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Commentary: I Needed Help With My Autistic Son. Others Need Help Too

The author, Susan Senator, and her son, Nat (Courtesy of Ned Batchelder)

The author, Susan Senator, and her son, Nat (Courtesy of Ned Batchelder)

The winter my son Nat broke our playroom window with his head was an endlessly snowy one. He was home on school break and on sensory overload — rocking too wildly on a rocking chair, too close to the bay window. A nauseating shatter, like the crack of thin ice underfoot.

Miraculously, he was not hurt.

Nat has fairly severe autism, and back then he struggled with all the unstructured time and the oppressive indoors of a New England winter. We all did. The season of days spent inside wears on all families. But if you are also living with a child with a complex developmental disability, who is nearly non-verbal and with sensory issues, it can mean that he will likely need extra help staying safe.

Back then I didn’t realize just how sensitive Nat was to confusion and unorganized days, or how his anxiety roared inside him, jangling his nerves, forcing him to pace, to scream, or to pinch. I understand now that autism wasn’t the enemy — lack of help was. We needed someone trained in autism education, who could work directly with Nat on activities of daily living, self-calming, social skills and how to behave out in the community; someone who could also work with us on how to organize Nat’s time at home to comfort him with a better sense of order. Continue reading

Colonoscopies, Mammograms And Childbirth Are Americans’ Most-Shopped Health Services

The idea of comparing prices and quality when we are in the market for health care is pretty new territory in our country of avid shoppers. But more and more employers and insurers are giving patients tools that let them put in the name of a test or procedure and see who charges what.

So what are patients shopping for? A study out Monday looked at the health care shopping habits of 332,255 members of insurer Aetna in 2011 and 2012. The top shopped service was a colonoscopy. Coming in at second and third, respectively: a mammogram and childbirth services.

Patient shoppers were typically younger, healthier women who had a high-deductible plan and had time to plan ahead. But overall, only about 3 percent of those who had access to Aetna’s “Member Payment Estimator” used the tool — even though surveys show patients want prices.

“This suggests that our efforts to engage patients with price information are still very much a work in progress,” one of the study’s co-authors, Anna Sinaiko, said in an interview. She’s a research scientist in the Department of Health Policy at Harvard’s T.H. Chan School of Public Health.

Sinaiko said patients often do not know where to find a price at the time they are making an appointment or choosing a hospital.

“This question of how to get this information to patients is the key one going forward, and continuing to fill this gap is the important work that lies ahead,” Sinaiko said.

Most health care comparison tools offer limited quality information because few reputable organizations have determined how to measure quality and collect the numbers.

We have some quality data that we’ve previously collected and published on colonoscopies, mammograms and childbirth. At the very least, we hope this will help you ask more informed questions if you are trying to figure out where to find the best value for your health care dollar.

The study appears in the April issue of the journal Health Affairs.

Our Past Quality Measures Reporting:

‘Not Unlike A Mortgage’: Health Care Loans Proposed For Pricey Treatments

Robert Deckman, at his home in Gloucester (Jesse Costa/WBUR)

Robert Deckman, at his home in Gloucester (Jesse Costa/WBUR)

About three years ago, right around his 50th birthday, Robert Deckman found out he qualified for MassHealth. So this carpenter from Gloucester did something he hadn’t done in years: He went to the doctor.

“I’m like, well, let’s get the 50-year tuneup, the whole nine yards, just everything,” Deckman said recently, tossing his hands in the air. “The blood work was the last thing I did.”

The blood work showed Deckman had hepatitis C, a virus that damages the liver. His doctor delivered good news: A drug coming on the market would almost certainly cure his disease. And bad news: One bottle of the pills would cost $37,000. Deckman would probably need two.

“‘I can’t pay that, so I guess I’ll just die,’ ” Deckman recalled telling the doctor.

The doctor told Deckman insurance should cover Harvoni, the medicine the physician would prescribe, but his insurance provider might make him “jump through hoops,” the doctor said.

