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Aging and Beyond
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Drugs, Big Pharma, conflicts of interest, and why U.S. patients pay too much for medication

by Pat McNees (updated 10-14-21) 
Highlights from below:  

• "Republican candidates blame skyrocketing drug costs on over-regulation and a few drug companies' 'pure profiteering,' but don't say that Medicare should negotiate drug prices or that the government should limit drug maker’s profits, steps that might dramatically shake up the marketplace....they’re not even making modest suggestions to stem rising costs, focusing instead on hammering a few headline-making companies that they portray as bad actors."

• "High cancer drug prices are harming patients because either you come up with the money, or you die."
• Polls show high drug costs as "voters' No. 1 health concern," but the candidates are "caught in the box of Republican free market orthodoxy — and also, of long-standing relationships with the pharmaceutical industry, a lobbying powerhouse on the Hill."
• In response to legislation requiring pharmaceutical sales reps promoting medicines at doctors' offices simply to reveal a price, pharma lobbyists were brought in to fight legislation requiring price transparency.
• It doesn't matter if a cheaper (often generic) version may be available if doctors don't pay attention to costs and consumers believe the more expensive drug is probably more effective. Moreover, doctors who do pay attention to costs have an incentive to prescribe the more expensive version of a drug, not the generic version. And pharmacies don't always pass along the declining cost of generic drugs to consumers.
• Provide "greater transparency in how drugs are priced, and how the money flows through the system. Pharmacy benefit managers have outsized power and take too much money from the system."
How U.S. Health Care Became Big Business (Terry Gross, Fresh Air, 4-10-17, interviews Elisabeth Rosenthal, author of An American Sickness: How Healthcare Became Big Business and How You Can Take It Back). "Health care is a trillion-dollar industry in America, but are we getting what we pay for? Dr. Elisabeth Rosenthal, a medical journalist who formerly worked as a medical doctor, warns that the existing system too often focuses on financial incentives over health or science. "We've trusted a lot of our health care to for-profit businesses and it's their job, frankly, to make profit." Rosenthal's new book, An American Sickness, examines the deeply rooted problems of the existing health-care system and also offers suggestions for a way forward. She notes that under the current system, it's far more lucrative to provide a lifetime of treatments than a cure. She talks about what consolidation of hospitals is doing to the price of care, about the ways the health-care industry stands to profit more from lifetime treatment than it does from curing disease, about how prices will rise to whatever the market will bear, about how to decipher coded medical bills, and about why we must learn to initiate conversations early on with doctors about fees and medical bills. She also talks about getting charged for "drive-by doctors" brought in by the hospital or primary doctor.


What a $2 Million Per Dose Gene Therapy Reveals About Drug Pricing (Robin Fields, ProPublica,2-12-25) The gene therapy Zolgensma helped children born with a fatal disease, spinal muscular atrophy, grow up to run and play. But the cost was stunning: $2 million per dose. While taxpayers and small charities funded the drug's early development, executives, venture-capital backers and a pharma giant have reaped the profits. The drug's cost adds to the nation's ballooning bill for prescription drugs and puts Zolgensma out of reach for kids in many low- and middle-income countries.

    Unlike other nations, the United States allows companies to charge whatever they want for new drugs. This often means Americans pay the world’s highest prices, particularly during the period when only the original manufacturer can market a drug. How drug companies pick prices for their products is among their most closely held secrets. Value-based pricing, was originally championed by insurers and consumer watchdogs hoping to rein in drug prices. Other nations use economic assessments to decide whether to cover drugs and at what price, often paying far less than the U.S. for the same treatments. But pharmaceutical companies have learned to use these techniques to their advantage. Almost immediately, Carbona said, the board pushed to take the company public. “I mean, they all have their hearts in the right place, but they’re being run by people who are looking for a return on investment,” he said.


Employers Haven’t a Clue How Their Drug Benefits Are Managed (Arthur Allen, KFF Health News, 10-9-24) Most employers have little idea what the pharmacy benefit managers they hire do with the money they exchange for the medications used by their employees, according to a KFF survey. PBM leaders say they save companies and patients billions of dollars annually by obtaining rebates from drugmakers that they pass along to employers. Drugmakers, meanwhile, say they raise their list prices so high in order to afford the rebates that PBMs demand in exchange for placing the drugs on formularies that make them available to patients. “I don’t think they can ever know all the ways the money moves around because there are so many layers, between the wholesalers and the pharmacies and the manufacturers,” said survey leader Gary Claxton, a senior vice president at KFF, a health information nonprofit that includes KFF Health News.

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Vox: EpiPen’s 400 Percent Price Hike Tells Us A Lot About What’s Wrong With American Health Care (Sarah Cliff, Vox, 8-23-16) The story of Mylan’s giant EpiPen price increase is, more fundamentally, a story about America's unique drug pricing policies. We are the only developed nation that lets drugmakers set their own prices, maximizing profits the same way sellers of chairs, mugs, shoes, or any other manufactured goods would. In Europe, Canada, and Australia, governments view the market for cures as essentially uncompetitive and set the price as part of a bureaucratic process, similar to how electricity or water are priced in regulated US utility markets.
Price of Snakebite Drug Is Sky High, But New Competitor Unlikely to Lower Costs (Carmen Heredia Rodriguez, KHN, 8-8-19) In a case reported by Kaiser Health News and NPR (a 9-year-old hiker snakebitten at dusk on a nature trail), an Indiana hospital last summer charged nearly $68,000 for four vials of CroFab. CroFab faces competition from a snake antivenin called Anavip. But few experts who study drug laws and drug prices expect this competition to reduce the cost for patients. Legal wrangling, the advantageous use of the patent system and the regulatory hurdles in creating cheaper alternative drugs stymie any serious price competition. Indeed, the antivenin is a case study of why drug prices are so high. Head-to-head competition between brand-name medicines may not meaningfully reduce prices. “When we allow a system of perverse incentives to flourish, this is the result we get,” said Robin Feldman, a professor at the UC Hastings College of the Law in San Francisco who specializes in pharmacy law.

Anatomy of a 97,000% drug price hike: One family's fight to save their son (Wayne Drash, CNN, 6-29-18) At 7 months, Trevor was diagnosed with infantile spasms, a rare and catastrophic form of epilepsy. The diagnosis was devastating, forcing the family to cancel an overseas move and fight for their son's life. It also thrust them into the unregulated world of America's drug prices. Trevor's doctors said he needed a "miracle drug" known as Acthar. But between Trevor's birth and diagnosis, the price of the drug had shot up from $1,600 a vial to more than $23,000 a vial -- making him one of the first children caught up in one of medicine's most controversial price hikes. Trevor would need at least five vials....Questcor Pharmaceuticals had paid a mere $100,000 for the rights to the drug in 2001. The company first raised the price from $40 to $750 a vial shortly after acquiring it. The price doubled over the next few years. Then, on August 27, 2007, the price shot up overnight from $1,600 to $23,000 a vial. The hike was so dramatic that the Epilepsy Foundation, the American Epilepsy Society, the American Academy of Neurology and the National Association of Epilepsy Centers fired off a letter demanding answers.'
• Step therapy ('fail-first" drug policies allow health insurance to practice medicine. Designed to keep insurance costs down, step therapy ("fail first") protocols insist that a patient start with a traditional lower-cost drug and advance to a newer, more expensive drug only if the first drug fails to produce the desired results. For new drugs that are clearly more effective, this means doctors and patients have to jump through hoops to get patient to the more effective drug, in order to get insurance coverage."
• 'It’s sort of embedded in the health care system that the price is never the price, unless you’re a cash-paying customer,' Mr. Fein said. 'And in that case, we soak the poor.'”'
• A Pro Publica investigation shows that many doctors are being paid by the same drug companies whose medicines they prescribe.

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• The public ranks the pharmaceutical industry right between the oil industry and insurance companies in overall favorability."
• Why do drug companies charge so much? Because they can. Because they've got the politicians wrapped around their little fingers.

Here are SOME of the stories about escalating U.S. drug costs that could be fixed, if politicians did what they should:
Drug Trade Group Quietly Spends ‘Dark Money’ to Sway Policy and Voters (Jay Hancock, KHN and New York Times, 7-30-18) "In 2010, before the Affordable Care Act was passed by Congress, the pharmaceutical industry’s top lobbying group was a very public supporter of the measure. It even helped fund a multimillion-dollar TV ad campaign backing passage of the law." Last year it ostensibly stayed out of the fray when Republicans mounted effort to repeal and replace the law. But it provided financial support of another group, the American Action Network (AAN), "which was heavily involved in that effort to put an end to the ACA, often referred to as Obamacare, spending an estimated $10 million on an ad campaign designed to build voter support for its elimination....PhRMA was one of AAN’s biggest donors the previous year, giving it $6.1 million, federal regulatory filings show. And PhRMA had a substantial interest in the outcome of the repeal efforts. Among other actions, the GOP-backed health bill would have eliminated a federal fee paid by pharmaceutical companies, one estimated at $28 billion over a decade....The conservative-leaning AAN has become one of the most prominent nonprofits for funneling “dark money” — difficult-to-trace funds behind TV ads, phone calls, grass-roots organizing and other investments used to influence politics. Such groups have thrived since the Supreme Court’s Citizens United decision in 2010, which loosened rules for corporate political spending, and amid what critics say is nonexistent policing of remaining rules by the IRS."
How Scientific Is Modern Medicine Really? (Dana Ullman, HuffPost blog, 6-20-10, updated 12-6-17)The British Medical Journal’s “Clinical Evidence” reviewed approximately 2,500 treatments and found:

• 13 percent were found to be beneficial

• 23 percent were likely to be beneficial

• Eight percent were as likely to be harmful as beneficial

• Six percent were unlikely to be beneficial

• Four percent were likely to be harmful or ineffective.

• 46 percent were unknown as to whether they were efficacious or harmful.

       'A survey in England found that 90 percent of infants were prescribed drugs that were not tested for safety or efficacy in infants. There is almost a 350 percent increase in adverse drug reactions in children prescribed an off-label drug than children who were prescribed a drug that had been tested for safety and efficacy.'Doctors today commonly assert that they practice “scientific medicine,” and patients think that the medical treatments they receive are “scientifically proven.” However, this ideal is a dream, not reality, and a clever and profitable marketing ruse, not fact.'
Eyes Fixed On California As Governor Ponders Inking Drug Price Transparency Bill (April Dembosky, KQED, NPR, and Kaiser Health News, 10-6-17) California bill would compel drug companies to justify price hikes. Insurers, hospitals and health advocates are waiting for Gov. Jerry Brown to deal the drug lobby a rare defeat, by signing legislation that would force pharmaceutical companies to justify big price hikes on drugs in California. The bill would require drug companies to give California 60 days’ notice to state agencies and health insurers anytime they plan to raise the price of a drug by 16 percent or more over two years. They would also have to explain why the increases are necessary. In addition, health insurers would have to report what percentage of premium increases are caused by drug spending. Drugmakers spent $16.8 million on lobbying from January 2015 through the first half of this year to kill an array of drug legislation in California, according to data from the secretary of state’s office.

