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In This Issue: Prescription drug costs and ‘surprise’ medical bills :: privatizing the VA :: the decline of HACs :: extending Money Follows the Person program :: an increase in the uninsured :: AARP highlights the Older Americans Act :: nursing home protections and quality measurement :: Medicaid’s ups and downs :: Family and Medical Insurance Leave (FAMILY) Act :: a clarion call for ‘caring companies’ :: LTSS’s vital contribution to elder wellbeing :: the HRRP comes under fire :: preventing misdiagnoses, encouraging vegetarianism :: the ‘hidden’ costs of physician referrals :: the benefits of sunlighting hospital price lists :: state laboratories for health system reform :: the desperate search for affordable insulin :: ethnobotanist tackles Alzheimer’s disease :: a CAPABLE boost for the aging :: and turning death into life: a transplant surgeon’s tales

Prescription Drug Costs: What’s Ahead

As a new, divided Congress and combative President confront one another over a host of issues, the stars may be aligning over two of them, although as always, the devil will lie in the details of various proposed fixes. The hottest, hot-button healthcare issue is arguably the rising cost of prescription drugs. Actually, it is not one issue, but an intersecting set of issues involving the pricing of brand and generic drugs, patient choice of drugs, and the regulatory framework allocating pricing and availability power among manufacturers, insurers, and government. But at its core, the concern is over the rapid escalation of out-of-pocket drug charges, making access to life-saving medications like insulin increasingly precarious. Support for a solution made it into President Trump’s State of the Union address. As Kaiser Health News Emmarie Huetteman and Rachel Bluth reported , “One Republican lawmaker close to the President, Representative Mark Meadows of North Carolina, said he had spoken with Trump and agreed to pass along a message to House Committee on Oversight and Reform Chairman Elijah Cummings: ‘On this particular subject, not only is he serious, but he is serious about working in a bipartisan way to lower prescription prices.’ Cummings asked Meadows to tell Trump that ‘we are willing, ready and able to work with him to get it done.’” From the Washington Post’s Paige Winfield Cunningham came the observation that “hope is strong among healthcare advocates and lawmakers that 2019 could be the year Congress and the executive branch finally make significant moves against the powerful prescription drug industry, after long acknowledging the need for action but doing little about it. There are signals the industry's influence is waning, after it recently failed in its bid to reverse steeper payments for drugs in Medicare’s so-called ‘doughnut hole’ coverage. Congressional members have been eyeing at least two bills with bipartisan support: the CREATES Act that would prevent branded drugmakers from guarding their medication so other companies can’t develop alternatives; and legislation to prohibit pay-for-delay deals in which drugmakers pay producers of generic medicines to delay the introduction of cheaper versions of them.”

‘Surprise’ Medical Bills

The second possible avenue for joint Congressional-White House action concerns the vexing problem of “surprise” medical bills that unexpectedly appear in families’ mailboxes after a trip to the ER or a visit to a test center. As Politico’s Rachel Roubein and Adam Cancryn report , “surprise bills have drawn increased concern both because of their eye-popping size and sheer unpredictability. Patients can get slapped with unanticipated bills when they inadvertently see a provider outside their insurance network, often times during an emergency when they can’t shop around for care. Unanticipated billings also hit well-insured people who go to an in-network facility—only to later learn one of the physicians administering care, like a radiologist or anesthesiologist, wasn’t part of the network. States have been in the forefront of the issue; 25 have installed some degree of consumer protection against so-called ‘balance billing,’ when the patient has to make up the difference after an insurer pays an out-of-network provider. Yet, there remain significant gaps Congress is looking to fix. President Trump weighed on the issue during a White House roundtable : “The pricing is hurting patients, and we’ve stopped a lot of it, but we’re going to stop all of it,” he said. “The Hill’s early steps toward legislating a solution,” Roubein and Cancryn observe, “have set off jockeying among deep-pocketed doctors, hospitals, specialists and insurers, all eager to defend their piece of a complex yet lucrative healthcare billing system. ‘They are huge interests—they’ve got a moat between them and they’re shooting cannons,’ said representative Anna Eshoo, the House Energy and Commerce Health Subcommittee chairperson. ‘Something is really broken when that happens.’ In December, nine insurance, employer and consumer groups joined to push their own ideas for preventing surprise bills—and took a shot at providers in the process. ‘When doctors, hospitals or care specialists chose not to participate in networks—or if they do not meet the standards for inclusion in the network—they charge whatever rates they like,’ wrote the groups. The statement was met with a dueling statement from two major hospital groups that critiqued insurers. ‘Inadequate health plan provider networks that limit patient access to emergency care are one of the root causes of surprise bills,’ wrote the heads of the American Hospital Association and the Federation of American Hospitals. Healthcare groups agree on the broad contours of the solution: a federal revamp that shifts more costs off of patients and onto hospitals, doctors and insurers. Yet, there’s sharp division over how to divvy up the cost of care, with all involved eager to avoid taking a big financial hit.”