Deckman was denied the very expensive life-saving drug twice. His skin turned yellow, his pony tail thinned, he developed a skin infection and problems with his teeth. Deckman’s family grew desperate. His sister, Viki Deckman-Moeller, laid out a strategy.

“Plan A was to put a fundraiser together for my brother, and see if we could, just through friends and family, get some donations,” Deckman-Moeller said. “And then, we were looking at, or I was looking at, going out and getting a loan of some type at a low interest rate, for — it would have been about $50,000 I guess.”

Taking out a loan or pulling out a credit card to pay a health bill is not new. But now, with hep C pills that are $1,000 apiece, cancer drugs priced at $100,000 a year, and gene therapy at almost $1 million per treatment, credit cards or a line of credit at your bank will not be adequate.

Dr. David Weinstock, left, and professor Andrew Lo (Courtesy)

Dr. David Weinstock, left, and professor Andrew Lo (Courtesy)

MIT professor Andrew Lo and Dr. David Weinstock at the Dana-Farber Cancer Institute say it’s time to create a long-term health care loan.

“The basic idea is for individual patients to have access to health care loans, not unlike a mortgage or auto loan or student loan,” Lo said. Patients would “borrow from a loan company to pay for these extremely expensive therapies and amortize the payments over a period of time, say five to 10 years.”

The loans would be available for drugs or treatment that would cure a disease or improve a patient’s health over the length of the loan.

“If the drug works, then all the payments would be made, but if it doesn’t, then payment would stop,” Weinstock said. “That creates more risk in the investment itself but it also incentivizes drug companies to develop drugs that really do work.” Continue reading

Opinion: A Call For Protecting The Health Of Women Who Donate Their Eggs

Human egg and sperm (Spike Walker. Wellcome Images/Flickr)

Human egg and sperm (Spike Walker. Wellcome Images/Flickr)

By Judy Norsigian and Dr. Timothy R.B. Johnson

The egg market is growing.

As couples and individuals continue to rely on assisted reproductive technology to overcome infertility, to make parenthood possible for gay couples and for other reasons, the demand for eggs is increasing swiftly. Between 2000 and 2010, the number of donor eggs used for in vitro fertilization increased about 70 percent per year, from 10,801 to 18,306, according to a report in the Journal of the American Medical Association.

And although there are no exact figures for how many young women engage in egg-retrieval-for-pay, the numbers are at least in the thousands. Many of these women are in their early 20s — often university students in need of cash to cover their tuition fees. But what most of these women, as well as the general public, don’t realize is that there are no good long-term safety data that would enable these young women to make truly informed choices.

Now, a number of women’s health and public interest advocacy organizations — including Our Bodies Ourselves, the Pro-Choice Alliance for Responsible Research and the Center for Genetics and Society — are studying women’s knowledge about egg retrieval and calling for more and better research about its risks.

Here’s an example:

One drug frequently used to suppress ovarian function (before the ovaries are “over-stimulated” to produce multiple eggs that can then be harvested and fertilized) is leuprolide acetate (Lupron). The U.S. Food and Drug Administration has not given approval for this particular use of the drug, and thus its use during egg retrieval protocols is “off label.”

In various surveys of younger women engaging in so-called egg “donation,” it appears that this fact about off-label use is rarely shared. Probably few, if any, of these young women know about the 300-page review of many Lupron studies that Dr. David Redwine submitted to the FDA in 2011. In this report, he documents a plethora of problems, some long term.

How can we encourage the collection of adequate long-term data about the extent and severity of egg retrieval risks? Given the strong anecdotal evidence of problems such as subsequent infertility, a possible link to certain cancers and more prevalent short-term problems with Ovarian Hyperstimulation Syndrome (OHSS) than previously reported in the literature, more well-done studies are needed.

