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In Praise of Lisa Bonchek Adams, Breast Cancer Expert


The two columns by Bill and Emma Keller about Lisa Bonchek Adams unleashed fury this week from supporters who questioned the manner in which Adams, who has metastatic breast cancer, “lives her disease” through her blog and Twitter feed.

Amid reams of articles, blogs, tweets and Facebook posts, patient advocate and breast cancer survivor posted Liza Bernstein grabbed our attention for posting a brilliant yet simple observation. Responding to an article in Gigaom, Bernstein noted that Bill Keller wrote this of Adams:

“Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out…”

And Keller went on to describe what those experts thought.

Bernstein and other e-patients know well that Lisa Adams is an expert. In her response, Bernstein said that while Adams “is not a doctor or a researcher, [she] is a highly engaged, empowered, and educated patient who, as far as I know, has never shared her story lightly.”

Perhaps unintentionally, Keller’s supposition that Adams is a “comfort” to other patients compared with the analysis he provides from “cancer experts” marginalizes what people like Adams bring to others affected by cancer.

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Fee for Service vs. Fee for Serving

In a previous blog we demonstrated how guidelines can compromise the care of individual patients when designed to serve the health care system.

Why should treating physicians defer to guideline committees at all, we asked? For decades medical students have been taught to read and understand information from published papers.

We are all trained in critical appraisal and can keep up with the clinically meaningful literature, the literature that is relevant and accurate enough to present to patients. Just because there are nearly 20,000 biomedical journals does not mean that any, let alone all are replete with meaningful information. We can discern the valuable from the not valuable; why do we need others to tell us?

In fact, we even argued in our last post that patients can and should judge the value of medical information. After all, they face the consequences of misinterpreting the likelihoods of benefit and of harm associated with various options for care.

No one remembers the numbers that describe the chances for benefit and harm or ask more questions about the veracity of information than a patient who must choose. The smartest information managers we have ever encountered are our patients; when informed, they quickly determine the validity of the information and apply their personal values to the estimations of the chances for benefit and harm.

Patient Empowerment

Take the example of a patient who recently entered into a therapeutic dialogue with one of us, RAM. This was not the traditional clinical interview. This patient had been diagnosed with prostate cancer and was scheduled for an approach to treatment that the diagnosing physician had offered as the most sensible. However, the decision did not rest easily.

The appointment with RAM was scheduled because the patient sought a dialogue that might offer a chance to reflect on the rationale for the approach he was about to initiate. Two hours into the dialogue, the patient, a 40ish year old African-American man accompanied by his wife, were mulling over the marginal benefits and harms of the options for treating an early stage prostate cancer.

The wife asked how many African-Americans were in the study under discussion. “None”. The husband perked up and then asked, “How many people in the study was my age?” “None”. They then asked if the difference in benefit was a certain, fixed amount? “No, it varies over this range.” – examining the descriptive statistics.

They then asked when the study was started and did it pertain to the present day. “It started over 15 years ago” and the stage of disease of the men in the study was generally more aggressive than in this particular case.

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Dr. Aetna Will See You Now

The ever-blurring line between the practice of medicine and the business of profiting from unhealthy lifestyles was crossed again Wednesday, as Aetna announced a collaboration with two pharmaceutical companies to pitch their prescription weight loss drugs to selected Aetna members.

This announcement crosses multiple lines, not just one. First, no insurer has ever announced that it would openly direct a specific class of members to use particular proprietary drugs. Disease management (DM) programs rarely recommend specific drugs, and certainly in the exceptionally rare instances when they do, the recommendations are not specific brand-name drugs (in this case, Arena’s Belviq and Vivus’s Qsymia).

Instead, DM focuses on improving compliance with existing drug regimens, and DM firms encourage members “talk to their doctor” about changing therapies. While DM companies shy away from directing patients to specific products, physicians and pharmacists have discretion to discuss the full range of covered generic and brand products with patients, in order to optimize therapy and close algorithm-identified care gaps.

Second, there are no generally accepted care algorithms (other than those created by the manufacturers of those products) for these two drugs in the treatment of obesity. So there is no “gap” to fill. If there were an accepted protocol, these drugs might be blockbusters but instead Belviq’s recent quarterly sales were an anemic $4.8-million, “well below even reduced Wall Street expectations,” while QSymia sales are “flailing” at $6.4-million for the same period.

