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cindywilliams

How Many Diseases Does It Take?

It is not a secret that I dislike tobacco companies. Intensely. I do not see the point of allowing them to sell a product whose value is all in the negative. I am appalled that we are looking for expensive ways to diminish lung cancer mortality before considering a complete ban on this disease promotion apparatus. Yet this story in the LA Times got my goat. Briefly, a woman who has smoked for years and has had smoking-related obstructive lung disease since 1989 decided to sue tobacco companies after developing lung cancer in 2003. The suit has been making the rounds in various levels of courts, since the defendants asserted that she had exceeded the 2-year statute of limitations following the onset of her smoking-caused disease, referring to the 1989 COPD diagnosis. However, the California State Supreme Court has ruled that she can still sue the manufacturers, since she filed her suit within two years of the lung cancer diagnosis. So, why am I bothered?

Well, here is the thing: once you develop lung disease, followed by periodontal disease, as this woman did, had she really remained unaware that cigarettes are bad? That they cause problems? Is it really possible to live in our world and NOT be aware that tobacco kills? And if she was aware and continued to smoke, whose responsibility is it that she developed lung cancer, hers or the manufacturer’s? Well, you say, but the tobacco companies are unethical and lied about making cigarettes more addictive by adding undisclosed ingredients. So, how are we, the consumers, to know? Well, this is pretty simple: We have free will, don’t we? And if you have the free will, you have to exercise some will power, no? Is this not what the human condition is all about? Continue reading…

Some Employers Already Sending Workers To Exchanges to Buy Health Insurance

Fed up with the unpredictable cost of health insurance for his small business, Mike Sarafolean last year made a dramatic change: Instead of picking a plan to offer workers, he now sends them to a “private exchange” or marketplace where they compare and choose their own insurance. And the amount his company pays toward coverage is capped.

Mike Sarafolean, CEO of Orion Corporation of Minnesota, last year joined a growing number of employers embracing a dramatic change in the way they offer health benefits (Photo by Andy King).

The move puts his St. Paul, Minn.-based company on the leading edge of a nascent trend that could shape how more employers offer and pay for their health benefits in the coming years. It is part of an ongoing evolution in job-based health benefits that is gradually shifting cost and responsibility to workers.

The private exchanges, mainly run by former insurance executives and employee benefit consulting firms, operate in more than 20 states.Continue reading…

Are We Entering an Era of Political Cooperation on Medicare?

There’s a chance that we’re starting to see a convergence of opinion on Medicare among Democrats and Republicans on Capitol Hill. I know the recent bickering makes this seem like an odd contention, but consider the following:

  • In recent decades Republicans have done a great job of tarring Democrats with the “tax and spend” label while being fiscally irresponsible themselves. Republicans criticized Carter era deficits, and then proceeded to run up much more startling deficits under President Reagan. Bill Clinton had us looking at surpluses(!) as far as the eye could see until W came in and sent the red ink soaring –partly through tax cuts but largely by boosting spending. When Republicans continued brandishing the “tax and spend” cudgel, Democrats figured they were suckers to go the Clinton route of fiscal responsibility and get no credit for it
  • We’re now at the point where the size of the national debt actually matters. The only way to bring it under control is to bring deficits down. This is something on which Republicans and Democrats can agree. So now you’ve got both parties committed to the idea of deficit reduction; that just hasn’t been the case before.
  • There are still big differences on how to do it, but approaches –at least on Medicare– are likely to converge once the challenge is faced in a serious way, i.e., with an eye toward solving the problem rather than pandering to one group or another. In the case of Medicare, Republicans are likely to move toward the Democrats’ position over time.Continue reading…

