencies before COVID, how many could have been saved?" wrote The Sacramento Bee's Editorial Board.
"I don't think a lot of people understood the devastation that was happening — it really has been this quiet erosion of public health funding," said Michelle Gibbons, executive director of the County Health Executives Association of California. "We had to get people to raise their hands and say 'We care,' and this campaign helped us use our voice and tell our story in a way that we haven't done before."
Pan, a pediatrician who has unsuccessfully pushed for greater public health investment for years, said the issue never before had harnessed big-time lobbying power.
"As much as everyone loves to talk about prevention and public health, that's a really hard thing to get credit for, because when everything goes right, nothing happens. And that's the big challenge for public health," Pan said. "COVID highlighted how important this investment is, because it really revealed the deficiencies we have, and it certainly pushed public health officials to the forefront, where they were expected to speak out and make difficult decisions."
Bruce Pomer, a former lobbyist for the Health Officers Association of California who went on to lead the organization representing local health officers from 1993 to 2014, said savvy lobbying and a strong political coalition made the difference this year.
"Having SEIU as part of the coalition makes a big difference in terms of whether the legislature is even going to pay attention to you," Pomer said. "I mean, I didn't get invited to big, expensive fundraisers. I had to hang out by a door and wait until a late-night hearing was over in order to get a chance to talk to a legislator."
The federal government finances most public health activities in California and significantly increased emergency funding during the coronavirus pandemic. Temporary funding increases have buoyed the statewide public health budget to $4.7 billion so far this year, but health leaders say much of that money is restricted in use and the portion of funding that comes from state and local coffers has not kept pace with the cost of doing business.
While details have not been released by the Newsom administration, Pan said the governor has committed to an additional annual investment of $300 million from the state general fund beginning next fiscal year, in July 2022. Public health officials and lobbyists involved in negotiations say the money will target infrastructure, like increasing capacity at public health laboratories — California has lost 11 labs since 1999 — and modernizing data systems strained by the pandemic.
Counties say the money will also give them the opportunity to address public health threats associated with climate change, like wildfire; develop programs to tackle race-based health inequities; and build a workforce that can respond to infectious disease threats, as well as combat chronic diseases like diabetes.
"Our focus will be hiring disease investigators to build a robust communicable disease surveillance system," said Saruwatari of Riverside County. "It pains me to say this, but we have almost 13,000 chlamydia cases every year, and we can only investigate a small percentage of those, for pregnant women or high-risk individuals, because we just don't have the workforce."
Los Angeles County Public Health Director Barbara Ferrer said that emergency funding from the state and federal government has helped, but that even large counties like hers struggle with inadequate data systems and lab capacity in typical years, let alone a pandemic year.
"Oftentimes, at a community level, we're asked to respond to diseases or potential pollutants or other crises without there being an identified source of payment for those activities," Ferrer said. "We just kind of try to patch things together, but that's a ridiculous way of keeping our people and communities safe."
Even as advocates welcomed the renewed state commitment to public health, several expressed disappointment that the funding infusion won't kick in for a year and have vowed to fight for more.
"We have this massive $80 billion surplus and yet the governor puts public health on the back burner for another year? There's no question that delay is going to cause more devastation on low-income communities and communities of color that have been hardest hit by the pandemic," said Dr. Harold Goldstein, executive director of Public Health Advocates.
State Department of Finance spokesperson H.D. Palmer confirmed the plan is for $300 million annually beginning in the 2022-23 state budget, while this year the administration will launch a $3 million assessment of public health infrastructure needs at the state and local level.
"The administration has been committed to a thoughtful and informed investment in public health," Palmer said. "At present, the federal government has provided state and local governments with billions of dollars in grants to support epidemiology, lab capacity, immunization and schools."
For this year, counties are set to receive about $750 million in one-time funding from the federal government for COVID vaccinations and outreach, as well as nearly $900 million for testing and school reopening, according to the Newsom administration.
Democratic lawmakers, including Pan, say they are concerned those funds will not help California combat other public health threats neglected during the pandemic, with some Republicans also calling for a bigger investment sooner.
"I believe we should include funding for local public health departments in this year's budget and learn from our shortcomings in the last year, regardless if we receive federal funding," said Sen. Shannon Grove (R-Bakersfield). "This issue is too critical."
A colonoscopy might cost you or your insurer a few hundred dollars — or several thousand, depending on which hospital or insurer you use.
Long hidden, such price variations are supposed to be available in stark black and white under a Trump administration price transparency rule that took effect at the start of this year. It requires hospitals to post a range of actual prices — everything from the rates they offer cash-paying customers to costs negotiated with insurers.
Many have complied.
But some hospitals bury the data deep on their websites or have not included all the categories of prices required, according to industry analysts. A sizable minority of hospitals have not disclosed the information at all.
While imperfect and potentially of limited use right now to the average consumer, this trove is, nonetheless, eye-opening as an illustration of the huge differences in prices — nationally, regionally and within the same hospital. It's challenging for consumers and employers to use, giving a boost to a cottage industry that analyzes the data, which in turn could be weaponized for use in negotiations among hospitals, employers and insurers. Ultimately, the unanswered question is whether price transparency will lead to overall lower prices.
In theory, releasing prices may prompt consumers to shop around, weighing cost and quality. Perhaps they could save a few hundred dollars by getting their surgery or imaging test across town instead of at the nearby clinic or hospital. But, typically, consumers don't comparison-shop, preferring to choose convenience or the provider their doctor recommends. A recent Peterson-KFF Health System Tracker brief, for instance, found that 85% of adults said they had not researched online the price of a hospital treatment.
And hospitals say the transparency push alone won't help consumers much, because each patient is different — and individual deductibles and insurance plans complicate matters.
Under the Trump-era rule, hospitals must post what they accept from all insurers for thousands of line items, including each drug, procedure or treatment they provide. In addition, hospitals must present this in a format easily readable by computers and include a consumer-friendly separate listing of 300 "shoppable" services, bundling the full price a hospital accepts for a given treatment, such as having a baby or getting a hip replacement.