Trump Administration Proposed VA Privatization

The Department of Veterans Affairs, reports New York Times’ Jennifer Steinhauer and Dave Philipps, “is preparing to shift billions of dollars from government-run veterans hospitals to private healthcare providers, setting the stage for the biggest transformation of veterans’ medical system in a generation. Under proposed guidelines, it would be easier for veterans to receive care in privately run hospitals and have the government pay for it. Veterans will also be allowed access to a system of proposed walk in clinics, which would serve as a bridge between VA emergency rooms and private providers, and would require co-pays for treatment. Veterans hospitals, which treat 7 million patients annually, have struggled to see patients on time in recent years, hit by a double crush of returning Iraq and Afghanistan veterans and aging Vietnam veterans. For individual veterans, private care could mean shorter waits, more choices and fewer requirements for co-pays—and could prove popular. But some healthcare experts in veterans’ groups say the change, which has no separate source of funding, could redirect monies the current veterans health care system uses to provide specialty care. Critics have also feared that switching vast numbers of veterans to private hospitals could strain care in the private sector, and costs for taxpayers could skyrocket.

Hospital-Acquired Conditions Decline

Some good news: “The rate of hospital-acquired conditions,” reports Modern Healthcare’s Maria Castellucci, “declined by 13% from 2014 to 2017, saving providers $7.7 billion and preventing 20,500 hospital deaths, according to preliminary data from the Agency for Healthcare Research and Quality. The AHRQ data show that some conditions have seen bigger drops than others. For instance, the number of adverse drug events from 2014 to 2017 decreased by 28%. At the same time, the number of pressure ulcers events actually went up by 6% during the same time period. CMS has set a goal of reducing hospital-acquired conditions by 20% from 2014 to 2019, which could result in 53,000 fewer deaths and save $19.1 billion in hospital costs.”

Money Follows the Person (MFP) Program Funding Extended Three Months

Some more good news, albeit time-limited: As reported by Justice and Aging, President Trump signed the Medicaid Extenders Act which contains provisions to continue funding the Money Follows the Person program (MFP). The act provides $112 million in funding for MFP for three months; states will have until September 30, 2019, to spend the money. While advocates had wanted a longer extension, the three-month time period keeps the program alive and gives Congress the opportunity to develop more lasting solutions. The bill also extends impoverishment protections to ensure that the spouse of a person receiving Medicaid home and community-based services isn’t required to spend down all of their assets in order for their spouse to receive the care they need.”

Uninsured Number of U.S. Adults Increased in 2018

Some bad news: “The number of U.S. adults who do not have health insurance,” reports Modern Healthcare’s Shelby Livingston, “was higher in the fourth quarter 2018 than it is been since the Affordable Care Act was implemented four years before. Women, young adults and lower income people have experienced the greatest increases in uninsured rates in the last two years, according to survey data from Gallup. According to the Gallup data, 14.7% of adults were uninsured during the fourth quarter, of 2018, compared with 14.4% in the first quarter of 2014, when the individual mandate requiring most people to purchase insurance went into effect, and two dozen states chose to expand Medicaid for low-income residents. While the uninsured rate is rising, it’s important to note that it’s still much lower than when it hit its peak at 18% in 2013, before the ACA was implemented. The number of adults without insurance hit its lowest point in 2016, at 10.9%.”

Public Policy Institute (PPI) Spotlight on OAA Points to Inadequate Funding

AARP’s Public Policy Institute casts its Spotlight on the Older Americans Act (OAA) that since 1965 has provided critical services—such as home delivered and congregate meals, family caregiver support, in-home assistance, preventive health services, transportation, job training, protection from abuse, and other supportive services—that help about 1.1 million older adults live as independently as possible. In fiscal year 2019, PPI reports, OAA federal funding was $2.06 billion. PPI’s publication offers detailed statistical and programmatic information on OAA’s vital contribution to the U.S. aging population. OAA, PPI observes, “serves millions of frail seniors—many of whom are homebound. OAA services play a key role in preventing more costly institutional services and hospitalizations, helping people remain in their own homes, and assisting family caregivers. Yet, current funding for OAA is woefully inadequate, leaving many needs unmet and potentially leading to more costly care.”

Guide to Nursing Home Problems from Justice in Aging

More than 30 years after passage of landmark nursing home quality improvement legislation, the quest for such improvement continues unabated. In that connection Justice and Aging has published a very valuable guide to “25 Common Nursing Home Problems and How to Resolve Them.” In clear and comprehensive sections the guide offers nursing home residents and their families and advocates examples of problems they may face and how they may address them. Scenarios are divided into six categories: problems with poor care; problems with evictions; Medicaid certification problems; Medicare related problems; denials of resident rights; and admission and billing problems.

