Patients with Mysterious Diseases and Medical Scientists Clash

A little learning is a dangerous thing;
drink deep, or taste not the Pierian Spring:
there shallow draughts intoxicate the brain,
and drinking largely sobers us again.

Alexander Pope (1688-1744), An Essay on Criticism, 1709

Making things more transparent can immediately turn consumers into better shoppers and make markets work better. One might think that such an initiative would receive nearly universal support – after all, who could be against openness and transparency?

Richard H. Thaler, "This Data Isn’t Dull: It Improves Lives” New York Times, March 13, 2011

In a perfect health reform world, empowered patients, armed with transparent information about their disease and its costs, sould control their health destinies. In their 2001 book, Crossing the Quality Chasm, the Institute of Medicine set forth a few of these “simple rules” for a 21st century health care system.

• Care is based on continuous health relationships.

• Care is customized according to patient needs and values.

• The patient is the source of control.

• Knowledge is shared and information flows freely.

• Decision making is evidence-based.

• Transparency is necessary.

• Needs are anticipated.

This is an attractive set of rules , but in the case of three controversial diseases – Chronic Fatigue Syndrome, Fibromyalia, and Chronic Lyme Disease – these rules have limits. The rules are not so simple. Patients may insist they have these diseases and that they are devastating their lives, but scientists may maintain that scant evidence exists that the diseases exist.

Here is how a March 12, 2011 Wall Street Journal piece, “Amid War on a Mysterious Disease, Patient Clash with Scientists,” tells the story.

“ Robert Miller was working as a coal miner in Utah in 1982 when he got the flu and ‘it didn't go away.’ Diagnosed with chronic fatigue syndrome in 1994, he has been living ever since with symptoms that include constant pain, an inability to concentrate and exhaustion so severe, he can't lift his arms.”

“Now, after a 2009 study claimed to find a link between chronic fatigue syndrome and a virus called XMRV, the 52-year-old has become a leader in patient efforts to push scientists to finally solve the mystery of his disease. He's attending scientific conferences, organized patient meetings with government officials and helped mastermind an advocacy campaign that sent daily emails to government agencies demanding action.”

“Stuart Le Grice is skeptical about XMRV's role in the disorder. As head of the National Cancer Institute's Center of Excellence in HIV/AIDS and cancer virology, he is sympathetic to Mr. Miller and other patients. But he insists that science can't be rushed. Desperate patients who want immediate answers risk diverting attention from essential research. ‘There's a danger of deflecting us from what we really want to do,’ Dr. Le Grice says.”

So, what if lack of evidence disrupts continuous health relationships? What if evidence does not support a patient’s needs and values? What if patient “control” runs counter to medical opinion? What if patients believe scientists are not sharing information or letting it flow freely? What if things don’t work out to the patient’s satisfaction?

Openness and transparency may not be sufficient in the real world if evidence for a disease state is scanty or does not exist. It is the a patient’s word against lack of data.

Many medical scientists say in this trio of diseases are psychological disorders, there are no specific tests, no biopsies, no radiological images to document their presence. Their symptoms are vague, involve multiple parts of the body, vary from patient to patient, and may be a pretext for gaining disability and other medical benefits. The controversy boils down to a contest between the subjective and the objective.

I do not pretend to be an arbiter in this dispute . It boils down to a dispute between disease sufferers, spurred on by proliferation of active advocacy groups on the Internet, mobilizing support for their point of view, and open combate at scientific meetings, and a skeptical scientific establishment.

It also raises deep questions. Is a little knowledge by patients and health consumers, largely gleaned from the Internet, a dangerous thing when pitted against scientific opinion? Does the so-called “information-asymmetry” between patients and physicians exist?

Does a set of vague symptoms justify therapeutic intervention? Pfizer thinks so, it developed Lyrica® to treat Fibromyalgia. A small number of practitioners think so. They are giving massive doses of antibiotics to patients who believe they have Chronic Lyme Disease. Chronic Fatigue Disease sufferers think so. They are collecting disability and openly challenging the medical scientific establishment.

$105 Billion for Implementation: A Mandated Fast-Baked Reform Cake-Off

Pat-a-cake, pat-a-cake, baker’s man,
Bake me a cake as fast you can;
Pat it and prick it, and mark it with a B.
Anonymous, Nursery Rhyme

In the case of the fast-baked health reform law cake, the B stands for Billions of dollars, $105 Billion to be precise, thanks in no small part, to open-ended entitlement spending.