The negotiated rates now being posted publicly often show an individual hospital accepting a wide range of prices for the same service, depending on the insurer, often based on how much negotiating power each has in a market.
In some cases, the cash-only price is less than what insurers pay. And prices may vary widely within the same city or region.
In Virginia, for example, the average price of a diagnostic colonoscopy is $2,763, but the range across the state is from $208 to $10,563, according to a database aggregated by San Diego-based Turquoise Health, one of the new firms looking to market the data to businesses while offering some information free of charge to patients. Another is Health Cost Labs, which will have pricing information for 2,300 hospitals in its database when it goes live July 1.
Patients can try to find the price information themselves by searching hospital websites, but even locating the correct tab on a hospital's website is tricky.
Here's one tip: "You can Google the hospital name and the words 'price transparency' and see where that takes you," said Caitlin Sheetz, director and head of analytics at the consulting firm ADVI Health in the Washington, D.C., area.
Typing in "MedStar Health hospital transparency," for example, likely points to MedStar Washington Hospital Center's "price transparency disclosure" page, with a link to its full list of prices, as well as its separate list of 300 shoppable services.
By clicking on the list of shoppable services, consumers can download an Excel file. Searching it for "colonoscopy" pulls up several variations of the procedure, along with prices for different insurers, such as Aetna and Cigna, but a "not available" designation for the cash-only price. The file explains that MedStar does not have a standard cash price but makes determinations case by case.
Performing the same Google search for the nearby Inova health system results in less useful information.
Inova's website links to a long list of thousands of charges, which are not the discounts negotiated by insurers, and the list is not easily searchable. The website advises those who are not Inova patients or who would like to create their own estimate to log into the hospitals' "My Chart" system, but a search on that for "colonoscopy" failed to produce any data.
Because of the difficulty of navigating these websites — or locating the negotiated prices once there — some consumers may turn to sites like Turquoise. Doing a similar search on that site shows the prices of a colonoscopy at MedStar by insurer, but the process is still complicated. First, a consumer must select the "health system" button from the website's menu of options, click on "surgical procedures," then click again on "digestive" to get to it.
There is no similar information for Inova because the hospital system has not yet made its data accessible in a computer-friendly format, said Chris Severn, CEO of Turquoise.
Inova spokesperson Tracy Connell said in a written statement that the health system will create personalized estimates for patients and is "currently working to post information on negotiated prices and discounts on services."
For consumers who go the distance and can find price data from their hospitals, it may prove helpful in certain situations:
Patients who are paying cash or who have unmet deductibles may want to compare prices among hospitals to see if driving farther could save them money.
Uninsured patients could ask the hospital for the cash price or attempt to negotiate for the lowest amount the facility accepts from insurers.
Insured patients who get a bill for out-of-network care may find the information helpful because it could empower them to negotiate a discount off the hospitals' gross charges for that care.
While there's no guarantee of success, "if you are uninsured or out of network, you could point to some of those prices and say, 'That's what I want,'" said Barak Richman, a contract law expert and professor of law at Duke University School of Law.
But the data may not help insured patients who notice their prices are higher than those negotiated by other insurers.
In those cases, legal experts said, the insured patients are unlikely to get a bill changed because they have a contract with that insurer, which has negotiated the price with their contracted hospitals.
"Legally, a contract is a contract," said Mark Hall, a health law professor at Wake Forest University.
Richman agrees.
"You can't say, 'Well, you charged that person less,'" he noted, but neither can they say they'll charge you more.
Getting the data, however, relies on the hospital having posted it.
As for compliance, "we're seeing the range of the spectrum," said Jeffrey Leibach, a partner at the consulting firm Guidehouse, which found earlier this year that about 60% of 1,000 hospitals surveyed had posted at least some data, but 30% had reported nothing at all.
Many in the hospital industry have long fought transparency efforts, even filing a lawsuit seeking to block the new rule. The suit was dismissed by a federal judge last year.
They argue the rule is unclear and overly burdensome. Additionally, hospitals haven't wanted their prices exposed, knowing that competitors might then adjust theirs, or health plans could demand lower rates. Conversely, lower-cost hospitals might decide to raise prices to match competitors.
The rule stems from requirements in the Affordable Care Act. The Obama administration required hospitals to post their chargemaster rates, which are less useful because they are generally inflated, hospital-set amounts that are almost never what is actually paid.
Insurers and hospitals are also bracing for next year, when even more data is set to come online. Insurers will be required to post negotiated prices for medical care across a broader range of facilities, including clinics and doctors' offices.
In May, the Centers for Medicare & Medicaid Services sent letters to some of the hospitals that have not complied, giving them 90 days to do so or potentially face penalties, including a $300-a-day fine.
"A lot of members say until hospitals are fully compliant, our ability to use the data is limited," said Shawn Gremminger, director of health policy at the Purchaser Business Group on Health, a coalition of large employers.
His group and others have called for increasing the penalty for noncomplying hospitals from $300 a day to $300 a bed per day, so "the fine would be bigger as the hospital gets bigger," Gremminger said. "That's the kind of thing they take seriously."
Already, though, employers or insurers are eyeing the hospital data as leverage in negotiations, said Severn, Turquoise's CEO. Conversely, some employers may use it to fire their insurers if the rates they're paying are substantially more than those agreed to by other carriers.
"It will piss off anyone who is overpaying for healthcare, which happens for various reasons," he said.
Before the pandemic, 16-year-old Na'ryen Cayou had everything he needed. He had his own room. A partial scholarship to a boys' prep school. A spot playing trombone in the marching band, performing in parades all over New Orleans.
Then COVID-19 blew through the Big Easy like a hurricane, washing away nearly everything that helped him feel safe and secure. Schools shut down. His mom lost her job and couldn't make the rent. Their landlord evicted them.
