White House Chronicle

News Analysis With a Sense of Humor

CFS: One Disease and Its Costs

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What would happen to health care if a million new patients with just one of many now incurable and largely untreated diseases flooded the system, relying on medicine that could cost $70,000?

It might happen. Actually, it’s more than desirable that it should happen.

In one instance, a million or more patients who suffer from the devastating, life-robbing disease known as Chronic Fatigue Syndrome (CFS), or myalgic encephalomyelitis, struggle through days of almost total incapacitation, disorientation, pain and despair, clinging to hope that science will rescue them. All that’s known is that like AIDS, it’s a disease of the immune system.

The horror of this affliction is almost indescribable. I’ve been writing and broadcasting about these patients for several years and never have I seen such extended suffering, lives hollowed out, every tomorrow to be feared, the slightest departure from strict routines of inactivity to be met with punishing suffering.

The mother of an afflicted teenager told me that for New Year, her daughter went out for amid celebration. That exertion cost her two weeks in bed.

My friend and colleague (we host a YouTube channel, mecfsalert), Deborah Waroff, a New York-based writer, has been afflicted for 23 years and has seen her life confiscated. Like other patients she lives in a prison of her body with painful memories of when she was well. The body hurts, the memory tortures. Sleep does not refresh and long hours in bed do not heal.

Sufferers, held together in their pain by the Internet, trade sad notes. Going the rounds now is Winston Churchill’s statement in old age his life was finished but not ended. One sufferer e-mails me that she prays every night that she won’t wake up in the morning.

Patients groups say suicide rates are high. Determining the morbidity rate is a challenge because sufferers die from opportunistic infections rather than from CFS. In this, and other ways, it resembles AIDS and diabetes.

So far, the burden has been carried more by families and loved ones than by the health care industry. This is because there is no diagnosis per se for CFS, and no cure.

Dr. Andreas Kogelnik of the Open Medicine Institute in Mountain View, Calif., says there are no “markers” for the disease. There is nothing in the blood, marrow or soft tissue that identifies the disease.

Therefore, diagnosing the disease is by elimination – a time-consuming undertaking that the present medical regime is ill-equipped to provide. “You can’t do much in 10 minutes,” Kolgelnik says, referring to average amount of time allotted to patients by doctors.

So this is a disease that, even without a cure, the medical establishment has already indicated that it cannot afford.

The matter of affordability, for example, has affected diagnosis and treatment severely in the United Kingdom. There the National Health Service, always struggling with budgets, has encouraged doctors to teat CFS as a psychosomatic condition related to depression. The patients hate this and only recently has the British Medical Research Council softened its position.

That other medical nostrum, diet and exercise, is favored in the UK, too, but not by patients. They write to me constantly pointing out that exercise is corporal punishment for them; a recipe for relapse.

With only under-funded research scattered across the country at clinics and universities, the picture is bleak. But there are two pinpricks of light: a Norwegian cancer drug, Rituxan, which has helped patients in Norway and Germany, and a drug that is still in clinical trials in the United States, Ampligen, which rebalances the immune system.

Even those who administer the drugs, like Dr. Derek Enlander in New York and Kogelnik in California, don’t hail them as panaceas but as hopeful pacesetters. Neither is available except to a few patients in trials. And cost? Ampligen costs about $25,000 for a year of treatment, and Rituxan comes in at a whopping $70,000.

A slew of other diseases await expensive cures. In the future health-care costs, no matter what the Supreme Court and the politicians do, are going to go up and up. To the sick and their families, any price is a small one.

For the Hearst-New York Times Syndicate.

The Tea Parties: Add Sympathy

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Let’s pour the tea, and see who’s come to the party. More, let’s see why they came.

What binds these good citizens together in a ramshackle and loud fraternity known as the Tea Party movement? The focal point may be the Democratic health care legislation; but there is, as always with popular movements, a back story that is more complex and more compelling.

Could it be, to use Winston Churchill’s phrase, the sum of all their fears?

Indubitably. These are days of change, massive and irreversible change. Change that is undermining but difficult to characterize, and disturbing to experience.

The nation’s first African-American president, Barack Obama, is the symbol of that change more than he’s its author,

The Tea Party Patriots are people who feel that their lives and their nation is being swept forward to a place they don’t wish to go. They blame Obama and the Democrats for taking them there.

But the administration and the Democratic majorities in Congress have little to do with the buffeting the American image is taking.

Consider these facts:

 

✔ The United States has gone from the richest nation in the world to the biggest debtor.

✔ Our competitor, China, has grown rich in our market. Now China lends us money to cement the entanglement, while it becomes increasingly obstreperous.

✔ We have the largest and most lethal military machine on earth, but we can’t subdue insurgencies in Iraq and Afghanistan, banish pirates in international waters, or prevail in sanctioning Iran.

✔ Our infrastructure, once the envy of the world, crumbles. European trains hurtle at 220 miles an hour; ours crawl at less than a third of that speed.

✔ Broadband in the United States is many times slower than it is in Europe. This is cruel: We invent, they perfect.

✔ More than 10 percent, and possibly nearly double that, are out of work with no chance of employment for years. And new technology has made the skills of many of the unemployed obsolete.

✔ The United States is an English-speaking nation where a second language, Spanish, is creeping towards full recognition. Banks, phone companies and state governments have gone bilingual.

✔ Immigrants, legal and illegal, are changing the culture.

