Tagged Cost and Quality

‘Fanciful, Inflated, Difficult To Decode And Inconsistent’: Experts Blast Rules Requiring Hospitals To Post Prices

The Trump administration now requires hospitals to post their chargemasters online in an effort to increase pricing transparency in the industry. But many experts criticize the rules, saying the information is unusable to consumers. In other hospital news: children’s hospitals brace for changes from the administration’s tax reform law, and hospitals push physicians to go in-network.

Listen: Do Consumers Benefit When Hospitals Post Sticker Prices Online?

Julie Appleby, a Kaiser Health News senior correspondent, appeared last week on WBUR’s “Here & Now” with Jeremy Hobson and on Science Friday to discuss the new requirement from the Centers for Medicare & Medicaid Services that hospitals post their list prices online. But, according to KHN’s coverage, the information popping up on hospital websites “may initially serve to confuse more than illuminate.”

You can listen to the “Here & Now” segment and the Science Friday discussion.

And check out KHN’s story, “As Hospitals Post Sticker Prices Online, Most Patients Will Remain Befuddled” (Jan. 4), co-written by Appleby and Barbara Feder Ostrov, for more insight.

Must-Reads Of The Week From Brianna Labuskes

Happy Friday, where we’re 20 days and so-and-so hours (depending on when you read this) into the partial federal shutdown. As of today, it’s tied as the second-longest one in U.S. history, matching the funding gap that stretched from December ’95-January ’96 under President Bill Clinton. (Side note: The history of U.S. shutdowns is a good read for us policy nerds.)

Although health care has been somewhat insulated from the standoff (because funding for the Department of Health and Human Services had already been approved), the battle is really a lesson in the power of a ripple effect. Among the health-related things that have been touched by the impasse in some way: the CVS-Aetna merger, domestic violence victims, food stampswildfire and storm disaster funding, pollution inspections, drug approvals and the Affordable Care Act lawsuit.

But a lot of focus this week was on how the shutdown is curtailing food safety inspections by the Food and Drug Administration, especially following a year that was marked by several high-profile foodborne illness outbreaks.

Politico: FDA Looks to Restart Safety Inspections for Risky Foods Amid Shutdown


This week, my pharma files in Morning Briefing were bursting at the seams, and to be honest, I don’t see that changing anytime soon. This is definitely going to be a year of drug-pricing news, especially because it’s one of the few bipartisan topics that Capitol Hill watchers say might gain traction in a divided Congress.

In recent days, that — along with the fact that drug prices are most certainly a winning election issue — was on stark display. Democratic hopefuls for 2020 are jostling at the starting line to be the one to get THE big, flashy pharma bill out, with Vermont Sen. Bernie Sanders (joined by fellow hopeful New Jersey Sen. Cory Booker and others) as the latest to announce a proposal.

Sanders’ bundle of bills includes allowing the importation of cheaper drugs from Canada, letting Medicare negotiate prices and stripping monopolies from drug companies if their prices exceed the average price in other wealthy countries.

One interesting thing to note (from Stat’s coverage) is that even potential candidates from states that have a heavy biopharma presence (like Massachusetts Sen. Elizabeth Warren and New Jersey’s Booker) are coming out swinging against the industry — a sure sign that being firmly against Big Pharma is seen as crucial to securing the Democratic nomination.

Stat: Democrats Eyeing 2020 Put an Early Spotlight on Drug Prices

The Hill: Sanders, Dems Unveil Sweeping Bills to Lower Drug Prices

The pharma action this week wasn’t limited to the Hill, because the movers and shakers in the industry were all thinking big thoughts at the annual J.P. Morgan Healthcare Conference. There, Johnson & Johnson CEO Alex Gorsky argued that drugmakers were going to have to step up their own self-policing when it comes to pricing or face “onerous” alternatives. Looking at the stories above, I’m thinking he’s not wrong.

The Wall Street Journal: Health-Care CEOs Outline Strategies at J.P. Morgan Conference

Meanwhile, health systems tired of shortages and high prices are flocking by the dozens to the fledgling nonprofit that was created by a group of hospitals to manufacture its own generic drugs.

Stat: Generic Drug Maker Formed by Hospitals Attracts a Dozen More Members

It was hard to pick just a few pharma stories this week, considering the abundance of choices, but one that you should absolutely make time to read is this insulin-rationing piece. Insulin has become the new face of public outrage against outrageous price increases, and this piece presents a good overview of how that came to be, as well as the human toll the hikes have taken. The gut-punch sentence: “Within a month of going off [his mother’s] policy, [Alec Raeshawn Smith] would be dead.”