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FDA Repays Industry by Rushing Risky Drugs to Market (Caroline Chen, ProPublica, 6-26-18) As pharma companies underwrite three-fourths of the FDA’s budget for scientific reviews, the agency is increasingly fast-tracking expensive drugs with significant side effects and unproven health benefits. Example? Patients on Uloric, a gout drug, suffered more heart attacks, strokes and heart failure in two out of three trials than did their counterparts on standard or no medication. And since the FDA fast-tracked approval of Nuplazid (a drug for hallucinations and delusions associated with Parkinson’s disease) and it went on the market in 2016 at a price of $24,000 a year, there have been 6,800 reports of adverse events for patients on the drug, including 887 deaths as of this past March 31.
As States Target High Drug Prices, Pharma Targets State Lawmakers (Jay Hancock and Shefali Luthra, Kaiser Health News, 2-1-18) State lawmakers are likely to consider drug-price transparency bills this year in Connecticut, Michigan, Oregon, Washington and New Jersey, to name just a few. Many of the measures are similar to a new California law that requires drugmakers to justify big price increases. (To fight that law, the industry hired 45 lobbying firms.) PhRMA set the stage in 2016 by establishing a group that ultimately spent $110 million to defeat a high-profile California ballot initiative requiring state agencies to pay no more for drugs than does the federal Department of Veterans Affairs. A PhRMA-linked group spent more than $50 million to defeat a similar ballot measure last year in Ohio. PhRMA wrote checks to hundreds of legislative candidates and political action committees in dozens of states in 2016, newly available IRS filings show. Drug prices are “something that’s completely out of control,” said Kirk Talbot, chairman of the House insurance committee, adding that he gets constituent requests to rein in prescription medicine prices. "PhRMA argued that informing doctors of wholesale drug prices is irrelevant to patients. What matters is consumers’ out-of-pocket payment, not the rest of the cost that’s often picked up by insurance, they said." But high drug prices are a large part of the reason insurance is increasing in cost.
• In response to legislation requiring pharmaceutical sales reps promoting medicines at doctors’ offices simply to reveal a price, pharma lobbyists were brought in to fight legislation requiring price transparency.

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Climbing Cost of Decades-Old Drugs Threatens to Break Medicaid Bank (Sydney Lupkin, KHN, 8-14-17) Skyrocketing price tags for new drugs to treat rare diseases have stoked outrage nationwide. But hundreds of old, commonly used drugs cost the Medicaid program billions of extra dollars in 2016 vs. 2015, a Kaiser Health News data analysis shows. Eighty of the drugs — some generic and some still carrying brand names — proved more than two decades old. Even after a medicine has gone generic, the branded version often remains on the market. Medicaid recipients might choose to purchase it because they’re brand loyalists or because state laws prevent pharmacists from automatically substituting generics. Even after a medicine has gone generic, the branded version often remains on the market. Medicaid recipients might choose to purchase it because they’re brand loyalists or because state laws prevent pharmacists from automatically substituting generics.
Collusion or Coincidence: The Making of a Drug Shortage (David Belk, MD, Huff Post, 8-18-17) Multiple pharmaceutical companies stopped producing a commonly prescribed blood pressure medication (the beta blocker atenolol) at the same time and for no apparent reason. Was this the result of collusion or merely a coincidence? Was this an effort to get patients onto the newer, higher priced nongeneric drug?
20 States Accuse Generic Drug Companies of Price Fixing (Katie Thomas, NY Times, 12-15-16) The suit’s focus is two drugs, a delayed-release form of the antibiotic treatment doxycycline hyclate, and glyburide, a commonly used diabetes drug. The price of doxycycline has surged in recent years, and it was singled out by members of Congress and others as a prime example of unexplained price increases for generic drugs. See also News of Charges in Price-Fixing Inquiry Sends Pharmaceuticals Tumbling (Katie Thomas, NY Times, 11-3-16) "Drug companies have come under intense scrutiny over the last two years over the prices of their drugs, particularly old drugs that have lost their patent protection but have, in some cases, jumped in price. In the case of doxycycline, an antibiotic, for example, the price went from $20 a bottle in October 2013 to $1,849 by April 2014, according to members of Congress who are investigating drug prices. The same report found that the price of a pill of digoxin, an old heart medicine, rose to $1.10 in 2014 from 11 cents in 2012."
Scroll down for stories about EpiPen price gouging.
Middlemen Who Save $$ On Medicines — But Maybe Not For You ( Francis Ying, Julie Appleby, Stephanie Stapleton, Kaiser Health News, 8-2-17) Pharmacy benefit managers — companies that are often unnoticed and even less understood by most consumers — hold an important place in the prescription drug-pricing pipeline. In this video, Kaiser Health News examines the role of PBMs in the drug pricing pipeline -- detailing the emergence of these multimillion-dollar corporations and the impact they have on medication costs and patients’ access to these treatments. The big three PBMs are: CVS Caremark, Optum RX, and Express Scripts. They make money and get rebates, may favor the meds with the biggest rebates (for them, not us), and apparently do not pass savings on to consumers.

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Report: Here's What The Feds Can Do To Cut Drug Prices (Alison Kodjak, Shots, NPR, 11-30-17) Drug prices are too high, and we had better do something about it. That is the nutshell conclusion of a 201-page report from the National Academies of Sciences, Engineering and Medicine. The independent advisory group's report lists dozens of suggestions for what U.S. officials could do to rein in those rising prices. Many have been tossed around Washington for years. And given the power of the pharmaceutical lobby — it has spent more than $200 million on lobbying so far this year, according to the Center for Responsive Politics — few of them are likely to be implemented soon. Key recommendations: Allow the federal government to negotiate drug prices and refuse to cover some expensive medications. Speed the approval of generics and biosimilars and ensure patients have access. Shed light on who pays what for prescription drugs. Discourage those endless ads pushing prescription drugs and stop giving patients coupons to try medication. Cut the cost to consumers for their prescription drugs. Take away incentives for doctors to administer high-cost drugs. But even in the dissent, there was some agreements, specifically in the need for greater transparency in how drugs are priced, and how the money flows through the system. The dissenters suggest that pharmacy benefit managers have outsized power and take too much money from the system. (But do read the whole article!)
'Talk about an unholy alliance': Lawyers, doctors and pharmacies (William Bender, Philly.com, Philadelphia Inquirer, 9-22-17) Three partners at Pond Lehocky, the biggest law firm in town for workers’ compensation case, "and its chief financial officer are majority owners of a mail-order pharmacy in the Philadelphia suburbs that has teamed up with a secretive network of doctors that prescribes unproven and exorbitantly priced pain creams to injured workers — some creams costing more than $4,000 per tube. Pond Lehocky sends clients to preferred doctors and asks them to send those new patients to the law firm’s pharmacy, Workers First....Some of the doctors sending patients to Workers First also own a piece of the pharmacy, enabling them to make money from both patient care and the prescriptions....Legal and medical ethicists say breaking down the walls among lawyers, doctors, and pharmacists can lead to conflicts of interest and create a financial incentive to prescribe the costliest drugs — whether or not they are medically appropriate — or to prolong workers’ comp legal disputes to boost revenues....These sorts of doctor- and lawyer-owned pharmacies are largely unknown outside of the local workers’ comp industry and are not fully understood even within legal and medical communities, because the lawyers and physicians behind them have kept a low profile or sought to conceal their ownership."

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Flurry of Federal and State Probes Target Insulin Drugmakers and Pharma Middlemen (Sarah Jane Tribble, Kaiser Health News, 10-30-17) 'With the price of a crucial diabetes drug skyrocketing, at least five states and a federal prosecutor are demanding information from insulin manufacturers and the pharmaceutical industry’s financial middlemen, seeking answers about their business relationships and the soaring price of diabetes drugs....Insulin makers Eli Lilly, Novo Nordisk, Sanofi and top pharmacy benefit manager CVS Health are targets in the state investigations. Several of the financial filings note that the state and federal prosecutors want information regarding specific insulins for specific dates in relation to “trade practices.” They appear to be looking into potentially anti-competitive business dealings that critics have leveled at this more than $20 billion niche market of the pharmaceutical industry...These include whether drugmakers and middlemen in the supply chain have allowed prices to escalate in order to increase their profits. At the same time, prominent class-action lawyers are bringing suits on behalf of patients. At the same time, prominent class-action lawyers are bringing suits on behalf of patients. Steve Berman, an attorney best known for winning a multibillion-dollar settlement from the tobacco industry, alleged collusion and said it was time to break up the “insulin racket.” The price of insulin — a lifesaving drug — has reached record highs as Eli Lilly, Novo Nordisk and Sanofi raised prices more than 240 percent over the past decade to often over $300 a vial today, with price rises frequently in lockstep...in the final months of 2007, Sanofi’s Lantus cost $88.20 per vial and Novo Nordisk’s Levemir $90.30 a vial. Today, after increasing in tandem over the years, Lantus costs $307.20 per vial and Levemir runs $322.80 for the same amount, based on average wholesale prices."
Timeline: Insulin Market Under Scrutiny (Sarah Jane Tribble, KHN, 10-30-17)
Drug Charity May Shutter After U.S. Faults Pharma Influence (Robert Langreth and Benjamin Elgin, Bloomberg, 11-29-17) Caring Voice Coalition, a nonprofit that takes money from drug companies to help patients pay for medicines, may close since an Office of Inspector General citation finds that the organization improperly allowed donors to influence operations and the use of patient data. The medical charity, which received hundreds of millions of dollars from pharmaceutical companies, lost a crucial stamp of approval from the U.S. government, after allowing its donors improper influence over how the nonprofit was run. For the last decade, the Mechanicsville, Virginia-based foundation has been one of the biggest patient assistance charities in the U.S. It helps patients afford expensive drugs by funding health insurance co-payments that can otherwise total more than $10,000 a year. Without the charity, funded almost entirely by drugmakers, many patients might not be able to afford life-saving medicine.
Big Pharma Spends on Share Buybacks, but R&D? Not So Much (Gretchen Morgensen, Fair Game, NY Times, 7-14-17) A new academic study reveals that big pharmaceutical companies have spent more on share buybacks and dividends in a recent 10-year period than they did on research and development. Many big pharmaceutical companies are living off patents that are decades-old and have little to show in the way of new blockbuster drugs. But their share buybacks and dividend payments inoculate them against shareholders who might be concerned about lackluster research and development. “The key cause of high drug prices, restricted access to medicines and stifled innovation, we submit, is a social disease called ‘maximizing shareholder value,’” the study’s authors concluded.

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How U.S. Health Care Became Big Business (Fresh Air, NPR, 4-10-17) Terry Gross interviews Elisabeth Rosenthal, editor of Kaiser Health News and author of a super-important book, An American Sickness: How Healthcare Became Big Business and How You Can Take It Back. Rosenthal explains how health care became big business and how the pricing and billing of medical services, devices and prescription drugs became so complicated even a lot of doctors don't understand it. "But basically if you look at drug prices, for example, there was a miraculous drug called Gleevec which really changed cancer patient's lives when it came out maybe 10, 15 years ago. Now there are many, many kind of copycat versions of Gleevec. We call them in the profession sons of Gleevec. And they're all four or five times more expensive than Gleevec was when it came out. So if you were looking at a world where an economic market worked, you would think, wow, there are 10 of these now so the price should have come down - it hasn't....the ultimate lesson of much of American health care is that prices rise to whatever the market will bear. And another concept that I think is unique to medicine is what economists call sticky pricing, which is a wonderful term. It basically means - and you see this over and over again in the drug sphere and also in the hospital chargemaster sphere - once one drug maker, one hospital, one doctor says hey, we could charge 10,000 for that procedure or that medicine. Maybe it was 5,000 two months ago, but once everyone sees that someone's getting away with charging 10,000, the prices all go up to that sticky ceiling."

Patient assistance charity says U.S. contacted it in probe (Nate Raymond, Reuters, 9-25-17) "A U.S. charity that offers assistance to patients seeking help to cover out-of-pocket drug costs on Monday said it has been contacted in a connection with federal investigation into drugmakers’ financial support of non-profits like itself....Drug companies are prohibited from subsidizing co-payments for patients enrolled in government healthcare programs like Medicare. But companies may donate to non-profits providing co-pay assistance as long as they are independent. Amid increased attention to rising drug prices, concern has arisen that donations from drugmakers to patient-assistance groups may be contributing to price inflation....The U.S. Attorney’s Office also as part of a civil settlement said Aegerion violated a anti-kickback law by funneling funds through PSI to induce Juxtapid purchases by defraying patient’s co-payment obligations for the drug, which eventually cost $330,000 annually....In Aegerion’s case, prosecutors said after the U.S. Food and Drug Administration in 2012 approved Juxtapid for treating high cholesterol in people with a rare genetic disease, Aegerion promoted it for patients who did not have the condition."

