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Fading Out: Aging and Beyond RSS feed

Helen Jean Medakovich Sarchielli(1939-2000)

Helen Medakovich Sarchielli and Pat McNees (during her permed years) in Loro Ciuffenna, Italy, 1999. Also there, Martha Masinton and Jean Eggenschwiler. Not so very long after this, Helen died. I am told Graziano died in February 2021.

Some deaths come too soon and Helen Jean Medakovich’s was one of them. When she succumbed to lung cancer on October 11, 2000, she was not yet 61—and she was a young 60. It was not only that she was too young to die—it was that she was so unlikely a person to stop being alive. Being alive was what Helen Jean did best.

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Why U.S. medical costs are so high and where the system needs fixing

by Pat McNees (updated 7-30-19;  orig. published 11-11-15)
Why are our medical bills so high? Why aren't drug prices regulated, as they are in other countries? Where is most of our health care budget spent? Where can we improve the system? Why do we overtreat the rich and undertreat the poor? Who is in charge, when a patient needs complex chronic care? Has our market-driven medical care system served us well or do we suffer from its perverse incentives? Ours is the most expensive health care system in the world but it is not delivering the most effective health care. What can we do? Here are links to key articles explaining the high cost of medical care in the United States -- and whether we're getting what we're paying for.
Pharma is showering Congress with cash, even as drug makers race to fight the coronavirus (Lev Facher and Kaitlyn Bartley , STAT, 8-10-2020) The world’s biggest drug makers and their trade groups have cut checks to 356 lawmakers ahead of this year’s election — more than two-thirds of the sitting members of Congress, according to a new STAT analysis. It’s a barrage of contributions that accounts for roughly $11 million in campaign giving, distributed via roughly 4,500 checks from the political action committees affiliated with the companies. The drug industry has a clear stake in keeping the Senate in Republican hands — and its political spending in 2020 reflects that priority. Lots of details on who gets and supports what (or not).
The Health Insurance Hustle: Why Your Health Insurer Doesn’t Care About Your Big Bills Patients may think their insurers are fighting on their behalf for the best prices. But saving patients money is often not their top priority. Just ask Michael Frank. (Marshall Allen, ProPublica, 5-25-18)
Hospitals’ Trauma Care Prices Differed Wildly In 2023: Study (KFF Health News) A new study found prices were so unpredictable between hospitals that some insured patients needing trauma care even ended up with more bills than uninsured people did. Stat, meanwhile, covers tech startups who are making money out of hospital price transparency rules.
A small group of patients account for a whole lot of spending (Drew Altman, Kaiser Family Foundation, 7-29-19) "Among people who get their coverage from a large employer, just 1.3% of employees were responsible for almost 20% of overall health spending, averaging a whopping $88,000 per year. A very small group of patients with major illnesses is responsible for an outsized share of health care spending, and new data show that prescription drugs are a big part of the reason their bills are so high....They often have HIV, MS, cystic fibrosis, rheumatoid arthritis, diabetes, cancer and other serious conditions requiring frequent and often costly care....Prescription drugs account for about 40% of this group’s costs, not counting rebates — compared with just 10% for the country as a whole. Their bills just for prescription drugs average out to about $34,000 per year. That’s much more than the average premium for family coverage. These are exactly the people our insurance system is failing. They have insurance and a major illness, but still struggle with their medical bills as deductibles and other out-of-pocket costs keep rising faster than wages. One solution might be to exempt this small group of high spenders with serious illnesses from drug or other copays, and limit their deductibles."
Health Insurers Make It Easy for Scammers to Steal Millions. Who Pays? You. ((Marshall Allen, ProPublica and Vox, 7-19-19) Health insurers are regarded as fierce defenders of health care dollars. But the case of David Williams shows one reason America’s health care costs continue to rise. The personal trainer spent years posing as a doctor and billing the nation’s top insurers, making off with millions.
What Can Be Done Right Now to Stop a Basic Source of Health Care Fraud (Marshall Allen, ProPublica, 7-19-19) Fraud is one reason we all pay so much for health care. But there are simple fixes that would make it more difficult for scammers to operate: Check to see whether people getting federal ID numbers that allow them to bill insurers have valid licenses. Require insurance companies to verify that the people they are paying are licensed medical providers. Require insurance companies to report cases of suspected fraud to state and federal regulators. Audits and the potential for fines may be needed to spur the insurers to file the reports.
Outrageous medical bills (examples, explained--but not justified!)
Pulling back the curtain on surprise medical bills
What you can do to challenge excessive medical bills
Government efforts to protect against wrongful medical billing
Hospital Financial Analysis: True Cost of Healthcare (David Belk MD, True Cost of Healthcare). What do the carefully researched numbers reveal? "The revenue for any health insurance company is tied directly to its expenses. In other words, the more a health insurance company spends each year, the more revenue they can earn (through premium increases the next year). Therefore, the last thing any health insurance company would want is for their overall expenses to drop. If their expenses were to drop, they couldn’t justify raising (or even maintaining) the amount they charge policy holders in premiums. That would be a disaster for them.
Since hospital utilization has been declining overall, it would be hard for private health insurance companies to continue to show an increase in their costs each year unless they deliberately overpaid hospitals, so that’s exactly what they do. Hospitals don’t mind being overpaid, so they’re not complaining. Since hospital bills always show enormous discounts from the insurance companies (due to persistent over-billing) most people wouldn’t suspect what the insurance companies are really doing. This way, both sides can work together to profit from our ignorance."
Marshall Allen Unearths Waste in Health Care ( Rachel Zamzow, Open Notebook, 2-13-18) "In 2012, ProPublica reporter Marshall Allen came across a staggering statistic: The U.S. health care system wastes an estimated $765 billion each year....Last year, Allen decided to root out the sources of squandered funds within the system—an investigation that culminated in a series called Wasted Medicine. Allen discovered how hospitals discard unused medical supplies, how some drug expiration dates are meaningless, and how drug companies knowingly make oversized eyedrops—a story that prompted a group of U.S. senators to introduce legislation to reduce wasteful packaging of medicines.
Wasted Medicine: Squandered Health Care Dollars (ProPublica Series). Includes A Hospital Charged $1,877 to Pierce a 5-Year-Old’s Ears. This Is Why Health Care Costs So Much. (Marshall Allen, ProPublica and NPR's Shots blog, 11-28-17). When a surgeon doing surgery on a child offers to throw in ear piercing as well, think twice about accepting.
--Paying Till It Hurts In her series on the cost of health care, Elisabeth Rosenthal interviews patients, physicians, economists, hospital and industry officials to examine the high price of health care. Buy her book: An American Sickness: How Healthcare Became Big Business and How You Can Take It Back . And read the series here--including the readers' comments (from both patients and doctors).
• Part 1: Colonoscopy: A case study in high costs The $2.7 Trillion Medical Bill: Colonoscopies Explain Why U.S. Leads the World in Health Expenditures (Elisabeth Rosenthal, Health, NY Times, 6-1-13) While the American medical system is famous for expensive drugs and heroic care at the end of life, a more significant factor in the nation’s annual health care bill may be the high price tag of ordinary services.
• Part 2. Pregnancy: Cash on delivery. American Way of Birth, Costliest in the World (Elisabeth Rosenthal, Health, NY Times, 6-30-13). Cash on delivery.
• Part 3. Joint replacement: A trip abroad. In Need of a New Hip, but Priced Out of the U.S. (Elisabeth Rosenthal, NY Times, 8-3-13)
• Part 4. Prescriptions. No room to negotiate. The Soaring Cost of a Simple Breath (Elisabeth Rosenthal, NY Times, 10-12-13)
• Part 5. E.R. Visit As Hospital Prices Soar, a Stitch Tops $500 (Elisabeth Rosenthal, NY Times, 12-2-13)
Think the E.R. Is Expensive? Look at How Much It Costs to Get There (Elisabeth Rosenthal, NY Times, 12-5-13) Ambulances, once free, are now generally run as businesses that contribute to America’s escalating medical bills.
• Part 6. Dermatology. The high earners. Patients’ Costs Skyrocket; Specialists’ Incomes Soar (Elisabeth Rosenthal, NY Times, 1-18-13) Check out reader responses on three questions: In your experience, do doctors and patients discuss cost as part of care, and, if so, how does that affect the doctor-patient relationship? When do costs influence care? If you are a provider, how have the financial incentives of the current payment system in the United States affected your practice? If you are a provider, how have the financial incentives of the current payment system in the United States affected your practice?
• Part 7. Chronic illnesses. Even Small Medical Advances Can Mean Big Jumps in Bills (Elisabeth Rosenthal, NY Times, 4-5-13)
Health Care’s Road to Ruin (Elisabeth Rosenthal, NY Times, 12-21-13) There are ways to lower costs. Is there the will?

