From today’s Boston Globe: Partners and Trump, health costs and another expensive drug

STAT News reports that Partners Healthcare CEO Dr. David Torchiana was among the health care executive who met with President-elect Donald Trump Wenesday. 

Torchiana has been among those arguing that repeal of the law could disrupt millions of families who have relied upon it for insurance coverage.

“De-insuring 20 million people, many of whom were probably Trump vPHS_Logooters, is a pretty difficult thing to do politically,” Torchiana said in November, according to the Boston Globe. “Figuring out what the pathway is to altering the ACA and doing so in a way that actually doesn’t increase the cost of health care is pretty difficult. There’s not a simple policy solution to it.”

Torchiana did not reveal what he said about the Affordable Care Act to Trump. Partners spokesman Rich Copp told STAT that Torchiana was invited by the president-elect. “They had a conversation that touched on a wide range of health care policy issues, including affordability, access, quality and biomedical research,” Copp said.

$370,000 drug

Also,  Adam Vacaro of the buiness section reports that Biogen Inc.’s new drug “to treat a rare  genetic disorder in children will be priced at about $375,000 a year per patient — its most expensive medicine ever — the Cambridge biotech company said Wednesday.”

File_000Worth noting that drug companies were once so reluctant to make drugs for rare disease that Congress had to pass The Orphan Drug Act to entice them. It seems that now they just charge a lot of them.  Could it be that these rare diseases the low-hanging fruit for the developers of biologics?

Worth revisiting former Globe reporter Steve Heuser’s 2009 piece on how Genzyme sought out patients around the world with a rare condition and convinced governments to pay the full-price for the drug–  $160,000 a year.

Jose Gonzalez felt indescribably lucky that his little girl, wasting away beneath hibiscus vines in Central America, had been found. But for Genzyme, it wasn’t luck. It was another step in a remarkable business strategy: In countries from Colombia to Taiwan to Libya, the Cambridge firm has compiled an extraordinary track record of searching out patients like Tania, providing desperately needed treatment, and then successfully pressing their governments, even poor ones, to pay full price for the most expensive drugs in the world.

That strategy has helped Genzyme bring in more than $1 billion a year on Cerezyme alone, and to develop an arsenal of similarly expensive drugs for other rare diseases. And Costa Rica would soon learn a lot about Genzyme’s determination to be paid when it considered the cost of saving Tania Gonzalez, how it would drain resources from other patients, and decided that its answer was “no.”…

What (Genzyme)  won’t do is offer a discount. Although discounts are becoming more common on pharmaceuticals sold in lower-income countries, Genzyme follows a “full price or free” model, and works hard to be sure it’s the former.

“If you’re going to give on the price someplace, everyone’s going to ask for a deal, and then you’ve got a massive mess – so from day one, it was one price,” said Alison Taunton-Rigby, a former Genzyme executive who was with the company when it began setting its price policy.

Geoff McDonough, current head of the division that sells Cerezyme, says the policy allows the company to maintain the profit margin needed to research future drugs, while also keeping a door open for the truly impoverished.

“We’ve chosen a way here that’s been consistent across the company, and has met the specific needs and complexities of patients suffering from very rare diseases,” he said.

It is a balancing act, he says, that amounts to an “extreme example” of a discounting policy: the company currently provides the drug free to more than 300 patients worldwide.

Back to Partners, this time on costs

 letter from BU’s Alan Sager on the many confusing interpretations of health that is health care costs in Massachusetts:

David Torchiana,  president and CEO of Partners HealthCare, once again has recited Commonwealth Fund analyses of federal survey data showing that Massachusetts health insurance premiums are a lower share of median income than prevails nationally (“First, do no harm”).

But federal data on actual health spending contradict Torchiana. Massachusetts health spending per person was 36 percent above the US average, the highest in the world. After deducting Medicare and Medicaid dollars, private Massachusetts health costs per person were 40 percent above the US average, an excess of $11 billion over national average costs. Meanwhile, median income here was only 20 percent above the US average.

 

 

 

ProPublica: Yelp, #Health and #Privacy

 

Stung by Yelp Reviews, Health Providers Spill Patient Secrets

by Charles Ornstein ProPublica, May 27, 2016, 11 a.m.

CaptureBurned by negative reviews, some health providers are casting their patients’ privacy aside and sharing intimate details online as they try to rebut criticism.

In the course of these arguments 2014 which have spilled out publicly on ratings sites like Yelp 2014 doctors, dentists, chiropractors and massage therapists, among others, have divulged details of patients’ diagnoses, treatments and idiosyncrasies.

