This story from PBS Newshour clearly shows how important it is to ask questions, and shop around, when it comes to prescription drug prices.
Think a generic drug guarantees a lower price? Not so much. Watch this story, and learn how the same generic drug can cost anywhere from $11 to $455. The best way to get the lowest price? The same way you shop for shoes, or appliances: research online, ask local retailers, and make an informed decision.
It was recently revealed that an Excel error contributed to the European fiscal crisis, and a continuing global economic recession/depression. Paul Krugman called the revelation the Excel Depression in the NY Times. Certainly lives are at stake when the success or failure of large economies are at risk, but not nearly as many lives as are at stake every day given the lack of transparency (and even, in some cases, plain truth) in bioscience research and medical outcomes reporting.
Ben Goldacre gave a barn-burning TED talk, “Battling Bad Science,” in 2011. He gave another one in 2012 in which he called the data manipulation in scientific research the “cancer at the core of evidence-based medicine.” His point? We cannot make a meaningful decision in the absence of ALL the data.
Tim Berners-Lee, the man who invented the actually-useful-to-humans WWW part of the Internet, has consistently called for raw data – ALL the raw data – NOW.
Paul Levy, the former CEO of Beth Israel Deaconess Hospital, recently blogged about the failure of the Journal of Pediatric Surgery to reveal, in a report on a surgery for sunken-chest deformity, a widely-reported death of a teenage boy after said surgery, even though that boy’s case is used as an example of avoidable medical error in safety bootcamps for medical interns and residents. Boggles the mind, doesn’t it?
Even if the data is fully reported, the PR geeks who write up the announcement of results might get that report 100% wrong. Witness the recent contretemps over a University of Chicago study on patient engagement, shared decision-making, and healthcare cost control. A full outline of that mess, by ePatient Dave deBronkart in Forbes, will give you 411 on that story. The Cliff’s Notes: it was a post-discharge survey, not a full study; it measured attitudes, not outcomes; and the press release was sent out on a holiday weekend, ensuring both pick up (slow news cycle) and lack of follow up.
Given the general public’s lack of understanding of science, the scarcity of journos who can interpret same for said general public, and the scale-thumbing going on in bioscience research, what’s to be done to reverse this disease-mongering and full-on prevarication (look it up) trend?
Stetho-Snopes
How about a Snopes.com for medicine? We could call it … Stetho-Snopes. There’s certainly enough interest in the subject on the part of people and organizations. The challenge is to take all the small villages of interest across the globe and give them a repository for what they find, and what they can debunk.
Ben Goldacre is walking his own talk with an effort called AllTrials, a petition that’s demanding open data from all sources of medical research. Organizations like the Robert Wood Johnson Foundation are working on making medicine and healthcare more transparent and accessible for patients. The Society for Participatory Medicine‘s membership is committed to the same mission: transparency and collaboration across the continuum of care.
How about we all band together and make RAW DATA NOW a reality in medicine? GIMME MY DaM DATA. Now.
I’m still recovering from the month of May. I was all up in the healthcare, pretty much 24/7, which differs not-much from my usual roll, other than that in the period of three weeks, I was in DC for eight of 21 days, May 14 through June 5, attending HM13 (the annual meeting of the Society of Hospital Medicine, which I covered for The Hospitalist magazine podcasts) and Health Data Palooza IV as just-me on a Consumer Circle scholarship.
What I saw and heard at both conferences made me hopeful for the future of healthcare … sort of. As inspiring as both of them were, I found the SHM conference more of a hope engine for just-e-patient me than the rah-rah tech-fest that was #hdpalooza. Granted, HM13 was organized and run by the medical society that has a big upward swing on its membership, and on the income of said members, which means that there was a breadth and depth of content that wouldn’t be available at non-clinical conferences.
I got plenty of mental floss out of both of them. Here are the high (and low) lights:
Best of the Best at Health Data Palooza? AthenaHealth CEO Jonathan Bush’s keynote, where he was by turns hilarious, pointed, inspiring, and infuriating – all good things, as far as I’m concerned. His best line? “Obama was right. There, I said it.” After which he went on to again call the feds on the carpet for lack of testicular fortitude when it comes to setting up a national health data system. He has a great post on The Health Care Blog about his time on the platform, and his message.Still glaringly missing from all of this rah-rah is the actual, real-world voice of the patient – HM13 can be (somewhat) forgiven for that, since it’s a medical society annual conference. I will note that, in all my interviews for HM13 podcasts, the question, “How can patients help?” was warmly welcomed by everyone asked, and answered with enthusiasm and insight. Figuring out how to break the walls down between clinicians and patients – “gimme my damn data,” two-way edition – using health IT systems as the wedge seems to be a place to start. But letting patients help there is utterly crucial.