Na'ryen and his mom now live with his grandmother. His mom sleeps on one couch; he sleeps on the other. He spent half the school year in virtual learning rather than in class with friends. Although he has struggled with math and chemistry, his mother, Nakia Lewis, said there's no money for a tutor.
"He went through a real deep depression," said Lewis, 45, a single mother with two older daughters living on their own. "This is nothing anyone could have prepared them for."Bottom of Form
As Americans crowd into restaurants, line up at movie theaters and pack their bags for summer travel, people are understandably eager to put the pandemic behind them. Yet kids like Na'ryen won't rebound quickly. Some won't recover at all.
"This could affect a whole generation for the rest of their lives," said Dr. Jack Shonkoff, a pediatrician and director of the Center for the Developing Child at Harvard University. "All kids will be affected. Some will get through this and be fine. They will learn from it and grow. But lots of kids are going to be in big trouble."
More than 5 million Americans lost a loved one to COVID, and the ripple effects could lead to serious illness down the road.
The pandemic will undermine Americans' health for years. Even those not infected by the coronavirus could suffer health problems related to poverty, job loss, eviction — or all of the above.
Many kids will go back to school this fall without having mastered the previous year's curriculum. Some kids have disappeared from school altogether, and educators worry that more students will drop out. Between school closures and reduced instructional time, the average U.S. child has lost the equivalent of five to nine months of learning during the pandemic, according to a report from McKinsey & Co.
Educational losses have been even greater for some minorities. Black and Hispanic students — whose parents are more likely to have lost jobs and whose schools were less likely to reopen for in-person instruction — missed six to 12 months of learning, according to the McKinsey report.
Missing educational opportunities doesn't just deprive kids of better careers; it can also cost them years of life. In study after study, researchers have found that people with less education die younger than those with more.
Schools across the country were closed for an average of 54 days in spring 2020, and many provided little to no virtual instruction, said Dr. Dimitri Christakis, director of the Center for Child Health, Behavior and Development at the Seattle Children's Research Institute. A study he co-authored found the learning that kids missed during that time could shorten an elementary school boy's life by eight months and a girl's by more than five months.
The total loss of life would be even larger when factoring in the loss of instructional time in the school year that just ended, Christakis said. "We've interrupted children's education, and it's going to have a significant impact on their health and longevity," he said. "The effects will linger a very long time."
Assaulted on All Sides
The double hit from the pandemic, which has impoverished millions of children and deprived them of classroom time, will be too much for some to overcome.
"Living in poverty, even as a child, has health consequences for decades to come," said Dr. Hilary Seligman, a professor at the University of California-San Francisco. "Children in poverty will have higher risk of obesity, cardiovascular disease and diabetes."
"Adversity literally shapes the developing brain," said Shonkoff, of Harvard. "It affects your memory, your ability to organize information, to control impulses."
Chronic stress in children can lead to persistent inflammation that damages the immune system, raises blood sugar and accelerates hardening of the arteries. The heart disease that kills someone in midlife can actually begin in childhood, Shonkoff said.
"What happens to children early on doesn't just affect early language and school readiness, but the early foundations of lifelong health," he said.
More Kids Going Hungry
The pandemic has deprived millions of children of school-related services that normally blunt the harm caused by poverty.
Children who experience even occasional "food insecurity" suffer two to four times as many health problems as other kids at the same income level, said Dr. Deborah Frank, director of the Grow Clinic for Children at Boston Medical Center.
Kids who don't consistently eat nutritious meals are more likely to develop anemia, more likely to be hospitalized and more susceptible to lead poisoning, Frank said. They also are more likely to behave aggressively and suffer from hyperactivity, depression and anxiety.
The consequences of food insecurity last well into adulthood, she said, increasing the risk of substance abuse, arrest and suicidal thoughts. "There's going to be educational and emotional fallout that won't disappear right away," Frank said. "These kids have endured a year and a half of deprivation. You can't sweep all that under the rug."
Kids at the Breaking Point
Young people are already showing signs of strain.
The proportion of emergency room visits related to mental health among kids 12 to 17 increased 31% from 2019 to 2020, according to the Centers for Disease Control and Prevention.
Although overall suicide deaths haven't increased during the pandemic, as many feared, teens are making more attempts. ERs treated 50% more adolescent girls and 4% more boys for suspected suicide attempts in February and March 2021 than in those months the year before.
Diagnoses of obsessive-compulsive disorder have soared 41% among girls 12 to 18, according to a June report from Epic Health Research Network. Diagnoses of eating disorders have jumped 38% among girls and 5% among boys.
Many children separated from their peers during the pandemic have been depressed and anxious, said Dr. Lisa Tuchman, chief of adolescent and young adult medicine at Children's National Medical Center in Washington, D.C.
"Mental illness thrives in isolation," Tuchman said. "The longer the behaviors and thoughts persist, the more entrenched they become and the harder they are to interrupt."
Falling Behind in School
The loss of educational opportunities has been far more extensive than many realize. Although the majority of students were back in classrooms by the end of the last school year, most spent a large part of the year in virtual learning.
And while some students thrive in virtual classes, studies generally find they provide an inferior education to in-person instruction, partly because students are less engaged. Just 60% of students consistently participated in distance learning, recent surveys found.
Test scores show students have fallen behind in math and reading. And those scores likely underestimate the damage, given that some of the most vulnerable kids weren't able to report to school for the exams.
An estimated 3 million marginalized students — including those who are homeless or in foster care — received no instruction during the past school year, either because they had no computer or internet access, had to leave school to work or faced other challenges, according to Bellwether Education Partners, a nonprofit that focuses on disadvantaged students.
Less-educated students can expect to earn less after they leave school.
Lost educational time will cost the average child $61,000 to $82,000 in lifetime earnings, McKinsey concluded. Lifetime earning losses are predicted to be twice as great for Black and Hispanic students as for whites.