CMS Response to Review of Nursing Home Compare

Meanwhile, responding to a recent Health Affairs article questioning the utility of patient safety measure information offered by CMS’s Nursing Home Compare (NHC) star ratings, CMS official Kate Goodrich praised the study and indicated the agency will take steps to adjust data it discloses. The article’s authors conclude, Goodrich writes in Health Affairs, that “while NHC captures some aspects of patient safety, the relationship between facility performance on safety measures and star ratings is weak and inconsistent, leaving consumers with little guidance in selecting a facility to provide safe care. The authors recommend that CMS identify patient safety measures as a separate subset within the clinical quality measures domain of star ratings which would place a greater emphasis on safety and thereby give consumers more information on which to judge this important aspect of care in nursing homes. We do believe that NHC contains additional measures that either capture harm or are highly correlated with harm. Nonetheless, we agree that NHC captures only a subset of harm, and a broader set of harm measures may be beneficial. To that end, CMS is considering the development of a composite measure of healthcare acquired infections that could be incorporated into NHC star ratings, and we will continue to explore additional facets of and measures associated with safety in nursing homes.”

KFF Forecast for Medicaid Program in 2019

Finally, Medicaid and the ongoing twists and turns in a program at the center of the fierce debates over how to structure healthcare delivery in the wake of the ACA’s “perils of Pauline” existence since the advent of the Trump presidency. In a New Year’s Issue Brief , the Kaiser Family Foundation ventured some predictions regarding “Medicaid: What to Watch in 2019 from the Administration, Congress, and the States.” The document contains descriptive and “what to watch” material covering such topics as Medicaid expansion, Medicaid waivers, and payment and delivery system reforms.

Administration Guidance Would Let States Remodel Medicaid to Resemble Block Grants

One item not included in the Foundation’s forecast is the Trump administration’s consideration, as reported by the Wall Street Journal’s Stephanie Armour, of guidance that “could let states remodel Medicaid programs to more closely resemble block grant proposals favored by Republicans during their failed effort to repeal the ACA. States would still have to adhere to certain requirements but could get far more leeway in how they design their programs, likely in exchange for some type of cap on federal funding. The administration’s expected guidance will face opposition from consumer groups that fear it will lead states to reduce coverage, leaving low people uninsured. ‘Whenever there’s been an initiative to make cuts to Medicaid that didn’t get through Congress, there are other efforts to make cuts,’ said Joan Alker, executive director of the Center for Children and Families at Georgetown University.”

Medicaid Action at the State Level

For now, however, most of the Medicaid action is to be found at the state level where numerous efforts are underway in the wake of the 2018 elections, either to expand Medicaid eligibility, pursue waivers to institute eligibility expansion requirements, or stymie voter-approved directions to extend eligibility rolls.

(Editor’s Note: In late breaking news the Utah legislature has passed, and Utah’s governor signed, the bill discussed above.)

Ensuring Congress Includes Family Caregivers in National Paid Leave

More than a quarter-century after the Family and Medical Leave Act first guaranteed many family caregivers the right to take time away from work without losing their jobs, the United States is still one of just a few countries without a national paid leave policy. After drawing more attention than ever before last year, from a first-ever hearing in the Senate to an unprecedented level of support from candidates in the midterm elections, paid leave is sure to be on the agenda of the new Congress. But family caregivers’ needs are not always considered. For example, the Family and Medical Insurance Leave (FAMILY) Act, recently re-introduced by Sen. Kirsten Gillibrand and Rep. Rosa DeLauro, would provide up to 12 weeks of partial wage replacement for family caregiving leave as well as leave for new parents and individuals’ own serious health conditions. But proposals floated last year by the White House and by Sen. Marco Rubio would limit access to paid leave to only new parents, and could result in harmful cuts to other programs such as unemployment insurance and Social Security that caregivers rely on.

CALL TO ACTION: Family Caregiver Alliance and the National Partnership for Women & Families request readers to share their paid leave or experience with work and family balance story. As members of Congress consider legislation this year, they need to hear stories from caregivers like you about why they cannot exclude family caregiving from a national paid leave plan. If you are interested in sharing your story, please respond here > California (CA) | National (Other States) .

Harvard Business School Report Calls on Companies to Address Their Employees’ Caregiver Burdens

In what may come to be seen as a watershed report , the Harvard Business School’s Joseph Fuller and Manjari Raman—pulling together a mass of data and persuasive analysis—issue a compelling call for employers to address the enormous caregiving burdens of their employees. Alleviating that burden by becoming “caring companies,” the authors argue, will in the end both reduce costs and increase productivity. American companies, they write, “are facing a caregiving crisis—they just refuse to acknowledge it. Rising healthcare and professional caregiving costs and changing demographics over the past few decades have put great pressure on American employees as they try to balance work and care responsibilities. Many employers remain largely oblivious to the growing costs of this ‘care economy’—costs that hurt employers and employees alike.”