The Washington Post: Insulin Is a Lifesaving Drug, But It Has Become Intolerably Expensive. and the Consequences Can Be Tragic.


In a largely symbolic move, House Democrats voted to intervene in the health care lawsuit — a strategy geared more toward putting Republicans on record voting against the law (and thus against popular provisions they promised in the midterms to protect) than anything else.

The Hill: Dems Hit GOP on Health Care With Additional ObamaCare Lawsuit Vote

The vote highlighted a problem the GOP faces as it eyes 2020: For the longest time, Republicans have fallen back on “repeal and replace” as their main health care message. Now, the party is going to have to come up with a “positive vision” if they want to regain ground with voters, experts say.

The Hill: GOP Seeks Health Care Reboot After 2018 Losses


States, states, states! Everyone says that’s where the health care movement will be in the next two years, which certainly held true this week.

In California, new Gov. Gavin Newsom revealed his big health care dreams that include reshaping how prescription drugs are paid for, taking steps toward a single-payer system, reinstating the individual mandate, expanding Medi-Cal coverage for immigrants in the country illegally, and creating a surgeon general position for the state.

Reuters: New California Governor Tackles Drug Prices in First Act

Sacramento Bee: Gavin Newsom CA Health Plan Includes Individual Mandate

Meanwhile, up in Washington state, Gov. Jay Inslee proposed a “public option” health care plan for residents, a move that would set the stage for a universal coverage system. (It should be noted that Inslee is a 2020 contender.)

Seattle Times: Inslee Proposes ‘Public Option’ Health-Insurance Plan for Washington

In New York, several big health care developments emerged this week. NYC Mayor Bill de Blasio plans on investing $100 million into making sure that everyone in the city — including residents in the United States illegally — is guaranteed health coverage.

The New York Times: De Blasio Unveils Health Care Plan for Undocumented and Low-Income New Yorkers

And in Albany, Gov. Andrew Cuomo, citing the looming threat to Roe v. Wade, promised to cement a woman’s right to abortion in the state’s constitution.

The Wall Street Journal: Cuomo Vows to Codify Roe V. Wade Decision Into New York Constitution


It seems these days, you can’t swing a cat without hitting someone talking about “Medicare-for-all,” but what about a Medicaid “buy-in”? Some states are considering the option as a politically palatable alternative to help people who are struggling to buy coverage on the exchanges. The plans might not offer the full range of benefits available to traditional beneficiaries, but it could be something.

Stateline: Medicaid ‘Buy-In’ Could Be a New Health Care Option for the Uninsured

Speaking of MFA: A new Politico/Harvard poll shows that 4 in 5 Democrats favor Congress enacting a taxpayer-funded national health plan. Also to note, a fair amount of Republicans (60 percent) supported the idea of letting Americans under 65 buy into Medicare.

Politico: POLITICO/Harvard Poll: Many Democrats Back a Taxpayer-Funded Health Care Plan Like Medicare For All


As of Jan. 1, hospitals have had to post their prices online — which has resulted in much grumbling from industry and experts alike who say the numbers are meaningless to consumers. Centers for Medicare & Medicaid Administrator Seema Verma acknowledged the flaws with the rules this week, but still called them an important first step toward transparency.

Modern Healthcare: Verma: Chargemaster Rule Is ‘First Step’ to Price Transparency


In the miscellaneous file for the week:

• The Chinese scientist who used CRISPR to edit the genes of human embryos had scientists up in arms over the ethical dilemma late last year. But the path of medical breakthroughs is often littered with lapses such as his. Do the ends ever justify the means in these cases? And if so, where should the line be drawn?

CNN: Unethical Experiments’ Painful Contributions to Today’s Medicine

• Juul: Public health crusader? That’s the image the e-cigarette company (under ever-increasing government scrutiny for its marketing practices directed toward youths) is going with these days. But experts are calling its new ad campaign — which touts Juul products as a way to tackle adults’ smoking habits — revisionist history.

The New York Times: Juul’s Convenient Smoke Screen

• A woman who was in a vegetative state for more than 10 years reportedly gave birth last month. The workers at the nursing facility she was in didn’t realize she was even pregnant until she went into labor, raising all kinds of questions about quality of care, abuse and the medical complications of the process.