Why do drug companies charge so much? Because they can. (Marcia Angell, Washington Post, 9-25-15) "Unlike every other advanced country, the United States permits drug companies to charge patients whatever they choose. ...Drug companies say high prices are necessary to cover their research and development costs" but most drugs "are invented not by the companies that sell them now but by someone else. Then, like big fish swallowing little fish, larger companies either buy small firms outright or license promising drugs from them. Very often, the original discovery occurs in a university lab with public funding from the National Institutes of Health (NIH), then licensed to a start-up company partly owned by the university and then to a large company. There is very little innovation at the big drug firms. Instead, their major creative output is trivial variations of top-selling medications that are already on the market (called “me-too drugs”), to cash in with treatments just different enough to justify new patents." Pharmaceutical companies are among the most profitable and "they spend more on marketing and administration than on R&D." ... "Congress has blocked Medicare from negotiating the price of drugs or creating a formulary for patients. It’s time that we, too, move to stop price-gouging by the pharmaceutical industry — even when no one notices."

CVS Health Is Sued Over 'Clawbacks' of Prescription Drug Co-Pays (Jef Feeley and Jared S Hopkins, Bloomberg, 8-9-17) CVS Health Corp. was sued by a California woman who accused the drugstore operator of charging customers co-payments for certain prescription drugs that exceed the cost of medicines. CVS, the largest U.S. pharmacy chain, overbilled consumers who used insurance to pay for some generic drugs and wrongfully hid the fact that the medicines’ cash price was cheaper. Woman says she paid $166 for medicine that actually cost $92. Chains worked with benefit managers on billings, suits say.

