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 Supremes Have It Made

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Oh, to be a federal judge, a lifetime judge. Ah, to interpret the U.S. Constitution for lawmakers or to have the unbridled joy of deciding what Congress meant without being able to ask it.

It is delightful to be on the federal bench and divine to be on the Supreme Court, where you can play mind games and search for writers’ clues hidden in the 222-year-old Constitution. It is the treasure hunt that never ends. More: You can look at plain words–such as those in the Second Amendment—and, depending on your personal interests, opine on what they mean with two radically different interpretations.

You can also stir things up by interpreting what your predecessors had already interpreted. Stare decisis et non quieta mouvere (settled law)? That is just what they tell the kids in law school. The pranksters on the highest court in the land will have none of it. Hence, Roe v. Wade hangs in the balance all the time. No stare decisis there.

Can anything be as much fun as deciding what a group of, albeit exceptional and erudite, 18th-century white men thought about the Internet? Talk about trivial pursuit. But it is not trivial; it can reshape the country. As each term approaches, fancy contemplating how much fun it would be to rearrange history by persuading just four of your fellow justices.

But that is not all. Working conditions are pretty nice. You cannot be fired. The pay is good. There is no mandatory retirement. All heavy lifting, from your suitcase to a weighty opinion, can be delegated to those too-eager clerks. The little buggers plan to make millions on the strength of clerking for you. Make them work for it, whether it is picking up your laundry or redefining the rights of the press.

But that is still not all. As an added bonus, the evidence suggests you will live a long time. After all, there is no strain. You are treated with unctuous deference. Even if you are so gaga you cannot tell one colleague from another, a thousand law schools will hang on your ramblings. Clerks will write opinions for you based on what they think you said. Deferential colleagues will try to side with you, even if they think you’re full of it.

And do not forget the sheer exhilaration of writing a minority opinion. You can really let off steam in those. It is the next best thing to talk radio for venting, and it has a much greater impact. Just savor the shock on your colleagues’ faces when you turn against them and, quoting you smartest clerk, you tell them what the Founders meant.

You have enjoyed the reality television show “Survivor.” Well, that is what life on the court can be like–with the additional pleasure that you can’t be voted off, canceled or bitten by a poisonous snake.

The greatest pleasure of all, though, is to go against the constituency that endorsed you. From Earl Warren to David Souter, this fun has been intense. Appointing a justice is a crap shoot: Like Henry II appointing Thomas Becket to be Archbishop of Canterbury, high perfidy is possible.

In recent years, things have been changing for the justices: more women and minorities have joined the all-white-male rumpus room. This change to a representative court brings up issues we should be informed about. Have the Great Ones had to clean up their language, or put down the seat on the highest legal throne in the land? Does Clarence Thomas speak without being spoken to? Does Antonin Scalia smirk in private as well as in public? And does John Paul Stevens remember when he was born?

However democratic we try to be, when presidents nominate someone for the highest court in the land, they create a demigod, beyond the reach of politicians and their jackals, journalists. They enter their own Pantheon, as sanctified and superior as the gods of ancient Rome who were given, like the Supreme Court, a marble temple, courtesy of the Emperor Hadrian.