Continue reading

A $1 Pill That Could Save Thousands Of Lives: Research Suggests Cheap Way To Avoid U.N.-Caused Cholera

(United Nations Photo/Flickr)

(United Nations Photo/Flickr)

By Richard Knox

Here’s a way to get a big bang for a buck:

If a few hundred United Nations peacekeeping troops had taken a $1 antibiotic pill five years ago before they were deployed to Haiti, it may well have prevented a cholera outbreak that has so far sickened 753,000 Haitians and killed more than 9,000.

That’s the takeaway of a new study by Yale University researchers in the journal PLoS.

The authors believe their evidence should prompt the U.N. to adopt a simple and incredibly cost-effective strategy: Make sure all the 150,000 peacekeepers it sends out into the world each year from cholera-afflicted countries get preventive doses of antibiotics before deployment.

It’s not the first time the U.N. has gotten that advice. It was first suggested by a panel of outside experts the agency appointed back in 2011 to investigate the Haitian epidemic. But so far the U.N. has rejected the panel’s recommendation on preventive antibiotics.

It’s not clear whether that will change. The U.N.’s chief medical officer, Dr. Jillian Farmer, said in an interview Friday that she welcomes the new study. But she noted it does not address “the biggest barrier to implementing the antibiotic recommendation” — a concern that what she calls “mass administration” of antibiotics would give rise to antibiotic-resistant strains of cholera.

“It may be we will be able to do this [administer pre-deployment antibiotics to U.N. peacekeepers],” Farmer said. “I don’t have a closed mind.”

The Yale researchers and others argue that the concern about generating resistant cholera strains is overblown because the antibiotics would be targeted — not administered massively. They further argue that the U.N. should sponsor research to answer that question, given the urgency of the question.

“When we have a case as extreme as Haiti showing the status quo doesn’t work, we should be working to build evidence for a solution that does, not using a lack of proven solutions as an excuse not to act,” said Adam Houston, who works with the Boston-based Institute for Justice and Democracy in Haiti.

The new study is the latest chapter in a tragic story that’s been unfolding since mid-October of 2010, when, researchers say, a single U.N. peacekeeper from Nepal most likely introduced cholera to Haiti, touching off the most explosive cholera epidemic in modern times. Before the outbreak. Haiti had been cholera-free for at least a century; thus, its citizens had no immunity to the disease.

“Based on DNA evidence, this outbreak was probably started by one or very few infected, asymptomatic individuals — I would guess one,” said Daniele Lantagne, a Tufts University environmental engineer who was one of four independent experts appointed by the U.N. in 2011 to investigate the outbreak.

Since none of the 454 Nepalese peacekeeping troops deployed to Haiti in late 2010 showed any symptoms of cholera, all of them would have had to take a prophylactic dose of antibiotic to prevent any one of them from starting the outbreak. That would have cost around $500 — a tiny price to pay to avoid a devastating epidemic that — absent the investment of billions of dollars in clean water and sanitation — will continue into Haiti’s indefinite future.

The new analysis finds that prophylactic antibiotics would have reduced the chances of the Haitian epidemic by 91 percent. When antibiotics are combined with cholera vaccination, the risk of an outbreak goes down by 98 percent.

The U.N. began requiring cholera vaccination of all its field personnel late last year. But the new study says vaccination by itself isn’t very effective; it reduces the risk of an outbreak by only 60 percent at best.

That’s because vaccination can prevent someone from falling ill from cholera, but it doesn’t prevent infection — so a vaccinated person can still carry the cholera bacterium and pass it on to others.

“Vaccination alone is not enough,” said Virginia Pitzer, who led the Yale research team. “Vaccination plus antibiotic prophylaxis would be best.”

