CarlsbadCarlsbad — When Andrew Schorr was diagnosed with the first of two blood cancers 20 years ago, the searchable Internet was still in its infancy and information on treatment options was scarce. So the longtime television producer and his wife, Esther, harnessed the technology available at the time to get the latest news on cancer care into their hands and, eventually, those of thousands of other patients worldwide.
Last month, Schorr was one of eight Americans honored by CURE Magazine as a 2016 MPN Hero, a group of physicians, caregivers and patient advocates like Schorr who are making a difference in the field of rare blood cancers known as myeloproliferative neoplasms or MPNs.
Since 1996, the Carlsbad couple have gradually built an international following of patients, hospitals and researchers, who cross-communicate through the Schorrs’ two websites: Patient Power (PatientPower.info), a news site with video, audio and article archives on drugs, research and clinical studies; and the Patient Empowerment Network (PowerfulPatient.org), which connects patients with each other to share information they can use to develop their own care plan.
“The revolution Esther and I have been part of is using technology to help people get smart and be an active part of their care,” Schorr said last week. “Our job is to teach patients to think like consumers.”
Schorr’s work in producing video on health-related topics predates his first bout with cancer by a dozen years. But after his leukemia diagnosis, he and his wife redirected their reporting skills toward feeding information to an information-starved community of cancer patients. At first, the Schorrs connected with patients via conference calls. Then came radio call-in shows. In the mid-1990s, they started producing content for a series of websites. Today, they network with patients, hospitals and drug developers through blogs, Facebook livecasts and many other means.
Schorr — who was also diagnosed in 2011 with myelofibrosis, which damages the bone marrow’s ability to produce red blood cells — said what makes his and Esther’s websites unique is the first word in their URLs: “patient.” The information on the websites is widely respected because it is both produced and shared by patients.
“For 20 years I’ve had these conditions, which gives me credibility in patient circles,” Schorr said. “People know I’m not selling anything.”
Erik Lohrmann, vice president of sales for CURE Media Group’s oncology division, said Schorr’s selection as an MPN Hero was a natural.
Andrew’s journey is incredible to say the least,” Lohrmann said. “He is not only a survivor of MF but also of CLL. Additionally, his dedication to bettering the lives of those with MPNs as well as other cancers solidify him as a hero in the oncology community.”
Schorr’s expertise in the medical field has come a long way since the mid-1980s, when he started producing medical segments on sex-related subjects for the Playboy cable channel. In those days, Schorr admits he was so ignorant of medical science that he humiliated himself at press conference by pioneering heart surgeon Michael DeBakey, who admonished the young reporter for asking “the worst question he’d ever heard.”
Schorr was in his mid-20s when he started working as a roving feature reporter for TV stations in North and South Carolina. By 1975, he was living in San Francisco as the national producer for the prime-time “P.M. Magazine” TV show. In 1982, he moved to Los Angeles to try his hand at writing screenplays and paid the bills as a freelance TV producer. One of his weekly gigs involved interviewing San Diego Zoo animal ambassador Joan Embery and the creature of the week at the Zoo or then-Wild Animal Park.
On assignment for the Playboy Channel in 1984, he attended a medical convention on erectile dysfunction in Atlanta. An exhibitor who manufactured penile implants asked Schorr if he’d be interested in producing patient education videos. Those videos he produced with his wife Esther (they’ve been married 31 years and have three children, ages 19 to 27) won an award from the American Medical Writers Association.
“The drugmakers at the time were using celebrity spokespeople in their videos but we featured real people in ours,” Schorr said. “That’s when we figured out we were on to something.”
The Schorrs relocated to Seattle and in 1992 set up a conference calling bridge known as Health Talk, where up to 1,000 multiple sclerosis patients would dial in three times a week for the latest news on drugs and care. The program was sponsored by drug manufacturers. Four years later, they launched their first website, healthtalk.com, featuring video and, eventually, radio content for healthy people (they sold the website to Everyday Health in 2005).
The same year they started their Health Talk website, Schorr began having nosebleeds during his runs (he was then 45 and an avid marathoner). After receiving the CLL diagnosis, he did his own advocacy work to find a specialist at the MD Anderson cancer Center in Houston and was successfully treated (his leukemia is in deep remission). The experience of struggling to find that specialist put the Schorrs on the path they continue to follow today.
“The lesson we learned was that other patients can help you, and the Internet, when used wisely, can be a great tool,” he said.
The Schorrs — who call themselves “couple-preneurs” — work side by side writing blogs, attending medical conventions and doing video and audio interviews. They’ve developed long-term relationships with cancer centers in San Diego, Los Angeles, Houston and Chicago. Andrew specializes in the drug and treatment side of the business. Esther, 59, focuses on caregivers, like herself, who she said are just as important to a patient’s care plan as their doctor and drugs.
The couple moved to Carlsbad in June, after four “glorious” years living and workng in Barcelona, Spain. They chose the four-story Carlsbad condo they share with their dogs, Candy and Donovan, because it’s an easy train trip to Esther’s parents in L.A. and a short drive to the two doctors at UCSD who specialize in Schorr’s two cancers. San Diego is also home to a fast-growing community of immunotechnology drug developers. The Schorrs have already started working with some of these pharmaceutical companies to bring together researchers and patients with the goal of speeding up clinical trials.
One of their major topics for 2017 is studying the growing affordability problem of disease-fighting drugs. Schorr’s own regimen of daily pills could soon cost up to $20,000 a month.
Their other goal this year is to spread awareness about their websites, which are at this point only known to only a small underground community of cancer patients, doctors and scientists.
“I don’t know how much time I have, and we’ve lost a lot of friends,” Schorr said. “My mission now is to reach more people so everyone can get the benefit of the information we provide.”
videopam.kragen@sduniontribune.com