In a “caring company,” the authors write, “management will have to demonstrate commitment both by acknowledging its employees’ care concerns and by investing in innovative solutions. It will require buying into a culture of care, an investment that goes beyond dollars to include time and leadership. By highlighting success stories and putting genuine effort into communicating with the workforce, providing benefits that address the actual needs of colleagues, and ensuring their utilization, caring companies can greatly enhance the effectiveness of their talent management. (And) for caring companies, the care advantage goes well beyond improving employee engagement. It has the potential to be an important source of competitive advantage.” Writing about the report, the Wall Street Journal’s David Harrison points out that “slightly more than half of the employers surveyed by the authors said they didn’t track their employees’ responsibilities outside the workplace. As a result, the benefits that firms frequently offer aren’t the ones that workers want. For instance, 32% of workers who left a job because of caregiving responsibilities said they needed to take care of an elderly person. But only 10% of employers offer subsidies for eldercare.”

New Reports on Long-Term Services and Support s

The vital role of long-term services and supports (LTSS) in providing for the needs of aging Americans receive attention in reports emanating from the Commonwealth Fund and AARP. Pointing to the challenges faced by Medicare beneficiaries in need of such services—which Medicare does not cover—the Fund’s recent Issue Brief finds that these beneficiaries “are vulnerable to incurring substantial costs. Without an affordable, sustainable financing solution, Medicare beneficiaries with LTSS needs will continue to be at greater risk of delaying necessary care, being placed in a nursing home prematurely and having to ‘spend down’ into the Medicaid program. Medicare beneficiaries requiring long-term services and supports are more likely than other beneficiaries to report skipping meals, being unable to afford rent, and being unable to pay for their prescription drugs. Many financing solutions have been proposed to support Medicare beneficiaries with limitations in ADLs, from comprehensive support to catastrophic spending coverage only, but little broad progress. Many plans and providers are participating in alternative payment models testing the effectiveness of addressing social determinants of health like housing instability and food insecurity. Our analysis shows that the average expenditure on personal care services for those with high LTSS needs receiving paid help is nearly $10,000 a year. Adding to Medicare coverage a targeted personal care benefit that provides up to $400 a week will substantially alleviate this financial burden while also helping people live independently.”

Addressing the same needs from a different vantage point, AARP’s Public Policy Institute builds upon its groundbreaking state LTSS “scorecards” to report on ongoing and promising state practices and emerging innovations that have emerged from the scorecards’ data and survey material. In a series of five such reports, AARP highlights strategies to expand options for self-direction; emerging innovations in managed long term term services and supports for family caregivers; supporting community living for veterans; state strategies to reduce the risk of long-term nursing home care after hospitalization; and personal and family centered practices in long-term services and supports.”

In a related development, the National Academies of Sciences, Engineering and Medicine have published the proceedings of a workshop held last summer focusing on “integrating health care and social services for people with serious illness.” The 50-page document reflects the views of a wide-ranging expert panel that focused on the personal lived experiences of a family facing serious illness, the challenges of full-time caregiving, and the difficulty of securing needed social services. Caregiving occupied a central focus of the discussions and spawned numerous recommendations, including: simplifying the process by which family members can receive their own credentials to access a loved one’s Electronic Health Record; identifying family caregivers’ role in the workforce and the factors that affect their care through annual wellness visits, structural fields in the EHR, and inclusion in clinical assessments of patients; clarifying and legitimizing the role of the family caregiver; and developing the capacity to monitor the experience of family caregivers and the nation’s progress toward achieving a more family-centered care delivery system that bridges healthcare and long-term services and supports.”

Hospital Readmissions Reduction Program (HRRP) Criticized in Two Studies

A simmering undercurrent of debate concerning the impact of Obamacare’s Hospital Readmissions Reduction Program (HRRP) burst into view in January as two studies appeared, one in JAMA suggesting that the HRRP raised mortality rates for heart failure and pneumonia patients within 30 days of hospital discharge, and the second in Health Affairs arguing that the decreases in hospital readmissions attributed to the HRRP were overstated as a result of coding changes adopted concurrently with the HRRP’s implementation. With respect to the latter study, the study authors write, “we found that declines from targeted conditions at general acute care hospitals were statistically indistinguishable from declines in two control samples. Either the HRRP had no effect on readmissions, or it led to a systemwide reduction in readmissions that was roughly half as large as prior estimates have suggested. We note that if the HRRP has not lowered readmission rates, then the rationale for the program’s existence becomes substantially weaker. (For one thing) pay-for-performance schemes expose participants to the risk of unstable funding, in ways that may seem unfair or contrary to other social goals. In the case of the HRRP, the program was found to have initially penalized hospitals that cared predominantly for patients of low social economic status—hospitals that are more likely to be safety net providers already operating on tight budgets.”

