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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 - one response
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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
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The Future of Drones
May 13th, 2013
Guests Claude Salhani, journalist and Amitai Etzioni, The George Washington University
Europe; its Problems and its Promise
May 6th, 2013
Guests Annette Heuser, Executive Director, Bertelsmann Foundation; Darren Gersh, Journalist; Arnaud de Borchgrave, Center for Strategic and International Studies
What’s Ado in Washington
April 29th, 2013
Guests Joe Madison, SiriusXM Radio
A Discussion of the Anti-terrorism College at the National Defense University
April 22nd, 2013
Guests Michael Bell and Sebastian Gorka, College of International Security Affairs, National Defense University
Balance In The Media
April 15th, 2013
Guests Frances Stead Sellers, The Washington Post; Adam Clayton Powell III, University of Southern California