Freshman's quest for postage stamp gets heartening response, but his health declines

Four months after making an unusual pitch to the U.S. postmaster general, UC Berkeley freshman Gideon Sofer is making progress in his campaign for a stamp highlighting inflammatory bowel disease, and in spreading awareness of the disorder. But his personal fight against the disease is facing a setback.

By Yasmin Anwar, Public Affairs | 25 September 2006

BERKELEY – Four months after making an unusual pitch to the U.S. postmaster general, UC Berkeley freshman Gideon Sofer is making progress in his campaign for a stamp highlighting inflammatory bowel disease, and in spreading awareness of the disorder.

Last May, New Jersey's Make-a-Wish Foundation made arrangements for Sofer, 22, an avid stamp collector, to meet with Postmaster General John Potter to discuss Sofer's idea for an inflammatory bowel disease (IBD) stamp.

Sofer has Crohn's disease, a chronic intestinal disorder and member of the IBD constellation, which has landed him in the hospital for months at a time since he was 12 and led to the removal of nearly half his gut.

At the May 25 meeting, Potter listened intently to Sofer and told him he has family members who suffer from a digestive tract disease. Two days later, Potter featured Sofer in his welcome address at the opening of World Philatelic Exhibition in Washington, D.C.

"Would you be surprised to know that as many people suffer from Crohn's disease as suffer from Parkinson's disease?" Potter asked the audience after introducing Sofer. "(Gideon's) message to me was … we need to do a much better job of communicating. And, as somebody who collects stamps, he saw no better vehicle to get the word out than through a stamp."

Sofer couldn't have been more encouraged by Potter's response.

"A lot of what the postmaster general and I spoke about resonated with him because he's dealt with digestive disease in his family and really understands why it is so critical to get the message out," he said. "I think he's really going to play an important role in gaining approval for the stamp."

In support of Sofer's stamp effort, and Crohn's disease in general, Berkeley Hillel, the campus's Jewish student center, is hosting benefit concert the evening of Oct. 21. Performing will be the Afro-Semitic Experience, an ensemble that blends Jewish and jazz music.

Meanwhile at UC Berkeley, some students with IBD have contacted Sofer to thank him for raising awareness about a disease that nobody likes to talk about: "The stamp campaign is a creative and unique idea for bringing light to a disease that is unfortunately never talked about," one UC Berkeley student who suffers from ulcerative colitis, a form of IBD, wrote in an e-mail to Sofer.

An interview Sofer did on National Public Radio's "All Things Considered" show inspired Megan Leigh Dorko of Pennsylvania, who has Spina Bifida, to send Sofer a couple of potential stamp designs.

"I love being a graphic designer, and it's always been a goal of mine to incorporate my design skills with helping others in the best way I can," Dorko wrote in an e-mail to Sofer. "I hope the designs I've done for you can help your cause."

"The goal was to find a stamp that sent a strong message, but one that was also aesthetically pleasing," Sofer said. "This definitely captured both."

A meeting of the U.S. Postal Service's Citizens' Stamp Advisory Committee — which counts former UC Berkeley Chancellor Ira Michael Heyman among its members — is approaching, and Sofer is hopeful that consideration of a stamp highlighting IBD is on the agenda. The committee reviews ideas for new stamps proposed by members of the public and then recommends subjects and designs to the postmaster general. The process is highly confidential.

Although Sofer is making progress with his campaign for a stamp, his health isn't faring so well. Earlier this summer, Sofer started an experimental drug called Revlimid, a thalidomide derivative approved for some forms of cancer that appears to boost the immune system by increasing tumor-attacking white blood cells. He said this was a welcome change from the thalidomide he had been using, which has toxic side effects.

By all indications, Revlimid appeared to be working for Sofer. He gained weight and started feeling stronger. But when he went to refill his prescription in late August, he was told that his insurance company had withdrawn its approval of the drug for his treatment, and would no longer pay for his prescription.

"They hired a 'peer clinical M.D.' to review my case, and he deemed that it is not 'medically necessary' for me to take the drug — without ever having seen, met or spoken to me," Sofer said.

To continue the drug, he would have to pay more than $6,000 a month out of pocket, which he cannot afford. Sofer is appealing the decision and has been off of the medication for several weeks. He said that earlier this month, during a painful relapse, he was admitted to UC San Francisco Hospital for a one-week stay that arguably cost his insurance company at least half of what it would have paid for a year's prescription of Revlimid.

"Right now I am struggling, both physically and spiritually," said Sofer, who is headed to New York this week to see his physician.

Still, he added, "I'm so lucky to be alive. It's not always easy to tell myself this when I relapse, but that's what really gets me out of bed in the morning, and that's what is motivating me to do whatever it takes to get this stamp approved."

SIDEBAR: 

'The power of a stamp'

These are excerpts of a speech by U.S. Postmaster General John Potter at the opening ceremony of the World Philatelic Exhibition on May 27, 2006.

"Every once in a while there's a story that comes back and really rips me. And this is the story of a young man who has Crohn's disease and was really up against the wall. Many thought he wouldn't make it. At the time, he was contacted by the Make-a-Wish Foundation … It's a foundation that reaches out to young people who have diseases that may end their lives, and offers them an opportunity to have a wish.

"Today, I'm happy to have someone here whose wish – believe it or not – was to meet the postmaster general. Now, when I told my kids that, they said ... well, they were a little surprised! Why did Gideon Sofer want to meet the postmaster general? Because he understands the power of stamps.

"You see, it's not very popular to talk about a disease that affects your digestive system. Think about it. How often do you talk about that? Would you be surprised to know that as many people suffer from Crohn's disease as suffer from Parkinson's disease? Would you be surprised to know that when it comes to medical research, the country spends about 25 percent on Crohn's disease as it does on Parkinson's.

"(Gideon's) message to me was: First of all, we need to do a much better job of communicating. And, as somebody who collects stamps, he saw no better vehicle to get the word out, than through a stamp. And his goal is to get the Citizens' Stamp Advisory Committee here in the United States to listen to his plight and get the word out on this disease that has afflicted him and his family.

"So, think about that: The power of a stamp to carry a message on every envelope. Every person that sees that stamp gets the message, asks the question, what's behind that stamp? We celebrate a lot of things, but we also use stamps to carry messages; messages about our country, messages about good things about our country; but [also] messages of concern, and, in this case, awareness."

To learn more:

• Read more about the IBD stamp campaign at ibdcure.org
• For more information about the Oct. 21 benefit concert for Crohn's disease and the IBD stamp effort, contact Oren Kroll Zeldin at Berkeley Hillel (510) 845-7793
• Student to make stamp pitch to US postmaster (NewsCenter, 5.24.06)