CNN: How Does Someone in a Vegetative State Have a Baby?

• HIV prevention medication has been shown to be highly effective and, quite literally, a lifesaver to vulnerable populations. But taking it was costing some people their chance at qualifying for life insurance. Now, though, one insurer has settled a lawsuit over the denials, possibly leading the way to changes in the industry.

The New York Times: Facing Legal Action, Insurer Now Will Cover People Taking Truvada, an H.I.V.-Prevention Drug


And good news! The E. coli outbreak is officially over, so you can go back to your romaine (yay?). Have a great weekend!

Powerful Chamber Of Commerce Pledges To Fight Any Efforts By Congress To Move Toward Single-Payer

“We’ll use all our resources to make sure that we’re careful there,” said Thomas Donohue, the president and CEO of the Chamber of Commerce. In other coverage and access news: insurer settles discrimination allegations over consumers who take HIV-prevention medication; a look at what happens when an insurer’s pricing tool gets it wrong; and trends for the coming year.

Powerful Chamber Of Commerce Pledges To Fight Any Efforts By Congress To Move Toward Single-Payer

“We’ll use all our resources to make sure that we’re careful there,” said Thomas Donohue, the president and CEO of the Chamber of Commerce. In other coverage and access news: insurer settles discrimination allegations over consumers who take HIV-prevention medication; a look at what happens when an insurer’s pricing tool gets it wrong; and trends for the coming year.

Bills, Bills, Bills: Readers And Tweeters Offer Solace, Solutions And Scoldings

Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.


2018 was a busy year for KHN, harvesting more than 1,200 medical bills submitted by readers for consideration in our “Bill of the Month” franchise, an investigative partnership with NPR. These monthly dives into patients’ cumbersome bills continue to spawn stories — as well as proposed changes to health care policy by legislators.

Sen. Bernie Sanders (I-Vt.) glommed on to the despair of an Arizona couple consumed by health care debt (“Insured But Still In Debt: 5 Jobs Pulling In $100K A Year No Match For Medical Bills,” Dec. 28).

In response to the August “Bill of the Month” feature about a schoolteacher’s $109,000 heart attack, Rep. Lloyd Doggett (D-Texas) tweeted: “When I heard Drew’s story — an Austin teacher saddled with a $100k surprise bill after surgery — I reached out to him to share my concern. We discussed my End Surprise Billing Act legislation, which would end this predatory practice.”

Sanders also shared that story on Facebook, saying: “Our health care system makes absolutely no sense. If you don’t have health insurance, you probably can’t afford to get the care you need. And if you DO have health insurance, in many cases you STILL won’t be able to afford the care you need, on top of paying a monthly premium.”

Outrageous medical bills proved something readers could relate to, as they reviewed our end-of-the-year roundup, Year One Of KHN’s ‘Bill Of The Month’: A Kaleidoscope Of Financial Challenges” (Dec. 21).

— Dr. David Johnson, Dallas


Plaudits For ‘Bill Of The Month’ Series

Thank you for publishing these stories. You are doing a public service. I work in health services research and know that the prices charged by manufacturers, hospitals and other providers are arbitrary. The more citizens are informed about this, the more power we have to change how much health care costs in this country.

— Beth Egan, Minneapolis


— Dr. Edward Hoffer, Boston


‘Bill Of The Month’: Recourse For Wounded Skier

It seems that the surgeon and the device manufacturer should have paid for Sarah Witter’s second surgery (“After Her Skiing Accident, An Uphill Battle Over Snowballing Bills,” Dec. 18). If she truly followed protocol for her rehab, they should have owned up to their mistake or to a poor manufacturing technique. Almost 10 years ago, I had an upper gastrointestinal series performed to monitor my non-Hodgkin’s lymphoma. As a result of the biopsies, I experienced significant bleeding (the doctor said that he had done this procedure several times when the patient was still on blood thinners, which I was). After I was admitted to the emergency room and received four units of blood, they repeated the procedure — and charged me for all of it. Fortunately, after threatening a lawsuit against the hospital and the doctor, they finally paid for the emergency room and operating charges.

There still may be some relief for Ms. Witter: There are companies who audit hospital bills and get paid if they find savings. When the insurance company refused to pay the hospital, they should have referred her to a company that audits hospital bills.