"Many of the teens I see have given up on school and are working instead," said Dr. Sara Bode, a pediatrician at Nationwide Children's Hospital in Columbus, Ohio. "It's helping their families in the short term, but what does it mean for their future?"
Katrina left 80% of the city under water. Although New Orleans students missed an average of five weeks of learning, children wound up two years behind peers not affected by the hurricane, said Douglas Harris, professor and chair of economics at Tulane University.
Na'ryen Cayou was just 2 months old when Katrina submerged his house, leaving the family homeless. He contracted whooping cough in an emergency shelter, the first of four moves in eight months. His sister, O're'ion Lewis, then 4, didn't attend school at all that year. When she finally began prekindergarten at age 5, the other kids "were already ahead of her," mom Nakia Lewis said. For a time, teachers even mislabeled O're'ion as having dyslexia. It took five years — from prekindergarten until fourth grade — before she finally caught up with her peers, Lewis said.
It will be years before researchers know how far behind the pandemic will have left American kids.
After Katrina, 14% to 20% of students never returned to school, according to the McKinsey report. "As kids fall further behind, they feel hopeless; they don't engage," said Sarakatsannis, one of its authors.
Under normal circumstances, high school students who miss more than 10 days of school are 36% more likely to drop out. Based on the number of absences during the pandemic, dropout rates could increase by 2% to 9%, with up to 1.1 million kids quitting school, Sarakatsannis said.
Communities need to find ways to repair the damage children have suffered, said Dr. Gabrielle Shapiro, chair of the American Psychiatric Association's Council on Children, Adolescents and their Families. "How we behave as a society now will determine the depth of the impact on the younger generation."
Nakia Lewis is hoping for better days.
O're'ion is now 20 and studying nursing at community college. Although her classes were virtual last year, she expects to attend class in person in the fall.
Lewis recently landed a job as a manager at a Shoney's restaurant and is looking for an affordable home. She looks forward to reclaiming her furniture, which went into storage — at $375 a month — when she was evicted.
She said she's relieved that Na'ryen's mood has improved. He found a summer job working part time at a food market and will begin marching band practice this summer.
"He is happy and I'm happy for him," Lewis said. "Now I just have to worry about everything else."
Walden, Colorado has suffered the fate of many small towns across the United States, as the economics of the pharmacy business have made it difficult for community drugstores to survive.
This article was published on Thursday, July 1, 2021 in Kaiser Health News.
WALDEN, Colo. — The building that once housed the last drugstore in this town of fewer than 600 is now a barbecue restaurant, where pit boss Larry Holtman dishes out smoked brisket and pulled pork across the same counter where pharmacists dispensed vital medications more than 30 years ago.
It's an hourlong drive over treacherous mountain passes to Laramie, Wyoming, or Granby or Steamboat Springs, Colorado — and the nearest pharmacies. The routes out of the valley in which Walden lies are regularly closed by heavy winter snows, keeping residents in and medications out.
Walden has suffered the fate of many small towns across the United States, as the economics of the pharmacy business have made it difficult for community drugstores to survive. With large pharmacy chains buying up independent drugstores and increasingly controlling the supply chain, towns such as Walden have too few residents to attract a chain drugstore and no great appeal for pharmacists willing to strike out on their own.
With no local access to prescription drugs, the town of mainly cattle ranchers and hay farmers has crowdsourced a delivery system, taking advantage of anyone's trip to those bigger cities to pick up medications for the rest of the town.
"Really, it's a network of community and people reaching out and knowing that others have needs," said Tina Maddux, who runs a nonprofit that provides food and other assistance in Walden. "We're a community that pulls together for the wellness of everyone."
The system is just one of the creative ways that rural communities deal with a lack of healthcare. In Walden, the senior center runs a regular shuttle to the bigger locales so older residents don't have to drive to pick up groceries, visit doctors or refill their meds. In October, a pharmacy in Steamboat Springs began delivering medications to Walden once a week. Mail-order pharmacies can help with medications for chronic conditions, but not for acute needs.
Yet these solutions can't replace a bricks-and-mortar pharmacy, as pharmacists do much more than count pills. They can give flu or COVID shots and, in some states, such as Colorado, even prescribe contraceptives. Some run diabetes management or smoking cessation programs. Medications can be complicated, and without a live person to talk to, patients can struggle to take them correctly.
In Walden, locals are one snowstorm, one mishap, from being cut off from their meds.
That uncertainty leaves Whitney Milek with constant anxiety. Her younger son, 8-year-old Wade, relies on medications to control his seizures. She usually picks up his medicines in Laramie, where the family does its big grocery runs. But when she needs to refill in between trips, she turns to her neighbors for help.
The informal system runs primarily through a Facebook group created in 2013 as a sort of online garage sale. For years, people have been posting to ask if anybody is headed toward a pharmacy and can bring back a prescription. Neighbors deliver to neighbors, even during the pandemic, and no money is exchanged.
"There are times when nobody is going and you end up having to have them mailed, which is a whole other thing, especially with seizure meds," Milek said. "Some are controlled substances and they can't mail them."
Two winters ago, Milek called in one of her son's prescriptions to a Steamboat Springs pharmacy. But when she arrived, the medication was out of stock. With road conditions rapidly worsening, she asked if the pharmacy would mail the medication but was told she lived too close for mail delivery. She turned to a pharmacy in Laramie, which eventually agreed to mail it to her — but also didn't have it in stock.
"So, he ended up going five days without," Milek said. "It's not a big deal if you miss a dose here or there. But when you miss that many over a period of time, your tolerance level goes down."
That medication must be carefully managed to build up gradually in Wade's blood to avoid a severe allergic reaction. It took three weeks to scale up to his daily dose when he started taking the drug two years ago.
"When he went five days without it, he had to basically start all over again. It was over Christmas break, so he wasn't in school. I brought him to work with me because I didn't feel comfortable leaving him with anybody else," said Milek, a bookkeeper. "I didn't know what was going to happen."