With respect to the JAMA findings, its implications were highlighted by the New York Times The New Old Age columnist Paula Span. The study’s authors, she writes , “have reported, disturbingly, that the program may contribute to unnecessary deaths. The rates of increase were small but growing, and may indicate that thousands of additional deaths from heart failure and pneumonia followed the program’s announcement and implementation. ‘Some of those patients previously would have been readmitted, but because of the financial incentives, they were not,’ said Dr. Gregg Fonarow, co-chairman of cardiology at the David Geffen School of Medicine at the University of California, Los Angeles, and a critic of the readmissions program. Now that additional conditions can result in readmission penalties—including joint replacements, pulmonary disease treatment and cardiac bypass surgery—he wants an independent investigation of the program.” In the face of these doubts, the HRRP’s defenders maintain their support for what they perceive has been a successful effort to reduce avoidable short-term hospital readmissions. Writing in the New England Journal of Medicine’s Catalyst, Peter Orszag, one of the Obama Administration’s ACA architects, dives deeply into the recent studies, as well as other analyses published earlier. His conclusions: “the weight of the evidence to my reading still suggests some benefit from the policy in reducing readmissions and no harm in mortality, but this conclusion must be held tentatively for now. Across the research papers, the heart failure results seem most likely to be associated with potential adverse effects. Any future changes to the readmissions, penalties (whether expanded to other conditions or curtailed for heart failure) should be rolled out first in some areas but not others. The preferential rollout would allow a clearer test of the effects, as was the case with bundled payments. A commitment to a time-differentiated rollout of policy changes such as the readmission penalty would produce better-informed policy and fewer debates on Twitter–which seems like an attractive combination.” 

Addressing Diagnostic Errors in Healthcare

While debate ensues over the HRRP and its post-discharge impact, a significant new undertaking is seeking to tackle a persistent problem affecting patients entering the healthcare system: misdiagnosis. Diagnostic errors, Modern Healthcare’s Maria Castellucci writes , “are one of the most common mistakes in medicine, affecting one in 20 adults. They were also the leading cause of malpractice claims, accounting for about 29% of total suits from 1986 to 2010. Despite the prevalence of such errors, more attention has been paid to other types of clinical mistakes, such as central line and other healthcare acquired infections.” Forty-seven healthcare organizations have now formed the Coalition to Improve Diagnosis to work together on best practices that address the leading causes of diagnostic errors. The coalition is led by the Society to Improve Diagnosis in Medicine (SIDM), a not-for-profit organization established in 2011. Its leader, Paul Epler, CEO and cofounder of SIDM, hopes the society will catalyze standardized practices and solutions to diagnostic errors. “Physicians can make a wrong diagnosis for many reasons,” Castellucci observes “including personal biases toward patients and conditions or from being overworked. The ability to make an accurate diagnosis is also a point of deep pride for physicians, so when a mistake does happen, it can be devastating, said Dr. Tim Mosher, chairman of the radiology department at Penn State Health in Hershey, Pennsylvania. ‘It hits them to the core. It makes them question, am I a good physician? And that has been a barrier,’ Mosher said. ‘On some of the system errors, we realize there is a workflow process we can design to reduce these errors. But when it’s a cognitive error, that is very personal and it’s going to take a while to work through that.’” (To foster more accurate diagnostic determinations, SIDM has developed a Patients Toolkit for Diagnosis . The five-page document contains easy to follow charts and diagrams to assist in providing relevant information to treating physicians.)

Plant-Based Diet Program Pilots in NYC

Mid-January saw the kickoff of a NYC Health and Hospitals/Bellevue pilot program designed to help patients fight chronic diseases such as type II diabetes, high blood pressure and heart disease. The intervention: a Plant-based Lifestyle Medicine Program aimed at transitioning enrollees to eating vegetarian. Motivated by recent studies indicating that plant-based diets can alleviate chronic conditions, the program, reports Modern Healthcare’s Maria Castellucci, “will offer 300 participants the services of a full-time health coach, dietitian, and four physicians. Program director Dr. Michelle McMacken said that each patient will likely meet with a doctor every two months to review progress in the program and to determine if any medications can be adjusted or stopped. ‘I’ve found in my personal experience that when patients change their diet explicitly to a plant-based diet they require fewer medications,’ Patients will likely meet or speak on the phone with the health coach and dietitian every two weeks. Both the coach and dietitian are trained chefs, so they can provide recipes and offer cooking classes to patients, keeping in mind patient’s cultural preferences and financial barriers. McMacken said the program will focus on affordable, healthy food options like lentils, beans, chickpeas and root vegetables. Although McMackin was unable to provide the insurance makeup of the 300 participants, Bellevue has a large Medicaid population. The program can be covered by insurance. For uninsured patients, payment is arranged on a sliding fee scale based on income.”