When the Patient Is a Gold Mine: The Trouble With Rare-Disease Drugs (Benjamin Elgin, Doni Bloomfield, and Caroline Chen, BloombergBusinessWeek, 3-24-17) With a flagship treatment that helps fewer than 11,000 people, how is Alexion making so much money? In the U.S., an orphan drug is defined as one that treats a disease affecting fewer than 200,000 people in the country. Orphan drugs accounted for a disproportionate share, 41 percent, of all medications brought to market in 2014. These drugs have helped millions of people...but have also caused a seismic shift in treatment costs....A fraction of a teaspoon of Soliris, administered in a single 35-minute treatment, costs more than $18,000, and patients might need 26 treatments a year for the rest of their lives. With this single drug accounting for almost all its revenue, Alexion has created enormous wealth out of an estimated 11,000 customers." This is an ugly story about drug company marketing practices".... History: "To address neglected research areas, Congress in 1983 passed the Orphan Drug Act, which gave drugmakers federal grants, tax incentives, and seven years of marketing exclusivity for new rare-disease treatments (vs. three to five years of exclusivity for a more common new drug). In the ensuing 34 years, more than 600 orphan drugs have been approved in the U.S., compared with 10 in the decade before the law was passed. But government-protected monopolies, combined with desperate patients, led to today’s prices." Do your homework. Read this article.
Reducing Medical Costs Where to start.
Collusion between Hollywood script writers and pharmaceutical companies isn’t new. Nor is the call to regulate it. (Mary Chris Jaklevic, HealthNewsReview.org, 6-1-17) 'Plenty has been written about a recent “disease awareness” plotline in ABC’s General Hospital that indirectly promoted ruxolitinib, the only prescription drug approved to treat a rare blood cancer called polycythemia vera (PV). The drug’s manufacturer, Incyte, said in a news release that it “teamed up” with the show and actress Finola Hughes, whose character was diagnosed with PV, “to raise awareness and inspire patients and caregivers impacted by these under-recognized blood cancers.”
non-branded “disease awareness” campaigns aren’t regulated like traditional direct-to-consumer ads, which are subject to explicit requirements including balanced portrayals of a drug’s efficacy and risks. Coverage highlighted an opinion piece in the Journal of the American Medical Association, in which oncologists Vinay Prasad and Sham Mailankody said disease awareness efforts “can lead to unintended consequences, including wasteful diagnostic testing, overdiagnosis, and inappropriate therapy.” They said “attempts may be necessary to regulate disease awareness promotions” including “collaboration and input from the FDA regarding the content of advertisements or disease awareness campaigns.”
What Broke My Father's Heart by Katy Butler (NY Times Magazine, 6-18-10). How putting in a pacemaker wrecked a family's life. Katy Butler's father drifted into what nurses call “the dwindles”: not sick enough to qualify for hospice care, but sick enough to never get better. She writes, of her parents: "I watched them lose control of their lives to a set of perverse financial incentives — for cardiologists, hospitals and especially the manufacturers of advanced medical devices — skewed to promote maximum treatment. At a point hard to precisely define, they stopped being beneficiaries of the war on sudden death and became its victims." Do read the whole article. Here's another excerpt: "Had we been at the Mayo Clinic — where doctors are salaried, medical records are electronically organized and care is coordinated by a single doctor — things might have turned out differently. But Middletown is part of the fee-for-service medical economy. Doctors peddle their wares on a piecework basis; communication among them is haphazard; thinking is often short term; nobody makes money when medical interventions are declined; and nobody is in charge except the marketplace." You may also want to read Knocking on Heaven's Door: The Path to a Better Way of Death

Pharmaceutical Product Hopping: A Proposed Framework For Antitrust Analysis (Michael Carrier and Steve Shadowen, Health Affairs blog, 6-1-17) One "reason for high prices has flown under the radar. When drug companies reformulate their product, switching from one version of a drug to another, the price doesn’t dramatically increase. Instead, it stays at a high level for longer than it otherwise would have without the switch. Although more difficult to discern than a price spike, this practice, when undertaken to prevent generic market entry, can result in the unjustified continuation of monopoly pricing, burdening patients, the government, and the health care system as a whole."
The Healthcare Industry and the USSR (YouTube video, Jeanne Pinder's wonderful talk, Ignite Health Foo 2013). See also Taking the mystery out of health care prices and the wonderful stories about Clear Health Prices.
Bitter Pill: Why Medical Bills Are Killing Us (Steven Brill, Time Magazine, Health & Family, 2-10-13). In the longest article Time has published, Brill tries to answer the question: “Why exactly are the bills so high?” Long but worth reading, on the outrageously excessive prices hospitals, pharmaceutical companies, doctors, and equipment manufacturers charge and how Medicare and other insurers deal with it, or not. See Steven Brill’s 26,000-word health-care story, in one sentence (Sarah Kliff, Wonkblog, Washington Post, 2-23-12). (The sentence: "The American health-care system does not use rate-setting." (In other countries, which set rates for what both private and public plans can charge for various procedures, health-care costs have not risen so much.) And don't ignore the Comments.

Equitable Access to Care — How the United States Ranks Internationally (Karen Davis and Jeromie Ballreich, New England Journal of Medicine, 10-23-14) "Notwithstanding Americans' impression that other countries ration care, for lower-income adults, obtaining timely primary care is a bigger problem in the United States than in other industrialized countries... even Americans with above-average income...are more likely than adults with above-average income elsewhere to report that during the past year, costs kept them from visiting the doctor for medical problems, from filling prescriptions or taking all recommended doses, or from getting recommended tests, treatment, or follow-up."

Patenting the PKU Test — Federally Funded Research and Intellectual Property (Diane B. Paul, New England Journal of Medicine, 8-29-13). "Norms governing what should count as a freely available public good have fundamentally changed since 1965. The shift began in the 1970s, when an 'economic competitiveness agenda,' prompted by the oil crisis and concern about Japanese competition, began displacing narratives of science's role in fighting communism and defeating disease." " The Bayh–Dole Act was followed by other bills promoting the commercialization of publicly funded research, a phenomenon soon exported worldwide. Aggressive commercialization of university research has since become the norm, with universities embracing patenting as an efficient way to transform knowledge into products, generate new income sources, recoup product-development costs, and motivate scientists." " The key principles debated in the Guthrie case underlie the conflicts that remain to this day between political and economic imperatives to commercialize research and the social and moral imperatives to promote public health."

Money-Driven Medicine: The Real Reason Health Care Costs So Much by Maggie Mahar. Among other points made: Today's market-driven medical system emerged over the past century thanks to trends that gradually stripped power from doctors and gave it to corporations, turning patients into profit centers.

5 Things I Didn't Know About Health Care (Until I Got Sick) (C. Coville, Cracked, 3-11-14) Three of them: The medical system is outdated, it doesn't allow for mental limits in the sick, if it doesn't understand your condition it will think you are crazy. "Sick people with potentially curable illnesses are shunted around between separate specialists who don't pay attention to anything except the body part they've been trained to focus on, a problem known as care fragmentation... Because of care fragmentation, sick people often have to coordinate their own care if they want to get treated correctly. But that's not as easy as it sounds, because ..."

