Advocate in fight to the death with lung cancer

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http://www.ajc.com/news/content/health/ ... ancer.html

By VIRGINIA ANDERSON

The Atlanta Journal-Constitution

Published on: 11/29/05

Ed Levitt is in the final stage of lung cancer, with tumors not only in a lung but also in his spine, ribs and jaw.

He was told two years ago to plan his funeral — instead of treatment.

He has spent a lot of time throwing up, doubled over in pain, holding onto mailboxes for support as he walks his greyhounds in his Acworth neighborhood. He wakes up in the middle of the night and wonders whether he will be alive when morning comes.

But for a lung cancer patient, he's in great shape.

"I'm one of the really, really lucky ones," said Levitt, 63, a former corporate speaker who spends about six to eight hours a day working on behalf of lung cancer patients. "I'm alive."

Levitt is using what he considers his good fortune to do what hundreds of thousands of lung cancer patients have not been able enough to do: become an advocate for the disease, the No. 1 cancer killer of Americans.

Lung cancer advocates note the irony that one of their strongest patient advocates is a man in the final stages of the disease.

"It's tragic that we do not have more interest from the community broadly, from the public health community, that it would take an Ed Levitt, someone with Stage IV, to take up this charge," said Laurie Fenton, president of the Lung Cancer Alliance.

Lung cancer kills 85 percent of its victims within five years after they are diagnosed, most of them in the first year, according to the American Cancer Society. Because survivors are rare, advocates are rare.

Also, it's an often forgotten, or even stigmatized, disease, because people blame those who contract it for getting it in the first place, its advocates say. Lung cancer is heavily associated with cigarette smoking, with about 35 percent to 40 percent of those diagnosed being current smokers.

But there are tens of thousands, like Levitt, who are long-stopped former smokers and thousands more, like Dana Reeve, who got lung cancer despite never smoking. About 10 percent to 15 percent never smoked, and about 50 percent are former smokers.

Levitt has worked especially hard in November, Lung Cancer Awareness Month. His main goal was to convince people that lung cancer is a horrible illness that needs a little compassion — and a lot of money — for research if the five-year survival rate is going to improve.

He's playing an essential role, Fenton and others said. And it's not just what he's doing. It's how he's doing it.

In the world of modern medicine, advocates have become an essential part of the process by which illnesses from AIDS to breast cancer to diabetes get funding. Better diagnostic tools, drugs and even cures have, in many cases, resulted.

Many researchers believe that breast cancer is perhaps the best example of the power of advocacy for a specific type of cancer.

According to the Lung Cancer Alliance, the five-year survival rate for breast cancer is 88 percent; for prostate cancer it is 99 percent.

Lung cancer's survival rate is about the same as it was in 1971, when President Richard Nixon declared war on cancer.

Advocates see a connection between low survival rates and low funding rates. They point to such things as the amount spent by the National Cancer Institute on lung cancer — about $1,829 per each person who dies, according to the Lung Cancer Alliance — to the amount spent on breast cancer — about $23,474 per death.

"I just feel sick that the average person with lung cancer is having their life stolen away, and no one gives a damn," said Levitt, who smoked briefly decades ago but has not touched a cigarette in years.

Cases such as Dana Reeve, widow of Christopher Reeve, underscore how the prejudice against lung cancer hurts those who are diagnosed with the disease, its advocates say. Because research dollars have been relatively low, there is no screening test and few effective treatments. Once lung cancer is detected, it is usually advanced and likely to be incurable.

Levitt thought he was a picture of health in January 2004. A self-professed health nut who exercised four hours a day, he first noticed horrible pain in his upper leg while on a business trip. He had to drag his foot as he walked. Within a few days, one side of his face was drooping.

Then came fierce pain in his back, which he later learned was from tumors on his adrenal glands that had spread from his lungs.

In March 2004, his original doctor told him to plan his funeral, that maybe he could last 90 days with Stage IV lung cancer.

Those who treat Levitt say they are amazed at what a guy with lesions all over his body is able to do.

Levitt said he has become determined to help raise awareness of the disease so that others won't have to hear the fateful words he heard that bleak day almost two years ago.

He also credits great doctors and care providers at Emory University's Winship Cancer Institute, where no one told him that he should plan for his death.

They, in turn, credit him.

"You think I'm dedicated to make a difference?" said Dr. Fadlo Khuri, a lung cancer researcher at the institute. "Here comes a guy whose time is much more valuable than mine, who could be taking a trip to Alaska or to see the world, and he's just indefatigable. He never stops; he's like the Energizer Bunny. I'll be having a bad day at the clinic, and he calls me on my way home, and he replenishes me."

But he's not afraid to be confrontational when he thinks he needs to be.

"What have I got to lose?" Levitt said. "We've got people dying of this disease by the hundreds of thousands."

In between chemo treatments, Levitt meets with congressional leaders — U.S. Sen. Johnny Isakson (R-Ga.) on Nov. 21, for example. He e-mails drug company executives, and he harangues insurers who lag in paying claims for certain drugs. He brainstorms with Fenton, who is based in Washington, almost daily.

Levitt not only wants more money for research, he also wants better use of Master Settlement Agreement monies from the tobacco companies; a diagnostic test; and an improvement in survival rates.

Levitt knows full well that he's living on borrowed time, and that any change he may bring about will be too late for him.

As he sees it, he was granted extra time to make a difference for others with lung cancer. "We will make a dent, and the dent will get bigger and bigger and bigger," said Levitt, a London native who moved to the United States when he was a child. "And one day, we'll have such a big dent that we'll have a cure."