THE JEWISH WEEK - May 14, 2004

A Voice For Patients

Leukemia and a trip to the Holy Land stir New York trial lawyer to create medical Web site for patients.

Linda K. Nathan
Special To The Jewish Week

When New York trial attorney Andrew Robinson walked into the emergency room of a small town Colorado hospital in 1994, his plan was simply to leave with a week's supply of antibiotics, enough for his vacation. Instead, he left with a diagnosis of cancer that eventually led him to Jerusalem - and then on to create a unique health Web site.

The story begins out West: Robinson had planned this get-away with his oldest daughter to camp out and enjoy the beauty of the great outdoors. But when he felt the beginning of an upper respiratory "bug," he knew this was not the time to get sick.

As Robinson looks back now, he remembers waiting what seemed like hours for the results of a routine blood test. "Why is it taking so long?" he asked; there were no other patients in the emergency room of this rural hospital.

The answer came with the appearance of a doctor who identified himself as "an oncologist." At the time, "I didn't even know what an oncologist was," Robinson recalls. The doctor minced no words: Blood tests showed "chronic lymphocytic leukemia (CLL)." And, "You probably have less than five years to live," he informed Robinson. "But there is no need to rush home, because there's nothing anyone can do."

Robinson completed his vacation with the pluck that has carried him through more than 30 hospitalizations - including a successful bone marrow transplant in Israel. But during his initial three years of treatment at major medical centers in New York, he came to believe he said, that "the patient's voice isn't being heard or understood."

That's why in 1999, he founded Patient2Patient.net to help patients, their families and caregivers avoid the hurdles that Robinson himself had to confront.

The story of Andrew Robinson's battle with CLL is a tale that combines those efforts to help others via the Internet with his own personal struggle. After three years chemotherapy in New York, as well as alternative approaches, nothing had worked.

When he heard about a new form of bone marrow transplant at Hadassah Hospital in Jerusalem, Robinson couldn't wait to contact Dr. Shima Slavin who invented the treatment, now widely used throughout the world.

"I met Dr. Slavin at a bar at the Sheraton Hotel, where he was staying. He comes to New York regularly," Robinson explains, adding that the doctor read Robinson's medical reports in the bar.

"If you have to do a bone marrow transplant, Jerusalem's a good place," Slavin advised Robinson.
"Why?" Robinson asked.
"Because Jerusalem is closer to God," the doctor replied.

With little hesitation, Robinson prepared for surgery in Israel, leaving New York with his wife and younger daughter for what was originally planned to be a three-month stay. That visit turned into 18 months of medical care in Jerusalem, where Robinson, a Reform Jew, grew seriously interested in studying Judaism.

Today, Robinson, an Orthodox Jew living in Brooklyn, says his cancer has been in remission for one and a half years, although he is now dealing with the secondary affects of his treatment.

Currently, about 80,000,000 adults in the U.S. are seeking health information online, Robinson says, "but most of them aren't getting it right." As executive director of Patient2Patient, Robinson and a staff of healthcare professionals create Web Guides for specific illnesses.

Each Web Guide offers information on clinical trials, specialty doctors, medication databases, local and online support groups, and other resources, such as how to get free or discounted medications, and how to get free airline travel for medical treatments.

A one-year subscription to Patient2Patient.net costs $24.95, which includes a free monthly newsletter. Complimentary copies of the newsletter are available by going to www.patient2patient.net and signing up at the home page. In addition to inspirational features and humor, the newsletter offers what Robinson calls "patient best practices," practical tips for dealing with common concerns: What questions should you ask doctor? How do you get an effective second opinion?

Response to Patient2Patient has been "tremendous," Robinson says. Credit for that success might well go to the determination and perseverance he learned as a trial lawyer.

To anyone with a serious disease, Robinson advises the "trial attorney approach. Do research, ask lots of hard questions, keep digging for answers - if one thing doesn't work, find something that does." And just as he tried to be open and genial with jurors, Robinson recommends a similar tactic with doctors. "Make your doctor your friend," he says. The goal? It's the same as in court, he replies: "Ultimately, the point is to win."

Robinson's geniality doesn't mean that his trial-lawyer toughness has disappeared. Slavin, he remembers, said that "my case was the toughest he had ever seen, although I never asked him if he was talking about the disease - or me."

The disease, however, has indeed mellowed Robinson. "Before my illness, I didn't realize the importance of being connected to other people," he says. "But I received so much help from doctors, friends, even total strangers, that I knew I wanted to give back."