Lies, Damned Lies, and Medical Science (David H. Freeman, The Atlantic, 10-4-10). Much of what medical researchers conclude in their studies is misleading, exaggerated, or flat-out wrong. So why are doctors—to a striking extent—still drawing upon misinformation in their everyday practice? Dr. John Ioannidis has spent his career challenging his peers by exposing their bad science.

Home Alone: Family Caregivers Providing Complex Chronic Care (Susan C. Reinhard, Carole Levine, and Sarah Samis, AARP's Public Policy Institute, Oct. 2012) "In a fragmented health care system, it is often difficult to pinpoint individual or institutional responsibility for action. As a result, people with chronic conditions and their family caregivers too often move from the care of one professional to another or from one care setting to another without a clear sense of who is in charge. All too often, no one is in charge. Expecting family caregivers to perform the medical/nursing tasks described in this report without substantial professional involvement is unrealistic and unacceptable."

The Diseases We Spend Our Health Dollars On (Drew Altman, WSJ, 3-3-15) An excellent chart breaking down our health spending dollar by disease. "The BEA found that spending for common illnesses such as a cold or strep throat grew faster than anything else over the 10-year period. Then came spending to treat endocrine disorders such as high cholesterol or diabetes. The bureau also found that the cost of treatment–-a combination of price and the complexity of services and technology used in treatment–-was the main culprit behind spending increases for diseases, not the number of cases treated."

The Thousand-Dollar Pap Smear (Cheryl Bettigole, New England Journal of Medicine, 10-17-13). "The first time a patient called me to say that she'd been billed more than $600 for her Pap smear, I was sure it was a mistake. The second time, I was less sure, and these days I am no longer surprised to find laboratory charges of $1,000 or more for a test that until recently cost only $20 or $30. ... we physicians and our staff are responsible for ordering these unnecessary tests and hence responsible for the huge bills our patients are receiving. Yet we are not doing this alone. Laboratories have learned that one easy way to increase revenue is to make it easy for clinicians to order more tests" Do read this one!

Treating vs. Healing: Understanding What Wellness Means to Patients (Johnny Hourmozoi,, Pacific Standard, 3-31-15) For those accustomed to Western medicine, it may seem crazy to refuse doctor-prescribed medicine. But to truly be a healer, doctors must understand what makes a patient feel well. "Evidence is the currency of contemporary Western medicine... In Iran, the emphasis is placed on healing, a concept intimately tied to notions of spirit and comfort—not morbidity and mortality."

How We Do Harm: A Doctor Breaks Ranks About Being Sick in America, a book by Otis Webb Brawley and Paul Goldberg, exposes the underbelly of healthcare today—the overtreatment of the rich, the undertreatment of the poor, the financial conflicts of interest that determine the care that physicians’ provide, insurance companies that don’t demand the best (or even the least expensive) care, and pharmaceutical companies concerned with selling drugs, regardless of whether they improve health or do harm.

Overtreated: Why Too Much Medicine Is Making Us Sicker and Poorer by Shannon Brownlee. Our health care is staggeringly expensive, yet one in six Americans has no health insurance. We have some of the most skilled physicians in the world, yet one hundred thousand patients die each year from medical errors. Brownlee dissects what she calls “the medical-industrial complex” and lays bare the backward economic incentives embedded in our system.

Medicine’s Top Earners Are Not the M.D.s (Elisabeth Rosenthal, NY Times, 5-17-13) "The biggest bucks are currently earned not through the delivery of care, but from overseeing the business of medicine. The base pay of insurance executives, hospital executives and even hospital administrators often far outstrips doctors’ salaries."

U.S. Health Care Lags Worldwide for Those Over 65 (Paula Span, Caring and Coping, NY Times, 12-12-14) A Commonwealth Fund report card comparing health care in industrialized countries since 1998 shows "mortifying lapses and problems" in the U.S., "despite spending more on health care than any other country in the world." The U.S. Medicare system provides "excellent coverage" overall, provides good coverage for seniors, but what Australia, Canada, France, Germany, the Netherlands, New Zealand, Norway, Sweden, Switzerland and the United Kingdom "share (aside from doing a better job for their elders than the United States, at lower cost) is that their systems cover all ages. Their elders are less likely to arrive at 65 trying to catch up after years without adequate medical care....Before they became Medicare-eligible, American seniors may have forgone preventive treatments or let conditions worsen because they couldn’t afford care."

How much are U.S. doctors worth? Depends who you ask (Harris Meyer, Modern Healthcare 6-24-14). High U.S. physician pay is only a minor component of sky-high U.S. healthcare costs (and U.S. doctors face a higher cost of medical education and medical liability premiums than doctors elsewhere). "And other professionals in healthcare, notably hospital, health plan and pharmaceutical executives, generally make even more money."

Why Are American Health Care Costs So High? (John Green on YouTube, 8-20-13) A little hyper, but worth a listen.

Hospitals Fail To Protect Nursing Staff From Becoming Patients (Daniel Zwerdling, All Things Considered, NPR, 2-4-15) Most hospitals have not taken aggressive action to protect the nursing staff from back injuries from lifting patients. Only slowly, reluctantly are hospitals adopting patient-lifting equipment. (Part 1 of a series on injured nurses.) Part 2: Even 'Proper' Technique Exposes Nurses' Spines To Dangerous Forces (2-11-15). And Part 3: Hospital To Nurses: Your Injuries Are Not Our Problem

Cost of medical school: USA vs France (Kevin Pho, KevinMD.com, 5-8-14) Visuals show dramatic differences. "If you want to pay me like a French doctor, also give me the French cost of medical school and the French medical malpractice system."

The Malpractice Mess (Atul Gawande, Annals of Medicine, New Yorker, 11-14-05) Who pays the price when patients sue doctors? "General surgeons pay anywhere from thirty thousand to two hundred thousand dollars a year in malpractice-insurance premiums, depending on the litigation climate of the state they work in; neurosurgeons and obstetricians pay upward of fifty per cent more." Paying into an insurance fund for those actually harmed by doctors might mean fewer mammoth, random windfalls but under the current system in America most of those who are harmed are not compensated (except the lawyers).