Speaking of sitting too long … time for a bike ride to my polling place to vote in today’s off-year election primary in my state. I’m voting for a guy who’s worked on opening up health data. Win/win … ?
I had the great good fortune of being asked (by WEGO Health) to participate on a panel titled Social Media for Pharma: A Match Made in Heaven or Hell?at the ePharma Summit in New York (#epharma) earlier this week. When the opportunity presented itself, I asked to be registered for the whole event so I could do my fly-on-the-wall thing by attending some sessions and schmoozing in the exhibit hall.
What did I learn? I learned something I already knew: pharma, and healthcare in general, talks a good game at the corporate level about “engagement” when it comes to patients. However, their use of the word tends to run along engagement-as-shiny-object-syndrome lines; in other words, passive message consumption is the desired model, since two-way dialogues are problematic, with pharma afraid of FDA bitch-slaps in the form of warning letters and healthcare in general sweating bullets about the powerful bitch-slap known as the HIPAA violation, given the $1.5M fine potential.
I understand their aversion to drawing the gimlet eye, and the ire, of the feds when they’re considering how to communicate with their marketplace. Pharma is a conservative, slow-to-innovate business that’s focused on shareholder value and ROI for said investors, given that they can spend billions developing a new drug for market before they can sell the first pill of said wonder drug. At least, that’s what pharma balance sheets and annual reports tell us.
Pharma is anxious to open dialogues with its customers – the real customers, patients – but isn’t sure how to go about doing that without winding up in deep kimchee with federal regulators. That was the purpose of the panel I was on: to let pharma know what kind of conversation patients were looking for, and what we’d like to hear from the pharma industry. Our group members were:
We all said that we would welcome some real dialogue with pharma: not sales language, but human language. Stop telling us to “ask our doctors about” – which is useful, but only half of the conversation equation. Pharma should ask patients how and if they – pharma and its products – are actually helping. The snowflakes in the post title aren’t the snowflakes that flurried a bit in New York on Thursday, they’re from my exhortation from the podium (and everywhere else):
“If we’re all snowflakes, unique in our genomic makeup and completely different from any other human on the planet, where’s my snowflake medicine?”
I know that snowflake medicine is not only possible, it’s here: pharmacogenomics is a new science, but it’s in commercial use and has been for a few years. I’d like to know why it isn’t part of every single prescription decision, but I’m an impatient early adopter. I know that pharma is still operating on a population health model, but that is so 20th century, dudes. Real innovation is already happening, yet pharma’s business model is still in “find the blockbuster drug that works OK in 60-70% of the population with Disease X, and we’re in the money!” mode.
My prescription for pharma execs is to read Eric Topol‘s The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care– that will both scare them to death (no more population-based medicine) and show them the map to the future (agile development of targeted therapies). Give me and everyone else our snowflakes: many of us are literally dying to get hold of ’em.
My takeaway from #epharma? Patients are still seen as exotic creatures by pharma, but I sense that they’re anxious to learn more about us beyond our diagnoses. My recommendation: Look for influencer patients in the health communities that use your products. Open a one-on-one dialogue with them, ask them how your products are perceived. Explore opening up some private-channel community conversations (NOT on social media!) that can involve your clinical team, doctors who prescribe your products, and the patients that take them. Listen and learn.
If you need help wrangling internet and social rules for pharma out of the FDA, tell us – patients – what you want to accomplish, and let us storm the castle. Embrace the snowflakes. Avoid the bitch-slaps. Help create better global health. Patients are the only real blockbuster drug left in the 21st century.
Thanks for listening.
Last week’s post called medicine in the U.S. a monopoly. I took some heat for using that metaphor from some of my economist and journo colleagues, and realized that I needed to make a clarification: Medicine is a game of Monopoly, not a true economic monopoly. My very-snark-infested point was, and always is, that the pricing model in healthcare in this country is about as fair as a crap game or, perhaps, a round of Monopoly.
More grist for my point arrived this week in the form of a TIME special feature, Bitter Pill: Why Medical Bills Are Killing Us. In it, reporter Steven Brill walks the reader through the chaos behind a veil of secrecy in healthcare pricing, starting with an under-insured man’s treatment at MD Anderson Cancer Center in Texas, which involved waiting – while wracked with the chills and fever caused by his non-Hodkin’s lymphoma – in a crowded hospital reception area until the check for his treatment cleared. He wound up having to use a credit card to pay $7,500 toward his medical costs before they’d initiate his chemotherapy. By the way, MD Anderson is a non-profit hospital. A close review of that man’s hospital bills revealed a 400% markup on many of the cancer drugs in his chemo treatments.