Obese people and their physicians seem to be avoiding these drugs in droves. Regardless of what Aetna and the manufacturers believe about their effectiveness, or whatever promotional deal they’ve cut, market reaction is telling a different story, and unfortunately for Aetna, Vivus, and Arena we live in a market economy.

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The People’s Hospital

I was just recently in Guiyang, the capital of the Guizhou province in China and had a chance to visit the Huaxi District People’s Hospital (HDPH), one of the largest “secondary” hospitals in the province.

Like the rest of China, it has been gripped by the construction boom, recently opening a new surgery center and revamped medical facilities.  They had a terrific EHR from a local vendor — probably more sophisticated than a majority of U.S. hospitals.

Despite being in one of the poorest regions of China, the hospital has more money than it knows what to do with (so says its leadership) and is planning further expansion. The source of its wealth?  A growing middle class that wants more healthcare services and has the ability to pay for it.

Background on hospitals in China

There are approximately 2853 counties in China across 33 provinces.  Each county has a county hospital, a government owned facility that serves the people of that community.  When the patient is too complicated to be managed there, he or she is transferred usually to a secondary hospital.  Patients who need an even higher level of care are sent to the regional tertiary care hospital.  The gatekeeping system is weak – one need not start at the county hospital – and in fact, a majority of the inpatients at GPH came there directly.

A few years ago, China launched a major health reform with the goal of getting to universal coverage.  They got close and nearly every citizen now has health insurance that covers at least part of the costs of their care.   The insurance has substantial co-pays and doesn’t cover more expensive drugs and tests.  What does this mean for a hospital like HDPH?  About 40% of their revenues came from insurance.

And, despite being a government hospital, only about 5% of revenues came from the government.  The rest?  From the patients themselves.  This revenue mix is supposedly pretty typical of county and secondary hospitals across the nation. Out of pocket spending remains substantial, despite universal health insurance.  In fact, in absolute dollar terms, patients are paying about as much out of pocket now as they were before social insurance kicked in.

Huaxi District People’s Hospital

Outpatient clinics, where a typical appointment might last 2-3 minutes, are by far the biggest source of admissions to the hospital.  But the hospital also has an ER.  Actually, two: a Medicine ER and a Surgery ER.  The patient gets to choose.  Unsure about which you need? There is an “Enquiry” nurse who can help.  I peppered the one on duty with various clinical scenarios and was impressed with the speed and confidence with which she made decisions.

The flow is simple: you choose your ER, you register, pay the fee in cash, and go inside to wait.

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We Signed Up for a Plan in December. Now They Are Telling Us a Glitch Canceled Our Payment. What Do We Do?

A THCB reader in California writes in…

“As it happens my husband has medical issues so we know to stay on top of our heath care. Our insurance canceled us after years of paying high premiums. We were happy with the coverage and our doctors. We just did not have maternity or pediatric, dental [care].

We are 64-62, children in their 40s. No need there.

They offered us a policy that was $1750 per month with deductibles and out-of-pocket costs no one would ever reach. We went on Covered California to find a policy. We found one with the same company so we thought our doctors and hospital would be in-network, paid the premium Dec 4, and left for Christmas out of state feeling pretty safe.

When we returned we received a letter from Blue Cross stating that they did not receive our payment. And so our metal anguish starts!

I called, was on hold three hours. The system hung up on me [and] called back. Was on hold two hours with Covered CA. When someone came online we spent another hour trying to locate the application. They said that Covered CA had a glitch in the system that was duplicating people. We had three people on our application that was why Blue cross did not take our payment. They said they fixed it took another payment and promised all would be fine.

Went to get my husband’s medication to find out we were not covered. He had to have the meds. Came home and spent eight hours on the phone between Blue Cross and Covered CA trying to fix it. They told me to pay out of pocket for my husband’s medication until they fixed the problem.

I told them that my husband had a doctor’s appointment on Thursday that we could not postpone. It was with his Cardiologist. They had no idea except to pay-out-of-pocket. Went to the appointment, the doctor said he needed an operation NOW.

We told him about the insurance issues and had to postpone the operation until the next Friday hopefully the insurance would be in force by then…”

If you have questions about the Affordable Care Act or your buying insurance on the federal state exchanges, drop us a a note. We’ll publish the good submissions.

Providers, Trackers, & Money: What You Need to Know About Health 2.0

The cloud, web, and mobile-based technologies developing in health that we call Health 2.0 had a big year in 2013 and look to be continuing full steam ahead in 2014.