When Health Costs Harm Your Credit (Elisabeth Rosenthal, NY Times, 3-8-14)

Benefits Questioned in Tax Breaks for Nonprofit Hospitals (Elisabeth Rosenthal, NY Times, 12-17-13) Cities still reeling from the recession are challenging the billions of dollars in tax breaks granted to the nation’s nonprofit hospitals.

When Doctors Sell Out, Hospitals Cash In (Community Oncology Alliance, 7-8-13) Everything was the same about Mike Rosenberg’s routine visit to Atlanta Cancer Care in February – everything, that is, but the bill. Rosenberg went to the same office and saw the same staff to get the same blood work and the same medication he gets every month. But the cost difference was remarkable: Rosenberg’s out-of-pocket charge increased from $20 to $212. What his insurer had to pay exploded from $2,735 to $5,661.

New Analysis Shows Many 340B Hospitals Provide Minimal Charity Care; Small Percentage of 340B Hospitals Provide More (Community Oncology Alliance, 3-25-14)

Health Plans Seek Leverage When Physicians Submit Extremely High Bills (Joseph Burns, Managed Care, Aug 2011). One doctor demands $39,000 for a child’s surgery; another bills $56,890 for a bedside consultation. Aetna sued several New Jersey physicians over medical bills for out-of-network care, bills Aetna said were unconscionable.

How Doctors Are Paid Now, And Why It Has to Change (John Carroll, Managed Care, Dec. 2007). Everyone knows about the perverse incentive of fee-for-service medicine, but that hasn’t had much effect on its use. warped the way medicine is practiced, devaluing vital services such as doctor-patient discussions while pumping up rewards for expensive procedures and bigger volumes.

Patents, Profits, and the American People — The Bayh–Dole Act of 1980 (Howard Markel, N Engl J Med 2013; 369:794-796, August 29, 2013, DOI: 10.1056/NEJMp1306553). It's time for Congress to recalibrate Bayh–Dole. "When the Bayh–Dole Act was written, its aim was primarily to stimulate economic growth by more efficiently mining the untapped scientific riches of hospitals, laboratories, and universities. Much has changed since then.... Profits and patents can be powerful incentives for scientists, businesspeople, and universities, but new and ongoing risks — including high prices that limit access to lifesaving technologies, reduced sharing of scientific data, marked shifts of focus from basic to applied research, and conflicts of interests for doctors and academic medical centers — should be mitigated or averted through revisions of the law. All Americans should be able to share in the bounties of federally funded biomedical research."

Data uncover nation’s top Medicare billers ( Peter Whoriskey, Dan Keating and Lena H. Sun, Washington Post, 4-9-14). "Jonathan S. Skinner, a Dartmouth economist..."there are people who are operating in the gray area of health care who are causing Medicare to spend enormous amounts on health care that may be harmful to their patients.'”'

The top 10 Medicare billers explain why they charged $121M in one year (Jason Millan, Wonkblog, 4-9-14) "Some doctors said they were just passing through the payment to drug companies. But the Medicare payment system also incentivizes physicians to choose more expensive drugs, since they’re reimbursed for the average price of the drug plus 6 percent." See comments section for links to articles about pending big changes in Medicare payments to providers.

Manufactured Medicare outrage (Charles Lane, Opinion, Wash Post, 3-18-15) "Last fall, the Department of Health and Human Services released a comprehensive analysis showing that MA costs grew faster than they would have under fee-for-service between 2004 and 2013 — and that only upcoding, not patient demographics or other neutral factors, could explain this.

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Conversations About Dying

(assembled by Pat McNees to facilitate conversations about death, dying, and final wishes)


We should all have the end-of-life conversation (Ellen Goodman on The Conversation Project). "Too many people are dying in the way they would not choose. Surveys tell us that 70 percent of Americans, for example, want to die at home but 70 percent end up dying in hospitals and institutions....Too many survivors, for that matter, are left not just mourning but feeling guilty, depressed, uncertain of whether they have done the right thing.... And we cannot wait for "the right time"  Read More 

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What's wrong with the 21st Century Cures Act

Norman Bauman provided helpful links and comments about the 21st Century Cures Act in the Association of Health Care Journalists' discussion group. I share them here:
With media watchdogs on the sidelines, pharma-funded advocacy groups pushed Cures Act to the finish line (Trudy Lieberman, Health News Reviews, 12-6-16) ‘Progress’ touted by pharma is a huge step backward for patients. "If the committee’s masterful sales job for the Cures Act is a textbook example of what constitutes effective PR and advocacy in Washington these days for legislation that may not be in the best interests of the public, press coverage offers a textbook example of media abdication of their watchdog role. As HealthNewsReview.org pointed out repeatedly over the past year and half, mainstream journalists, with some exceptions (including Carolyn Johnson at the Post and Sheila Kaplan at STAT) did not look closely, ask hard questions, or explore the downsides until the last few weeks when the Cures Act was a done deal headed for victory."
• The 21st Century Cures Act is a deal that will give a lot of money to the NIH, FDA, Cancer Moonshot,etc., but will also weaken the FDA's standards of evidence used to approve drugs, particularly randomized, controlled trials (RCTs). It's a handout to the pharmaceutical industry.  Read More 

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How storytelling can help dementia patients

Updated 8-24-17. This former journalist helps caregivers get to know who their patients once were, before dementia took hold (Tara Bahrampour, The Age, 12-16-16) Jay Newton-Small, a District resident, started a business writing anecdote-filled profiles of dementia patients after her father got Alzheimer’s. 'Until seeing her profile, caregivers for  Read More 
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Lessons from "Obit," the documentary

