Why Big Pharma Should Support Sustained Cancer Patient Education

It wasn't so long ago when most cancer patients died in pretty short order. It wasn't so long ago when most all cancer drugs were infused at the clinic or hospital. It wasn't so long ago when there wasn't much choice about treatments, or schedule, or managing side effects. But now the whole world of cancer care is changing, fortunately, and Big Pharma, the richest stakeholders, need to step up in new ways. Here's why:

Today many cancer patients have more approved treatment and clinical trial options than ever before. Choices for their doctors are more complex. And because cancer patients are living longer more of us (I have two chronic cancers) are playing a greater role in care decisions. We have time to "get smart." And smarter patients are increasingly influential about diagnostics, treatments, trials, and public policy. I KNOW what I'm talking about. Here's an example. In 1996 I was diagnosed with chronic lymphocytic leukemia, CLL. I started leading telephone talk shows, webinars and in-person town meetings. That has led to our team reaching thousands of patients and family members and educating them. Today my group, Patient Power, has a contactable database of 8,000 CLL patients and extended reach through long-term partners. Tomorrow we are producing another one of our town meetings for CLL patients. More than 500 people are registered to attend in-person or watch online like a TV broadcast. Thousands more will view the video clips.

If you ask oncologist today they will tell you CLL patients stand out as being knowledgeable. We have been networked for years. There are huge communities on Facebook and other sites. We exchange information, query providers, and play an active role in what's right for us. A recent Patient Power survey showed 15% of patients said they had a change in their treatment plan because of what they learned from us.

Here's the point: Big companies like Pfizer, Genentech/Roche, Abbvie, Amgen, Takeda, Lilly, Merck, BMS, Janssen, and Bayer (sorry if I left you out) have many cancer medicines and a lot more coming. IF patients are living longer, and if smarter patients are increasingly influential in their care, doesn't it make sense to make a sustained commitment to cancer patient education? And not just in one therapeutic area, but in several?

In my opinion, for too long Pharma has only expended resources for patients at very specific times: when you are trying to fill a trial or when a new drug has been approved. But this ignores patient influence throughout our journey: what drugs should be developed, how do we pick a trial or even know about one, do we understand the changing landscape of existing or coming treatments, what are the financial implications of choosing a treatment, will we adhere to a treatment plan or even stay in a trial, how will we think about a plan B if treatment A doesn't or no longer works, will we tell our story to produce insights or affect public policy...??? For Big Pharma which has billions of dollars invested shouldn't more money be spent in a sustained way to help patients become smarter? If you believe you are innovating breakthrough products doesn't it make sense to provide resources for support of patients just like you do for doctors?

I understand there are many competing priorities for a CEO and allocating significant resources for patient education has been way down the list. But you don't have to be a whiz kid from McKinsey to know it makes sense long-term. Think about it. In this Internet age all of us for our own care or that of a loved one are seeking credible options and answers. If Big Pharma sees oncology as a fertile ground for success, put your money in all quarters and ensure patients as long-term stakeholders are included in a meaningful way.