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Orphan Drugs: The good, the bad, and the greedy. Important pieces (and videos) on the orphan drug machine, on how pharmaceutical companies are gaming the system, on how the patients with rare diseases have become a gold mine for drug manufacturers, who accept a seven-year monopoly to provide drugs for rare diseases and then milk the system for off-label uses at the premium price afforded by the monopoly.
The Senate bill does nothing to fix America's biggest health care problem (Sarah Kliff, Vox, 6-30-17) The biggest problem in American health care -- prices -- is one that the Republican health care plans won’t really try to solve. To be fair, it’s one that Obamacare didn’t touch, either. Health care prices aren’t part of the American health care debate. But they need to be. Other developed countries use price controls in medicine. The government negotiates with drug companies, device makers, and doctors to set lower prices. The United States does set medical prices for the 50 million elderly Americans who rely on Medicare. The Republican plans put the burden of high prices more squarely on patients
The Complex Math Behind Spiraling Prescription Drug Prices (Katie Thomas, NY Times, 8-24-16) "Many people are covered by health plans with large deductibles that require them to pay the full price of their drugs until they hit their limit, which can be thousands of dollars a year. And more plans are requiring patients who need expensive specialty drugs to contribute a percentage of the list price. Drug companies often help cover patients’ out-of-pocket costs through assistance programs, but not always. So patients who are the sickest and require the most expensive drugs are the most vulnerable to soaring drug prices. 'It’s sort of embedded in the health care system that the price is never the price, unless you’re a cash-paying customer,' Mr. Fein said. 'And in that case, we soak the poor.'”'
Tracking Who Makes Money On A Brand-Name Drug (Julie Appleby, Kaiser Health News, 10-6-16)
A new Parkinson’s drug is a long-acting version of a cheap generic. Should it cost $30,000 a year? (Adam Feuerstein, STAT Plus, 8-25-17)
Sounds Like A Good Idea? Regulating Drug Prices (Julie Rovner and Francis Ying, KHN, 7-11-16

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Waste in Cancer Drugs Costs $3 Billion a Year, a Study Says (Gardiner Harris NY Times, 3-1-16) "The federal Medicare program and private health insurers waste nearly $3 billion every year buying cancer medicines that are thrown out because many drug makers distribute the drugs only in vials that hold too much for most patients, a group of cancer researchers has found. Some of these medicines are distributed in smaller vial sizes in Europe, where governments play a more active role than the United States does in drug pricing and distribution. Where governments play a more active role than the United States does in drug pricing and distribution....“Drug companies are quietly making billions forcing little old ladies to buy enough medicine to treat football players, and regulators have completely missed it,” said Dr. Peter B. Bach, director of the Center for Health Policy and Outcomes at Memorial Sloan Kettering and a co-author of the study. “If we’re ever going to start saving money in health care, this is an obvious place to cut.”... Pfizer and Merck spend just 17 percent of their revenues finding new drugs.
The Orphan Drug Machine (KHN video, 6 minutes)
The Prescribers: Inside the Government's Drug Data (major Pro Publica investigation by Charles Ornstein and colleagues). Stories include Medicare’s Failure to Track Doctors Wastes Billions on Name-Brand Drugs (Charles Ornstein, Tracy Weber and Jennifer LaFleur, 11-18-13); How a Simple Fix to Reduce Aberrant Prescribing Became Not So Simple (Charles Ornstein, 2-10-17); ‘Let the Crime Spree Begin’: How Fraud Flourishes in Medicare’s Drug Plan (Weber and Ornstein, 12-19-13); As Opioid Epidemic Continues, Steps to Curb It Multiply (Ornstein, 5-12-16); Brand-Name Drugs Increase Cost But Not Patient Satisfaction (Ornstein, 11-19-15); An Unintended Side Effect of Transparency (Stephen Engelberg, 5-12-16); and more.

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To Save On Drug Costs, Insurer Wants To Steer You To ‘Preferred’ Pharmacies (Pauline Bartolone, California Healthline, 3-9-17) "Blue Shield of California wants to create “a tiered pharmacy network” in its 2018 small- and large-group plans, according to preliminary proposals the company submitted to the California Department of Managed Health Care (DMHC)...consumers still would have a broad selection of pharmacies, but they would have to choose a “preferred” pharmacy to maintain this year’s copayment amount. Outside of that network, consumers could pay up to $50 more for the same prescription...Advocates with Consumers Union, which hasn’t taken a position on the most recent Blue Shield proposal, say pharmacy networks could create more complexity for lower-income people in an already complicated health insurance system, one that faces more uncertainty under an Obamacare repeal....Imholz said creating economic incentives to steer patients toward network pharmacies could inconvenience the most vulnerable patients. If the preferred pharmacy is farther away, or in a rural area, lower-income patients dependent on public transit could have a harder time reaching the preferred pharmacy..."
Doctors' incentives to prescribe expensive drugs (links to several articles on the subject)

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Behind The EpiPen Monopoly: Lobbying Muscle, Flailing Competition, Tragic Deaths (Pauline Bartolone, Kaiser Health News, 9-8-16) 'Mylan, the company that raked in $1 billion last year for the EpiPen, takes credit for passing “legislation in 48 states” to ensure schools have them. But its political maneuvering is only one reason the company has, in its own words, become “the number one dispensed epinephrine auto-injector.”'...'Indeed, Mylan’s presence in state houses across the country has grown exponentially. The company added lobbyists in 36 states between 2010 and 2014, according to the Center for Public Integrity, outpacing every other U.S. company. And it spent more than $1.3 million lobbying in 16 states since 2012, according to the National Institute on Money in State Politics.' 'The school give-away program brings visibility and credibility to the EpiPen brand, building a consumer base beyond schools. “It’s kind of like the first hit’s for free...”'
The EpiPen, a Case Study in Health System Dysfunction (Aaron E. Carroll, The New Health Care, NY Times, 8-23-16) "Epinephrine isn’t an elective medication. It doesn’t last, so people need to purchase the drug repeatedly. There’s little competition, but there are huge hurdles to enter the market, so a company can raise the price again and again with little pushback. The government encourages the product’s use, but makes no effort to control its cost. Insurance coverage shields some from the expense, allowing higher prices, but leaves those most at-risk most exposed to extreme out-of-pocket outlays. The poor are the most likely to consider going without because they can’t afford it. EpiPens are a perfect example of a health care nightmare. They’re also just a typical example of the dysfunction of the American health care system."
Getting Patients Hooked On An Opioid Overdose Antidote, Then Raising The Price (Shefali Luthra, Kaiser Health News, 1-17-17) First came Martin Shkreli, the brash young pharmaceutical entrepreneur who raised the price for an AIDS treatment by 5,000 percent. Then, Heather Bresch, the CEO of Mylan, who oversaw the price hike for its signature Epi-Pen to more than $600 for a twin-pack, though its active ingredient costs pennies by comparison. Now a small Virginia company called Kaleo is joining their ranks. It makes an injector device that is suddenly in demand because of the nation’s epidemic use of opioids, a class of drugs that includes heavy painkillers and heroin. Called Evzio, it is used to deliver naloxone, a life-saving antidote to overdoses of opioids. Experts say the device’s price surge is way out of step with production costs, and a needless drain on health-care resources. And competition is limited: One of the few consumer-friendly alternatives to Evzio is a nasal spray device for naloxone. (In another Mylan parallel, Kaleo offers coupons to patients with private insurance, so they don’t have any co-pay when they pick up the device.)

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The $4,500 injection to stop heroin overdoses (Shefali Luthra, Kaiser Health News, Business, Washington Post, 1-29-17). "Evzio is used to deliver naloxone, a life-saving antidote to overdoses of opioids. As demand for the product has grown, Kaleo has raised its twin-pack price to $4,500, from $690 in 2014....It’s another auto-injector that delivers an inexpensive medicine. One difference, though, is that Evzio talks users through the process as they inject naloxone....Still, experts say the device’s price surge is way out of step with production costs and a needless drain on health-care resources....Kaleo, which is trying to blunt the pricing backlash and turn Evzio into the trusted brand, is dispensing its device for free — to cities, first responders and drug-treatment programs. Such donations were also essential to the EpiPen’s business strategy." The exorbitant price doesn't matter so much when the drug is provided through institutional buyers such as the VA, but in poor areas where poor people are not covered by health insurance, it can mean life or death. "EpiPen happened, and everyone was like, ‘Wow, this is terrible, we shouldn’t allow this to happen,’ ” he said. “And we haven’t done anything about that, and it’s not clear what the solution is. Now, shocker, it’s happening again.”

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E-cigarette critics get research dollars from industry competitors (Kathy Hoekstra, MinnesotaWatchdog.org, 4-10-17) The nicotine patch "is one of four nicotine replacement therapies (NRT) approved by the FDA to help people quit smoking. Three others are prescription-only. Nicotrol NS is a nicotine nasal spray, while Chantix and Zyban are non-nicotine medications. The FDA, however, does not report success rates for these products. And the best Smokefree.gov can do is say they “increase your chances of quitting successfully.” FDA doesn't report success statistics on quitting smoking, and the research criticizing e-cigarettes is funded by pharmaceutical firms.
Why the U.S. Pays More Than Other Countries for Drugs (Jeanne Whalen, WSJ, 11-30-15) Norway, an oil producer with one of the world’s richest economies, is an expensive place to live. A Big Mac costs $5.65. A gallon of gasoline costs $6. But one thing is far cheaper than in the U.S.: prescription drugs. A vial of the cancer drug Rituxan cost Norway’s taxpayer-funded health system $1,527 in the third quarter of 2015, while the U.S. Medicare program paid $3,678. An injection of the asthma drug Xolair cost Norway $463, which was 46% less than Medicare paid for it. (KHN summary)
Sticker Shock Forces Thousands Of Cancer Patients To Skip Drugs, Skimp On Treatment (Liz Szabo, Kaiser Health News, 3-15-17) With new cancer drugs commonly priced at $100,000 a year or more, hundreds of thousands of cancer patients are delaying care, cutting their pills in half, or skipping drug treatment entirely. The jaw-dropping costs of new cancer medications have led to widespread criticism of the pharmaceutical industry, on Capitol Hill and beyond. Six of the 39 cancer drugs on the market in 2010 doubled or tripled in price by 2016; one quadrupled in price; one drug’s price increased eightfold.
$2.6 Billion to Develop a Drug? New Estimate Makes Questionable Assumptions (Aaron E. Carroll, The Upshot, NY Times, 11-18-14) The questionable assumptions: time costs ($1.2 billion), that drug is a "new molecular entity" developed in-house by pharmaceutical firm (few new drugs are), etc., plus which the costs are tax deductible (that is, covered by taxpayers). It "might be more accurate to say that it’s the cost to develop certain new molecular entities for which pharmaceutical companies did all of the research. That’s very few drugs, in the scheme of things."