— Dan Kass, chief shopper of HealthCare Shopping Network, Mission, Kan.


On Twitter, readers minced no words:

— Bernie Good, Pittsburgh


— Dr. Judy Melinek, San Francisco


A Dose Of Myth-Busting

Julie Appleby’s story “Short-Term Health Plans Hold Savings for Consumers, Profits For Brokers and Insurers” (Dec. 21) perpetuates a common misunderstanding that incentives for insurance agents favor selling short-term over Affordable Care Act plans.

By comparing a monthly commission rate of 20 percent for short-term plans and a flat dollar amount for ACA policies, the article mistakenly suggests that commission earnings on short-term plans are consistently higher than those that comply with the ACA. But the premise misses the critical fact that the lifetime value of a plan — not the monthly commission rate — determines insurance agent commissions. Short-term plans are both less expensive and held by the customer for a shorter period of time than ACA plans. At eHealth, an ACA plan generates twice the revenue as each short-term policy.

Most insurance agents advocate for consumers to choose an ACA plan first, if they can afford it, because the coverage is far more comprehensive. Unfortunately, many Americans have been priced out of the ACA market and short-term policies may represent the best viable health insurance coverage at a price they can afford. Others miss the open-enrollment period and, without other options, face a year with no insurance coverage at all. The responsibility of a good insurance agent is to help all Americans gain access to the insurance policy most suitable for their individual medical and financial needs. To do anything less is not in the best interest of consumers or to the long-term success of insurance agents.

Scott Flanders, CEO of eHealth, Santa Clara, Calif.


Sad Twist On Knee Replacements

It’s true that doctors do not always tell you the reality of knee replacements upfront (“Up To A Third Of Knee Replacements Pack Pain And Regret,” Dec. 25). I had to have my right knee replaced twice. I had a metal allergy to the first implant, which I found out the hard way.

Patients should be tested for metal allergies before surgery. I am so sorry I ever had my knee replaced — it hurts worse now than it did before the surgery. I would not have my other knee replaced unless I could not walk. I was told my knee would be great until after my second surgery, when my surgeon warned me my knee would possibly always cause me pain. That would have been nice to know before my first surgery.

— Lesa Lawrence, Dallas


— Greg Mays, Nashville, Tenn.


Without knocking total knee arthroplasty, or TKA, a New Yorker wonders whether we’re moving in the right direction.

— Wendy Diller, New York City


Doing The Math On Biologics

The article “Why The U.S. Remains The World’s Most Expensive Market For ‘Biologic’ Drugs” (Dec. 20) mentioned that Cosentyx costs about $15,000 in Europe versus almost $65,000 in the United States. If it is true that someone can purchase a three-month supply for personal use in Europe — and if a three-month supply, properly handled, has a shelf life greater than three months — it seems possible for Susie to go to Italy or somewhere in Europe every three months for an estimated cost of $6,000 a year or less (with tickets purchased in advance). Adding to her travel costs the $15,000 annual cost of the drug, which conveniently can be self-injected, she could still make out far better than paying $65,000 a year in the States. Just a thought.

— Abette Jones-Bey, Blue Bell, Pa.


A tweeter offered one explanation for the pricing disparity:

— Elizabeth Henry, Olathe, Kan.


Sign-Up Season’s Unsung Heroes

Your article on navigators (“Short On Federal Funding, Obamacare Enrollment Navigators Switch Tactics,” Nov. 30) neglected to mention the group of professionals best suited to help consumers select appropriate health coverage: licensed insurance agents and brokers. Agents and brokers typically have more training and experience than navigators. They’re licensed by the states in which they work. The majority have been in business for more than 10 years.

Agents and brokers also work with their clients year-round, not just during the six-week open-enrollment period. A survey conducted by the Kaiser Family Foundation found that more than 70 percent of agents spend “most” or “a lot of” their time explaining coverage to their clients.  It’s no wonder that nearly 84 percent of adults who worked with agents and brokers when shopping for exchange coverage found them helpful — more than any other group offering assistance.

— Janet Trautwein, CEO of the National Association of Health Underwriters (NAHU), Washington, D.C.


— B. Ronnell Nolan, president and CEO of Health Agents for America, Baton Rouge, La.


Entrepreneurs Caught In The Middle

I fall into the situation described in Steven Findlay’s article “Health Insurance Costs Crushing Many People Who Don’t Get Federal Subsidies” (Dec. 14).