Physician Referrals: The ‘Hidden’ Costs

The relentless upward cost curve of the American healthcare system beckons, economists, policy analysts, politicians, journalists, and patients to search for explanations. For Wall Street Journal reporters Anna Wilde Mathews and Melanie Evans, one driver is “The Hidden System that Explains How Your Doctor Makes Referrals.” Patients, they write , “are often in the dark about why their doctors referred them to a particular physician or facility. Increasingly, those calls are being driven by pressure to keep business within a hospital’s system, even if an outside referral might benefit the patient. Losing patients to competitors is known as ‘leakage.’ Hospitals, in response, use an array of strategies to encourage ‘keepage within their systems, which in recent years have expanded their array of services. The efforts at keepage can mean higher costs for patients and the employers that insure them—healthcare services are often more expensive when provided by a hospital. Such price pressure and lack of transparency are helping drive rising costs in the $3.5 trillion U.S. healthcare industry, where per capita spending is higher than in any other developed nation. Hospitals have gained more power over doctors with a wave of acquisitions of practices and hirings in recent years, and hospitals are getting more aggressive in directing how physicians refer for things such as surgeries, specialty care, and magnetic resonance imaging scans. Patients often pay more out-of-pocket as a result. Jim Wood, a manufacturing company executive, said his doctor, who works for Rockford, Illinois’, Swedish American annually ordered his lab test done by the hospital, with bills that amounted to $529.85 in 2015. The next year Mr. Wood had the same tests done at an independent lab instead. The total cost: $57.83. In a statement, Swedish American, which is part of the University of Wisconsin Health System, said that ‘patients have the final say in where they choose to receive care,’ and it accommodates referrals to outside groups. The statement also said, ‘we believe that there is benefit to patients receiving ancillary services within our health system as it provides opportunities for enhanced continuity of care.’”

Hospitals Reveal Their Prices: A First Step

If a “hidden” force such as referral pressure constitutes a culprit in the cost escalation puzzle, perhaps greater transparency will turn out to be an antidote. Kaiser Health News editor and former ER physician Elizabeth Rosenthal thinks it will, and she praises the Trump Administration for ordering hospitals to reveal their prices. Rosenthal acknowledges that the initial postings mandated by HHS leave much to be desired. “For the moment,” Rosenthal writes , “these lists won’t seem very useful to the average patient—and they have been criticized for that reason. They are often hundreds of pages long, filled with medical codes and abbreviations. Each document is an overwhelming compendium listing a rack rate for every little item a hospital dispenses and every service it performs: A blood test for anemia. The price of lying in the operating suite and recovery room. The scalpel and the drill bit. The bag of IV saltwater. The Tylenol pill. No item is too small to be barcoded and charged. But don’t dismiss the lists is useless. Think of them as raw material to be mined for billing transparency and patient rights. Although making charge master pricing public will not, by itself, reform our high-priced medical system, it is an important first step. Maybe, just maybe, a hospital will think twice before charging a $6,000 ‘operating room fee’ for a routine colonoscopy if its competitor down the street is listing its price at $1,000. And while the lists are far from user-friendly, researchers and entrepreneurs can now create apps to make it easier for patients to match procedures to their codes and crunch the numbers. With access to list prices on your phone, you could reject the $300 sling in an emergency room and instead order one for 1/10 of the price on Amazon.”

Look to the States for Healthcare Reform

While welcoming the new price list requirement, Dr. Rosenthal also casts her eye on macro health delivery faults when she asks in another Times op-ed piece whether states can fix the disaster of American healthcare. Rosenthal observes that “for over a decade, we have been waiting for Washington to solve our healthcare woes with endless political wrangling and mixed results. Now, with Washington in total dysfunction, state and local politicians are taking up the baton. Looking at recent health insurance initiatives being discussed in California, Washington state, and New Mexico, Rosenthal observes that “States have always cared about healthcare costs, but mostly insofar as they related to Medicaid, since that comes from state budgets. ‘The interesting new frontier is how states can use state power to change the healthcare system,’ said Joshua Sharfstein, a vice dean at Johns Hopkins Bloomberg school of Public Health.” If one, two, or three states “succeed in making health care more affordable and accessible for all with a new model, it will probably be replicated one by one in other states. That’s why I’m hopeful. In 2004,” Rosenthal writes, “the Canadian Broadcasting Corporation conducted an exhaustive nationwide poll to select the greatest Canadian of all time. The top 10 list included Wayne Gretzky, Alexander Graham Bell and Pierre Trudeau. Number one is someone most Americans have never heard of: Tommy Douglas. Tommy Douglas, a Baptist minister and left-wing politician, was premier of Saskatchewan from 1944 to 1961. Considered the father of Canada’s health system, he arduously built up the components of universal healthcare in that province. In 1962, the province implemented a single-payer program of universal, publicly funded health insurance. Within a decade, all of Canada had adopted it. The United States will, presumably, sooner or later find a model for healthcare that suits its values and its needs. But 2019 may be a time to look to the states for ideas rather than to the nation’s capital. Whichever state official pioneers such an innovative system will certainly be regarded as a great American.”