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Wyden-Grassley Sovaldi Investigation Finds Revenue-Driven Pricing Strategy Behind $84,000 Hepatitis Drug (report of Senate Committee on Finance on hearings on the price of Sovaldi (sofosbuvir), a drug that cures most hepatitis C. Those hearings provide a case history in how a company prices a drug, says Norman Bauman (reporting in an email on part of a meeting of the NY chapter of AHCJ 2-15-17). Their pricing was summarized in a Powerpoint slide that was part of a committee report, on page 2 of the document The Pricing of Sovaldi (https://www.finance.senate.gov/imo/media/doc/3%20The%20Pricing%20of%20Sovaldi%20(Section%203).pdf), a PDF of chapter 3 from the government report. "Aside from payer access and physician demands, there are a number of softer issues that could affect Gilead's final pricing decision."
$2.6 Billion to Develop a Drug? New Estimate Makes Questionable Assumptions (Aaron E. Carroll, The Upshot, NY Times, 11-18-14) The questionable assumptions: time costs ($1.2 billion), that drug is a "new molecular entity" developed in-house by pharmaceutical firm (few new drugs are), etc., plus which the costs are tax deductible (that is, covered by taxpayers). It "might be more accurate to say that it’s the cost to develop certain new molecular entities for which pharmaceutical companies did all of the research. That’s very few drugs, in the scheme of things." Major findings include: Gilead justified Sovaldi’s high price point based on price-per-cure. Gilead set a high price for Sovaldi with an eye toward ensuring a future high price for Harvoni. Gilead underestimated the degree of access restrictions that it expected would result from its pricing decision. Despite significant access restrictions, Gilead refused to significantly lower the net price. The burdens on Medicare, Medicaid, and the Bureau of Prisons were significant. Competition entered the market, prices responded, but there are still significant concerns. Among headlines: 18-Month Investigation Reveals a Pricing and Marketing Strategy Designed to Maximize Revenue with Little Concern for Access or Affordability. Report Includes Landmark Release of Medicaid Data: In 2014, More than $1 Billion Spent by Medicaid Programs on Sovaldi Treated Less than 2.4 Percent of Enrolled Patients with Hepatitis C. Medicare Spent More on Gilead Hepatitis C Drugs in the First Half of 2015 than in All of 2014. "These hearings are the best case history of how a company prices a drug."
Medicare Weighing Changes to Doctor Drug Payments, Memo Shows ( Zachary Tracer and Sasha Damouni, Bloomberg Business, 2-9-16). Medicare has been criticized for giving doctors a financial incentive to administer drugs that are most expensive. A memo discussing how Medicare may change the way it reimburses for drugs was released prematurely. The memo suggests that Medicare contractors who process payments set up a system allowing the government to vary by geographic location how much it reimburses doctors for the drugs they administer.
Open Payments (Centers for Medicare & Medicaid Services's new open database of information about doctors' relationships with drug manufacturers and other health care businesses.

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GOP candidates stuck on drug prices (Paul Demko and Sarah Karlin, Politico, 12-1-15) Republican candidates blame skyrocketing drug costs on over-regulation and a few drug companies' "pure profiteering," but don't say that "Medicare should negotiate drug prices or that the government should limit drug maker’s profits, steps that might dramatically shake up the marketplace....they’re not even making modest suggestions to stem rising costs, focusing instead on hammering a few headline-making companies that they portray as bad actors. " Polls show high drug costs as "voters' No. 1 health concern," but the candidates are "caught in the box of Republican free market orthodoxy — and also, of long-standing relationships with the pharmaceutical industry, a lobbying powerhouse on the Hill."
Use Medicare’s Muscle to Lower Drug Prices (NY Times editorial, 9-21-15) One way to reduce drug costs for older patients on Medicare -- who often live on modest incomes, are in poor health, and take four or more prescription drugs -- is to reverse the policy set by the 2003 Medicare Modernization Act, which created Medicare’s prescription drug program. "At Republican insistence, that law barred the federal government from negotiating with drug manufacturers. ...Congressional Republicans would no doubt balk at having the federal government negotiate Medicare drug prices, but the public is clamoring for action, and it’s the right thing to do."
Why We Allow Big Pharma to Rip Us Off (Robert Reich, Moyers & Co., 10-6-14) "...while other nations set wholesale drug prices, the law prohibits the U.S. government from using its considerable bargaining power under Medicare and Medicaid to negotiate lower drug prices. This was part of the deal Big Pharma extracted for its support of the Affordable Care Act of 2010."
Generic Drug Prices Are Declining, But Many Consumers Aren’t Benefiting (Charles Ornstein, ProPublica, and Katie Thomas, New York Times, 8-8-17) Outcry has been building over the rising cost of brand-name medications, but the price of generic drugs has been moving in the opposite direction. The stock prices of generic manufacturers have tumbled, but many consumers aren’t paying less at the pharmacy counter.
Journalists learn about intricacies of prescription drug pricing (Liz Seegert, Covering Health, Association of Health Care Journalists, 2-27-17) Why are drug costs so high in the United States? This and other questions were addressed at a meeting of the New York chapter of AHCJ. What can justify a "$50,000 cancer drug that extended life for an average of 17 days"? A helpful summary of what several experts explained about how we in the U.S. end up with exploitative prices on some drugs. Among points made: (1) "It’s the doctor, not the patient, who decides what to prescribe. Our current system also rewards doctors for prescribing more expensive drugs. Why prescribe the generic when you can make more money prescribing the brand? (2) Doctors are making those decisions, typically, with little information about cost . Now with more patients in high-deductible plans with a coinsurance model, there’s sticker shock and people are asking questions. (3) Nobody knows if we are spending the right amount on drugs, said Peter Bach, MD, director of the Memorial Sloan Kettering’s Center for Health Policy and Outcome. Moreover, we do not know if we are spending it on the right drugs, either.
Healthcare expert for sale (Trudy Lieberman, CJR, 12-6-12) Revolving door between government jobs and lobbying for industry--is it any wonder Medicare is not allowed to negotiate lower drug prices with pharmaceutical industry?
In Cancer Care, Cost Matters (Peter B. Bach, Leonard B. Saltz, and Robert E. Wittes, OpEd, NY Times, 10-14-12). "At Memorial Sloan-Kettering Cancer Center, we recently made a decision that should have been a no-brainer: we are not going to give a phenomenally expensive new cancer drug to our patients. The reasons are simple: The drug, Zaltrap, has proved to be no better than a similar medicine we already have for advanced colorectal cancer, while its price — at $11,063 on average for a month of treatment — is more than twice as high." "This political climate also helps explain why the Affordable Care Act precludes Medicare from changing its coverage or payment amounts based on cost comparisons like the one we have outlined, even when two drugs appear to work equally well. And it is probably why neither presidential candidate has addressed runaway cancer drug prices. But if no one else will act, leading cancer centers and other research hospitals should."

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Pain: A Political History by Keith Wailoo. Read what Rebecca Davis O' Brien wrote about it in this Atlantic review (8-18-14): "The pain of the fetus and the pain of the taxpayer mattered most; the addict’s pain was suspect, the housewife's pain imagined." "The result is gaps in treatment, a glut of pills, and a landscape of addiction—the inevitable consequence of our "unquenchable appetite for relief."
The Cost of Cancer Drugs (Leslie Stahl, 60 Minutes, CBS, 10-5-14--you can listen or read transcript.) Dr. Leonard Saltz: "We're in a situation where a cancer diagnosis is one of the leading causes of personal bankruptcy." "... we as a society have been unwilling to discuss this topic and, as a result, the only people that are setting the line are the people that are selling the drugs." Dr. Peter Bach: "Medicare has to pay exactly what the drug company charges. Whatever that number is." "The challenge, Dr. Saltz at Sloan Kettering says, is knowing where to draw the line between how long a drug extends life and how much it costs." "High cancer drug prices are harming patients because either you come up with the money, or you die." Gleevec as a life-saving drug that makes patients a slave to it and its high cost. Dr. Leonard Saltz: " I don't know where that line is, but we as a society have been unwilling to discuss this topic and, as a result, the only people that are setting the line are the people that are selling the drugs."
Top Prescription Plan to Offer $1 Alternative to $750 Pill (Andrew Pollack, NY Times, Business Day, 12-1-15) "Turing Pharmaceuticals’ effort to charge $750 a pill for a 62-year-old drug is facing a new headwind: The nation’s largest prescription drug manager plans to back an alternative that costs only $1 per pill....Daraprim, known generically as pyrimethamine, is the treatment of choice for toxoplasmosis, a parasitic infection that can be serious for babies and people with AIDS. While there is no patent protection on such an old compound, there are no generic versions approved for sale in the United States, in part because the market is small."
Express Scripts Offers Low-Cost Alternative to Turing Drug (AP, NY Times, 12-1-15) The nation's biggest pharmacy benefits manager is muscling back into the debate over soaring drug costs by promoting a less-expensive alternative to a life-saving medicine with a list price of $750 per pill. Other drugmakers have also recently purchased the rights to old, cheap medicines that are the only treatment for serious diseases and then hiked prices. The practice has triggered government investigations, politicians' proposals to fight "price gouging," and heavy media scrutiny. Express Scripts, which manages prescription drug benefits for about 85 million people, has long been a vocal critic of rising drug prices.

How High Drug Prices Weigh on the Sickest Americans (Drew Altman, Think Tank blog, WSJ, 12-28-15) "The more drugs people take and the sicker they are, the more likely they are to experience problems paying for prescription medicines–or to forego them altogether because of cost....The pattern holds for seniors on Medicare as well. Twenty percent of seniors taking prescription medicine report difficulty paying for their drugs. Among seniors taking four or more medications, the share rises to 29%.
Lawmakers, Candidates Target High Drug Prices (Stephanie Armour, WSJ, 11-15-15) Lawmakers and the Obama administration are ratcheting up efforts to target pharmaceutical companies over high-priced drugs, a sign that legislators are trying to bridge partisan differences to tackle a key driver of rising health care costs.
Prescription Drugs’ Sizable Share of Health Spending (Drew Altman, Think Tank, WSJ, 12-13-15) "As big a problem as rising drug prices have been for consumers and payers, drug spending represents only 10% of national spending on health. Yet ... drug spending represents almost double that share of health spending (19%) in employer health insurance plans. That is not too much less than the 23% employers spend on inpatient hospital care.
Why Higher Drug Costs Are Consumers’ Biggest Cost Worry (Drew Altman, WSJ Think Tank blog, 9-8-15). We "asked which health costs people with health coverage find to be the greatest burden. As the chart shows, deductibles led a closely bunched list, followed by premium payments, drug costs and doctor visits. Deductibles have been rising steadily each year, especially for people who work for smaller employers, as insurance has gradually been moving from more to less comprehensive, with more 'skin in the game' for consumers."...Seventy-six percent of the public blames drug companies for high drug prices – with just 10% blaming insurers. The public ranks the pharmaceutical industry right between the oil industry and insurance companies in overall favorability."