Vanessa Gould’s fascinating documentary Obit, shown at the summer Docs festival in Silver Spring, is a fascinating overview of how The New York Times obituary section is run. We learn how they decide which people to honor with an obit, at what length, with how many photos. The obit writers “document the lives  Read More 
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Doctors rebel against a re-certification test that costs $23,600 per doctor

by Pat McNees

Doctors complain the tests are unreasonably costly and time-consuming, do not improve the practice of medicine, and are merely enriching the pockets of the certification boards' pockets.
"Over the last few months, we have seen a great increase in the number of doctors ... speaking up against the current MOC (maintenance of certification) that is now in place," wrote Dr. Linda Girgis  in Are Medical Specialty Boards Extorting Physicians? Dr. Girgis explained why doctors do not want to comply with current MOC requirements:
1. The majority of doctors  Read More 

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Resources for finding service dogs, therapy dogs, and other types of assistance dogs

by Pat McNees, updated 2-18-22)
See also FAQs, stories, and articles about assistance dogs and

             Books about assistance dogs

A Complete Guide to Service, Therapy and Emotional Support Dogs (Karen Wang, Friendship Circle, 5-23-13) Suggests resources for finding mobility assistance dogs, medical response dogs (for humans with seizures, diabetes, severe allergies), signal dogs for the hearing impaired, guide dogs for the visually impaired, autism service dogs, psychiatric assistance dogs, therapy dogs, emotional support/companion animals.
Demand for Service Dogs Unleashes a ‘Wild West’ Market (Markian Hawryluk, KHN, 2-16-22) Service dogs can help people with ailments from autism to epilepsy, but a trained dog can cost up to $40,000 — and insurance won’t cover it.
Assistance Dogs International (a coalition of not for profit organizations that train and place assistance dogs, setting standards for the assistance dog industry)
International Association of Assistance Dog Partners (IAADP) (an important nonprofit, cross-disability organization representing people partnered with guide, hearing, and service dogs). You can read issues of IAADP's invaluable newsletter Partners Forum online, free.
Alliance of Therapy Dogs (a national therapy dog registry with 14,000+ members, one aim of which is to provide registration, support, and insurance for members who are involved in volunteer animal assisted activities)
Bright and Beautiful Therapy Dogs
Canine Companions for Independence (CCI) (nonprofit organization that enhances the lives of people with disabilities by providing highly trained assistance dogs and ongoing support to ensure quality partnerships)
Canines for Hope (psychiatric service dogs, and service dog training, South Florida)
Dogs4Diabetics
Dog Wish ("America's top psychiatry service dog facility")
4 Paws for Ability a nonprofit, 501(c)(3) organization whose mission is to place quality service dogs with children with disabilities and veterans who have lost use of limbs or hearing; help with animal rescue, and educate the public regarding use of service dogs in public places. Mentions service dogs for humans with autism, diabetes, hearing problems, mobility problems, seizures, and kids on the FASD spectrum (fetal alcohol syndrome and/or exposed to drugs prenatally)
Heeling Allies Assistance Dogs (mental health service dogs, emotional support dogs, and skilled companion dogs enrich the lives of qualified individuals living with certain psychological, neurological and developmental impairments)
Little Angels Service Dogs (psychiatric service dogs, specially trained to work with veterans with PTSD)
Love on a Leash (therapy pets)
New Horizons Service Dogs
New Life Mobility Assistance (Appalachian State University)
Paws With a Cause Currently 40% of applicants request a PAWS Seizure Response dog. PAWS’ specially designed temperament test identifies if a dog is most suitable to be a Service, Hearing, Seizure Response or Service Dog for Children with Autism.
Pet Partners (therapy animals)
Find the bomb! Good boy! Man’s best friend may be our best bet for staying safe. (Andrea Sachs, Washington Post Magazine, 8-4-16) Dogs are being trained and employed in such fields as search and rescue; narcotics, explosives and bedbug detection; and diabetes alert. Some are providing therapy support and detecting ovarian cancer. Nearly 1,000 six-legged teams safeguard more than 100 airports, mass transit stations and cargo-hold sites. In these anxious times, dogs could have a twofold impact on potential terrorist attacks: deterrence and detection. Sachs writes about where some of man's best friends are being trained, and how, to make the country safe.
Pets for Patriots, companion pet adoption for U.S. military veterans. The Wet Nose Blog: Adoption stories.
Prisoners and Animals Working for Success (P.A.W.S.) , a program of the Southern New Mexico Correctional Facility. (See Working for a Second Chance (Working Like Dogs, 12-11-15)
Pet Partners established the Therapy Animal Program in 1990, its goal being to establish rigorous standards for both animals and their human handlers -- to ensure safe and effective therapy animal visits in the community
The Pets for Elderly Foundation (provides companionship to senior individuals through pet ownership, while saving the lives of companion animals in shelters)
Service Dog Trainers
Shore Service Dogs, Inc.
Working Like Dogs (a resource for people around the world with working dogs and assistance dogs)
West Michigan Therapy Dogs, Inc.
Seniors and Pets (AgingInPlace, National Council for Aging Care). "Those who work caring for the elderly say that pets pull withdrawn seniors out of their shell, provide mild activity and cardio through walking and grooming the pet, and offer a way to feel needed and connect with the world. Pet therapy can also help with Alzheimer’s Sundowners Syndrome. Nighttime can be very confusing and disorienting for folks with Alzheimer’s disease. This is when some Alzheimer’s patients try to run away or leave their home. A pet can prevent this issue by keeping those with Alzheimer’s connected and occupied."
Let me know if I've missed anything or if you have comments.