The Struggle to Afford Insulin

As discussed above, prescription drug costs are among the most vexing aspects of the American healthcare enterprise. In “Life, Death and Insulin,” Washington Post Magazine writer Tiffany Stanley takes readers on a disturbing journey into the struggle facing many diabetics as they cope not just with their illness but also with the daunting challenge of paying the dizzying cost increases of the medication necessary to stay alive. In profiling several cases of desperate insulin seekers, Stanley observes that “a portion of the more than 7 million diabetic Americans who take insulin are struck with debilitating costs. Though most don’t pay the full list price for insulin because of insurance coverage and other rebates, some do, especially those who are uninsured, underinsured, or facing a coverage gap through Medicare. Patients who struggle to afford insulin sometimes ration their supplies to make them last longer—a dangerous practice. Poor glycemic control can lead to blindness, kidney failure, amputation, heart disease and stroke. In the short term, patients who stop taking enough insulin can collapse into diabetic ketoacidosis, a condition where blood sugars become too high and the body’s blood becomes acidic. It can become fatal in just hours or a few days. Many diabetics hunt for coupons and discounts on high-priced insulin. Some doctors will give out samples to their struggling patients. The constant search for more insulin can become all-consuming. ‘I think about it when I wake up. I think about it when I go to bed,’ says Michelle Fenner, an activist whose diabetic son is 17. She worries about what will happen when he becomes a young adult and is on his own. ‘There is no way he can pay what I do.’ Both drug companies and PBMs play a role in escalating drug prices. ‘It’s almost like Kabuki theater where one guy points to the other guy and says, it’s not me, it’s him,’ says Jing Luo, an instructor at Harvard Medical School and a faculty member at Boston’s Brigham and Women’s Hospital who studies insulin pricing.”

Ethnobotanist’s New Alzheimer’s Disease Theory

Every field of endeavor has its mavericks and medical research is no exception. Perhaps no field of such research has proved more frustrating in terms of productive treatment than that of cognitive impairment, including, especially, Alzheimer's disease. Might it be time for an “out of left field” intervention? Fortune magazine reporter Rick Tetzeli offers a tantalizing, tentative “yes” to the question as he profiles the work of a Jackson Hole, Wyoming, maverick. “In a small lab in Jackson Hole, 65-year-old Paul Cox believes he’s closing in on a treatment that might prevent Alzheimer’s disease—and ALS (Lou Gehrig’s disease). And a host of other neurodegenerative diseases, for that matter. Cox, we should point out isn’t a neurologist. He isn’t a physician of any kind. He doesn’t work at a big drug company or an academic medical center or government laboratory. His ideas come from so far outside the mainstream of neurological research that you might think he’s crazy or deluded or worse. But then, some very credible people are thinking he might be on to something big—which might make the improbable, quixotic story you are about to read one of the most important as well.” While fitting into none of the above-mentioned categories. Cox isn't exactly a nobody. A Harvard Ph.D. ethnobotanist (and a Time Magazine-designated “Hero of Medicine”) “Cox’s interest in neurodegeneration began when he set out to solve a puzzle that had bedeviled researchers for decades: why did an extraordinary number of the Chamorro people of Guam develop an odd hybrid of ALS and Alzheimer’s symptoms? Cox’s answer: “they had been poisoning themselves every time they indulged in their greatest culinary delight, a bat boiled in milk, a dish that contains great quantities of cyanobacteria, which are often referred to as blue-green algae and are loaded with toxins. That was 16 years ago. Since then, Cox has been trying to see if that insight could eventually lead to some kind of treatment against brain diseases. His yet to be proved antidote for this toxin: an amino acid L-serene.” Tetzeli’s lengthy exploration of Cox’s research and his laboratory set up in Jackson Hole, as well as a detailed review of AD research to date and its many failures, make for a fascinating tale, no matter the ultimate outcome of the clinical activities now underway to test his hypothesis. “If there is any good news about Alzheimer’s, it might be this: After three decades of cureless consensus, the scientific community may finally be ready to seriously consider alternative approaches. Entreaties in top-tier journals have urged a rethinking of orthodoxy. Another sign, perhaps, is the willingness of scores of scientists to sign on to the exploration of a bizarre moonshot of the theory born in the rainforests of Guam.”