Working to Lower Drug Costs by Challenging Questionable Patents (Gretchen Morgenson, Fair Gae, NY Times, 11-27-15) J. Kyle Bass made a fortune in the financial crisis when his hedge fund, Hayman Capital Management, bet big against subprime mortgages. Now Mr. Bass is wagering against pharmaceutical companies that he says exploit the patent system, keeping drug prices — and their profits — in the stratosphere. He has a formidable colleague in the effort: Erich Spangenberg, a man who became reviled in Silicon Valley for bringing lawsuits against technology companies that he contended had infringed on a patent. By mid-November, the firm had filed 33 requests for patent reviews, targeting 13 drugs from a dozen companies

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Pfizer’s Long War on Taxation (Andrew Ross Sorkin, Dealbook, NY Times, 11-30-15) "Long before Pfizer conceived of merging with Allergan in a $150 billion deal to rid itself of what its chief executive called an “an uncompetitive tax rate” in the United States, the company was deploying various tax avoidance strategies dating back to at least 1976....Pfizer has received at least $50 million in federal subsidies over nearly the last 15 years, according to the Corporate Research Project, a nonprofit that tracks corporate subsidies. And, still, it wants to leave the United States and move its headquarters to Ireland....The only way to end the inversion craze, or whatever tax avoidance plan comes next, is to comprehensively reform the corporate tax code."
Doctors Often Receive Payments From Drug Companies (Neal Conan, Talk of the Nation, NPR, 9-13-11) A Pro Publica investigation shows that many doctors are being paid by the same drug companies whose medicines they prescribe. By 2013, all doctors must report any payments from pharmaceutical companies to the federal government, and those records will be available to the public.
Dollars for Doctors: How Industry Money Reaches Physicians (a major Pro Publica investigative series, by by Eric Sagara, Charles Ornstein, Tracy Weber, Ryann Grochowski Jones and Jeremy B. Merrill, 9-24-14) In recent years, drug companies have started releasing details of the payments they make to doctors and other health professionals for promotional talks, research and consulting. As of 2014, 17 companies published the information, most because of legal settlements. Several pieces appeared in this series and are still online. See also We’ve Updated Dollars for Docs. Here’s What’s New. (Ryann Grochowski Jones, Mike Tigas and Charles Ornstein, Pro Publica, 12-13-16) "Companies made about $2 billion in general payments to 618,000 physicians each year, in addition to another $600 million a year to teaching hospitals. General payments cover promotional speaking, consulting, meals, travel, gifts and royalties, but not research. The specific doctors who received payments changed quite a bit from 2014 to 2015; a quarter of doctors who received a payment in 2015 didn’t receive one in 2014, and vice versa. The 10 drugs for which companies spent the most in payments to physicians in 2015 (teaching hospital payments not included) were blood thinner Xarelto ($28.4 million), rheumatoid arthritis drug Humira ($24.9 million), diabetes drug Invokana ($20.9 million), hepatitis C drug Viekira ($19.2 million), blood thinner Eliquis ($18.8 million), diabetes drug Bydureon ($18.5 million), testosterone drug Androgel ($15.3 million), thyroid drug Synthroid ($14.7 million), synthetic hormone Lupron ($14.3 million) and diabetes drug Victoza ($11.9 million)."
MIA In The War On Cancer: Where Are The Low-Cost Treatments? (Jake Bernstein, Pro Publica and The Daily Beast, 4-23-14) Big Pharma’s focus on blockbuster cancer drugs squeezes out research into potential treatments that are more affordable. Says one researcher: “What is scientific and sexy is driven by what can be monetized....Animal studies, in vitro experiments and analysis of patient outcomes suggest that aspirin might help inhibit breast cancer from spreading. Yet even her peers on scientific advisory boards appear uninterested, she says. "For some reason a drug that could be patented would get a randomized trial, but aspirin, which has amazing properties, goes unexplored because it's 99 cents at CVS," says Michelle Holmes.
Pay to Prescribe? Two Dozen Doctors Named in Novartis Kickback Case (Theodoric Meyer, ProPublica, 5-3-13)
Dollars for Docs How Industry Dollars Reach Your Doctors (Eric Sagara, Charles Ornstein, Tracy Weber, Ryann Grochowski Jones and Jeremy B. Merrill, for ProPublica, Updated 3-3-14). See if Your Health Professional Has Received Drug Company Money.
As Full Disclosure Nears, Doctors’ Pay for Drug Talks Plummets (Charles Ornstein, Eric Sagara and Ryann Grochowski Jones, ProPublica, 3-3-14) As transparency increases and blockbuster drugs lose patent protection, drug companies have dramatically scaled back payments to doctors for promotional talks. This fall, all drug and medical device companies will be required to report payments to doctors.
Medicare Drugs Turn Doctors into Millionaires (Walter Russell Mead & Staff, The American Interest, 4-10-14)
Prescribing Under the Influence (E. Haavi Morreim, Markkula Center of Applied Ethics, Santa Clara University)

Why Are Drug Costs So High in the United States? (Roxanne Nelson, Medscape Multispecialty, 11-19-14--registration required).
Patent-Protected Oral Cancer Drugs Are Drivers of High Costs (Roxanne Nelson, Medscape Multispecialty, 10-13-14)
'Parity' Laws for Costly Oral Cancer Drugs Not a Solution (Nick Mulcahy, Medscape Specialty, 10-2-14)
Cancer Drug Costs: Oncologists Must Be 'Part of the Solution' (Zosia Chustecka, Medscape Multispecialty, 9-6-13)
Price of 'Phenomenally Expensive' Cancer Drug Slashed (Nick Mulcahy, Medscape Multispecialty, 11-9-12)

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Administration Is Seeking Ways to Keep Prescription Drugs Affordable (Robert Pear, Politics, NY Times, 11-20-15) News about soaring drug costs, such as the decision by Turing Pharmaceuticals to raise the price of a 62-year-old treatment for parasitic infection to $750 a pill from $13.50 overnight, has focused public attention and anger on pharmaceutical costs. Researchers are developing remarkable cures, but they might be out of reach for people who need them most. Opinion polls show that a majority of Americans of both political parties support government action to hold down drug costs. Some proposals have languished in Washington for years, such as allowing the government to negotiate with drug companies to obtain lower prices on medications for Medicare. Others urged reconfiguring health insurance policies so they pay drugmakers more for medicines that are highly effective. Patients might not have any co-payments for “the highest-value drugs,” he suggested, but would face higher co-payments for drugs with fewer proven benefits. "No one expressed the views of the many Republicans in Congress, who oppose any increase in the federal role in setting, regulating or negotiating prices." Federal officials could take administrative actions to help slow the growth of drug spending in federal health programs.
• What's the value of a drug? Norman Bauman: "Suppose you're dying of cancer, and a drug company has a drug which will save your life. How much is your life worth? That's the value of the drug. The company realizes that there's a supply-demand curve. If they price the drug at $1,000, they can sell 1,000 doses, save 1,000 lives, and make $1
million. If they price the drug at $100,000, they might only sell 100 doses, and save only 100 lives, but they make $10 million.
Big Pharma Quietly Enlists Leading Professors to Justify $1,000-Per-Day Drugs (Annie Waldman, ProPublica, 2-23-17) "As it readies for battle with President Trump over drug prices, the pharmaceutical industry is deploying economists and health care experts from the nation’s top universities. In scholarly articles, blogs and conferences, they lend their prestige to the lobbying blitz, without always disclosing their corporate ties."
Customers Sue UnitedHealth Over Prescription Drug Co-Pay Costs (Reuters, 10-5-16) UnitedHealth Group Inc has been sued by three customers who accused the largest U.S. health insurer of charging co-payments for prescription drugs that were higher than their actual cost and pocketing the difference.

Liz Fowler, Top Obama Health Care Aide, To Lobby For Johnson & Johnson (Christina Wilkie, Huff Post, 12-5-12)

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Medicare Drug Planners Now Lobbyists, With Billions at Stake (Olga Pierce, ProPublica, 10-20-09) The Guardian follows the saga of Liz Fowler, healthcare lobbyist extraordinaire
AZT's Inhuman Cost (OpEd, NY Times, 8-28-89) "Drug companies deserve high profits on new drugs to encourage invention and risk-taking. What makes the cost of AZT hard to swallow is that all the invention and much of the risk was undertaken by the Federal Government....In 1984, Samuel Broder of the National Cancer Institute encouraged companies to submit possible anti-AIDS drugs for screening by a special test developed in his laboratory. Burroughs Wellcome sent in AZT, a compound it happened to have on its shelves after studying it for another purpose."
Hospitals probed on use of drug discounts (Ames Alexander and Karen Garloch, Charlotte Observer, 9-29-12). U.S. Sen. Chuck Grassley, Congress’ leading critic of nonprofit abuses, has asked three of North Carolina’s largest hospitals to share information about their use of a rapidly growing discount drug program, saying they don’t appear to be passing along the “massive” savings to patients.
After Merger, Two Competing Drugs and Billion-Dollar Questions (Gretchen Morgenson, Fair Game, NY Times, 11-13-15) The investing world is riddled with conflicts of interest that can surprise even the most sophisticated investor. Learning that lesson the hard way are holders of an instrument issued in 2011 when Sanofi, the giant French pharmaceutical company, took over Genzyme, a biotech concern based in Cambridge, Mass.

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We are what we eat? Healthier eating—Part 2 of 2

More stories on healthful eating (and tell me if I've missed anything!)


Click HERE for Part 1, We are what we eat?


Slow Food Quickens the Pace (Mark Bittman, Opinionator, NY Times, 3-26-13). See also Slow Food USA (supporting good, clean, and fair food), which Bittman calls "probably the only international organization that integrates concerns about the environment, tradition, labor, health, animal welfare … along with real cooking, taste and pleasure."

 

The Scary Truth About Chicken (Rachael Moeller Gorman, Men's Health, 12-10-14) Advice? Go organic. Look on the packaging for "Animal Welfare Approved" or "Free Range." Stop rinsing your chicken. Don't consume "medium-rare" chicken. Cook poultry to an internal temperature of at least 165°F—the lowest threshold for killing harmful bacteria.

 Julia Child Was Wrong: Don't Wash Your Raw Chicken, Folks (Maria Godoy, NPR) Washing the chicken increases the chances that you'll spread the foodborne pathogens that are almost certainly on your bird all over the rest of your kitchen too. 
How Not to Die: Discover the Foods Scientifically Proven to Prevent and Reverse Disease by Michael Greger and Gene Stone. Very persuasive on how your diet can affect your health. Basically, eat plant-based foods and not much meat -- and chicken (because processing is so filthy) is particularly bad for you. You can get much of the same information at NutritionFacts.org, which hosts many videos (which make you race to buy things like barberries).


Reviving An Heirloom Corn That Packs More Flavor And Nutrition (Allison Aubrey interviews chef Dan Barber of the famed Blue Hill restaurant--this makes you want to grow heirloom corn, which packs more protein, less sugar). Barber says better flavor goes hand in hand with better nutrition; much of our food is bred to be easy to grow and have long shelf-life -- not for wholesomeness and flavor. Sources of heirloom produce: Seed Savers Exchange, High Mowing Organic Seeds , and Harry Here Farm

 

 Curb Those Cravings (blog)
How Oreos Work Like Cocaine (James Hamblin, The Atlantic, 10-17-13) Oreo cookies may not be more addictive than psychoactive drugs, but the neuroscience of junk food addiction is worth reading about before you go down that aisle in the supermarket.

Non-GMO Shopping Guide (for if you want to avoid genetically modified food)

New USDA Dietary Guidelines Validated by UCSF Sugar Research (Jyoti Madhusoodanan, UCSF, 1-13-16)

New USDA Dietary Guidelines

Dr. Mark Hyman On Why Sugar Is A Recreational Drug (MindBodyGreen) Low fat diets started us down this path to obesity.
Sugar addiction much harder to address than salt (David Burrows, Food Navigator.com, 12-1-15)

The Food Chain (BBC, listen to podcasts) The economics, science and culture of what we eat. What does it take to put food on your plate?

Foods That Help Keep the Pounds Off as You Age (Amy Norton, HealthDay, 4-23-15) Keep that glycemic load in check.

How Gut Bacteria Help Make Us Fat and Thin (Claudia Wallis, Scientific American, 6-1-14) Intestinal bacteria may help determine whether we are lean or obese
Why do people put on differing amounts of weight? (BBC, 1-26-16) "By comparing the gut microbes of hundreds of study volunteers with their blood sugar responses, Segal and Elinav have been able discover that our microbes might be the key to why our blood sugar spikes with different foods are so individual. The chemicals they produce, it seems, control our bodies to this extent. What is particularly exciting about that fact is that - unlike our gene - we can actually change our microbes." See also, also from BBC: Why do some people put on weight and not others – and can we change it?

The Health and Safety of Raw Milk (Kojo Nnandi show, 1-20-16) "...many from the Washington area go out of their way to get their hands on raw milk. Its proponents say it tastes better and has additional health benefits despite the fact that it is illegal to sell in many states and strongly warned against by the Centers for Disease Control and Prevention. We discuss the risks and legal status of raw milk. That's a follow-up to the earlier The Raw Milk Wars (Kojo Nnandi, 7-27-11, transcript). "Recent raids by the FDA have some communities up in arms about whether raw milk is safe to consume. But supporters of unpasteurized milk are rallying a movement that would make it easier to obtain. Kojo explores where food safety, the law and milk collide."