Wade was fortunate to avoid complications that time. But having a local pharmacy mail medications comes with added costs — $26, in their case, for a prescription last month — an extra tax on those who cannot get to a pharmacy. Mail-order pharmacies typically don't charge for shipping yet can run into snags, too. Last year, some of Wade's mailed medications got stuck in a Denver processing facility for three weeks. The Mileks had to pay $1,600 out-of-pocket to get replacements.
Walden has no hospital, only a small clinic where Dr. Lynnette Telck and a nurse practitioner care for residents. The clinic stocks some basic medications to handle routine acute needs — antibiotics for strep throat, inhalers for asthma — and they can mix up liquid suspensions for those who can't swallow pills.
"It's a small town, so we all wear many hats," Telck said.
Studies show that, without a drugstore nearby, patients aren't as likely to keep up with their medications and their chronic conditions can worsen. Without readily available medications, Telck said, patients can end up taking an ambulance to an emergency room.
"It's just so darn expensive to the system," she said.
Walden touts itself as the moose-viewing capital of Colorado and is a recreation mecca for hunting, fishing and snowmobiling. But Telck said it could be hard to attract a pharmacist because the town lacks amenities like movie theaters and shopping malls.
"It's pristine and wonderful in its own quirky way and we love it," she said. "But not a lot of people want to come to rural areas. The wages aren't as high as in the big cities."
Middle Park Health, the Granby-based hospital system that operates the Walden clinic, had looked at putting a more complete pharmacy in the clinic but couldn't find a technician to staff it.
"The days of that being a profitable, desirable business? It's a lot tougher than it was a decade or two ago," said Gina Moore, an associate dean at the University of Colorado's School of Pharmacy. "You come out of eight years of college — four years of undergraduate and four years of pharmacy school — with pretty significant student loan debt. It's very hard to go to a rural community where you don't make any money."
In towns without an ER or a clinic open late, pharmacists often become the health provider of last resort. They tell patients whether they need to make the long trek to a hospital late at night or can wait until morning.
"A patient will often come to the pharmacy as the first point of access for healthcare," Moore said. "Our pharmacists are taught to understand and to be able to advise people on what can be self-treated with over-the-counter medications versus when you need to see a higher-level provider or an urgent care."
Researchers from the Rural Policy Research Institute at the University of Iowa have documented how the deck is increasingly stacked against community pharmacies.
"It's just not a really attractive business model anymore," said Keith Mueller, the institute's director.
In 2013, they found that new Medicare Part D drug plans resulted in low and late reimbursements, replacing direct out-of-pocket payments from customers. That left many pharmacies unable to turn a profit. By 2018, surveys showed pharmacies were struggling more with the narrowing margin between what they paid for the drugs and what they were being reimbursed by health plans.
Towns of more than 10,000 people are often served by at least a Walmart or a supermarket pharmacy, Mueller said.
"But you get out into smaller communities, the predominant modality had been the corner drugstore," he said. "We're not seeing that replacement of the closed independents by a CVS, Rite Aid or Walgreens."
The Mileks have talked about whether they should move near her family in Wyoming to be closer to a hospital and pharmacy.
"When you can't get to a pharmacy, it's scary, because things can happen so fast," Milek said. "People just have no concept of what it's like out here."
CASTINE, Maine — For years, Louise Shackett has had trouble walking or standing for long periods, making it difficult for her to clean her house in southeastern Maine or do laundry. Shackett, 80, no longer drives, which makes it hard to get to the grocery store or doctor.
Her low income, though, qualifies her for a state program that pays for a personal aide 10 hours a week to help with chores and errands.
"It helps to keep me independent," she said.
But the visits have been inconsistent because of the high turnover and shortage of aides, sometimes leaving her without assistance for months at a time, although a cousin does help look after her. "I should be getting the help that I need and am eligible for," said Shackett, who has not had an aide since late March.
The Maine home-based care program, which helps Shackett and more than 800 others in the state, has a waitlist 925 people long; those applicants sometimes lack help for months or years, according to officials in Maine, which has the country's oldest population. This leaves many people at an increased risk of falls or not getting medical care and other dangers.
The problem is simple: Here and in much of the rest of the country there are too few workers. Yet, the solution is anything but easy.
Katie Smith Sloan, CEO of Leading Age, which represents nonprofit aging services providers, says the workforce shortage is a nationwide dilemma. "Millions of older adults are unable to access the affordable care and services that they so desperately need," she said at a recent press event. State and federal reimbursement rates to elder care agencies are inadequate to cover the cost of quality care and services or to pay a living wage to caregivers, she added.
President Joe Biden allotted $400 billion in his infrastructure plan to expand home and community-based long-term care services to help people remain in their homes and out of nursing homes. Republicans pushed back, noting that elder care didn't fit the traditional definition of infrastructure, which generally refers to physical projects such as bridges, roads and such, and the bipartisan deal reached last week among centrist senators dealt only with those traditional projects. But Democrats say they will insist on funding some of Biden's "human infrastructure" programs in another bill.
As lawmakers tussle over the proposal, many elder care advocates worry that this $400 billion will be greatly reduced or eliminated.
But the need is undeniable, underlined by the math, especially in places like Maine, where 21% of residents are 65 and older.
Betsy Sawyer-Manter, CEO of SeniorsPlus in Maine, one of two companies that operate that assistance program, said, "We are looking all the time for workers because we have over 10,000 hours a week of personal care we can't find workers to cover."
For at least 20 years, national experts have warned about the dire consequences of a shortage of nursing assistants and home aides as tens of millions of baby boomers hit their senior years.
"Low wages and benefits, hard working conditions, heavy workloads, and a job that has been stigmatized by society make worker recruitment and retention difficult," concluded a 2001 report from the Urban Institute and Robert Wood Johnson Foundation.
Robyn Stone , a co-author of that report and senior vice president of Leading Age, says many of the worker shortage problems identified in 2001 have only worsened. The risks and obstacles that seniors faced during the pandemic highlighted some of these problems. "COVID uncovered the challenges of older adults and how vulnerable they were in this pandemic and the importance of front-line care professionals who are being paid low wages," she says.