If you look at the typical costs for a family earning more than $100,400 a year who don’t qualify for subsidies, the cost is huge. Our current premiums for an ACA-compliant policy are about $1,400 a month with a combined $13,000 deductible for my wife and me (we are self-employed). If you have a “bad year” — say, a car accident where you are both hospitalized — your expenses jump to an estimated $29,800, or nearly 30 percent of your income. This seems to be the strategy of the health insurance companies, whereby they want health care pricing to be a fixed amount of total income. The way they get there is through lack of transparency.

After Supreme Court Chief Justice John Roberts cast the deciding vote around the constitutionality of the ACA “tax” for being uninsured, I left a great corporate job and have since started multiple companies and created jobs simply because getting health insurance through the ACA seemed certain. I am now in the position where I am wondering if I may have to stop my entrepreneurial activities and find a corporate gig again with insurance. I suspect I am not alone in this.

The continued ambiguity around this will have a stifling effect on people like us who are taking the risk to start businesses and create jobs.

— Mick Garrett, Fort Collins, Colo.


— Clayton Mowrer, Kansas City, Mo.


Band-Aid Fixes To ACA Are Like Salt To The Wound

“Ask Emily” columnist Emily Bazar offers a worthy solution that may work for a number of folks and should be explored by those whose household income is slightly above 400 percent the federal poverty level (FPL) (“Without Obamacare Penalty, Think It’ll Be Nice To Drop Your Plan? Better Think Twice,” Dec. 5). But there is a break-even point that may make this solution undoable. Since FPL is a national measure, with just two states receiving an exception (Alaska and Hawaii) to the income ceiling, for anyone who resides in a state with a high cost of living, such adjustments to take-home pay can adversely impact their ability to afford other necessities of life.

Cost of living can vary widely by state or ZIP code, yet the income ceiling for ACA subsidies is set at the national level. Insurance premiums may also vary among counties and even ZIP codes within a state. Some call this market-based pricing or pricing based on an area’s ability to pay (higher average incomes equate to higher premium prices). Still others call it price-gouging. Yet again, the income ceiling is set at the national level.

I welcome any and all ideas that would allow more folks to obtain health insurance (which, by the way, does not guarantee health care coverage). Changes need to be made to the law to level the playing field for consumers. Until all consumers have access to coverage at the same price, with the same level of subsidy be it government or employer, then we truly are putting band-aids on a heart attack. Until your age, marital status, place where you live and size of your employer no longer hinder your ability to afford health insurance coverage, there will continue to be those left out and at risk.

Unfortunately, our elected representatives at both the state and national level have little stomach to face and fix the glitches and inequities in the ACA. Their only remedy, which comes in the form of a tax on the uninsured, has taken the ACA from a solution meant to bring health insurance to all Americans to a policy that relies on those who can’t afford health insurance and are excluded from the benefits of the ACA to fund it. Now that’s ironic.

— Susan Frangione, Rockville, Md.


— Rob Levine, Minneapolis


What’s Really Hurting ACA Enrollment

I can tell you the real reason many Americans gave up on enrolling in an Obamacare plan this year (“Need Health Insurance? The Deadline Is Dec. 15,” Dec. 10).

I had a fairly good health insurance plan under the Affordable Care Act in 2014-15. In 2015, my income changed, and I was eligible for Medicaid under Illinois’ expansion of that federal-state program. However, in July 2018, Medicaid determined that I no longer qualified. I went online to the ACA marketplace to try to find an ACA plan I could afford. To my surprise, the plans available in 2014 were no longer available. The two dozen plans available in my area are not ideal. Some provide low coverage. Some are from carriers that almost all of my doctor groups do not accept. Even some “gold”-level plans have extremely high copays. Though my premium in 2018 did not increase much, it was offset by high hospital copays and burdensome deductible and coinsurance obligations. Prescription copays were percentage-based, not a dollar amount, which made it more expensive to pay for prescriptions.

This is all hurting many Americans in my income bracket. The drop in enrollment in ACA plans is because no one can afford most of these low-level coverage plans in the ACA marketplace. And almost all the ACA plans have limited access to providers, especially specialists, making getting medical treatment nearby difficult. The ACA has been changed and tweaked so that many Americans no longer can afford to buy any of the plans without going into debt if a serious illness arises.

— Lena Conway, Naperville, Ill.