After 43 white, male presidents, there is a black man in the White House and a first family that reminds middle-class white tea partiers that huge changes are afoot.

A general anxiety has crystallized into a particular rage.

In memory, the 1950s have been sanctified as a time when all was well in America–if you were white and not serving in Korea. The United States was strong, the land was fertile and fear was concentrated on the Soviet threat.

As it had been in World War II, the good guys were us and the bad guys were them. The European empires were disappearing and we were the city upon a hill. Tea Party Patriots’ nostalgia for the 1950s is as pretty and disingenuous as a Saturday Evening Post cover.

The tea partiers may not be interested in the new demographics and new realities of the 21st century, but their anger won’t banish reality.

Trouble is the only political home these genuinely worried people can find is on the right: the overstated, overwrought and over-simplistic right. The right of Mark Levin and Glenn Beck.

These polemicists have concentrated the anxiety of tea partiers into a fear of socialism. It’s the undefined dark at the top of the stairs, the threat to liberty, to gun ownership and to private enterprise, according to the fear merchants of the right. Yet, there is precious little government left in the world that can be described as socialist.

The old socialism, with the nationalization of the means of production at its core is dead, sent to its eternal rest in Europe. Only a few leaders. like Hugo Chavez in Venezuela and Evo Morales in Bolivia, still espouse it.

Already extremists of the right–with death threats and property damage–are undoing the legitimacy of the entire Tea Party movement, and its unlikely members–the well-heeled, well-fed, well-insured but very sympathetic and very fearful activists.

Their fears deserve a hearing individually and in sum. Instead, they’re being exploited and in time they’ll be marginalized, discredited by the company they keep. –For the Hearst-New York Times Syndicate

Disruptive Technologies and the Agenda They Set

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The copper-wire telephone is in danger, traditional advertising is drying up and health care costs are through the roof and rising. What is the villain? Well, it’s technology; particularly, “disruptive technology.”

Disruptive technologies are devastating to established order. And they underlie Congress’s consideration the most wide-ranging legislative challenges it has faced since the New Deal: health care and energy.

Hugely effective but expensive new medical technologies, like magnetic resonance imaging, nuclear therapies and artificial joints, threaten to bankrupt the nation’s health care system. At the heart of the health care debate lie the escalating costs for these new technologies and how to shoulder and control them. The rudimentary solution is to get the well to pay for the sick, in the way that Social Security seeks to get the young to pay for the old.

After health care, Congress has to consider energy and its leitmotif, climate remediation. Here, too, it is faced with new technology forcing the issue. Even as the Senate contemplates taking up the House-passed bill, with its heavy emphasis on renewables, new drilling and discovery technologies are tipping the energy balance towards natural gas and away from other competitors like wind and nuclear power. Ironically, at one time, nuclear power was a disruptive technology that threatened to elbow out coal.

In electricity, Congress can force the market away from the disruptive technology toward something it favors for social and political reasons, like solar or wave power. The cost is simply passed on to the consumer.

As for transportation, the energy imperatives are dictated by the forces of infrastructure and sunk cost. In the long term, there are four options that will keep the wheels turning:

1.plug-in hybrids leading to full electric-powered vehicles;

2. hydrogen fuel-cell vehicles;

3. ethanol-powered vehicles and;

4. compressed natural gas-powered vehicles

These options are not created equal. Hybrids are here but the batteries are expensive, and the plug-in option dictates that the car sits in a garage or a parking lot that is equipped with plugs for charging. Also, the batteries decline with time and cannot be used after they lose about 30 percent of their design capacity. If you live in a high-rise, plugging in your vehicle is not yet an option. Ditto pure electric vehicles.

Hydrogen is a darling technology of the green community, which marvels that it is emission-free except for water. Trouble is, there is hydrogen aplenty in nature but not free-standing; it has to be extracted from hydrocarbons, like natural gas, or from water, with huge electrical input. Why not use the gas or the electricity directly?

General Motors markets a duel-use vehicle that can run on E85 (85-percent corn-derived ethanol). This fuel was a favorite of President George W. Bush; but the environmental impact of putting so much farmland down to corn for fuel and the effect on corn prices has taken the bloom off ethanol.

Natural gas–which can be used in a modified gasoline engine and has been made more abundant by revolutionary horizontal drilling technology–is advocated by T. Boone Pickens and others. It has come late to the transportation fuel wars because of fears of shortage, now proved groundless. Natural gas is not without emissions, but these are about half of those of gasoline. And it may be the big energy disrupter.

Congress, reluctant to pick winners for fear of also creating losers, intends to throw cash at every option in the hope that the market can make the choice later. But the market is not immaculate–and less so in energy than almost any other commodity. Electricity has to move down a finite number of power lines, and transportation fuels depend on the nation’s 160,000 gas stations for market entry. You can expect the gas station infrastructure to, say, provide replacement batteries, charging points, hydrogen terminals or natural gas compressors. But can you expect it to provide all of these?

Maybe the gas station, rather than being the vital element in the new energy regime, will be rendered obsolete by disruptive new technologies that allow gas compressing and electric charging in home garages and commercial parking lots. Maybe the hybrid of the future will have a compressed-gas engine and plug-in capacity, and all this will be achieved without the traditional gas station. Technology enhances, modifies and improves, but it is hell on established order.

Leon Trotsky said: “You may not be interested in war, but war is interested in you.” Congress ought to know that technology, disruptive technology, is interested in it. –For the Hearst/New York Times syndicate