Michael Stair, CEO of Care & Comfort, a Waterville, Maine-based agency, said the worker shortage is the worst he's seen in 20 years in the business.
"The bottom line is it all comes down to dollars — dollars for the home care benefit, dollars to pay people competitively," he said. Agencies like his are in a tough position competing for workers who can take other jobs that don't require a background check, special training or driving to people's homes in bad weather.
"Workers in Maine can get paid more to do other jobs that are less challenging and more appealing," he added.
His company, which provides services to 1,500 clients — most of whom are enrolled in Medicaid, the federal-state health program for people with low incomes — has about 300 staffers but could use 100 more. He said it's most difficult to find workers in urban areas such as Portland and Bangor, where there are more employment opportunities. Most of his jobs pay between $13 and $15 an hour, about what McDonald's restaurants in Maine advertise for entry-level workers.
The state's minimum wage is $12.15 an hour.
Stair said half his workers quit within the first year, a little better than the industry's average 60% turnover rate. To help retain employees, he allows them to set their own schedules, offers paid training and provides vacation pay.
"I worry there are folks going without care and folks whose conditions are declining because they are not getting the care they need," Stair said.
Medicare does not cover long-term home care.
Medicaid requires states to cover nursing home care for those who qualify, but it has limited entitlement for home-based services, and eligibility and benefits vary by state. Still, in the past decade, states including Maine have increased funding to groups providing Medicaid home and community services — anything from medical assistance to housekeeping help — because people prefer those services and they cost much less than a nursing home.
The states also are funding home care programs like Maine's for those same services for people who don't qualify for Medicaid in hopes of preventing seniors from needing Medicaid coverage later.
But elder care advocates say the demand for home care far outweighs supply.
Bills in the Maine legislature would increase reimbursement rates for thousands of home care workers to ensure they are being paid more than the state's minimum wage.
The state does not set worker pay, only reimbursement rates.
It's not just low pay and lack of benefits that hobbles the hiring of workers, according to experts who study the issue. In addition, home care providers struggle to recruit and retain workers who don't want the stress of caring for people with physical disabilities and, often, mental health issues, such as dementia and depression, said Sawyer-Manter of SeniorsPlus.
"It's backbreaking work," said Kathleen McAuliffe, a home care worker in Biddeford, Maine, who formerly worked as a Navy medic and served in the Peace Corps. She provides homemaker services for a state-funded program run by Catholic Charities. She usually visits two clients a day to help them with chores like cleaning and scrubbing floors, wiping down bathrooms, vacuuming, preparing meals, food shopping, organizing medicines and getting them to the doctor.
Her clients range in age from 45 to 85. "When I walk in, the laundry is piled up, the dishes are piled up, and everything needs to be put in order. It's hard work and very taxing," said McAuliffe, 68.
She makes about $14 an hour. Though the job of taking care of the frail elderly requires broad skills — and training in things like safe bathing — it is generally classified as "unskilled" labor. Working part time, she gets no vacation benefits. "Calling us homemakers sounds like we are coming in to bake brownies," she said.
The homemaker program serves 2,100 Maine residents and has more than 1,100 on a waitlist, according to Catholic Charities Maine. "We can't find the labor," said Donald Harden, a spokesperson for the organization.
The federal government is giving states more dollars for home care — at least temporarily.
The money, which must be spent by March 2024, can be used to provide personal protective equipment to home care workers, train workers or help states reduce waiting lists for people to receive services.
For Maine, the bump in funding from the American Rescue Plan will provide a $75 million increase in funding. But Paul Saucier, aging and disability director at the Maine Department of Health and Human Services, said the money will not make the waitlists disappear, because it will not solve the problem of too few workers.
Joanne Spetz, director of the Health Workforce Research Center on Long-Term Care at the University of California-San Francisco, said throwing more money into home care will work only if the money is targeted for recruiting, training and retaining workers, as well as providing benefits and opportunities for career growth. She doubts significant improvements will occur "if we just put money out there to hire more workers."
"The problem is the people who are in these jobs always get the same amount of pay and the same low level of respect no matter how many years they are in the job," Spetz said.
Under pressure to rein in skyrocketing prescription drug costs, states are targeting companies that serve as conduits for drug manufacturers, health insurers and pharmacies.
More than 100 separate bills regulating those companies, known as pharmacy benefit managers, have been introduced in 42 states this year, according to the National Academy for State Health Policy, which crafts model legislation on the topic. The flood of bills comes after a U.S. Supreme Court ruling late last year backed Arkansas' right to enforce rules on the companies. At least 12 of the states have adopted new oversight laws. But it's not yet clear how much money consumers will save immediately, if at all.
The companies are powerful, together administering medication plans for more than 266 million Americans. A handful of the companies, CVS Caremark, Express Scripts and OptumRX, control the vast majority of the market while also operating national pharmacy chains. PBMs say they use all that power to negotiate lower prescription prices. But the inner workings of the deals — and how much of the savings the companies pocket — happen largely behind a curtain that lawmakers are trying to pull back.
Montana is one testing ground for whether more transparency leads to lower drug prices with a new law that places those businesses under state oversight. The legislature unanimously passed a measure in April that, beginning next year, requires pharmacy benefit managers to get a state license and publicly report how much money they receive. It also dictates what information PBMs must provide to other companies amid negotiations.
"This was kind of the low-hanging fruit in terms of something where we thought we could get some meaningful policy out there," said Troy Downing, Montana's Republican commissioner of securities and insurance. "At least turn the light on in that black box."
New York lawmakers also passed legislation requiring PBMs to get a state license and submit an annual report that details the financial benefits they collect. Some efforts go broader, such as one in Wisconsin that brought PBMs under state oversight and required pharmacies to tell customers about less expensive generic prescription options.