Extreme Temperatures May Pose Risks To Some Mail-Order Meds

Take a look at your prescription bottles. Most say “Store at room temperature” or “Keep refrigerated.”

But what happens when drugs are delivered by mail? Were those instructions followed as the medicine wended its way from the pharmacy to your doorstep?

Those questions haunt Loretta Boesing, who lives in Park Hills, a small town in the hills of eastern Missouri, where the weather varies dramatically from season to season.

“It’s crazy,” Boesing said. “We sometimes experience temperatures like they would feel in Arizona. Sometimes we experience temperatures like they would feel up north.”

In 2012, when son Wesley was 2 years old, he got so sick from the flu that he needed a liver transplant.

The transplant surgery went well, but just a few months later, lab tests showed Wesley’s body appeared to be rejecting the organ.

Boesing felt both devastated and guilty.

“I feel the extra duty of not just protecting his life, but the life that lives on inside him,” she said.

Wesley didn’t lose his new liver, but during his weeks in the hospital, Boesing’s mind raced, thinking about what might have gone wrong.

She remembered that when his anti-rejection medications were last delivered to their house, the box had been left outside by the garage, where it sat for hours.

Temperatures that day were well over 100 degrees, well beyond the safe temperature range listed on the drug’s guidelines.

At the time, she hadn’t worried about it.

“Even though I see plainly on the bottle that it says, ‘Store at room temperature,’” Boesing said, “I still thought, ‘Ah, someone’s making sure it’s safe.’”

But after Wesley’s setback, Boesing swore off mail-order pharmacy altogether, and this year she started a Facebook group for patients who share her concerns about how extreme temperatures during shipping could affect the prescription drugs that many people receive by mail.

As of 2016, prescriptions fulfilled by mail accounted for nearly a quarter of total U.S. spending on prescriptions (before rebates and discounts), according to a report from IQVIA’s Institute for Human Data Science.

Health insurers typically contract with companies known as pharmacy benefit managers to handle the complex process of getting medicine to patients. PBMs negotiate with drugmakers on prices and rebates, help insurers decide which drugs to cover and handle mail-order shipping.

Mail order is a money saver for PBMs, and, in turn, they’ve touted the potential advantages for patients — such as 90-day refills for the cost of a 30-day copay, and the added convenience, especially for rural or housebound patients.

But Boesing wants insurers and their PBMs to reconsider these incentives and their practices in light of temperature concerns. She says they must ensure that their patients have easy access to retail pharmacies — unless the mail-order services can prove that drugs are getting to patients at the right temperatures.

The three biggest PBMs are Express Scripts, CVS Caremark and OptumRX. They insist they’ve got mail-order drug shipment down to a science.

Inside an enormous OptumRX warehouse in a Kansas City suburb, lines of orange prescription bottles fly along conveyor belts, while pharmacists scan bar codes and technicians refill bins of pills.

Lead pharmacist Alysia Heller explains that this shipping behemoth, which sends out as many as 100,000 prescriptions a day, includes a system to account for weather.

“If there’s an extreme heat situation where a product is going into 100-plus-degree weather, the system will tell the technician to add an extra ice pack,” Heller said, “because we’ve monitored the ZIP code and the weather in that area.”

But at OptumRX and across the industry, that level of temperature-controlled shipping is usually reserved only for a relatively small number of drugs — such as certain types of insulin, or hepatitis C drugs that have specific refrigeration requirements.

Standard, room-temperature medications (like most drugs for blood pressure or cholesterol, which make up the vast majority of prescriptions shipped) are typically sent in bubble mailers without any temperature monitors.

Stephen Eckel, a pharmacy professor at the University of North Carolina at Chapel Hill, said those practices can lead to some drugs being damaged.

“A lot of people enjoy the convenience of mail order, but there are some risks they’ve got to understand,” said Eckel. He said it’s possible that drugs in liquid form, such as the one Wesley was taking, could potentially be damaged by exposure to extreme heat or cold.

He predicts it’s just a matter of time before mail-order pharmacies will expand their use of temperature controls and add individual temperature monitors to all packages, so customers can see whether their medications got too hot or too cold in transit.

But Adam Fein, a consultant on pharmaceutical economics and drug distribution, called the temperature concerns overblown. He pointed out that many states already require insurance companies and/or PBMs to offer access to retail pharmacies if customers prefer.