Three things to know as the year takes off:

1. Professionals Facing Growth

Health 2.0 tools have been primarily consumer facing, but we’re beginning to see the gradual integration of Health 2.0 tools for professionals at the edges of the enterprise world in realms like patient care communication (WelVu), practice management (Simple Admit), and clinician workflow (Zipnosis).

Population health management in particular is an area where Health 2.0 companies (PhytelEvolent) are experiencing relative success answering new demands from provider organizations needing to manage patient populations in different ways. Traditional enterprise software has not been designed for this type of challenge.

While Health 2.0 infiltrates the edges of the enterprise world, professional facing Health 2.0 tools are making significant inroads into the core workflow of small practice organizations. Practice FusionCareCloud, and Kareo are a few examples of companies making progress in this market.

2. Wearables and Trackers Explode, Divide

The tracking space continues to grow explosively with the addition, by our estimates, of around 100 new tools for self-management or tracking in 2013, and a whole slew of new tools that debuted at CES 2014. However, the tracking and wearables world is experiencing a division between consumer-oriented products and those with more clinical applications.

The consumer side of the equation is rife with interesting technology, including watches, clips, cuffs, and sleep tracking devices. Google’s latest purchase of Nest is vaguely related to this space as innovators continue to move towards smart tracking of the body and human activity generally. Of course, we are at the top of the hype cycle regarding wearables, but in general, tracking is growing rapidly and is increasingly becoming more passive and automatic in nature.

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New Data on ACA Enrollment Shows Problems in Many States

The Department of Health and Human Services released updated data yesterday on enrollment on the Exchanges including, for the first time, greater breakdowns on enrollment by several key categories: age, gender, and the metal level of purchase.

The result of this long awaited and much requested data is, at first glance, very much a mixed picture. Some of the overall statistics do not look as problematic as some — including me — had feared they might be. But it looks as if there is a very serious potential for large adverse selection problems brewing in a number of states,  most notably West Virginia, Mississippi, Maryland and Washington State.

The good news for the ACA from the data

There are three major pieces of good news for those who support the goals of the ACA.

1. The overall gender distribution of enrollees, 54% female, 46% male does not appear on preliminary inspection to be sounding “red alert.” To be sure, the problem may be a little greater than would otherwise be suggested by the aggregated numbers if the middle age group is more heavily female and the oldest group of enrollees more heavily male that the aggregated numbers suggest.  And Mississippi is troubling with 61% female enrollment (and for other reasons, see below).

But, overall, and if they hold up, these do not appear to be the the kind of numbers that would be way beyond what insurers likely expected or that, standing by themselves, would be devastating to an insurer on an Exchange.

2. Several states have total enrollments and the age distributions that should reduce the possibility of a serious death spiral getting started. New York and California are the two big states doing better than most.  Connecticut is doing very well also.

3. The metal tier distribution is 80% for Bronze and Silver policies and only 20% in Gold and Platinum. That’s comforting for adverse selection. A higher proportion of enrollment in the more generous plans would have been a warning sign that enrollment was coming disproportionately from the sick.

There’s a footnote on this point later on — we are not out of the woods — but this is definitely better news for the ACA than a distribution of, say, only 50% Bronze and Silver purchases.

The bad news

Just because the ACA is doing better than some had forecast on an overall basis does not mean there will not be very serious problems in some states.  Given that the statute is presently unamendable as a practical matter, problems in just a few states can hurt a lot of people.

The data released by HHS yesterday shows that there are a number of states in serious trouble.

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To Buy Or Not to Buy

Now that consumers can generally make an efficient health insurance purchase at HealthCare.gov and most of the state-run exchanges, we can finally get to the real question.

Are the healthy uninsured going to buy it?

The big health insurance changes Obamacare made to the individual and small group market were arguably done in order to get everyone, sick and healthy, covered in a more equitable system.

To be clear, no one I know of wants to go back to the prior health insurance market that excluded people from being covered because of pre-existing conditions.

But what if most of the uninsured literally don’t buy Obamacare?

Then people will question whether or not all of this change was worth it: Why did those who were in the old individual and small group market have to accept all of the expensive changes, narrower networks, higher deductibles, and fewer choices if the uninsured largely don’t want it?

Are we moving away from a system where only the healthy could buy health insurance to a system where only the sick want to buy it?