Rethinking IMS Health v. Sorrell: Privacy as a First Amendment Value

Today the Supreme Court will hear oral arguments in IMS Health v. Sorrell. The case pits medical data giant IMS Health (and some other plaintiffs) against the state of Vermont, which restricted the distribution of certain “physician-identified” medical data if the doctors who generated the data failed to affirmatively permit its distribution.* I have contributed to an amicus brief submitted on behalf of the New England Journal of Medicine regarding the case, and I agree with the views expressed by brief co-author David Orentlicher in his excellent article Prescription Data Mining and the Protection of Patients’ Interests. I think he, Sean Flynn, and Kevin Outterson have, in various venues, made a compelling case for Vermont’s restrictions. But I think it is easy to “miss the forest for the trees” in this complex case, and want to make some points below about its stakes.**

Privacy Promotes Freedom of Expression

Privacy has repeatedly been subordinated to other, competing values. Priscilla Regan chronicles how efficiency has trumped privacy in U.S. legislative contexts. In campaign finance and citizen petition cases, democracy has trumped the right of donors and signers to keep their identities secret. Numerous tech law commentators chronicle a tension between privacy and innovation. And now Sorrell is billed as a case pitting privacy against the First Amendment.

There is an old tension between privacy and the First Amendment, best crystallized in Eugene Volokh’s effort to characterize privacy protections as the troubling right to stop others from speaking about you. Neil Richards has dissected the flaws in Volokh’s Lochneresque effort to reduce the complex societal dynamics of fair data practices to Hohfeldian trump cards held by individuals and corporations. Societies reasonably conclude that certain types of data shouldn’t influence certain types of decisions all the time. And courts have acquiesced, allowing much “of the vast universe of speech [to] remain[] untouched (and thus unprotected) by the First Amendment.”Continue reading…

Can Berwick Be Saved? Here’s One Possible Scenario

We’ve all had the experience of hearing someone we know well say or write something totally out of character, and wondering, “what was that about?”

Don Berwick said such a thing last week, all-but-contradicting President Obama’s support for a strengthened, independent Medicare payment board. After a little head scratching, I began to wonder whether this might have been a harbinger of some good news regarding his tenure as Medicare czar.

This is one complicated political dance, so let me explain.

Berwick, as you know, received a recess appointment to lead the Centers for Medicare & Medicaid Services (CMS) last July, after his nomination had become hopelessly entangled in a web of partisan politics. I applauded President Obama for the appointment, and predicted that Don would do a great job in this crucial role, perhaps even wooing some of the Republican legislators who hijacked his nomination process to re-litigate the fracas over healthcare reform.

Then, in early March, Senate Republicans made it clear that they would not support Berwick’s continued tenure when his recess appointment expires later this year. The reasons include lingering concerns about Berwick’s politics (particularly his embrace of the British system of universal healthcare coverage), continued anger over the Affordable Care Act (ACA), and some peevishness over the recess appointment itself. In this space last month, I promoted a letter-writing campaign to try to save the Berwick appointment, though insiders told me it was “hopeless.”Continue reading…

A Rebuttal to PHR Luddites

Unlike some of my colleagues, I’m not losing ANY sleep over whether personal health record (PHR) systems ultimately will be adopted and used by patients.

In my mind, the issue isn’t WHETHER, but WHEN.

Yes, I know that adoption has lagged and that surveys suggest 7% or less of the U.S. population has used a PHR.

Stay with me on this one for a minute. You’d have to have two underlying beliefs to conclude that PHR systems won’t eventually emerge:

  • That health record data will persist in non-electronic formats, i.e., paper
  • That people won’t have interest in accessing or using their health record data

Please think about this a moment. If you truly believe PHRs will continue to remain a non-starter, then you MUST logically believe in one or both of these assumptions.Continue reading…

National Strategy for Trusted Identities in Cyberspace

On April 15, 2011, the White House released the National Strategy for Trusted Identities in Cyberspace (NSTIC) during a launch event that included U.S. Sec. of Commerce Gary Locke, other Administration officials, and U.S. Senator Barbara Mikulski, as well as a panel discussion with private sector, consumer advocate, and government ID management experts.
What is it a trusted identity in Cyberspace?   This animation describes the scope of the effort.  It includes smartcards, biometrics, soft tokens, hard tokens, and certificate management applications.
NSTIC envisions a cyber world – the Identity Ecosystem – that improves upon the passwords currently used to access electronic resources. It includes a vibrant marketplace that allows people to choose among multiple identity providers – both private and public – that will issue trusted credentials proving identity.
Why do we need it? NSTIC provides a framework for individuals and organizations to utilize secure, efficient, easy-to-use and interoperable identity solutions to access online services in a manner that promotes confidence, privacy, choice and innovation.Continue reading…

The Disappearing Family Doctor – Is It a Bad Thing?