“We have literally billions and billions of prescriptions that have been dispensed by mail over many years without evidence of widespread harm,” Fein said.

The Pharmaceutical Care Management Association is a national trade industry group for PBMs. In response to questions about temperature concerns and the safety of mail-order drugs, the association wrote in a statement: “Mail-service pharmacies adhere to all Food and Drug Administration rules, ship those prescription medications that may be adversely affected by extreme heat in refrigerated packaging, and notify patients to make sure those packages have been delivered properly.”

Some room-temperature drugs are approved to spend up to 24 hours in temperatures from as low as the upper 50s to as high as 104 degrees. But scientists just don’t know how a number of medications respond to more extreme temperatures — such as they might experience on a freezing porch or in the back of a sweltering truck.

A few studies suggest that some inhalers or antibiotics can lose potency over time.

Many industry experts think mail-order pharmacy is on the cusp of a boom driven by the development of new specialty drugs, especially biologics. Many of those often come with a hefty price tag and are generally not handled by retail pharmacies. These specialty drugs, many of which are injected, can be more vulnerable to temperature swings.

Competition in the mail-order drug industry is heating up, with Amazon’s acquisition last summer of online pharmacy PillPack, and the announcement in December that Walgreens would work with FedEx to offer next-day medication delivery.

Fein said more temperature controls and monitoring would do little more than drive up costs in an industry that’s been successful in large part because of its low operating costs.

But after collecting more than 76,000 signatures for an online petition on the issue, Loretta Boesing said she’s convinced a larger health problem is being shrugged off.

In Missouri, the Board of Pharmacy has decided to review its mail-order prescription policies and invited Boesing to testify.

Her son still needs prescriptions, but Boesing has stopped using Walgreens’ Specialty Pharmacy, which was shipping the drugs. She obtained a waiver that lets her fill Wesley’s prescriptions at a specialized pharmacy affiliated with a children’s hospital in St. Louis. She makes the two-hour round-trip drive every month to pick up the medicine.

After connecting with patients all over the country, she said, her advocacy is no longer just about keeping Wesley safe.

“I don’t want my son to have to receive special treatment,” Boesing said. “I want everyone to have access to safe medications.”

This story is part of a partnership that includes KCUR, NPR and Kaiser Health News.


KHN’s coverage of these topics is supported by
Laura and John Arnold Foundation
and
Heising-Simons Foundation

Medical Marketing In The U.S. Has Boomed Over Past Two Decades–With Meager Oversight To Keep It In Check

A new analysis of marketing data from the FDA, Medicare, other federal and state agencies, private companies and medical research finds a 69 percent increase, to $29.9 billion, over a recent 20-year period. “Marketing drives more treatments, more testing” that patients don’t always need, said Dr. Steven Woloshin, a Dartmouth College health policy expert.

As Pharma Returns To Status Quo On Drug Prices, Trump Meets With Top Advisers To Discuss Frustrations

“The president’s been really clear — prices of drugs need to be coming down, not going up,” said HHS Secretary Alex Azar, who was reportedly a part of the meeting. Meanwhile, Democrats on Capitol Hill are looking to score some early wins with small drug pricing legislation.

Health Care Industry Spends $30B A Year Pushing Its Wares, From Drugs To Stem Cell Treatment

Hoping to earn its share of the $3.5 trillion health care market, the medical industry is pouring more money than ever into advertising its products — from high-priced prescriptions to do-it-yourself genetic tests and unapproved stem cell treatments.

Spending on health care marketing doubled from 1997 to 2016, soaring to at least $30 billion a year, according to a study published Tuesday in JAMA.

“Marketing drives more testing. It drives more treatments. It’s a big part of why health care is so expensive, because it’s the fancy, high-tech stuff things that get marketed,” said Steven Woloshin, co-director of the Center for Medicine and Media at The Dartmouth Institute for Health Policy and Clinical Practice. His study captured only a portion of the many ways that drug companies, hospitals and labs promote themselves.

Advertising doesn’t just persuade people to pick one brand over another, said Woloshin. Sophisticated campaigns make people worry about diseases they don’t have and ask for drugs or exams they don’t need.

Consumer advocates say that taxpayers pay the real price, as seductive ads persuade doctors and patients alike to order pricey tests and brand-name pills.

“Whenever pharma or a hospital spends money on advertising, we the patients pay for it — through higher prices for drugs and hospital services,” said Shannon Brownlee, senior vice president of the Lown Institute, a Brookline, Mass., nonprofit that advocates for affordable care. “Marketing is built into the cost of care.”