One Washington state dentist turned the tables on a patient who blamed him for the loss of a molar: “Due to your clenching and grinding habit, this is not the first molar tooth you have lost due to a fractured root,” he wrote. “This tooth is no different.”

In California, a chiropractor pushed back against a mother’s claims that he misdiagnosed her daughter with scoliosis. “You brought your daughter in for the exam in early March 2014,” he wrote. “The exam identified one or more of the signs I mentioned above for scoliosis. I absolutely recommended an x-ray to determine if this condition existed; this x-ray was at no additional cost to you.”

And a California dentist scolded a patient who accused him of misdiagnosing her. “I looked very closely at your radiographs and it was obvious that you have cavities and gum disease that your other dentist has overlooked. 2026 You can live in a world of denial and simply believe what you want to hear from your other dentist or make an educated and informed decision.”

Health professionals are adapting to a harsh reality in which consumers rate them on sites like Yelp, Vitals and RateMDs much as they do restaurants, hotels and spas. The vast majority of reviews are positive. But in trying to respond to negative ones, some providers appear to be violating the Health Insurance Portability and Accountability Act, the federal patient privacy law known as HIPAA. The law forbids them from disclosing any patient health information without permission.

Yelp has given ProPublica unprecedented access to its trove of public reviews 2014 more than 1.7 million in all 2014 allowing us to search them by keyword. Using a tool developed by the Department of Computer Science and Engineering at the NYU Tandon School of Engineering, we identified more than 3,500 one-star reviews (the lowest) in which patients mention privacy or HIPAA. In dozens of instances, responses to complaints about medical care turned into disputes over patient privacy.

The patients affected say they’ve been doubly injured 2014 first by poor service or care and then by the disclosure of information they considered private.

The shock of exposure can be effective, prompting patients to back off.

“I posted a negative review” on Yelp, a client of a California dentist wrote in 2013. “After that, she posted a response with details that included my personal dental information. 2026 I removed my review to protect my medical privacy.”

The consumer complained to the Office for Civil Rights within the U.S. Department of Health and Human Services, which enforces HIPAA. The office warned the dentist about posting personal information in response to Yelp reviews. It is currently investigating a New York dentist for divulging personal information about a patient who complained about her care, according to a letter reviewed by ProPublica.

The office couldn’t say how many complaints it has received in this area because it doesn’t track complaints this way. ProPublica has previously reported about the agency’s historic inability to analyze its complaints and identify repeat HIPAA violators.

Deven McGraw, the office’s deputy director of health information privacy, said health professionals responding to online reviews can speak generally about the way they treat patients but must have permission to discuss individual cases. Just because patients have rated their health provider publicly doesn’t give their health provider permission to rate them in return.

“If the complaint is about poor patient care, they can come back and say, 2018I provide all of my patients with good patient care’ and 2018I’ve been reviewed in other contexts and have good reviews,’ ” McGraw said. But they can’t “take those accusations on individually by the patient.”

McGraw pointed to a 2013 case out of California in which a hospital was fined $275,000 for disclosing information about a patient to the media without permission, allegedly in retaliation for the patient complaining to the media about the hospital.

Yelp’s senior director of litigation, Aaron Schur, said most reviews of doctors and dentists aren’t about the actual health care delivered but rather their office wait, the front office staff, billing procedures or bedside manner. Many health providers are careful and appropriate in responding to online reviews, encouraging patients to contact them offline or apologizing for any perceived slights. Some don’t respond at all.

“There’s certainly ways to respond to reviews that don’t implicate HIPAA,” Schur said.

In 2012, University of Utah Health Care in Salt Lake City was the first hospital system in the country to post patient reviews and comments online. The system, which had to overcome doctors’ resistance to being rated, found positive comments far outnumbered negative ones.

“If you whitewash comments, if you only put those that are highly positive, the public is very savvy and will consider that to be only advertising,” said Thomas Miller, chief medical officer for the University of Utah Hospitals and Clinics.

Unlike Yelp, the University of Utah does not allow comments about a doctor’s medical competency and it does not allow physicians to respond to comments.

In discussing their battles over online reviews, patients said they’d turned to ratings sites for closure and in the hope that their experiences would help others seeking care. Their providers’ responses, however, left them with a lingering sense of lost trust.