As we approach the first anniversary of the passage of the Patient Protection and Affordability Act (PPACA), we keep learning the political culinary advantage of fast-baking a 2500 page cake, then waiting until the last minute for a vote to decide whether to eat it.

The chief advantage of a fast-baked health reform cake is that nobody has time to digest the cake's distasteful ingredients or to consider the indigestion that might follow.

The latest regurgitated ingredient is $105 billion the Democratic Congress secretly baked into the cake to automatically fund implementation of the law.

PPACA proponents say this $105 billion should come as no surprise. It was known as long ago as October, 2010, and was published in a report. If the little known report went unread and undigested, that's the inattentive cake-eaters’ problem.

For Republicans, the fundamental dilemma is this: Republican efforts to defund PPACA have been blocked so far because most spending is self-executing. Funding is paid for by provisions in the law.

This defunding puts implementation out of reach of the budgeting process. “The big problem with defunding is we couldn’t get at most of it in the Continuing Resolution,” Rep. Michael Burgess(R-Tex.) said. “All of the stuff that’s in the law as mandatory spending, we couldn’t touch…that’s all baked in the cake right now and we don’t have access to it.”

The $105 billion is just one piece of larger $1 trillion cake. That’s some cake. Perhaps PPACA enthusiasts will be able to have their cake and eat it too, along with American taxpayers.

Oh, What a Tangled Web Government Weaves, When Tax Dollars It Seeks To Retrieve

The Obama health reform law is running into self-imposed snarls as it tries to raise tax revenues to pay for its plan. The government is caught up in a spider web of its own design.

First to go was the 1099 gambit, which required business to submit 1099 forms for every $600 of expenses.

Then came the 1000 or so waivers granted to organizations, particularly political allies, and to small businesses, who complained they could not afford Obamacare.

Next came promises of concessions to the states, who were told they could design their own Medicaid plans as long as their plans met all federal requirements.

Finally, we have the Over-the-Counter (OTC) problem – a perfect example of the tangled web problem. The law requires that 33 million Americans with flexible savings accounts must have a doctor’s prescription before being allowed to deduct OTCs from their accounts. Congress's number-crunchers estimated the change would generate $5 billion over a decade. Hardly anyone noticed it, even as it stayed in the bill through passage in March 2010.

The law took effect for OTCs on January 1. Suddenly patients began loading up on OTCs before the end of the year, doctors bitterly complained writing prescriptions for common OTC drugs was a waste of their expensive time, and they feared if they did write them and complications occurred, they would be sued. The drug chains complained the new OTC required were a burden and tied up pharmacist times. The IRS said it would have to add agents to figure out which drugs could be deducted.

Federal laws have adverse, unintended, and costly consequences, unforeseen by the President, Congresspersons, and their staffs from their lofty perches on Washington.

The Organizational -Medical- Governmental Complex

Every single social task of major impact . . . is increasingly entrusted to institutions which are organized for perpetuity and which are managed by professionals, whether they are called ‘managers,’ ‘administrators,’ or ‘executives.'

Peter Drucker (1909-2005), The Age of Discontinuity, 1969

Individual physicians are relatively powerless against large organizations, be they run by health care executives or government officials. For good reasons. It takes a large organization to get big things down- to deal with the bureaucracy, to afford the technological infrastructure required, to mobilize a team of professionals, to make one’s market presence known, to have an impact, to exert leadership.

Yet, when it comes to seeing a doctor, most of us want doctors who look after our personal interests, not the interests of the organizations. Doctors, who cherish their autonomy, are not good in forming effective organizational counterweights.

We often resist the impact of large organizations on our practices by complaining about astronomical salaries of executives, excessive power of government officials, unneeded burdensome bureaucracies, unfair reimbursement policies, and the loss of freedom of doctors and patients. Doctors say misplaced organizational power leads to unneeded regulations, to punitive laws, to outside interference, and to diminished innovation.

To sample the reality of what I am saying, viz., that independent doctors feel helpless in the face of organizational juggernauts, look at the activities of these large organizations.

• The World Health Care Congress – This huge organization holds a series of “Congresses” each year, culminating in a Summit Congress, in Washington, D.C. in April. Its motto is “Driving Strategy in an Era of Government and Market-Driven Care.” Its meetings feature organizational movers and shakers from all realms of government and the health care industry. In these meeting rarely do you hear the voice of independent physicians.

• AARP - With over 40 million members, retirees, near retirees, and the elderly, AARP is the largest private organization in the United States next to the Catholic Church. Its biggest source of revenue may be Medigap policies, administered by United Healthcare, which proudly complains it has 78,000 employees providing benefits for 78 million Americans. Robert J. Samuelson, Washington Post columnist, says of AARP, “ AARP is in charge. Power is the ability to get what you want. It suggests that you control events. By these standards, the AARP runs government budgetary policy, not presidents or congressional leaders.”

