Ara article on Andrew Schorr: If You Have Cancer, Don’t Cry; Look for Information!
PatientPower.info Founder and 2 time cancer survivor, Andrew Schorr lives in Barcelona, Spain. Ara.cat just did an interview on Andrew and it is translated here for your reading. For those who are versed in Catalan, the original can be found at:
“If you have cancer, tell your family not to cry and look for information”
The journalist Andrew Schorr has fought leukemia and is the founder of Patient Power
JOAN SERRA Barcelona | Updated on 18/05/2014 00:00
Andrew Schorr has faced cancer twice. He lives in Barcelona and wants to bring the community of patients he founded in the United States to Europe.
He was professionally successful and led a quiet, healthy life in the United States. After graduating from Columbia he had worked in television but he gave up popularity to devote his time to a radio program where he put patients in contact with the best doctors from each specialism. He convinced professionals and patients rushed to take part. Andrew Schorr was a success. It was 1996, but everything changed at a routine medical check-up. He was diagnosed with chronic lymphatic leukemia. “I thought I was dead. I was 45. At some point I reached the conclusion that if it was the end of me, I couldn’t complain. And I started to fight,” recalls Schorr. And the first thing he did was to put into practice what he had learned as a journalist. Knowing about advances in biomedical research and being in permanent contact with patients and specialists became a huge asset, a very valuable way of confronting the illness. “For me it was normal to ask questions and search for experts. Patients need to know they have the power to ask questions,” he says.
Schorr, who is now 63, and came to live in Barcelona with his wife two years ago, was admitted to a clinical trial and overcame leukemia, the first of two cancers he has had to face. He explains that he was saved from leukemia because he had access to a treatment a decade before it came on the market. “The first thing you have to do is find out which specialists you can consult – the best ones in your disease. Then you need to ask about any new research you can take part in and, finally, you need to connect with other patients. If two people have suffered from leukemia, they need to talk,” reflects Schorr.
From this advice emerged Patient Power, now one of the most powerful patient communities in the United States. The help Schorr gives comes in two forms: events where patients can speak face-to-face with leading medical specialists in their disease and audiovisual materials and web content to connect information-hungry patients with one another. The aim is for the patient to manage the disease with more knowledge and much more decision-making power. “If you have cancer, tell your family not to cry and to look for information,” says the founder of this patient community to summarize his philosophy.
A patient with knowledge
Schorr understands that Internet access, the new forms of communication and the fact that the public are more aware of their health is transforming health care. 80% of American cancer patients look for information about the disease at least once a week. 72% of European consumers use the social networks to search for health information. And Facebook is now the fourth most used source of health information in the United Kingdom. “How can you get better treatment for your disease? The secret is communication,” insists the force behind Patient Power. He maintains that patients are capable of managing access to information: expectations do not necessarily have to generate frustration. Patients are mature.
Patient Power is working to make a website similar to the one active in the United States visible in Europe, and is preparing events in Barcelona and Madrid. At the meetings, like the one held 15 years ago in America, information will be given about new lines of research and advice will be provided to patients, who will also offer their experiences. The sessions are recorded and can be consulted on the Internet. Schorr wants the event held in Barcelona to involve research institutes. He already has the support of several drug companies. “What I know about cancer is that things are changing. Now there are many types of cancer and you need access to the right treatment. Clinical trials are an opportunity. The treatment is free and you can gain access to the medicine of tomorrow today,” he argues.
The patient’s responsibility
Giving power to the patient also involves an exercise in responsibility. Schorr, who in 2011 was diagnosed with myelofibrosis, a disease that remains latent thanks to a new oral drug specifically for this type of cancer, knows this. “I have to take my pills and have tests. I’m not dead, but I’m not cured. There are more and more chronic cancers, but chronic cancer means the patient has to take more responsibility,” reflects the American journalist. And he calls for cancer to be talked about openly: “Here the tradition is not to ask questions. That has to change.”