The New York Times recently published an article titled the Family Can’t Give Away Solo Practice wistfully noting that doctors like Dr. Ronald Sroka and “doctors like him are increasingly being replaced by teams of rotating doctors and nurses who do not know their patients nearly as well. A centuries-old intimacy between doctor and patient is being lost, and patients who visit the doctor are often kept guessing about who will appear in the white coat…larger practices tend to be less intimate”

As a practicing family doctor of Gen X, I applaud Dr. Sroka for his many years of dedication and service.  How he can keep 4000 patients completely clear and straight in a paper-based medical system is frankly amazing.  Of course, there was a price.  His life was focused solely around medicine which was the norm of his generation.  Just because the current cohort of doctors wish to define themselves as more than their medical degree does not mean the care they provide is necessarily less personal or intimate or that the larger practices they join need to be as well.

The New York Times article and many patients typically confuse high quality care with bedside manner.  Not surprising.  In the November 2005 survey by the Employee Benefits Research Institute, 85 percent or more of the public felt that the following characteristics were important in judging the quality of care received:

The skill, experience, and training of your doctors
Your provider’s communication skills and willingness to listen and explain thoroughly
The degree of control you have in decisions made regarding your health care
The timeliness of getting care and treatments
The ease of getting care and treatments

The first three items relate to the ability of a doctor to translate knowledge, training, and expertise into the ability to listen, communicate, and partner with a patient.  This is bedside manner.  The last two items relate to whether a patient can be seen quickly and easily when care is needed.Continue reading…

Comparing Hospitals on Safety, Quality and Cost

The Sunlight Foundation today gave us a fascinating first peak at the hospital safety data from the Centers for Medicare and Medicaid Services, which was finally convinced to release the information after years of stonewalling by the American Hospital Association. For the first time, the public can compare less-than-stellar performance at competing local hospitals on key indicators like catheter or urinary tract infections or bed sores.

As their story points out, the data only cover about 60 percent of hospitals since many states, like Maryland, failed to cooperate with the voluntary CMS program. They also caution that any comparison of the raw numbers must take into account the numerous confounding variables that can make one hospital look more slipshod in its practices than another. Some hospitals take in many more older and poorer patients, who are more likely to have multiple chronic conditions that make them prone to complications during their hospital stays.

Yet as Arthur Levin of the Center for Medical Consumers, a New York-based advocacy group, pointed out, “”I think it’s fair (to release the data) as long as everybody agrees on what the limitations are, and what the caveats are. There are those who say this data isn’t ready for prime time and public review. If we waited for perfection, we wouldn’t have anything out there.”Continue reading…

Of Zebras, Rare Diseases, and Google

When you hear hoof beats behind you, don’t expect to see a zebra.

Medical aphorism on the rarity of rare diseases

A rare or “orphan” disease affects fewer than 200,000 people in the United States. There are more than 6,000 rare disorders that, taken together, affect approximately 25 million Americans.

National Organization for Rare Disorders (NORD)

I have been asked to speak before a group of seniors about rare diseases. The thought fills me with trepidation. I am not an expert on rare diseases. There are so many of them. I fear being misquoted or misunderstood. I worry about malpractice implications, even though I am no longer in practice.

Nevertheless I am going to give the seniors my two cents worth, which is about what my opinion is worth. The temptation is irresistible. “To talk of diseases,” as Sir William Osler said, “is a sort of Arabian Nights entertainment.”Continue reading…

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