“Antibiotics are far and away the most effective and the least expensive,” added epidemiologist Joseph Lewnard, the study’s first author. “It hits the problem from two angles. It not only prevents those exposed to cholera from experiencing an infection, but if they do get infected it shortens the duration of shedding the bacteria. So once they arrive [at their deployment destination] they would no longer have bacteria in their stools.” Continue reading

U.S. Health Care Is Less Private, More ‘Socialist’ Than You Might Think

The extent of the government's role in health care has become a key issue in the Democratic presidential primary. Here, candidates Hillary Clinton and Bernie Sanders are seen in a debate on Jan. 17 in Charleston, S.C. (Mic Smith/AP)

The extent of the government’s role in health care has become a key issue in the Democratic presidential primary. Here, candidates Hillary Clinton and Bernie Sanders are seen in a debate on Jan. 17. (Mic Smith/AP)

By Richard Knox

Readers, a pop quiz:

The proportion of U.S. health care paid by tax funds is (a) less than 30 percent, (b) about half or (c) more than 60 percent.

If you picked “more than 60 percent,” you’re right — but you’re also pretty unusual.

“Many perceive that the U.S. health care financing system is predominantly private, in contrast to the universal tax-funded health care systems in nations such as Canada, France or the United Kingdom,” David Himmelstein and Steffie Woolhandler write in a new analysis of U.S. health spending in the American Journal of Public Health.

They find that 64.3 percent of U.S. health expenditures are government-financed. And they project the tax-supported proportion will rise to 67.1 percent over the coming decade as the baby boom generation ages and retires — nearly as high as Canada’s 70 percent.

“We are actually paying for a national health program, we’re just not getting it,” Woolhandler says.

tax dollars for U.S. health spending

Now, Himmelstein and Woolhandler have an agenda. For decades, they’ve been perhaps the leading researchers promoting the kind of single-payer health system that Socialist and Democratic presidential candidate Bernie Sanders has put on the debate agenda. One recent poll suggests more than half of Americans (and 30 percent of Republicans) support the idea.

But even if you disagree with the Himmelstein-Woolhandler ideology, their research is generally regarded as sound, and their method is straightforward.

They added up what federal and state governments spend on health through Medicare, Medicaid, the Veterans Health Administration, government employees’ health care premiums, tax subsidies and other programs. They argue that accounting by government agencies (the Center for Medicare and Medicaid) undercounts the real tax burden because it leaves out major pieces of the pie — such as government employees’ care ($156 billion a year) and tax subsidies for private, employer-sponsored coverage (nearly $300 billion).

And whatever you think about Medicare-for-all, it’s a good idea to see the present U.S. health care system for what it is — an increasingly government-funded financing scheme. Continue reading

Options Weighed To Address State’s Health Care Price Variations

Updated 6:50 p.m.

BOSTON — Variations in prices for the same service at different hospitals in Massachusetts do not reflect different qualities of care and have not evened out over time, according to a Health Policy Commission report released Wednesday.

The report found that higher prices “are not generally associated” with better care, and that prices vary across the different types of hospitals — academic medical centers, teaching hospitals, community hospitals — as well as within each individual group.

To highlight the difference in costs just at community hospitals during a Wednesday meeting, Health Policy Commission executive director David Seltz pointed to levels of spending on maternity care. Spending for a low-risk pregnancy ranged from $16,000 at North Shore Medical Center to $9,000 at Heywood Hospital.

“While some variation in prices is warranted to support activities, unwarranted variation in prices — combined with a large share of volume at those higher-priced institutions — leads to higher spending overall and inequities in our distribution of resources,” Seltz said.

Continue reading

More Evidence That Growing Up Poor May Alter Key Brain Structures

Allan Ajifo/flickr

(Allan Ajifo/Flickr)

Poverty is bad for your brain.

That’s the basic takeaway from an emerging body of research suggesting that the distress associated with growing up poor can negatively influence brain development in many ways, and in certain cases might also lead to emotional and mental health problems, like depression.

The latest study, led by researchers at Washington University School of Medicine in St. Louis, found that poverty in early childhood may influence the development of important connections between parts of the brain that are critical for effective regulation of emotions.