Are Happy Gut Bacteria Key to Weight Loss? (Moises Velasquez-Manoff, Mother Jones, 4-22-13). Imbalances in the microbial community in your intestines may lead to metabolic syndrome, obesity, and diabetes. What does science say about how to reset our bodies? (Explains difference between prebiotics and probiotics.) See also Should You Take a Probiotic? (Maddie Oatman, Mother Jones). The popular supplements might be more about marketing than beneficial microbes.

Why no food, not even kale, is ‘healthy’ (Michael Ruhlman, News-Observer, 1-22-16) Food is not healthy; it is nutritious. Kale is packed with nutrients your body needs but if that was all you ate, you would get sick. Pay attention to the words used and what they mean. Refined flour, for example, is actually flour stripped of nutrients. If it's enriched, it's partly to put back in what's been removed. And so on.

How The Food Industry Manipulates Taste Buds With 'Salt Sugar Fat' (Nell Boescheenstein, The Salt, National Public Radio, 2-26-13). "In his new book, Salt Sugar Fat: How the Food Giants Hooked Us, Michael Moss goes inside the world of processed and packaged foods. "Dealing Coke to customers called "heavy users." Selling to teens in an attempt to hook them for life. Scientifically tweaking ratios of salt, sugar and fat to optimize consumer bliss."

What’s Up with Bone Broth?

Fig & Olive, Food Safety And Risks Of “Fresh” Food (Kojo Nnandi show, 1-6-16) A fall salmonella outbreak at D.C’s Fig & Olive restaurant — and foodborne illness outbreaks at Chipotle nationwide — have shone a spotlight on food safety issues at both the high and low ends of the menu price spectrum. Now, a recent investigation by the Washington City Paper reveals that pre-made ingredients from an off-site commissary not only provided menu staples to Fig & Olive, but also played a role in the restaurant’s food safety. We learn more about the Fig & Olive investigation, and explore the role commissaries and off-site food preparers contribute to food safety — and to expectations of what goes on our plates.

Smoke Points of Various Fats (Michael Chu, Cooking for Engineers). It is believed that fats that have gone past their smoke points contain a large quantity of free radicals which contribute to risk of cancer. A chart listing the oils that can be safely used at higher temperatures. (Thanks to Joan Young Writes for this and other links.)

Food Technology And How It Shaped The Western Palate (interesting Kojo Nnandi radio interview with Gabriella Petrick)

For Three Years, Every Bite Organic (Tara Parker-Pope, NYT, reports what Dr. Alan Greene learned from his three-year experiment)

The 11 Best Foods You Aren't Eating (Tara Parker-Pope, NY Times 6-30-08)

Hypertension: Tips for Eating Out in Various Cuisines (Southwestern Medical Center)

The Intolerant Gourmet: Glorious Food without Gluten and Lactose by Barbara Kafka

Is there a link between chocolate and depression? Joanne Silberner, NPR, 4-26-10, on the connection between depression and chocolate. Chocolate-lovers, check out Joanne's favorite website, Chocolate and Zucchini (especially the forums).

Meatless Monday (recipes and information to help prevent heart disease, stroke, diabetes, and cancer)

Michael Pollan Offers 64 Ways to Eat Food (Tara Parker-Pope, NYTimes, 1-8-2010)

Please, don't pass the salt! (blog)

Recipes for Health (Martha Rose Shulman's articles, recipes, NY Times)

The Anti-Inflammation Diet and Recipe Book (2nd edition) by Jessica K. Black. Subtitle: Protect Yourself and Your Family from Heart Disease, Arthritis, Diabetes, Allergies, —and More

The Autoimmune Solution: Prevent and Reverse the Full Spectrum of Inflammatory Symptoms and Diseases by Amy Myers (full of recipes)

Reduce Your Cancer Risk (recipes from the AICR Test Kitchen, which also produced a fabulous cookbook: The New American Plate Cookbook

Snake Oil? Scientific evidence for popular health supplements (great graph showing how much scientific evidence there is to support various supplements)

Stay Young at Heart (Cooking the Heart-Healthy way, good recipes from the National Heart, Lung, and Blood Institute)

Best Diets (U.S. News Best Diet Rankings, 2014)

Vegan Before Dinnertime (Mark Bittman on carnivores eating more fruits and vegetables and fewer processed foods)

A Year of Produce (Jane Pellicciotto)

Stuffed: An Insider's Look at Who's (Really) Making America Fat (Hank Cardello with Doug Garr)

Salt Sugar Fat: How the Food Giants Hooked Us (Michael Moss)

Pandora's Lunchbox: How Processed Food Took Over the American Meal (Melanie Warner)  Read More 

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We are what we eat? Read this, get healthy, feel better! (Part 1 of 2)

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Sharing life stories with your family

by Pat McNees
"The single most important thing you can do for your family may be the simplest of all: develop a strong family narrative," writes Bruce Feiler in The Stories That Bind Us (NY Times, 3-15-13). He got the idea from Marshall Duke, a sociologist at Emory University, who was asked "to help explore myth and ritual in American families." Duke's wife, Sara, a psychologist who works with children with learning disabilities, said "“The ones who know a lot about their families tend to do better when they face challenges." To test that hypothesis he and colleague Robyn Fivush developed a measure they call the "Do You Know" scale, which asks children to answer twenty questions  Read More 
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Organizations serious about improving U.S. health care

Here are links to organizations that may be helpful as you seek better knowledge of health care options, practices, insurance, and policy. Some are watchdog organizations, some provide reliable information and/or support, some provide systematic review of health care research results, some lobby for effective health policy (e.g., protecting the integrity of the medical review process), and a few publish "scorecards" or the equivalent for medical practitioners or procedures.
Alliance for Health Care Reform provides tools for  Read More 
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Making health care prices more transparent

This blog post duplicated somewhat an earlier post, so I have combined them. You can find them here:

Taking the mystery out of health care prices


Pricing transparency: Doctors, patients, and insurance companies on the same page
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Decoding health care prices: The need for drug price transparency

by Pat McNees (updated 1-14-19; original post 10-10-15 was 'Taking the mystery out of health care prices')
Can we lift the veil on health care prices? Are we moving toward pricing transparency (getting doctors, patients, service providers, and insurance companies on the same page)? When our doctors send us for tests and procedures, must we be like the dinner guest in a fancy restaurant who is handed the menu without prices? How many of us know up front what a colonoscopy costs -- or how much charges for any procedure vary from one clinic or doctor to another? What does an MRI cost? Are prices uniform or predictable?

Until recently, it has been difficult to know in advance what a particular health problem or procedure will end up costing us, as patients. Or how much health care costs vary between practices, cities, and states. Some things are changing, but you have to do your homework to be a smart health care consumer. The following articles shed light on a changing system and improvements in which information consumers have access to.
As Hospitals Post Sticker Prices Online, Most Patients Will Remain Befuddled (Julie Appleby and Barbara Feder Ostrov, KHN, 1-4-19) "As of Jan. 1, in the name of transparency, the Trump administration required that all hospitals post their list prices online. But what is popping up on medical center websites is a dog’s breakfast of medical codes, abbreviations and dollar signs — in little discernible order — that may initially serve to confuse more than illuminate....That’s because the price lists displayed this week, called chargemasters, are massive compendiums of the prices set by each hospital for every service or drug a patient might encounter. To figure out what, for example, a trip to the emergency room might cost, a patient would have to locate and piece together the price for each component of their visit — the particular blood tests, the particular medicines dispensed, the facility fee and the physician’s charge, and more....And there’s this: Other than the uninsured and people who are out-of-network, few actually pay full charges....Even when consumers do locate the lists, they might be stymied by seemingly incomprehensible abbreviations....Nevertheless, some experts say that merely making the charges public shines a light on the often very high — and widely varying — prices set by facilities....Billing expert George Nation, a finance professor at Lehigh University, said that rather than posting chargemaster lists, hospitals should be required to provide the average prices they accept from insurers. Hospitals generally would oppose that, saying negotiated rates are a trade secret."
In Health Care, A Good Price (Or Any Price) Is Hard To Find (Jenny Gold, Reporter's Notebook, KHN, 9-14-17)A recent story about why Northern California is the most expensive place in the country to have a baby began as a tip from an obstetrician. Dr. Sarah Azad told me that insurers were paying her just a third of what they pay doctors employed by large hospital systems in her town of Mountain View, Calif. "As it turns out, the vast majority of contracts between doctors or hospitals and insurance companies are subject to a gag clause, which prohibits either party from disclosing negotiated rates. That means it’s almost impossible for consumers, researchers or journalists to find actual, accurate numbers, despite the fact that cost differentials among doctors can be so stark.... I have long understood that the lack of price transparency is one reason our system stays so expensive. It was a surprise, though, to find out that this opacity is cemented by legally binding contracts....It’s no accident that data on physician costs are so hard to find. Its inaccessibility allows hospitals to keep raising their prices. It’s simply not in their interest for the public to know how much they’re charging. And insurers don’t want other doctors or hospitals to see the high prices they’ve agreed to pay, for fear they would demand the same....In the end, all of us — through our insurance premiums and our taxes — pay a price for non-transparency."
The Risky Game One Doctor Plays To Help Patients Find Affordable Insulin (Martha Bebinger, Commonhealth, WBUR, 4-19-18) "There are several websites that list the cash prices for insulin and hundreds of other drugs. But most of [Dr. Hayward] Zwerling's patients have health insurance, and each health plan varies. When Zwerling meets with patients, he can't tell what the copay will be for each drug. He doesn't know if the patient has met their deductible. Those on Medicare may be in the so-called doughnut hole. The brands of insulin Zwerling prescribes are covered by some plans, with varying costs for members, and not others. And the negotiated price for each drug may be different from insurer to insurer and pharmacy to pharmacy....There are some remedies in the works. CVS Health has just rolled out a program that lets pharmacists show patients the cost of a prescription before they fill it, as well as cheaper options....Massachusetts is, in theory, ahead of many states because doctors, hospitals and insurers are required to help patients find the price of services. But that requirement does not apply to pharmacies or prescriptions, and there's no move to amend the law. That's disappointing to some consumer advocates."

Truecostofhealthcare.org (David Belk MD's site is a "treasure trove of information and analysis for journalists and highly regarded by academics as well" (Randy Barrett, AHCJ, Spring 2019) Hover over the heading "healthcare" and dig deep into material under subheads: Medications, Pharmaceutical Industry, Billing, Medicare, Hospitals, etc.
Clear Health Costs: Cracking the Code Coverage. In April 2017, New Orleans PriceCheck, reporting on and crowdsourcing health prices with partners WVUE FOX 8 Live and NOLA.com/The Times-Picayune, began saving its readers and listeners lots of money by comparing health care prices publicly. Says Jeanne Pinder, "We use shoe-leather journalism, data journalism and crowdsourcing to reveal the mysteries of pricing. The project is on fire, with hundreds of people sharing their stories, commenting, and sending in their EOB's [explanations of benefits]. The hospitals are extremely upset with us, and we have been able to save people hundreds of dollars Read More 

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End-of-life planning and decision-making Have "The Conversation"

by Pat McNees
Resources for when terminal or life-threatening illness requires decisions about what individuals, families, and professional caregivers should do. Let's start with
Five Wishes (Aging with Dignity -- changing the way we talk about and plan for care at the end of life). Five Wishes lets your family and doctors know:
---Who you want to make health care decisions for you when you can't make them.
---The kind of medical treatment you want or don't want.
---How comfortable you want to be.
---How you want people to treat you.
---What you want your loved ones to know. Read More 
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Ratings for hospitals, doctors, surgeons, home health agencies, nursing homes

Updated 5-24-18. by Pat McNees
I've listed here various "scorecards" and ratings for different aspects of the U.S. health care system, because they're a step toward helping consumers figure out how to choose healthcare providers, services, and institutions. The problem is, different groups choose different ways of evaluating doctors and hospitals and to the extent that some use some

 

 punishment measures to protect consumers (measures which might work against ratings for doctors or hospitals that try to provide more and more sophisticated services, for example), and that some measures seem to conflict, this must all be taken with a grain of salt. Also, some ranking systems don't rank all hospitals in a system-- rank only those that fit criteria that group (e.g., Leapfrog) chose to rank. Be sure to take a look at the bigger picture because the ranking organization may not be. There is also at least one paradox in ranking systems: Sometimes the better academic hospitals get worse rankings (in a system such as Leapfrog) because they're better at reporting adverse events, they tend to treat more difficult cases, and they often treat patients of lower socioeconomic status, whose health may be worse to begin with.
Ratings are an important step toward making health care more transparent for consumers. Scroll to the bottom for some fairly recent criticisms and Norman Bauman's analysis of problems with various rating systems.