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Stories and articles about assistance dogs


What is the difference between a Therapy Dog and a Service Dog (Off Leash Dog Training)
A Complete Guide to Service, Therapy and Emotional Support Dogs (Friendship Circle Special Needs Resource Blog, 5-23-13) "The Americans With Disabilities Act (ADA) of 2011 defines service dogs as those trained to do work directly related to a person’s disability. Emotional support animals and dogs used as crime deterrents are excluded from this definition. A service dog is expected to accompany a person with a disability at all times." Most service dogs receive training in one of the following areas (described in this article, with links to where to find each type of dog):
--- Mobility assistance
--- Medical response (seizures, diabetes, severe allergies)
---Signal (hearing impairment)
---Guide (visual impairment)
--- Autism assistance
---Psychiatric assistance
There are also
---Therapy dogs
--- Emotional support/companion animals
Frequently asked questions about Medical Assistance & Diabetic Alert Dogs (Dogs4Diabetics) For example: Medical Assistance Dogs are service dogs that have been trained to respond to an identifiable element that is available to their senses in order to provide support to their handler, allowing the handler to address some aspect of that medical condition. Diabetic Alert Assistance Dogs are a specific type of Medical Assistance Dog that has been trained to use their highly sensitive scent capabilities to identify the changes in blood chemistry that occur during rapid changes in blood sugar levels. Medical Response Dogs are another type of Medical Assistance Dog that has been trained to assist persons based on recognition of symptoms pertaining to a specific medical condition.
Once unwanted, these dogs are now on the front lines of wildlife conservation (Rebekah Barnett, Ideas.Ted.Com, 11-6-18) These incredible detection dogs sniff out poachers and smugglers, sniff out invasive plants and animals, track endangered species, diseases as well as , and more, thanks to the work of wildlife biologist and conservation-dog expert Megan Parker. Thanks to Parker and the team at Working Dogs for Conservation (WD4C), some of these dogs have found a new leash lease on life. Worth watching as video Dogs for Conservation (Megan Parker (TedXJacksonHole, 11-5-15) talks about training dogs to work for conservation and preserve endangered species. "Dogs love telling what they know and they have this unrelenting energy and drive. Those are the characteristics I look for in a dog." These dogs families try to get rid of turn out to have remarkable skills and they "don't quit."
New ADA Service Animal Definition July 23, 2010 (IAADP)
Federal Service Dog Law in Plain English (Kea Grace, Anything Pawsable, News and more for service and working dogs, 7-10-13) Many helpful and interesting articles on this site.
Partners in Independence (short film about assistance dogs)
Assistance Dog Tasks (Joan Froling, Sterling Service Dogs, 10-29-2003) Guide dog tasks (described in detail) include avoiding obstacles, signaling changes in elevation, locating objects on command, retrieving dropped objects, etc., and some are being trained for dual impairments, working with deaf blind students or mobility impaired blind students, for example. Hearing dog tasks are trained to alert their human partners by touch (a nose nudge or pawing) to various sounds at home or outside, including a child crying, a knock at the door, a fire alarm, etc. Service dogs receive six months to a year of training, and some teams master up to 50 different tasks. "A number of the traditional tasks listed [in the article] are proving useful to individuals with hidden disabilities such as a seizure disorder, a psychiatric disorder, a potentially life threatening medical problem or conditions which cause chronic pain." Some tasks help individuals "conserve energy, reduce or avoid pain, minimize dependency on loved ones, prevent injuries or get help in a crisis." Froling lists various retrieve-based tasks, carrying-based tasks, deposit-based tasks, tug-based tasks (such as helping remove shoes and socks), nose-nudge-based tasks (such as nudging shut a dryer door), paw-based tasks (such as calling 911 on a K-9 rescue phone), bracing-based tasks (such as steadying partner getting in and out of bathtub), harness-based tasks (mobility assistance).
Remember For Me – The Alzheimer’s Aid Dogs (Myrna Shiboleth, Kings Valley Collies)
Assistance Dogs: Learning New Tricks for Centuries (Jennie Cohen, History in the Headlines, 8-8-11)
Working Like Dogs: The Service Dog Guidebook
Turning Your Pet Into a Therapy Dog (Jane E. Brody, NY Times 2-29-16) Jane Brody signed up her dog, Max, to be a therapy dog. "Therapy pets differ from service animals like those that guide the blind, detect impending health crises for people with epilepsy or diabetes, or stimulate learning for children with autism or cerebral palsy. Pet therapy most often involves privately owned animals – usually dogs, but also cats, rabbits, even kangaroos, birds, fish and reptiles – that their owners take to facilities to enhance the well-being of temporary or permanent residents. Thus, in addition to relieving the monotony of a hospital stay or entertaining residents in a nursing home, Max might visit a school where young children wary of reading aloud will happily read to a dog that does not care about mistakes."
Pets Allowed (Patricia Marx, New Yorker, 10-20-14) There’s a lot of confusion about what emotional-support animals can legally do. People with genuine impairments who depend on actual service animals get annoyed at what people with "emotional support animals" try to do. Service dogs are allowed to go anywhere. They are trained to perform specific tasks. An emotional-support animal (E.S.A.) "is defined by the government as an untrained companion of any species that provides solace to someone with a disability, such as anxiety or depression." Their rights are more limited.
Adopt A Retired Military Working Dogs (MWD) (Saveavet.org)
International Dog Assistance Week (IADW)
Troops betrayed as Army dumps hundreds of heroic war dogs (Maureen Callahan, NY Post, 2-14-16) Daniel, who doesn’t want to use his real name because he’s on active duty, is one of at least 200 military handlers whose dogs were secretly dumped out to civilians by K2 Solutions in February 2014, a Post investigation has found. It’s a scandal that continues to this day, with hundreds of handlers still searching for their dogs — and the Army, the Pentagon and K2 Solutions covering up what happened, and what may still be happening.