• Health Affairs – This is America’s premier health policy journal. It is very much an Inside-the-Beltway publication and generally reflects the views and hopes of government-directed health care while bashing consumer-directed or physician-directed care. To be sure, its tone is always high-minded and fair, but its drift is palpable. An example is its March issue on innovation. It features 15 organization innovations presented at a December conference. The organizations included: Commonwealth Care Alliance in Boston, Geriatric Resources for Assessment and Care of Elders. Aurora Health Care in Wisconsin, The American Academy of Pediatrics’ Asthma Pilot Project. Cambridge Health Alliance in Massachusetts, Clinica Family Health Services in Colorado, HealthCare Partners Medical Group, Mercy Health System in Pennsylvania. ThedaCare in Wisconsin, The Vermont Blueprint for Health. Martin’s Point Health Care in Portland, Maine, Bellin Health in Green Bay, Wisconsin, Capital District Physicians’ Health Plan in New York .

I do not mean to demean the work of any of these organizations, but all undertook projects to demonstrate the effectiveness of strategies espoused by Medicare and Medicaid Innovation Centers. It may take an organization to exercise social responsibilities for care, but it takes a physician to deliver the care, which may conflict with organizational goals.

Coming Out of The Electronic Wilderness

Well, I am finally out of the electronic wilderness, or the electronic wirelessness, if you want to be precise.

I have an IPad-2 with WiFi. Anywhere I go in the house, I can google anybody the universe. I have Skype. It is as good as its hype. I can visualize anybody, anywhere on the planet.

I have email. I am on Twitter and Facebook. I have my own blog and website.

Bottomline?

Icanconnectwithanybodyanywhereanytimeanwhererealtimeallthetimewithorwithoutimagesinless140characterwithorwithoutspacesininnerourouterspace.

So there. I am totally connected to everybody else but not to myself. I have no space or time for me, yours truly.

Health Reform: Are the Political Chickens Coming Home to Roost?

March 7, 2011- My reading today includes the Washington Report, a non-partisan insider report, produced by The Physicians Foundation, and the Wall Street Journal, which gives its usual unabashed conservative view.

The Washington Report, written by Lee Stillwell, a long-time friend of physicians, says Congress now has the votes to oust Dr. Donald Berwick, as CMS administrator.

Dr.Berwick champions Accountable Care Organizations (ACOs) as a means of compelling hospitals and doctors to work together under fixed budgets to provide care for Medicare recipients; setting up insurance exchanges to cover care for millions of Americans; and enforcing regulations to reward quality rather than volume.

Stillwell notes, however, the most “significant development” this week came when U.S. District Court Judge Roger Vinson gave the Obama administration a bare seven days to file an appeal to his ruling that the unconstitutionality of the individual mandate makes the entire health care law “void.”

The Wall Street Journal opinion piece , “ObamaCare’s March Madness, “ by Grace-Marie Turner, president of the Galen Institute, Alex Cortes, executive director of Let Freedom Ring, and Heather Higgins, president amd CEO of the Independent Women's Voice, flatly states that a series of events contributes to the “madness” of the health reform law.

• 28 states “and counting “ challenging the law in court.

• Nearly 1000 waivers allowing politically-favored states, companies. And unions to “escape” Obamacare regulations.

• Exploding premiums as insurance companies seek to minimize the expenses of new regulations.

• Seniors losing access to doctors, as many as 40% physicians cease seeing Medicare patients to avoid bankruptcies.

• Companies exiting markets for individuals, small groups, and Medical Advantage plans.

Like many Americans, I like President Obama ( Real Clear Politics poll averages indicate 2.2% more Americans approve than disapprove of his performance). He is personable, intelligent, eloquent, and has an attractive family.

But I dislike the health law of Obama and the Democrats (Poll averages show 11.8% more Americans are “against” rather than “for” the new law).

As I observe in my upcoming book Good Intentions: A Health Reform Handbook: Intended and Unintended Consequences, the political chickens may be coming home to roost.

Congress and the American people are wary of Dr. Berwick because of overt past statements approving centralized command and control health care policies and his overt disapproval of all market-based solutions.

Frankly, I do not understand subtleties of legal issues swirling around the constitutionality of the individual mandate, but I do know the Supreme Court must resolve the individual mandate issue soon before we squander time, energy, and money implementing a law that may be declared “void.”