Angela Grijalva brought her then 12-year-old daughter to Maximize Chiropractic in Sacramento, Calif., a couple years ago for an exam. In a one-star review on Yelp, Grijalva alleged that chiropractor Tim Nicholl led her daughter to “believe she had scoliosis and urgently needed x-rays, which could be performed at her next appointment. 2026 My daughter cried all night and had a tough time concentrating at school.”

But it turned out her daughter did not have scoliosis, Grijalva wrote. She encouraged parents to stay away from the office.

Nicholl replied on Yelp, acknowledging that Grijalva’s daughter was a patient (a disclosure that is not allowed under HIPAA) and discussing the procedures he performed on her and her condition, though he said he could not disclose specifics of the diagnosis “due to privacy and patient confidentiality.”

“The next day you brought your daughter back in for a verbal review of the x-rays and I informed you that the x-rays had identified some issues, but the good news was that your daughter did not have scoliosis, great news!” he recounted. “I proceeded to adjust your daughter and the adjustment went very well, as did the entire appointment; you made no mention of a 2018misdiagnosis’ or any other concern.”

In an interview, Grijalva said Nicholl’s response “violated my daughter and her privacy.”

“I wouldn’t want another parent, another child to go through what my daughter went through: the panic, the stress, the fear,” she added.

Nicholl declined a request for comment. “It just doesn’t seem like this is worth my time,” he said. His practice has mixed reviews on Yelp, but more positive than negative.

A few years ago, Marisa Speed posted a review of North Valley Plastic Surgery in Phoenix after her then20133-year-old son received stitches there for a gash on his chin. “Half-way through the procedure, the doctor seemed flustered with my crying child. 2026,” she wrote. “At this point the doctor was more upset and he ended up throwing the instruments to the floor. I understand that dealing with kids requires extra effort, but if you don’t like to do it, don’t even welcome them.”

An employee named Chase replied on the business’s behalf: “This patient presented in an agitated and uncontrollable state. Despite our best efforts, this patient was screaming, crying, inconsolable, and a danger to both himself and to our staff. As any parent that has raised a young boy knows, they have the strength to cause harm.”

Speed and her husband complained to the Office for Civil Rights. “You may wish to remove any specific information about current or former patients from your Web-blog,” the Office for Civil Rights wrote in an October 2013 letter to the surgery center.

In an email, a representative of the surgery center declined to comment. “Everyone that was directly involved in the incident no longer works here. The nurse on this case left a year ago, the surgeon in the case retired last month, and the administrator left a few years ago,” he wrote.

Reviews of North Valley Plastic Surgery are mixed on Yelp.

Health providers have tried a host of ways to try to combat negative reviews. Some have sued their patients, attracting a torrent of attention but scoring few, if any, legal successes. Others have begged patients to remove their complaints.

Jeffrey Segal, a onetime critic of review sites, now says doctors need to embrace them. Beginning in 2007, Segal’s company, Medical Justice, crafted contracts that health providers could give to patients asking them to sign over the copyright to any reviews, which allowed providers to demand that negative ones be removed. But after a lawsuit, Medical Justice stopped recommending the contracts in 2011.

Segal said he has come to believe reviews are valuable and that providers should encourage patients who are satisfied to post positive reviews and should respond 2014 carefully 2014 to negative ones.

“For doctors who get bent out of shape to get rid of negative reviews, it’s a denominator problem,” he said. “If they only have three reviews and two are negative, the denominator is the problem. 2026 If you can figure out a way to cultivate reviews from hundreds of patients rather than a few patients, the problem is solved.”

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Docs reject Harvard jobs because of conflict of interest policy?

Well, that’harvard meds  what Dr. Peter Slavin, president of Massachusetts General Hospital, told STAT news in a story about Harvard’s revised conflict of interest policy:

Slavin said the change may help with a recruitment problem: “Some faculty don’t come because they perceive that Harvard Medical School has rules that are much too restrictive.”

Or they leave, according to Gretchen Brodnicki, dean for faculty and research integrity.

 Brodnicki said she has heard anecdotes of faculty leaving, or being unable to conduct specific studies, because of the rule, though she said the impact is hard to measure.

Here’s the new rule:

First, the school is raising the thresholds: Faculty will have to receive at least $25,000 in income (up from $10,000), or hold $50,000 in equity of a publicly traded company (up from $30,000) to trigger the prohibition on clinical research. Faculty still cannot hold any equity in a privately held company if they want to do clinical trials on that company’s product.

Second, the school will now allow faculty to petition for an exemption if they’re over those thresholds and still want to do the research.

 

#STATnews asks: Are #Alzheimer’s numbers inflated?

