Patients Caught in Treatment Gap
By Michael Kaufman
One of the joys of being a reporter is that every once in a while you get to be present when something historic, important, or just plain entertaining or exciting happens. Then you get to write about it and spread the information. I had some wonderful experiences as a sportswriter, covering events like the 1969 World Series, the Ali-Frazier fight at Madison Square Garden in 1971, and the 1973 World University Games in Moscow.
I treasure the pictures I have from my interview with Muhammad Ali at his home. I smile at the memory of an interview with Gordie Howe, then still known as “the Babe Ruth of hockey” because he had scored more goals than anyone else in history. (The advent of curved hockey sticks would soon make his record obsolete, much as steroids helped obliterate the home-run records of Ruth and Hank Aaron.) Howe, a fierce competitor known for his physical strength on the ice, was shy and softspoken throughout the interview. He never finished high school, he said, and always admired people who were able to write well.
Not all the memories are good. There was the time I rushed to attend the press conference at Bachelors III, the Upper East Side bar owned by Joe Namath, star quarterback of the New York Jets. Namath had been ordered by Pete Rozelle, commissioner of the National Football League, to divest himself of his interest in the place, said to be frequented by “social undersirables.” At the press conference, a defiant Namath tearfully announced his retirement, although a deal was soon worked out that allowed him to keep playing.
But what I remember most about that press conference was how we reporters were packed in like sardines while we waited for it to begin. I was somewhere in the middle of the room, hoping I wouldn’t pass out from lack of oxygen, when Namath walked up to the microphone and began to speak. Suddenly the door at the rear burst open and a television crew led by Howard Cosell began pushing its way forward. Namath waited.
Cosell advanced, using his elbows like a blocker in the Roller Derby, occasionally muttering a half-hearted, “Excuse me,” and leaving a trail of grumbling writers in his wake. “Hey!,” they hollered while ducking to avoid getting hit in the head by cameras and lighting equipment. As Cosell passed by me he stomped squarely on my foot. It hurt a lot and I winced. He paused a moment and looked at my face. Then he looked at my press badge to see my name. When he recognized neither he grunted and moved on. I guess I wasn’t important enough to get even a half-hearted, “Excuse me,” from the bastard (may he rest in peace). The top of my foot was badly bruised and hurt for a week.
So what does all this have to do with the title of this post? It is this: Since leaving sportwsriting for medical writing a couple of decades ago I’ve had similar experiences. Sufficeth to say that some medical specialties have their own Howard Cosells. But most of my experiences have been good….and sometimes they are very good indeed.
That was the case December 4-8 in Boston, where I attended the annual meeting of the American Epilepsy Society (AES). The AES meeting draws several thousand neurologists and other healthcare professionals from around the globe, all dedicated to the prevention, treatment, and cure of epilepsy and its complications.
Much progress has been made in recent years. Advanced imaging technologies have provided new insights into how seizures affect the brain. Breakthrough research has led to new adjunctive drug treatments and innovative devices. In one of the most exciting and well-attended sessions at the AES meeting, findings of a pivotal multicenter trial of an implanted programmable responsive neurostimulator were reported. Findings suggest that this little gizmo is safe and effective in adults with certian types of intractable seizures. It is the first implanted device that is able to detect and abort seizures before they happen.
Ah, but here is the rub. All this progress in epilepsy management has not reached most of the 50 million people around the world, including many of the three million in the United States who have the disorder. The consequences are not insignificant, says Steven C. Schachter, MD, president of the AES, because uncontrolled epilepsy leads to a diminished quality of life and a greater risk of disability and death.
“An astonishing three-quarters of the global population with epilepsy get no treatment whatsoever for their seizures,” says Schachter. And, he adds, “While most patients here in the U.S. receive some form of therapy, there are racial, ethnic, and socioeconomic disparities in access to treatment, surgery in particular, and significant under-diagnosis and treatment of associated complications of mood, memory and cognition.”
Even with the plethora of epilepsy therapies now available, says Schachter, “the CDC estimates that at least 45 percent of people with epilepsy here in the U.S. continue to experience seizures. Complete freedom from seizures is not a possibility for everyone who has epilepsy. But it is important for patients with continuing seizures and their healthcare providers to make every effort toward that goal.”
The heavy toll that undiagnosed, untreated and sub-optimally treated epilepsy imposes on the millions of people with epilepsy in the U.S. and worldwide has led the World Health Organization to raise the international campaign against the disorder to its highest level. Closing the wide gap in treatment will require major efforts on the part of governments, as well as healthcare professionals, affected individuals and family members. But, with people’s lives at stake, says Schachter, there is no other course.
Michael can be reached at michael@zestoforange.com.
Tags: Michael Kaufman
December 12th, 2009 at 11:53 pm
Unfortunately, Dr. Schachter is wrong: There IS another course, and the United States is choosing it by allowing health insurance companies to pursue their goals making money at the expense of their customers’ health. Even if the current legislation under debate becomes law, not much will change when it comes to health care for the average American. There will be no public option to force them to compete for customers. There will be no serious limitation to the amount they can charge for premiums or copays. There will be no end to the practice of requiring “prior approval” before customers can have the medications already prescribed for them by the very doctors who participate in their health insurance plans. These are just a few of the ways that health insurance companies prevent people (including those with epilepsy) from obtaining needed health care. I know because I work in the medical field and see it happening every day.
December 18th, 2009 at 12:50 pm
You are absoutely right, Lee. Perhaps I should have made it clearer in the post, but I was hoping readers would realize it for themselved (as you did). It is another prime example of why we need real healthcare reform (and not the toothless version currently under consideration by the Senate).