Another example in the TIME feature is one involving a $21,000 false alarm – a woman was having chest pain, and was taken by ambulance to a local hospital. After testing, it was discovered that she was suffering from indigestion. The Medicare billing for the trip would have been around 80% less than what the woman – who didn’t have insurance – was billed for the hospital visit. However, since she was 64, and not eligible for Medicare, she was billed $21,000. Yikes.
At the root of the cost determinations in both of these cases is the hospital’s chargemaster list – the Great and Powerful Oz of that hospital’s billing structure. When pressed, hospital spokespeeps will say “no one pays those rates, they’re just a guideline” or “those lists have been around forever, we only use them as a reference” – but uninsured and under-insured people are asked to pay them. Hospital executive will also say that the pricing on the chargemaster list is justified by the fact that the hospital has to provide charity care to indigent patients. While it’s true that there are patients who can’t pay for the care they receive, the vast majority of patients are covered by either a private health plan, or Medicare, or Medicaid. The rates paid by those payers are negotiated with the hospitals. Why can’t an un- or underinsured person negotiate a fair cash price, too?
The TIME story is a great read – it’s long, but it’s worth every minute of the time it will take you to read it. One patient story that stood out for me: a union guy in his 30s, with severe back pain, was treated by having a spinal-nerve stimulation device implanted. An outpatient procedure, with the nickel-and-dime hospital chargemaster billing adding up to $87,000 – the device itself, which wholesales for $19,000, was billed to the patient at $49,237 – put the patient over his annual health insurance coverage limit of $60,000. He was on the hook for $47,000 of that bill. Again, yikes.
This trip down the medical billing rabbit hole pinged my radar in the same hour that a post by Brian Klepper on KevinMD.com did. It appears that the American Medical Association’s star-chamber price-setting committee, the RUC (about which I’ve ranted here before), has been given a pass by a federal appeals court in Georgia on having to hew to the same public-interest rules that govern other federal advisory groups. In other words, the AMA gets to continue to set healthcare prices by setting the dollar value assigned to each and every billing code in healthcare. Fox, meet henhouse. Again.
What was I saying about medicine not being a monopoly? Well, OK, it’s not a monopoly. But it’s sure a shootin’ a game of Monopoly, with hotels on every single street. And patients just have to keep paying up after every roll of the dice.
When you hear the word “monopoly,” does it fill you with a warm and fuzzy feeling? (Unless you’re Hasbro, you really should say no, unless you’re a cyborg.)
Healthcare is a monopoly. We can’t DIY cancer treatment, or surgically repair a broken hip for ourselves, so we have to go to the medical-industrial complex to regain our health if we wander into the weeds, health-wise. We also have deep difficulty accessing pricing information. I’ve talked about that here over the last few years. Maybe not a monopoly in the financial-reg sense of the word, but it sure is mighty like a game of Monopoly.
This “chaos behind a veil of secrecy” (all credit for that phrase belongs to healthcare economist Uwe Reinhart) has created the impression in healthcare customers that there’s no way to tell what something will cost before you buy it. You checks the box and takes yer chances. No Get Out of the Hospital Free cards. No pass-the-admissions-counter-collect-$200 option. That’s a rotten way to run a railroad (one of the original monopoly industries in US history), and an even worse way to run a hospital.
Dan Munro wrote about this, and the star-chamber cabal that actually sets the prices in healthcare, the RUC, on Forbes.com yesterday. I’ve talked about the RUC myself. And the search for price transparency, which seemed such an outlier activity just a couple of years ago, is now popping up in the Well blog on the New York Times site, as well as on Reuters. The Reuters piece has the addition bonus of quotes from my buddy Jeanne Pinder, founder of ClearHealthCosts.com. (Yesterday was a big day in medical price transparency.)
This is the central reason I registered the hashtag #howmuchisthat with Symplur, the healthcare hashtag registry. We all have to start demanding that prices be visible, and that the RUC stop cabal-ing around with our lives and our wallets. As more and more people are finding themselves with high-deductible health insurance, asking how much things cost before you make a healthcare decision will become the norm. If a healthcare provider can’t answer that question, s/he will find that s/he’s seeing the patient panel sinking fast, along with practice revenue.
Get with it, medicine. Remake your image, and your brand, to be clear as glass and user-friendly. Outcome metrics along with pricing would be really nice, too.
Last year’s look-ahead for 2012 was a 5-point manifesto. Reviewing progress against that list, I see that I did pretty well, with only #2 falling a little short – which is not a bad track record.
This year, I’m keeping it tight. I’m going with a 2-rule manifesto.
We’ve all got metrics to measure ourselves against. Revenue, connections, sales, errors, accomplishments – all of those are important. The trouble comes when you focus too much on one area, which usually means that other important metrics wind up taking a back seat.