CaptureIn her “Gut Check” column, STAT’s Sharon Begley notes that a NEJM report  from Boston University’s Framingham Heart Study claims that “The percent of people developing dementia each year is falling significantly… raising hope that some cases can be prevented and, possibly, that the worst forecasts of a “looming dementia crisis in the United States are overblown

The study notes that other evidence has the Alzheimer’s Association “sticking with its projection that, by 2050, the prevalence of Alzheimer’s will nearly triple, to 13.8 million Americans.

… The reluctance to dial down those forecasts might reflect “public health catastrophism,” added Dr. Jeremy Greene of Johns Hopkins, who, together with Jones, coauthored an accompanying perspective article on the Framingham study.

“It’s risky for advocates [to temper the most dire forecasts] for fear that it might bring a loss of funding,” Greene said.”

For more on this, see this list of stories on the topic of pharmaceutical support for non-profit patient groups. A bit dated, but USA Today offered an update in January.

Health charities say they work with drug companies in the search for cures. Corporate support is a standard form of fundraising for non-profits. The stories linked above question whether those relationships — and the dollars that come with them — bias these health groups. Will they challenge the efficacy of a new drug if they get tens of thousands from the drug’s  maker?

So, how much does the Alzheimer’s Association get from drug makers?  No one knows –non-profits are not required to report donations. Deep into its annual report, you’ll find a list of donors, but not exact amounts of donations.

$100,000-$249,000

Include:

Actavis

Amgen Foundation

AstraZeneca

Axovant

Biogen Idec

Eli Lilly

Forum Pharmaceuticals

Genentech/Roche

Janssen Pharmaceutical

Merck

Some of the same companies sponsored the group’s annual conference.

 

 

 

Partners’ Kvedar’s new book on “The Internet of Health Things”

Joseph  Kvedar, the VP of Partners’ Connected Health Program was on to  “The Internet of Healthy Things” way before any of the rest of us.  Now he’s collected his thoughts — aimed a “business executives” — in a new book.

More video from this year’s connected health conference here.

 

#APEC15 Emergency docs gather in Boston for annual meeting

Looking for Boston Globe health reporting? Try the business section

ssUPDATE: Props to Beta Boston, another source of Globe health reporting.

Since the Globe currently has no full-time health and science editor, no science writer and a hard-to-find, often dated health site, we turn to the business section for news on health, or at least health finance and pharma. Perhaps things will pick up in the fall.

In terms of Globe-ish  health-sci-ish  reporting, we see STAT continuing to pop up in the paper and the paper’s website but not the STAT website. The business section of the print version of today’s paper premieres a weekly column called Kendall Squared. Today, Andrew Joseph reports on the rebranding of the square-less square, the sale of dishes at the closed Hungry Mother restaurant, a Forsyth Institute dentist who runs a children’s clinic in Kuwait and a non-profit dispute resolution group that is being prices out of the Square.

In the meantime, best to follow individual members of the Globe‘s shrinking but solid Metro sci-health team:

Kay Lazar @GlobeKayLazar

Liz Kowalcyk @GlobeLizK

Felice J. Freyer @felicejfreyer

And, check the business page. The state Center for Health Information and Analysis has come out with it’s latest hospital profits report and today, The Globe helps sort it out for us.

The state’s biggest hospitals were the most profitable in 2014, with Massachusetts General Hospital, the largest academic medical center, earning $200 million, up 34 percent from the previous year, and Brigham and Women’s Hospital earning $152 million, up 9 percent. Both are owned by Partners HealthCare of Boston.

Other big earners were Baystate Medical Center of Springfield, Lahey Hospital and Medical Center in Burlington, Saint Vincent Hospital in Worcester, and Beth Israel Deaconess Medical Center in Boston. The results are for fiscal year 2014, which for most hospitals ended last September.

The profits overall, however, mask some of the struggles in the changing field. Quincy Medical Center lost $39 million last year, the most in the state. Its owner, Steward Health Care System, closed the hospital at the end of the year. North Adams Regional Hospital in the Berkshires closed several months earlier. The push to cut costs has, in part, prompted several hospitals to consider mergers or acquisitions.

Earlier this week, the paper reported that the advent of ACOs has cut Medicare spending at five major health systems in the state

New figures show five Massachusetts health systems saved a combined $141 million during that period as part of the program, which aims to rein in costs by better coordinating care for Medicare patients and cutting unnecessary hospital stays and medical services. Doctors manage care for these patients in pools known as Pioneer accountable care organizations.

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