PBMs pit drug manufacturers against one another to get lower drug prices on behalf of clients such as health insurers or large employers offering prescription drug benefits. They influence what prescription plans cover, and they help set pharmacy reimbursement rates for medications bought under PBM-managed plans. They can make money by pocketing some of the cash saved in negotiations and through the rebates that drug manufacturers offer for a sought-after spot on the list of prescriptions covered by health plans.
PBMs are accustomed to negative attention, though they often counter it's pointed in the wrong direction.
"The main focus for state policymakers should be to examine brand drug manufacturers' pricing strategies," emailed Greg Lopes, a spokesperson for the Pharmaceutical Care Management Association, a national trade group. "Drug manufacturers are solely responsible for setting and raising drug prices."
One in 10 U.S. adults ration prescriptions they can't afford, according to the National Center for Health Statistics. And as prices climb, every industry touchpoint for pharmaceutical drugs — manufacturers, distributors, insurers and more — blames the others. Policymakers have said each plays a role, though PBMs have become easy targets for politicians across political parties.
While PBM regulation is often pitched as a way to lower drug costs, patients shouldn't expect lower prices at pharmacy counters immediately, said Elizabeth Seeley, an expert in healthcare payment systems at the Harvard T.H. Chan School of Public Health.
"There's really not a clear answer on what types of policies will necessarily bring down spending," Seeley said. "Because you have to also ask the question of 'spending for who?'"
The changes could mean savings for patients or savings for just another part of the health industry, such as insurers. Seeley said she welcomes the recent spate of legislation to get more transparency into the system. But to get more affordable prescriptions on a wide scale, she said, lawmakers need a broad set of policies that sweep in players such as drug manufacturers. That would most likely have to happen on a national level.
Last year, bills died in Congress that sought to penalize drugmakers for raising prices above inflation rates and to cap some Medicare enrollees' out-of-pocket costs. Drug-pricing proposals are back on the table this year, with some zeroing in on specific industry players — including pharmacy benefit managers.
Montana's Democratic senator, Jon Tester, recently introduced bipartisan legislation that aims to prevent pharmacy benefit managers from extracting fees from pharmacies after they're already reimbursed. He has proposed similar efforts before. Tester said local rules help, but national policy forces the companies to play by the same rules in every state.
"This isn't going to solve the problem of high prescription drug prices, but it will help," Tester said.
Independent pharmacies are often in the background, lauding such efforts to regulate PBMs.
"They're squeezing us out of the market," said Josh Morris, who owns several rural Montana pharmacies.
Morris said that, when it came time to sign a new PBM contract last year to stay in an insurers' preferred network, reimbursement rates were too low to cover the pharmacies' costs to supply the prescriptions. So, he rejected the offer from the company, which he declined to name out of concern it would hurt their future interactions. As a result, Morris said, many of his customers' prescription copays rose, but they have few other pharmacies nearby. His patients in West Yellowstone, for example, faced a 90-mile trek to Bozeman as the next-closest option for more affordable medicine.
"How is that better for patients?" Morris said. "Pharmacies are stuck in the middle with no power; we're told, 'Here are the rates — either sign it or don't sign it.'"
While Morris hopes to see more rules like Tester's legislation become reality, for now he thinks Montana's new law could help. The rules call for PBMs to have adequate networks, which Morris said he hopes will help remote pharmacies like his.
David Root — vice president of government affairs for Prime Therapeutics, one of Montana's larger PBMs, which represents more than 30 million people nationwide — said the increased legislative scrutiny is a classic case of shooting the messenger.
"In some cases, we're the deliverer of bad news," he said.
Root said some of the changes taking place in Montana and elsewhere aren't an issue, such as being licensed through the state and establishing rules on what PBMs communicate to insurers. But he said bills like Montana's go wrong by making numbers public, potentially stripping some of the companies' power to negotiate among other players, which he said could result in higher drug prices.
Downing, the Montana insurance commissioner, said the state rules aren't saying PBMs must drastically change how they operate — they just have to show some of their work along the way.
"Best-case scenario is, through this transparency and through this regulatory authority, we start to see market forces improving consumer costs," Downing said. "Worst-case scenario is, in two years, we know what we don't know now, and we can make better decisions on how to better attack this problem."
The Newsom administration is hampered by an outreach campaign that relies too heavily on advertising firms and companies such as Blue Shield of California.
This article was published on Tuesday, June 29, 2021 in Kaiser Health News.
SACRAMENTO — Gov. Gavin Newsom routinely boasts that California has "one of the highest vaccination rates in the United States of America."
But Newsom, facing a recall election this fall, rarely mentions that the state's COVID vaccine uptake has largely stagnated in Black and Latino neighborhoods hardest hit by the coronavirus, and in rural outposts where opposition to vaccines runs rampant. In these communities, deep distrust of government and the U.S. healthcare system has collided with the state's high-stakes effort to finish vaccinating its 34 million vaccine-eligible residents.
These are places where state health officials believe they can change a significant number of minds. But the Newsom administration is struggling to do so, public health experts say, hampered by its inconsistent and hastily developed public messaging and outreach campaign that relies too heavily on private advertising firms and companies such as Google and Blue Shield of California.
"Many people don't trust information being put out about vaccines because it's coming from private companies that have profit-seeking motives," said Dr. Tony Iton, a senior vice president at the California Endowment, which focuses on expanding healthcare access for Californians. Iton served as Alameda County's public health officer from 2003 to 2009.
What actually works, Iton and other public health experts say, are well-funded, locally designed operations led by organizations that have built trust with residents and are capable of going door to door to dispel vaccine mythology, such as local nonprofits, county health departments and community clinics.Bottom of Form
But California's 61 local public health departments have been stunted by years of declining revenue, budget cuts and staff reductions that have stymied their ability to conduct the expensive and time-consuming public health outreach campaigns necessary to combat vaccine skepticism and hesitancy.