The study, published in the Journal of American Psychiatry, adds “to the growing awareness of the immense public health crisis represented by the huge number of children growing up in poverty and the likely long-lasting impact this experience has on brain development and on negative mood and depression,” researchers report.

Continue reading

When It Comes To Happiness, Time Trumps Money, Study Suggests

(Amanda/Flickr)

(Amanda/Flickr)

By Joshua Eibelman
CommonHealth Intern

What do you value more: your money or your time?

A new study by researchers at the University of British Columbia suggests that those who place a greater value on their time, rather than their money, are happier.

Among the study’s 4,600 participants, there was an almost even split between those who prefer money and those who put a higher value on their time.

While the participants’ median age ranged from 20-45, older people tended to value time over money, possibly because over the years, their priorities shifted, and they feel greater satisfaction from quality time with friends and family, researchers found.

The study, published in the journal Social Psychological and Personality Science, looked at what kinds of trade-offs people were willing to make to achieve “happiness.” For instance, participants were asked whether they would prefer a higher paying job farther from home or a lower paying job closer to home.

College students surveyed at the University of British Columbia were asked various questions about what fields of study and jobs they’d choose and how they would prioritize time commitments versus potential salaries.

Participants were told that they’d been admitted to two graduate programs and had to decide between a higher starting salary with more more work hours, or a lower salary with fewer hours, the study said.

Those who are willing to make trade-offs in favor of time, the study found, tend to be happier. Interestingly, researchers report, “These findings could not be explained by materialism, material striving, current feelings of time or material affluence, or demographic characteristics such as income or marital status.”

Happiness was measured though a number of self-reporting tools and questions about the number of positive emotions people feel in a day, said lead researcher Ashley Whillans, a doctoral student in social psychology at the University of British Columbia.

Whillans likened preferences for either time or money as “personality characteristics.” Continue reading

Opinion: What A Cancer Cure ‘Moon Shot’ Might Look Like

During his final State of the Union address, President Obama announced a new national effort to cure cancer. He said Vice President Joe Biden, who lost his 46-year-old son to cancer last year, would lead the effort. (Evan Vucci/AP)

During his final State of the Union address, President Obama announced a new national effort to cure cancer. He said Vice President Joe Biden, who lost his 46-year-old son to cancer last year, would lead the initiative. (Evan Vucci/AP)

In his final State of the Union address Tuesday night, President Obama called for a historic new effort to find a cure for cancer, a “moon shot.”  

“For the loved ones we’ve all lost, for the family we can still save, let’s make America the country that cures cancer once and for all,” Obama said in naming Vice President Joe Biden to lead the effort. 

So what might such a massive endeavor look like? Here, Barrett Rollins, M.D., Ph.D., chief scientific officer at the Dana-Farber Cancer Institute, offers his vision:

President Obama’s call for a new national effort against cancer — a “moon shot” — comes at a most opportune time. Cancer research has advanced significantly and now genomic analysis of tumors can reveal the specific DNA changes that drive cancer growth.

Our patients at Dana-Farber/Brigham and Women’s Cancer Center and Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, through the Profile research project, are benefiting from this — using the powerful technique of next-generation sequencing, scanning more than 300 cancer-related genes in every patient’s tumor to look for abnormalities. In a growing number of cases, the DNA changes can be targeted by precision therapies such as designer drugs that block overactive growth pathways. Often it will take combinations of targeted drugs to halt cancer progression, and many studies of these combinations are underway.

At the same time, there’s enormous promise in the field of immunotherapy. We’ve learned how to boost the body’s natural defenses against cancer and how to remove the molecular “brakes” that cancer cells exploit to hide from immune soldier cells and hinder their attack on tumors. Drugs that help the immune system fight cancer are coming quickly to the market, and there is promising research on related strategies such as cancer vaccines and genetic manipulation of immune cells to recognize cancer cells in the body. Continue reading