Give Patients Knowledge and Let Them Decide! (English translation from La Vanguardia article)

La Vanguardia

Andrew Schorr, journalist, patient and founder of Patient Power

I’m 63, but that’s just a number: age is a feeling and I feel young. I was born in New York, the universal city, but I live in Barcelona because it’s a celebration of life and I celebrate that every day. I owe my life to my wife, with whom I have three entrepreneurial children

“Give patients all the knowledge and let them decide!”

Joining the dots

Life consists of leaving dots in the air that only make sense when we look back and see them joined up. Shorr says he did not understand why he gave up television to devote himself to providing communication between thousands of patients and the best doctors until the day he himself suffered from leukemia. Suddenly that seemingly senseless professional leap meant everything. If he had continued to present Evening Magazine, today Schorr would be famous… and dead. But he had wanted to join the dots of his life with the only ink that defies our limits: generosity. In some mysterious way this showed that when you save others you are also saving yourself.

After graduating from Columbia I started an eight-year career as a reporter and I was director of PM/Evening Magazine and, in 1982, Telepictures in Los Angeles.

Were you interested in any specific area?

Medicine and science, but in those days I was oozing health and energy. It was my wife, Esther, who convinced me to film videos for the rising pharmaceutical industry.

Advertising videos?

Documentaries. Erectile dysfunction, for example. At the time, in the videos, anonymous, ashamed patients appeared in the dark. It was the same in cancer videos. Those appearing were either actors or they were hiding. We were pioneers in showing real patients sharing their problems on camera with other patients and looking for solutions.

Did you make money with those videos?

So much that my wife convinced me that we should devote ourselves solely to publicizing medical information. And one day I had an idea in the shower: founding a radio station to put patients in contact with the best specialists in their diseases. It was a huge step forward.

But all doctors have limited time.

But we already had the technology to multiply it! I was thinking of a radio program broadcast over the telephone with questions from patients on each disease and answers from leading researchers.

That meant giving power to the patient.

And it meant that, in the second broadcast of Health Talk we had 7,000 calls, although we were only covering multiple sclerosis, asthma, diabetes, rheumatoid arthritis and cancer.

A great service… and great business?

We received millions of dollars in venture capital and we later sold the company, once it was established, to Waterfront Media. We were successful, but, in 1996, during a routine check-up, they found I had serious leukemia.

You were a very special patient.

I learned that giving is receiving. What I had learned to help patients was now useful to me. In fact, it saved my life.

How?

I would be dead now if I hadn’t learned, before being ill, to stay up to date with the latest biomedical research. That was how I found out about, and was admitted to, phase II of a combined trial of fludarabine, cyclophosphamide and rituximab (FCR).

That was risky too.

Yes, but the alternative was certain death. I managed to save myself with the treatment ten years before it passed the tests and was generally administered.

Well done!

I received tomorrow’s medicine today. If I’d waited until tomorrow I wouldn’t have been able to have it. It convinced me even more that journalism and communication save lives.

Yours first of all.

I couldn’t stop thinking that every minute counted, that I had to get patients connected with specialists. And that in this way we would also speed up the biomedical research cycle. We could achieve exponential progress in the history of medicine!

Are you achieving that?

We all have limits. In 2011, like so many cancer patients, I developed a second cancer, a myelofibrosis.

I’m sorry.

But I’m great!

I can see that… I can confirm it.

And once again being up to date with the latest advances in research saved my life. I joined another clinical trial group and now I’m still taking little white pills to prevent the symptoms of the disease. Without them I’d be puffed up like a balloon.

But you’re not… You look slim.

But I haven’t got fingerprints, for example. It’s something I have to take into account when I renew my documents.

If that’s the only problem…

And I have to take the pills, of course. But I’m alive and happy. And we’ve chosen to live here, in wonderful Barcelona, to continue connecting patients from all over the world with each other and with the best specialists. I’ve just spoken to more than 800 doctors at a congress to tell them that well-communicated research saves twice as many lives than if it is not shared.

Doesn’t speeding up information raise hopes and create disappointment?

That’s a very paternalistic, bureaucratic approach which, I’m sorry to say, is being adopted by many. Politicians and civil servants mistrust civil society and its energy and the capacity of patients themselves to discriminate between hope and reality.

They take no risks to avoid mistakes.

Well they should ask the patients if they want to know everything about the disease, or perhaps they prefer politicians to decide what they can and cannot know.

Looked at like that…

Progress means giving all the power of knowledge to patients and then trusting their judgment and allowing them to choose. If I hadn’t been able to know and choose I wouldn’t be talking to you and, through you, to thousands of patients… Or is there someone better qualified to decide about the life and death of a patient than the patient himself?