"When something like COVID-19 comes along, local knowledge is absolutely invaluable in reaching every pocket of that community, particularly in building trust in vulnerable populations," Iton said. "The state doesn't have that, Google doesn't have that, and certainly Blue Shield doesn't have that."
Even the Newsom administration's internal polling shows its efforts are faltering.
"The resounding barrier to vaccination," state officials wrote in the latest survey published in June, "has been confusion as a result of inconsistent, contradictory or insufficient messaging from government and public health officials."
Statewide, nearly 60% of Californians are fully vaccinated, but progress is uneven. Just 39% of eligible Black residents and 40% of Latinos had been vaccinated as of Friday, and local public health officials are intensely worried about regions like the Central Valley, where vaccination rates have stalled, especially given the threat of COVID's dangerous delta variant. Similar disparities exist by geography, across regions and even among neighborhoods.
The state's vaccine holdouts make up a cohort that cuts across political and geographic ideologies and is dominated by Latinos, African Americans, rural residents and young people. Unlike outright vaccine "rejecters," who lean Republican, undecideds align with Democrats, according to state polling.
State officials are trying to change the minds of both "undecideds" and "rejecters," and are relying primarily on vaccine lotteries with giveaways totaling $116.5 million or vacation packages, and glitzy advertising campaigns featuring paid social media influencers. The state has awarded two $40 million contracts to high-dollar ad agencies for vaccine outreach and education.
Companies including Facebook, Google, Comcast and TikTok are providing free advertising on social media, radio and TV, and making charitable contributions to help the state fund its public education campaigns, state records show.
Lackluster vaccination uptake drove the Newsom administration to pursue the more personal approach that public health experts favor, but the still-nascent campaign leaves out large swaths of the state. The administration launched its "Get Out the Vax" campaign in April, enlisting 70 community-based organizations and 2,000 community canvassers, now focused on Los Angeles and Central Valley neighborhoods where vaccinations have plateaued or declined.
But county public health officials say the campaign isn't big enough to combat the vaccine misinformation that has infiltrated regions such as California's rural north.
"It's terrible," said Placer County's health officer, Dr. Rob Oldham, who said misinformation is driving vaccines down. "Unfortunately, the lottery didn't really help us. We're working so much harder to get a dozen people vaccinated, whereas before we were doing close to 1,500 shots a day."
State Health and Human Services Secretary Mark Ghaly acknowledged that the state must boost its presence on the ground and said it "needs to do better and more." At the same time, he and other state officials argue that the vaccine lottery is working and that they are seeing progress in hard-hit neighborhoods.
This month the state debuted pop-up vaccine clinics at McDonald's restaurants in 11 counties, and state-funded outreach workers have fanned out in neighborhoods such as South Los Angeles to sign people up for appointments or vaccinate takers from a roving van. Vaccine canvassers report that the people who don't want the vaccines say they're concerned about safety or repeat sometimes outrageous rumors, such as the false assertion that vaccines turn people into zombies.
"We're seeing lots of disinformation and lack of a sense of urgency," said Yolanda Richardson, secretary of the California Government Operations Agency and Newsom's "vaccination czar." "The work that we have left to do is really finding out what each individual person needs to make that jump."
Carnella Marks of Oroville, in Butte County, offers a telling case of how hard public health officials must work to cut through the thick swamp of misinformation and confusion.
Marks, 51, who is Black, has deep misgivings about the safety of the vaccines that are rooted in the country's racist history and her personal experience: When she was pregnant with her second child, her doctor suggested she get a hysterectomy even though she wasn't ready to stop having kids and had no health complications. She wonders if the U.S. government is experimenting on Black people, as it did on African American men in the Tuskegee syphilis study from the 1930s into the 1970s.
"Why do they want us to take the vaccine so bad?" Marks asked. "We've never been first in line for anything, but now all of a sudden you want to make sure that the African American community gets the vaccine?"
She had considered getting vaccinated because she thought it might be required for work — until government officials paused the single-dose Johnson & Johnson shot over concerns it caused blood clots.
"I don't care what kind of money the governor is shelling out to get me to take the vaccine," said Marks, who wants to discuss the safety of the vaccines with someone who knows. But "nobody's knocking on my door to talk to me or answer my questions."
Public health experts say it could be possible to change the minds of people like Marks with targeted and relentless outreach by trusted members of the community who acknowledge their fears and mistrust of the medical system. A knock on the door or phone call from an epidemiologist who can explain the science behind vaccinations couldn't hurt, they added.
"So many of these people really aren't vaccine hesitant; they're just trying to figure out the facts for themselves and get their questions answered," said Oldham of Placer County.
But the county can't afford its own campaign, so Oldham said it "Placerizes" state material, adapting messaging for its residents.
"What we've seen from the state, frankly, is a lack of investment and interest in public health," he said. "I think it builds trust when you have the resources to call people back and tailor a message, but honestly we don't really have that capacity."
Some counties have committed scarce funds to develop ads targeting populations among whom distrust runs rampant, an effort they say has helped boost vaccination rates. Santa Clara County, for instance, has plowed at least $8.6 million into an outreach campaign and public service announcements related to COVID since March 2020, including Spanish-language ads targeting the county's large Latino population.
Health officer Dr. Sara Cody said the county has also enlisted the help of local health clinics, nonprofit groups and county employees of various ethnicities to develop messages that might persuade people to get vaccinated.
"We are extraordinarily fortunate," Cody said. "That investment turned out to be one of the most useful. People do have fears, and we want to hear them."
About 73% of the county's population is fully vaccinated, while other counties with fewer public health resources, like Placer, have struggled to mount effective campaigns. There, about 48% of residents are fully vaccinated.
Vaccine canvassers say they are making progress by using personal stories and discussing the science behind the vaccines.
Ricardo Márquez, a state-funded vaccine outreach worker in South Los Angeles, said he has changed minds.
"Sometimes facts and science work, but sometimes people who don't believe change their minds when I tell them people are dying, like my sweet grandma," Márquez said.