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Hospital Compare (Medicare)
---CMS unveils updated hospital star ratings formula (Maria Castellucci , Modern Healthcare, 12-21-17). An explanation for after the methodology changed, so that instead of 83 five-star hospitals using CMS data there are now 337.
---Kevin MD writes: "While the federal government has steadily expanded the number of publicly available measures on its Hospital Compare website, it still falls short of what many patients, payers, and providers would like. This is particularly true in the realm of outcomes such as infections and mortality rates, and in provider-level ratings." (2015)
---What journalists should know about hospital ratings (Liz Seegert, Covering Health, Association of Health Care Journalists, 6-24-16) "Journalists should take hospital ratings with a healthy dose of skepticism, according to experts at a recent AHCJ New York chapter event. Simply looking at an institution’s overall rating is just the start. Reporting that without understanding what’s being rated and how 'success' is measured does a disservice to your audience."
---Only 251 U.S. hospitals receive 5-star rating on patient satisfaction (Sabriya Rice, Modern Healthcare, 4-16-15)
---CMS gives 215 hospitals 'five stars' for patient experience. See how yours fared on our map. (Advisory Board, 8-15-17) CMS recently updated its Hospital Compare website with new Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) summary star ratings for 3,504 hospitals.

HospitalInspections.org (website/database run by the Association of Health Care Journalists, AHCJ) makes federal hospital inspection reports easier to access, search and analyze. Includes details about deficiencies cited during complaint inspections at acute-care, critical access, or psychiatric hospitals throughout the United States since Jan. 1, 2011. Does not include results of routine inspections or those of long-term care hospitals.

     See A Q&A with CMS: Getting up to speed on inspection reports, in which the Centers for Medicare and Medicaid Services answers questions about the inspection process and the 2567 forms used to complete the inspections. Other sidebars include How to read inspection reports, Sample inspection report, Points to keep in mind about this data, States that put hospital inspection reports online.
The Leapfrog Group The Leapfrog Group (a nonprofit) promotes improvements in the safety of health care by giving consumers data to make more informed hospital choices. It compares hospitals using data from survey responses. Search by location to compare hospitals against criteria such as inpatient management, maternity care, high-risk surgeries, etc. Says one health care journalist, "One caveat: If your hospital is good at finding and reporting complications, they look bad, even if they are doing everything right."

Quality Check. Search and compare hospitals that have received a gold seal of approval by The Joint Commission, which oversees the accreditation and certification of nearly 21,000 healthcare organizations and programs in the U.S. You can see accreditation history for each qualifying program, and quality reports are available to download. (Highly rated by HealthWeb Navigator.)


Room for Better Safety at Surgery Centers, Survey Finds (Joyce Frieden, MedPage Today, 10-22-19) Ambulatory surgery centers (ASCs) and hospital outpatient departments (HOPDs) aren't doing all they could to ensure patient safety, according to a report from the Leapfrog Group--which finds gaps in board certification, hand hygiene monitoring.


Medicare Compare search pages
---Dialysis Compare
---Home Health Compare
---Hospital Compare
---Inpatient Rehabilitation Facility Compare
---Long-Term Care Hospital Compare
---Medicare Plan Finder
---Nursing Home Compare
---Physician Compare

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Medicare Prepares To Go Forward With New Hospital Quality Ratings (Jordan Rau, Kaiser Health News, 7-22-16) "Despite objections from Congress and the hospital industry, the Obama administration said it will soon publish star ratings summing up the quality of 3,662 hospitals. Nearly half will be rated as average, and hospitals that serve the poor will not score as well overall as will other hospitals...The government says the ratings, which will award between one and five stars to each hospital, will be more useful to consumers than its current mishmash of more than 100 individual metrics."

HospitalFinances.org (AHCJ, Bringing transparency to nonprofit hospital finances). See New site gives access to nonprofit hospital financial data (Len Bruzzese, AHCJ, 5-23-18)

Surgeon Scorecard. ProPublica's informal website shows death and complication rates in eight types of surgery, showing results on all surgeons, good or bad. with 20 or more surgeries in a category. See USA Today story 'Surgeon scorecard' measures docs by complications.But also, see Kevin MD's criticism of the site The ProPublica Surgeon Scorecard: When journalists become scientists (10-9-15) and the Rand Corp.'s A Methodological Critique of the ProPublica Surgeon Scorecard Writes Kevin MD: "With the Surgeon Scorecard, ProPublica acted as judge and jury; they defined the measure, deemed it valid, and declared which surgeons were low quality....While ProPublica says its work was “guided by experts,” that review was informal."

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Globe1234.info Paul Burke summarizes info available elsewhere on ratings of Doctors and of hospitals, but that's just a start. He has summarized information on procedures, things to eat, and so on--spend time exploring this helpful site. Site slow-loading. These are old links, however.

Paul Burke also compared methods for the Checkbook and ProPublica rating systems (Globe1234).

Globe1234.com provides all kinds of data a patient might/should want to have (including . For example:
---Hospital Quality, and Incentives at http://www.globe1234.info/medicare/quality
---Doctors' Quality and Incentives at http://www.globe1234.info/medicare/doctors
"This site does not recommend doctors, hospitals or anyone. It summarizes information, mostly from Medicare, so you can decide."

Data on Hospitals (all the data you are likely to find, gathered by Paul Burke) For example, look up bond disclosures on EMMA (Electronic Municipal Market Access), which has PDF copies of operating expense and audited financial statements for each hospital.

SurgeonRatings.org (Consumers' Checkbook's new website lists surgeons Checkbook has identified as having better–than–average outcomes -- covers 15 types of surgery, but only lists surgeons significantly above average on 90-day mortality, readmissions, and same-stay complications.

Open Payments Data (OpenPaymentsData.CMS.gov) Do you wonder if your doctor is getting a commission or other benefit for recommending expensive drugs or devices? Find out. When a drug or device company gives a physician or a teaching hospital- stocks, money for research, gifts, speaking fees, meals and other payments, The Open Payments Program is required to collect information about those payments and share it with the public. Read ProPublica's report Drug and Device Makers Find Receptive Audience at For-profit, Southern Hospitals (Charles Ornstein and Ryann Grochowski Jones, Pro Publica, 6-29-16) A ProPublica analysis shows that where a hospital is located and who owns it make a big difference in what share of its doctors take industry payments. This is part of an ongoing investigation, Dollars for Doctors: How Industry Money Reaches Physicians (ProPublica tracking the financial ties between doctors and medical companies). See also Doctors received $6.5 billion from drug and device companies in 2015 (Carolyn Y. Johnson, WaPo, 6-30-16)

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Buying drugs and procedures smartly, cheaply, safely (Pat McNees's roundup of price comparison tools)
Doctors' Quality and Incentives (Globe1234.info)--links under several categories: Doctors Reviewed by Doctors, Doctors Reviewed by Statistics, Doctors Reviewed by Patients, Patterns of Complaints by Patients, Referral Service: Grand Rounds, No Privacy on the Web: Tracking Your Search for Doctors

Consumers' Checkbook advice on and lists of top-rated doctors, with LOTS of explanations. $Subscription required (but check your library). Covers ratings from patients for these areas: Boston, Chicago, Philadelphia, San Francisco-Oakland-San Jose, Seattle-Tacoma, Twin Cities, and Washington, DC, for both primary care physicians and many types of specialists. (I subscribe and find Checkbook very helpful.)

US Rumor and Hospital Report (Paul Levy criticizing the annual hospital ranking prepared by US News and World Report, Not Running a Hospital, 8-3-11) "US News needs to stop relying on unsupported and unsupportable reputation, often influenced by anecdote, personal relationships and self-serving public appearances, and work on real -- and more recent -- data.... it is time to acknowledge that this ranking offers very little in the way of valuable information. It is mainly a vehicle for advertisements from the pharmaceutical industry, who know that this issue of the magazine gets a lot of attention and high circulation."

U.S. News Best Hospitals (U.S. News & World Report). Also lists top three hospitals in each of sixteen specialties (cancer, cardiology & heart surgery, diabetes & endocrinology, ear, nose & throat, gastroenterology & GI surgery, geriatrics, gynecology, nephrology, neurology & neurosurgery, ophthalmology, orthopedics, psychiatry, pulmonology, rehabilitation, rheumatology, and urology).

Hospital Safety Score. See State Rankings (Maryland not rated).
Doctors & Hospitals (Consumer Reports)
Hospital ratings near a particular zip code (Consumer Reports)
Cups half full and half empty (Paul Levy, Not Running a Hospital, 7-24-15)
The Honor Roll of Best Hospitals (Avery Comoraw, U.S. News & World Report, 7-15-15)
Go to the website to see which departments got the highest rankings at each hospital
1. Massachusetts General Hospital (Boston)
2. Mayo Clinic (Rochester, Minnesota)
3. Johns Hopkins Hospital (tie, Baltimore)
3. UCLA Medical Center (tie, Los Angeles)
5. Cleveland Clinic
6. Brigham and Women’s Hospital (Boston)
7. New York-Presbyterian University Hospital of Columbia and Cornell
8. UCSF Medical Center (San Francisco)
9. Hospitals of the University of Pennsylvania-Penn Presbyterian (Philadelphia)
10. Barnes-Jewish Hospital/Washington University (St. Louis)
11. Northwestern Memorial Hospital (Chicago)
12. NYU Langone Medical Center (New York)
13. UPMC-University of Pittsburgh Medical Center (Pittsburgh)
14. Duke University Hospital (Durham, North Carolina)
15. Stanford Health Care-Stanford Hospital (Stanford, California)
Best Hospitals for Adult Cancer (U.S. News & World Report)
Best Hospitals for Adult Cardiology & Heart Surgery (U.S. News & World Report)
Best Children's Hospitals 2015-16 (U.S. News & World Report)
Best Hospitals for Adult Neurology & Neurosurgery

Yale-New Haven Hospital U.S. News ranking remains high but dips slightly (Ed Stannard, New Haven Register, 7-21-15) 'In addition to the complex care procedures, U.S. News rated the nation’s hospitals in five “common care” procedures that most hospitals perform, whether they are trauma centers like Yale-New Haven or less specialized hospitals. While it ranks high in specialties such as diabetes and gynecology, Yale-New Haven is rated average in heart bypass, hip replacement and heart failure and below average in knee replacement and chronic obstructive pulmonary disease. “Yale did not distinguish itself,” Harder said. “It was average or below average in each of those areas.”