If you focus exclusively on incoming revenue, you might miss some mistakes that will cost you at least some of that revenue. If you concentrate only on building more connections in the industry, you might lose some long-term relationships that are just starting to ripen.
For me, accountability this year will be tied to two metrics: raising the revenue gained from the speaking side of my business, and widening my marketing net beyond the mid-Atlantic region. Tracking both will be easy, and each will challenge me to focus very tightly on activities and outreach that will move my game-plan forward. Accountability – at least here at Mighty Casey Media – will be baked in to the spreadsheet I’ll use to track that game-plan.
What accountability will you bake in to your 2013 goals? How will you track your progress? Who will you report to? That last one is a challenge for me, since I’m a solo-preneur. Stay tuned, since one of my accountability check-boxes will be reporting progress here, on the Mighty Mouth Blog.
That’s a purposeful scrambling of the “wag more, bark less” bumper sticker I see … everywhere. My version of wagging is laughter. If I’m laughing, there’s less risk that I’ll be screaming. Given that one of my core purposes in life is working to effect positive change in the healthcare industry, I can wind up screaming pretty easily if I don’t keep myself in check.
Barking = screaming in my world. We’re all about avoiding the screaming wherever possible. That does not mean that I’ll dampen my ferocity. Hell to the no. What it does mean is that I’ll find ways to wrap the bitter medicine in a big lump of maple sugar. “Bitter medicine” is hard truth about how healthcare has to shift from paternalism and a gold-rush mentality; the lump of maple sugar (and my biggest challenge) is finding the humor that will make that medicine go down … without resorting to barking.
Those are my Simple Rules for 2013.
Happy New Year.
This week, NPR’s Marketplace aired a piece on what I have taken to calling the “black box of healthcare” – pricing. There is a committee, called the RUC, set up and run by the American Medical Association, that reports to CMS (the federal unit that runs Medicare and Medicaid) on relative value numbers for the thousands of medical procedures that wind up as billing codes in Medicare and your health insurer.
Those relative value numbers = PRICES. This isn’t considered price-fixing under anti-trust rules because the RUC reports to CMS, which then publishes the numbers on the Medicare reimbursement rate schedule. So the AMA isn’t publishing the prices, CMS is.
Fox, meet henhouse. Or, stated in another way: airplane, meet the black box that is making you crash and burn. The Marketplace page linked in the 1st graf has plenty of linkage to additional context for this issue. Read them, and weep.
How is it that an industry whose aggregate cost is now at close to 20% of US GDP gets to set its own prices, and then have them published by the federal government as The Official Price List?
It’s called effective lobbying, and it’s so effective that it’s essentially kept access to the pricing committee process a secret for decades. Which makes it pretty clear why so much of our GDP goes to healthcare, doesn’t it?
The sound bite in the story that I found the most hilarious was from Charlie Baker, the former CEO of the Harvard Pilgrim health plan in Massachusetts. His quote:
By having a process that for all intensive [sic] purposes isn’t a public process, and doesn’t appear to actually be accountable to much of anybody, I think that’s kind of un-American!
I find this hilarious because Harvard Pilgrim is a member of America’s Health Insurance Plans, the industry group that advocates (translation: lobbies) for health insurers, who also have their hands on the levers of healthcare pricing via reimbursement rates (granted, based on CMS’s published rates, which are based on the RUC’s relative value numbers). Which means that the very-American health insurance industry is a co-conspirator in this price-setting (-fixing?) game.
Healthcare pricing is such a black box that if a patient attempts to find out what something will cost before s/he has a medical procedure, s/he will be met with a blank stare, “I don’t know”, “nobody knows how to figure that out”, or some other version of “what?” that gets you no answer.
e-Patient Dave deBronkart has a terrific example of how shopping for healthcare can be done, even in the face of “what?” – click the link for the full story there. Patients acting on their own behalf to determine their economic exposure before they get medical care might begin to bend the healthcare cost curve IF they can get the price information.
Dave isn’t the only customer of the healthcare industry who’s looking for pricing, and answers to the variance in said pricing depending on who you ask. The LA Times had a piece in their May 27, 2012 business pages on how patients could negotiate cash prices at the hospital or in the doctor’s office that were far below insurance reimbursement rates IF they didn’t use their insurance.
As an industry, healthcare is deeply broken. Since the industry has been supported for decades by an economic model that hides pricing from its consumers – employer-based health insurance – the end users, patients, have no clear path to making informed choices based on quality and cost.
If you ran your business that way, you’d be out of business pretty quickly. It’s time to break the healthcare industry’s economic model – if ever there was a sector ripe for creative economic destruction, healthcare is that sector.
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