CAPABLE Program: Helping Seniors Live Independently

Kaiser Health News’ Judith Graham has some good news to share about an approach to helping frail seniors find ways to live more independently. Graham reports on the findings of a study examining the impact of the Community Aging in Place—Advancing Better Living for Elders (CAPABLE) program. “Pauline Jeffrey had let things slide since her husband died,” Graham writes. “Her bedroom was a mess. Her bathroom was disorganized. She often tripped over rugs in her living room. But Jeffrey’s inertia faded when she enrolled in CAPABLE, a program for fellow low-income seniors. Over the course of several months, an occupational therapist visited Jeffrey and discussed issues she wanted to address. A handyman installed a new carpet. A visiting nurse gave her the feeling of being looked after. In short order, Jeffrey organized her bedroom, cleaned up her bathroom and began to feel more upbeat. The research published this month in JAMA Internal Medicine shows that CAPABLE provides considerable help to vulnerable seniors who have trouble with one or more activities of daily living. Over the course of five months, participants in the program experienced 30% fewer difficulties with such activities. ‘If someone found a drug that reduced disability in older adults by 30%, we'd be hearing about it on TV constantly,’ said John Haaga, director of the division of Behavioral and Social Research at the National Institute on Aging, which provided funding for the research. Sarah Szanton, who developed CAPABLE and directs the Center for Innovative Care in Aging at the Johns Hopkins School of Nursing, attributes positive results to several program elements. Instead of telling an older adult what’s wrong with them, a mainstay of medical practice, CAPABLE staff asked older adults what they would like to be able to do, but can’t do now. Seniors often say they want to cook meals for themselves, make their beds, use the stairs, get out of the house more easily, walk around without pain or go to church. The focus then turns to finding practical solutions. CAPABLE,” Graham writes, “turns out to be a cost-effective investment. For every dollar spent on CAPABLE, nearly $10 in combined savings accrues to Medicare and Medicaid, largely because of hospitalizations and nursing placements that are prevented. The average program cost for person is $2,825, far below the average $7,441 monthly cost of a semiprivate room in a nursing home in 2018.”

A Transplant Surgeon’s Story: ‘When Death Becomes Life’

Dr. Joshua D. Mezrich is a transplant surgeon who has just published a book on how his life’s work has enabled him to turn death into life. Interviewed on NPR’s Fresh Air, Dr. Mezrich reflected on the extraordinary experience of being able to watch the impact of organ transplantation. “The liver will start pouring bile. The lungs start essentially breathing. Maybe the most dramatic organ, of course, is the heart, because you put it in and you kind of hit it like you hit a computer, maybe you give a little shock and it just starts beating, and that’s pretty darn dramatic.” The book touches on all aspects of the transplant process, but clearly one of the most emotional involves physicians’ encounters with donor families. “I was really nervous the first time I met a donor family because I felt they were going to look at me and think I’m this vulture who is taking the organs out of their loved one, and I can only imagine the images they might’ve had. But I’ll never forget that interaction and most that I’ve had with the donors. They hung on every word. They wanted to know about the recipients. It truly was this plentiful legacy of their loved one, often who has died unexpectedly, sometimes a young person, and it gives them this positive thing to hold onto in this otherwise terrible time. It is so incredibly special, and I truly believe the donors, even the deceased donors, are our patients just as much as the recipients. It’s so important that we connect with the family, that we let them understand the process, that we are able to do a great job to make this incredible gift work. It’s quite emotional. It really is an incredible bond when we interact with these families.”

The Rosalinde and Arthur Gilbert Foundation, Helen Daniels Bader Fund, a Bader Philanthropy, and Family Caregiver Alliance (FCA), in partnership, are pleased to announce the winners of the 2018 Innovations in Alzheimer’s Caregiving Awards . Each organization is awarded $20,000 for their program.

Creative Expression

Charlotte Symphony Orchestra , Charlotte, North Carolina

PROGRAM: Healing Hands

Diverse / Multicultural Communities

Down Syndrome Network , Inc.​, Tempe, Arizona

PROGRAM: Aging Matters: Growing Older with Down Syndrome

Public Policy

Mental Health America of the MidSouth , Nashville, Tennessee

PROGRAM: Tennessee Coalition for Better Aging

The award recipients will be honored—and their programs presented—at the 2018 Innovations in Alzheimer’s Caregiving Awards Reception on Tuesday, April 16, 2019, 6 p.m. to 8 p.m., during the 2019 Aging in America Conference in New Orleans. All are welcome to attend!

Follow Family Caregiver Alliance / National Center on Caregiving @CaregiverAlly

and Executive Director Kathleen Kelly @KKellyFCA.

CREDITS

Editor: Alan K. Kaplan, (attorney and health policy consultant)

Contributor: Kathleen Kelly (executive director)

Layout: Francesca Pera (communications specialist)

Send your feedback and/or questions to policy_digest@caregiver.org .

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