Health Grades (ratings for physicians)

Dr Foster goes to America (Owen Dyer, BMJ, 7-22-15) A plethora of hospital rating systems has caused confusion in the US but now, with the help of healthcare analyst Dr Foster, that may be changing. (You may sign up for a two-week free trial subscription to BMI)

SurveyUSA News Poll on Health Care Data (showing public opinion on various aspects of the health care debate, by gender, race, party affiliation, ideology, level of college education, income, region, and age)

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Nursing Home Compare (Medicare's site, offering information about every Medicare and Medicaid-certified nursing home in the country. Paula Span, in the following article, writes that the system does not pay enough attention to patients' complaints: The Fault in Our Stars (Paula Span, New Old Age, NY Times, 7-8-14).
What quality measures can tell us about nursing home ratings (Liz Seegert, Covering Health, AHCJ, 7-27-16). "Nursing home star ratings are misleading and disingenuous, according to a recent analysis comparing ratings with quality measures alone. More than a thousand nursing homes nationally with high overall ratings had only one or two stars in quality measures, which could point to some serious health implications for residents."

Home Health Agency Ratings By State (Kaiser Health News analysis of data from the Centers for Medicare and Medicaid Services)

Nursing Home Inspect: Find Nursing Home Problems in Your State (Charles Ornstein and Lena Groeger, ProPublica, Journalism in the Public Interest). Use this tool to compare nursing homes in a state based on the deficiencies cited by regulators and the penalties imposed in the past three years. See also What’s New In Nursing Home Inspect. Paula Span wrote about this site in Shopping for a Nursing Home? There’s a Tool for That (NY Times, 9-6-12)

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What you need to know about hospitals--Report cards, watchdog reports, resources for finding critical information about hospitals and surgeons (a fairly lengthy list of such resources, elsewhere on this website)
Why Not the Best? (WNTB) Select and compare hospitals by region, health system, size, ownership, or type. Explore performance variation among different hospital groupings - by size, ownership, or type. Compare regions: Explore aggregate performance and population health in U.S. counties, hospital referral regions, and states. These data are Medicare/Medicaid discharges only.
What journalists should know about hospital ratings (Liz Seegert, Covering Health, Association of Health Care Journalists, 6-24-16) "Journalists should take hospital ratings with a healthy dose of skepticism, according to experts at a recent AHCJ New York chapter event. Simply looking at an institution’s overall rating is just the start. Reporting that without understanding what’s being rated and how ';success' is measured does a disservice to your audience."
Concerns about using the Patient Safety Indicator-90 composite in pay-for-performance programs (Rajaram et al. JAMA, 3 March 2015, 313(9):897)
Norman Bauman writes, on the AHCJ listserv (I quote by permission), "A big problem is that CMS is using these ratings to financially reward or punish hospitals for supposed good or bad quality, when these measurements haven't been scientifically validated and there's good evidence that they're not only invalid but contrary indicators. They financially penalize good hospitals. Rajaram criticized the [Patient Safety Indicator] program in JAMA and recommended against it. One problem was risk adjustment (some of the "clinical adverse outcomes," like serosal tear, are inconsequential). Another problem was surveillance bias. "Hospitals with higher VTE prophylaxis rates paradoxically had worse risk-adjusted performance on the PSI-12 VTE outcomes measure." So "PSI-90 may unfairly penalize many hospitals that have a high VTE event rate due to increases in vigilance in detection, not poor quality of care."
Norman again: "The only U.S. system I know that has been able to measure outcomes of different doctors and institutions accurately, use them to manage and improve
quality, and publish their results, is the Veterans Health Administration."
Note that the CMS ratings will sometimes direct you to hospitals with *worse* outcomes. (Critical point: the difference between process measures and outcomes measures.)Sometimes, hospitals with worse ratings had better outcomes. Rajaram explains why. Hospitals that do a better job of measuring secondary outcomes like deep vein thrombosis are going to find more DVT and look worse.

More generally, continues Bauman, "Among hospitals participating in the HAC Reduction Program, hospitals that were penalized more frequently had more quality accreditations, offered advanced services, were major teaching institutions, and had better performance on other process and outcome measures." See Hospital Characteristics Associated With Penalties in the Centers for Medicare & Medicaid Services Hospital-Acquired Condition Reduction Program (Ravi Rajaram et al., JAMA, 7-28-15, Vol. 314, No. 4).

What Makes A Good Surgeon? What Makes A Good Hospital? (Norman Bauman, Veins1.com, 9-10-07). Basically you get the best results in a hospital that does a lot of a particular procedure, and at that hospital, you get the best results with a surgeon who specializes in that procedure.

Norman Bauman continues, another day: "The big problem, I think, is that there are several different ways of rating hospitals, and they all come up with contradictory recommendations. If they can't get consistent results, something is wrong. The ratings can't all be valid. You've converted the problem of finding the best hospital to the problem of finding the best rating system.

"Sometimes the hospital ratings correlate *negatively* with mortality rates. In other words, you're more likely to die in a hospital with a good rating than in a hospital with a poor rating, according to some rating schemes.
"I've cited articles on this list that explain why:
(1) Hospitals that are more careful in diagnosing adverse events, like deep vein thrombosis, are going to look worse than hospitals that have more DVT but don't diagnose it.
(2) Many of the rating systems deliberately don't take patient poverty into account. So patients can't afford prescribed medication, they can't afford transportation to the hospital for followup treatment, and they have worse outcomes, but that's not under the hospital's control.
(3) Some hospitals, particularly the specialist hospitals, take more difficult cases, and their patients are more likely to have bad outcomes. For example, if a patient needs surgery for an abdominal aortic aneurysm, the main factors in survival are patients, age, lung function, heart function, and kidney function. The doctor has no control over that.


"Let's talk turkey. There are political reasons why people are putting so much effort into hospital rating systems for consumers is that we need one, in order to have a free-market health care system, rather than a single payer or other national system that virtually every other developed country in the world has. Kenneth Arrow, the Nobel laureate economist, said that a free market in health care was impossible because there is an imbalance of knowledge between doctors and patients: 

[Some of these articles are old but I keep them here because they suggest how much better our health care recommendations could be--if we could afford to keep evaluating everything and had a way to do so accurately.]

 

Liberals Are Wrong: Free Market Health Care Is Possible ((Megan McCardle, Atlantic, 3-18-12)
Why markets can’t cure healthcare (Paul Krugman, The Conscience of a Liberal, NY Times, 7-25-09)
"Patients can't possibly know enough to evaluate health care. Only about 10% or 15% of patients have enough health literacy to follow basic patient information sheets. If you're pushing a free-market health care system, you have to come up with a way of proving Arrow wrong and giving patients a way to be "wise consumers." These rating systems are supposed to make choosing a doctor as easy as choosing a refrigerator from Consumer Reports. They've never worked. The biggest problem is that they can't answer outcomes questions, "How likely am I to die from this surgery?" That's because most of them don't measure outcomes, they measure secondary indicators or processes like how many DVT cases the hospital reports.

"Ironically, when I did the research, the hospitals with the best outcomes research and data were the ones in the Veterans Affairs system, which is an example of what a good American single payer system could look like. They've done studies for example on surgeries, like appendicitis or colon cancer, in all hospitals throughout their system, and measured the outcomes, including mortality, and variations. They find the places with poor outcomes and correct them. They have the great advantage of a good electronic health record that can get consistent data throughout their system, and generally better patient data. In the private sector, they have to make do with electronic health records that were designed originally for billing, and modified for quality control. A good story would be to compare the outcomes and quality at the local VA hospitals with the private hospitals, although they might be spooked from the attacks."

In addition, most comparison sites use Medicare death rates, "Medicare death rates, which exclude anyone who's been on hospice at any time in the past year, up through the first day of the hospital stay," says Paul Burke. "Hospice is wonderful, but people on hospice don't go to hospital much, so hospice deaths after a hospital stay would typically mean they were in hospice earlier in the year and left it, or they signed up for hospice on the first day of the hospital stay. In any case someone eligible for hospice in the past year has fragile health, and should be counted in hospital mortality."

The Problem With Satisfied Patients (Alexandra Robbins, The Atlantic, 4-17-15) A misguided attempt to improve healthcare has led some hospitals to focus on making people happy, rather than making them well.
Why Markets Can't Cure Health Care (Paul Krugman, NY Times, 7-25-09)

MEDICARE COMPARE SEARCH PAGES
Dialysis Compare
Home Health Compare
Hospital Compare
Inpatient Rehabilitation Facility Compare
Long-Term Care Hospital Compare
Medicare Plan Finder
Nursing Home Compare
Physician Compare

"Hospital Choice May Be a Matter of Life or Death", aka Go to the Wrong Hospital and You’re 3 Times More Likely to Die. (Reed Abelson, NY Times, Business Day, 12-14-16) "While consumers can use tools like Medicare’s Hospital Compare, which offers general quality information about individual hospitals, the data are very limited, Dr. Rosenberg said. Many quality measures rely on reporting about whether the hospital gives patients an antibiotic, not whether they develop an infection, and they do not distinguish among different diseases. A hospital that is a top performer in heart surgery, for example, may be a poor place to choose to get a knee replacement. The authors say patients need such information.

     'This paper raises the question of why don’t we have broader outcomes measurement and transparency around performance,' said Dr. Justin B. Dimick, one of the authors and a surgeon and researcher at the University of Michigan." Atul Gawande (one of the co-authors of the study Abelson describes (link below) points to two areas where information is publicly available: heart surgery by the Society of Thoracic Surgeons and cystic fibrosis. In those two areas, patients have the ability to make better-informed decisions and hospitals can use the data to improve their care.


Quantifying Geographic Variation in Health Care Outcomes in the United States before and after Risk-Adjustment (Barry L. Rosenberg, Joshua A. Kellar, Anna Labno, et al., PLoS One, 12-14-16)
The Burgeoning “Yelpification” Of Health Care: Foundations Help Consumers Hold A Scale and a Mirror to the Health Care System (Paul Howard, Yevgeniy Feyman, and Amy Shefrin, Health Affairs, 5-25-17). The following links come from that piece.
Yelp Reviews Of Hospital Care Can Supplement and Inform Traditional Surveys of the Patient Experience of Care (Benjamin L. Ranard et al., Health Affairs, April 2016)
Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS)
National Hospital Ratings Systems Share Few Common Scores And May Generate Confusion Instead Of Clarity
National Hospital Ratings Systems Share Few Common Scores And May Generate Confusion Instead Of Clarity (J. Matthew Austin, et al., Health Affairs, March 2015)
Still Searching: How People Use Health Care Price Information in the United States, New York State, Florida, Texas and New Hampshire (PDF, Public Agenda, April 2017)
Consumer Perspectives on Health Care Decision-Making Quality, Cost and Access to Information (Linda Weiss, PhD, Maya Scherer, MPH, Anthony Shih, The New York Academy of Medicine)
Principles for Making Health Care Measurement Patient-Centered (American Institutes for Research, April 18, 2017) This, too, is relevant to the discussion:
‘I Have a Ph.D. in Not Having Money’ (Emma Goldberg, NY Times, 11-25-19) American medical schools are the training grounds for a white-collar, high-income industry, but they select their students from predominantly high-income, and typically white, households. That top medical schools seem to favor the rich is especially disturbing to low-income students because they know that their diverse experiences and perspectives are an asset, not a liability. Medical school is expensive for everyone. But for low-income students, the hidden costs can be prohibitive.

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And then there are scams:
I’m a Journalist. Apparently, I’m Also One of America’s “Top Doctors.” (Marshall Allen, ProPublica,2-28-19) Companies cash in by calling physicians “Super Doctor,” “Best Doctor” or “Top Doctor” and then selling them opportunities to boast about the honor. Experts call the accolades a “scam.” Giving one to journalist Marshall Allen highlights the absurdity.

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When living wills are not enough

Norman Bauman posted the following story, about his experience with
his mother, on the Association of Health Care Journalists listserv.
I reprint it here under Creative Commons license 2.0 (with author's permission)
https://creativecommons.org/licenses/by/2.0/

When living wills are not enough
by Norman Bauman

My experience is that living wills aren't too useful (and there is
published research to support that). I would suggest that you  Read More 
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