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Books about assistance dogs


When you buy a book from Amazon after following one of these links, this site earns a small commission without raising the price of the book.
Teamwork: A Dog Training Manual for People with Disabilities, Book 1 by Stewart Nordensson and Lydia Kelley
Teamwork II by Stewart Nordensson and Lydia Kelley
PTSD and Service Dogs: A Training Guide for Sufferers by Rick and Heather Dillender
Chelsea: The Story of a Signal Dog by Paul Ogden
Partners in Independence: A Success Story of Dogs and the Disabled by Ed and Toni Eames
Lend Me an Ear: Temperament, Selection and Training of the Hearing Ear Dog by Martha Hoffman
Life on Wheels by Gary Karp
Moving Violations: War Zones, Wheelchairs, and Declarations of Independence by John Hockenberry
Planet of the Blind by Stephen Kuusisto
Training Your Own Psychiatric Service Dog by Katie Gonzalez
Waist-High in the World: A Life Among the Nondisabled by Nancy Mairs
Working Like Dogs: The Service Dog Guidebook by Marcie Davis

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Estate planning and estate and inheritance taxes: What you need to know

The Wills Party (Shmuly Yanklowitz, Modern Loss, 2-17-16) My wife and I thought finalizing our wills was a good reason to have a party. Here’s why. This excellent article provides links to solid information about estate taxes.
The Estate Tax Is Irrelevant to More Than 99 Percent of Americans (Institute on Taxation and Economic Policy)

     "The tax law enacted under President Donald Trump has reduced the reach of the federal estate tax to historic lows. In 2019, the most recent year for which data are available, only 8 of every 10,000 people who died left an estate large enough to trigger the tax.
     "Legislative changes under presidents of both parties have increased the basic exemption from the estate tax over the past 20 years. This has cut the share of adults leaving behind taxable estates down from more than 2 percent to well under 1 percent.
      "Contrary to one criticism of it, the U.S. estate tax does not result in “double taxation,” and, in fact, much of the assets subject to the tax are unrealized capital gains, income that would escape taxation forever if not for the estate tax."
Americans' Ostrich Approach To Estate Planning (Richard Eisenberg, Next Avenue, 4-9-14) "...whether you’re married or single, a parent or childless, a millionaire or middle-income, you need a will. If you have assets in the six figures or higher, you probably ought to have a trust as well, to help minimize estate taxes and avoid probate. A trust also offers you greater control over when and how your assets will be distributed — such as letting your young child receive only a certain amount of money at a certain time."
How to Avoid Fights Over Inheritance(David Francis, U.S. News, 7-17-12) Experts say a will alone is insufficient to prevent family squabbles.
The Misguided Crusade to Kill the Estate Tax (Chad Stone, U.S. News, 3-27-15) Proponents of doing away with the so-called 'death tax' don't have their facts straight. To those who want to repeal it, the federal estate tax is an unfair and unnecessary “death tax” that hurts small businesses and family farms. The facts tell a different story. Estates with more than $5 million for an individual and effectively twice that for a married couple are exempt. This isn’t about struggling small businesses and family farms. It’s about another huge tax cut for those who need it the least.
Best Ways to Give Your Heirs Money While You’re Alive (Lynn Ballou, Next Avenue, 6-4-13) Instead of leaving your adult kids money when you die, create a meaningful gifting plan so you can watch them benefit from your generosity
How to Talk With Your Adult Kids About Their Inheritance (Lori R. Sackler, Next Avenue, 3-22-13) Avoid family strife down the road by holding key conversations about your estate plans — now.
8 Smart Estate Planning Steps to Die the Right Way (Jane Bennett Clark, Pat Mertz Esswein, and Lisa Gerstner, Kiplinger, January 2012)
Keep Control of Assets After Death (Federal Trade Commission, Next Avenue, 3-25-11) A how-to guide for estate planning. Know the terms, for example: Probate. Trust. Living Trust. Will.
Put Some Trust in Your Estate Planning (Federal Trade Commission, 11-2-11) You want your assets to go to the right place with the minimum effort. Here are some of the basics for estate planning.

State Inheritance Tax Chart (About Money) A State Death Tax on Who Inherits Your Property
Which States Collect a State Inheritance Tax? (About Money)
State Estate Tax and Exemption Chart (About Money)

Good News for Beneficiaries and Bad News for Fiduciaries in Regard to Transferee Liability for Estate Tax (Rubin on Tax, 6-2-12)
American Charitable Bequest Demographics: 1992-2012 (PDF, Russell James) "Only about 10 percent of Americans with a will or trust included a charity as a beneficiary in 2010."

 

Top 10 Ways to Transfer Wealth (Elizabeth Harris, Worth, 8-21-15) When President Obama signed the Tax Relief Act into law last December, the new legislation paved the way for individuals and families to give away an unprecedented amount of money without triggering any IRS penalty. Through 2012, the lifetime gift exclusion rises from $1 million to $5 million, with a 35 percent tax rate on anything over that amount. The change means individuals can give up to $5 million tax-free; couples, twice that. For the same period, the estate tax allows a $5 million exemption. Estate attorneys and financial planners advise their clients to act now—before the generous new limits disappear. Here are 10 strategies for doing just that.
Should You Transfer Wealth To Your Grandkids Now? (Ashlea Ebeling, Forbes, 8-2-12) January 2013 update: The fiscal cliff tax deal made permanent the $5 million per person exemption from gift, estate and generation-skipping tax, without curbing any of the wealth transfer techniques available in 2012 described in this article. The annual gift exclusion was $14,000 in 2013.
How to Avoid Gift Taxes Transferring Wealth Parent to Child (John A. Grey, Trusts and Estates blog, 11-20-15)

EXAMPLES OF FIGHTS OVER INHERITANCE
Inside the Family Battle for the Newman’s Own Brand Name (Mark Seal, Vanity Fair, August 2015) Paul Newman's will was changed a dozen times; each daughter was told they would inherit a million dollars and would have a foundation set up for them.

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My Mother, The Lion

by Ruth Little
When my partners Holly Hanson, Judie Suit, and I started Elders’ Eden, our dream was to create for our mothers (and Judie’s aunt) a real home — a place where they were loved and valued as the remarkable people they are, each with special skills, achievements, and quirks. We wanted them to have close and continuing relationships with caregivers, children, and pets. And we wanted them to be able, if at all possible, to die at home. Read More 
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