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Actually, I Love My EMR …

One of the spinoffs of being an oncologist is that you do not to take the world for granted.  Each morning, I walk around the yard and smell the morning breeze. I am thankful for my children, my wife and my own health.  I am thrilled, if occasionally skeptical, to have the opportunity to pay taxes in a Country that I love.

So, who would believe I would take our Electronic Medical Record (EMR) for granted?

I know, shocking, isn’t it?  How could I overlook a key factor in the success of our practice, ever since we ditched paper records, 13 years ago? Nevertheless, it is true. Day-by-day, the keyboard and screen became just another device, like a stapler, paintbrush or pocket comb.   I began to use it out of simple necessity, and neglected to sit in awe of its power and glory. I ask the geeks of Silicon Valley to forgive me.

We have been binary in our office for a long time, but not in our main hospital.  In the office, everything flows by electron, but at the hospital we have been using a kind of EMR-light, call it E-decaf.  Maybe we turn on the machine to check a few labs, order the occasional test, and perhaps send an email.  Thus, even though the docs of our practice spend more than a hundred-fifty hours a week on the wards taking care of 60 patients a day, we were still paper-binder-chart-bound.

But, last week it happened … we crossed the Rubicon … in a blinding flash of bits and bytes, clicks and clacks, copy and paste, we went full-on-no-holds-barred, every-piece-of –data-for-itself electronic and converted to the EMR.  It was glorious!

In the hospital, I had long gotten used to the appalling inefficiencies of the crayon and papyrus world.  First,  find the chart ( good luck… I am sure I have lost a year of my life hunting ). Then, read the prior notes ( which for many doctors, including yours truly, is impossible ).  Find the labs.  Find the X-ray reports.  Check the images.  Call the lab and radiology for the labs for the results that you could not find.  Seek and then check the vital sign clipboard.  Read the I&O record (different clipboard).

Now, there’s time, barely, to see the patient.

Then, painfully, ridiculously, illegibly, write down what you just found, repeating everything you also wrote yesterday (except what you forget or can’t read, which is probably critical) and then put the chart back in the rack (maybe), so that the next doctor can start this whole process over again.

You think I am kidding? Exaggerating? Not the tiniest bit. What I described is what every doctor using chisel-stone-tablet records does every day with every patient and if you have a lot of patients in the hospital it takes a very long wasteful time and is guaranteed to result in error.  Ask any doctor to pull any binder at random from any chart rack anywhere and read it carefully and there is an almost 100% chance you will find a mistake in that record.

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Now I Have Insurance. But I Can’t Use It. What Am I Supposed to Do?

A THCB Reader in New York City writes in to say —

“I am a self employed psychotherapist in New York City. I had health insurance through December 31st when my policy was canceled.

I bought an ACA policy in mid-November and had to fight to obtain my insurance identification number the entire first week of January. I did not receive my id number until January 9th.

Now, I still can’t use the insurance — even though I have an id number — because none of the doctors that I know who are actually taking the insurance have been placed on Blue Cross’s website as being in the ACA plan network.

Thus, I can’t change my primary care and I can’t get a referral for my pain management specialist (I have nerve damage in my spine due to a surgical complication). So, I have an insurance policy but I can’t see my doctors who have decided to take the ACA insurance. I essentially have purchased insurance that I cannot use at the present time and I don’t know when I will be able to use it unless I go to the few doctors they have put into their system.

I have been talking to the New York State Department of Health and so far, their aid if you will call it that, has been useless. I am still left with having to pay out of pocket to see my pain management doctor onJanuary 15, 2014.

This is something no one is talking about — that those of us who were insured, who have tried to keep some doctors, who have inquired and found doctors who say they are taking the insurance — that utilizing these new policies due to referral requirements is next to impossible.
Many of the doctors listed on their networks do not exist. I have called many of them. My guess is this will be talked about in two to three months when more people find they can’t use their policies. BUT NO ONE IS TALKING ABOUT IT NOW and it’s driving me crazy because it is happening now.

The government representatives I have contacted and asked for help are of no help. They have no plan in place to deal with these problems and they don’t appear to think the problem of not being able to see your doctor is important enough to deal with. Since it’s not happening to them, well, you know….”
If you have questions about the Affordable Care Act or your buying insurance on the federal state exchanges, drop us a a note. We’ll publish the good submissions.
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