Back to School: An Ongoing Need for Patients

March 24, 2013
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patient engagementIt’s tough to be a cancer patient today. Not just because you have cancer, but because you have to do a lot of work to ensure you have knowledgeable doctors, the best care, and that you do your part.

patient engagementIt’s tough to be a cancer patient today. Not just because you have cancer, but because you have to do a lot of work to ensure you have knowledgeable doctors, the best care, and that you do your part.

The human genome project has ushered in the age of “precision medicine.” Cancer centers around the world are leveraging vastly cheaper approaches to analyzing the genetic profiles of a new patient’s cancer. At the same time upstart biotech firms have been developing an increased parade of “targeted therapies,” many of them in the form of expensive pills. The changes can be bewildering for doctors and they certainly are for patients who have the overlay of fear.

The other day I hosted a town meeting on behalf of MMORE (Multiple Myeloma Opportunities for Education and Research). It was held at MD Anderson Cancer Center in Houston and 200 patients and caregivers turned out. They heard from experts including myeloma mentor patients Paul Rabuck and Eunice Marks; Thomas Martin, M.D. from UCSF; and Robert Orlowski, M.D. and Brianna Garrison, Licensed Master Social Worker, both from MD Anderson. They also came to meet others with the same health concern. The clinical part of the discussion took more than an hour as the doctors took us through the vast changes in treatments, research and side effect management. The audience took copious notes.

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The discussion will continue in support groups, social media, advocacy groups and on the Patient Power site. The good news is there is lots to talk about and clearly, with some cancers – unfortunately, not all – people are living longer and better. But it takes work and some sophistication to cut through the clutter of old information and wrong or misleading information.

patient engagementThat was apparent to me when I went to Los Angeles after Houston. While I was driving there, and listening to the radio, the airwaves were filled with ads for area cancer centers. It’s big business. The ads especially plugged technology, new million dollar radiation devices and the stories of grateful patients.

If only it were that simple: go to the hospital that “cares” about you and has the gleaming machines. But in this age of precision medicine that is far from enough. It is unlikely even the slickest center has the best doctor for every cancer. They may lack the latest expertise and the availability of a clinical trial that might give you the hope of receiving tomorrow’s medicine today – and there are a lot of promising medicines in research.

That’s why you have to be a savvy patient and do your homework. You have to seek out the experts and weigh what they say against what is being offered. You have to be discriminating. And, in cancer, it’s doubly important because if you get the wrong treatment first you may be harmed and precluded from the right therapy later on. You can’t always recoup. I am devoted to connecting patients with unbiased information and helping them become students of their disease.

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Let’s applaud the patients who attended our town meeting: becoming educated is critical for anyone facing cancer today. No one dreams of taking a college-type course in an illness but, to get the best care today, it’s a wise approach.

Wishing you the best of health,

Andrew