High costs ultimately affect everyone, because they prompt insurance plans to raise premiums, said Diana Zuckerman, president of the National Center for Health Research, a nonprofit that provides medical information to consumers. And taxpayers foot the bill for publicly funded insurance programs, such as Medicare.

“These ads can be amazingly persuasive, and they can exploit desperate patients and family members,” said Zuckerman, who was not involved in the new study.

Drug companies spend the bulk of their money trying to influence doctors, showering them with free food, drinks and speaking fees, as well as paying for them to travel to conferences, according to the study.

Dr. Lisa Schwartz and Dr. Steven Woloshin(Courtesy of the Dartmouth Institute for Health Policy & Clinical Practice)

Yet marketers also increasingly target consumers, said Woloshin, who wrote the study with his wife and longtime research partner, Dartmouth’s Dr. Lisa Schwartz, who died of cancer in November.

The biggest increase in medical marketing over the past 20 years was in “direct-to-consumer” advertising, including the TV commercials that exhort viewers to “ask your doctor” about a particular drug. Spending on such ads jumped from $2.1 billion in 1997 to nearly $10 billion in 2016, according to the study.

A spokeswoman for the pharmaceutical industry group, PhRMA, said that its ads provide “scientifically accurate information to patients.” These ads “increase awareness of the benefits and risks of new medicines and encourage appropriate use of medicines,” said Holly Campbell, of PhRMA.

The makers of genetic tests — including those that allow people to learn their ancestry or disease risk —also bombard the public with advertising. The number of ads for genetic testing grew from 14,100 in 1997 to 255,300 in 2016, at a cost that year of $82.6 million, according to the study. AncestryDNA spends more than any other company of its kind, devoting $38 million to marketing in 2016 alone.

Some companies are touting stem cell treatments that haven’t been approved by federal regulators. The Food and Drug Administration has approved stem cell therapy for only a few specific uses — such as bone marrow transplants for people with leukemia. But hundreds of clinics claim to use these cells taken from umbilical cord blood to treat disease. Many patients have no idea that these stem cell therapies are unapproved, said Angie Botto-van Bemden, director of osteoarthritis programs at the Arthritis Foundation.

Stem cell clinics have boosted their marketing from $900,000 in 2012 to $11.3 million in 2016, according to the study.

In recent months, the FDA has issued warnings to clinics marketing unapproved stem cell therapies. Twelve patients have been hospitalized for serious infections after receiving stem cell injections, according to the Centers for Disease Control and Prevention.

Medical advertising today goes beyond TV and radio commercials. Some online campaigns encourage patients to diagnose themselves, Woloshin said.

The website for Restasis, which treats dry eyes, prompts patients to take a quiz to learn if they need the prescription eye drops, said Woloshin, who co-wrote a February study with Schwartz on the drug’s marketing strategy. The Restasis website also allows patients to “find an eye doctor near you.”

Many of the doctors included in the Restasis directory have taken gifts from its manufacturer, Allergan, Woloshin said. The doctor directory includes seven of the top 10 physicians paid by the company, his study says.

In a statement, Allergan spokeswoman Amy Rose said the company uses direct-to-consumer advertising “to support responsible disease awareness efforts.” The ads “do not displace the patient-physician relationship, but enhance them, helping to create well-informed and empowered consumer and patient communities.”

Drug sites don’t just lead patients to doctors. They also provide scripts for suggested conversations. For example, the website for Viagra, which treats erectile dysfunction, provides specific questions for patients to ask.

The website for Addyi, often called the “female Viagra,” goes even further. Patients who answer a number of medical questions online are offered a 10- to 15-minute phone consultation about the drug for $49. Patients who don’t immediately book an appointment receive an email reminder a few minutes later.

“This is more evidence,” Brownlee said, “that drug companies are not run by dummies.”

In Montana, Neither Republicans Nor Democrats Want To End Medicaid Expansion But They Differ On Path Forward

Republicans are arguing for new restrictions, such as work requirements, as lawmakers begin to work toward a compromise to keep Medicaid expansion alive in the state. “If I was a betting man, I’d think Medicaid will pass in some form,” said state Senate President Scott Sales (R-Bozeman). Medicaid news comes out of Louisiana, Idaho and Virginia, as well.