The Patient Power Blog

by Andrew Schorr – Host & Founder, PatientPower.info
Andrew hosting a recent town meeting

Andrew hosting a recent town meeting

I have been involved in communications for patients with serious conditions since 1984 and became a patient myself, with cancer, in 1996. One thing that has really bugged me is that many people who have funded (or produced) programs for patients have assumed what works best is a watered-down version of the style of education for doctors. Heavy-duty clinical and a lot of slides and text. My wife Esther and I won national awards from medical journalists starting in the mid-’80s, because we didn’t take that approach. We have always featured real people, and any event we have ever produced has been an open dialogue and not like a college course. We have also put an emphasis on patients connecting with patients and now with care partners connecting with others, too. I am happy to tell you from the survey results of recent town meetings in lung cancer, melanoma and chronic lymphocytic leukemia that the in-person and online audiences, in scientific surveys, have resoundingly endorsed this approach—and they want more.

Last week I was critical of brief television ads and the associated slick advertising approaches that oversimplify discussion about serious conditions. My experience is patients and family members want the whole story in longer formats and with ongoing information over time. They want to regain control of their health. They are thirsty for knowledge. I have spent three years in Europe and despite what some European pharma people have told me, it is no different there. People are tired of any doctor talking down to them, withholding information or claiming they know what’s right when a little investigation or a bad result proves they were wrong. Our key message echoed by every top doctor and advocate we feature is you have to go the extra mile, “get smart,” when you or a loved one is diagnosed with a serious condition. The first answer or the simple one may not be the best, and the price of getting it wrong is high.

So where does that leave us? Since 98 percent of the town meeting attendees loved our open discussion format, what I call “Oprah for Cancer,” we are planning more of these in-person and online town meetings. Look for us before year’s end in Chicago, Houston, Palo Alto and Seattle at least and across a number of cancers. We are working hard to get financial support right now. And we are determined to head east. In Europe, we are cooking up events in London and in Germany. True dialogues between world experts, patients and caregivers. No script, few slides, no marketing hidden agendas. Just true communities devoted to the person with the diagnosis achieving better health.

We’ve been extending this approach online even when we don’t get to meet in-person. Stay tuned for more “Patient Café™” events from our partner, the Patient Empowerment Network. This is where a small group of patients, with audio and video, get together online with a conversation led by an experienced patient. We’ve already produced several in CLL, and more are coming. The video clips will be for all to see. Again the idea is an informed conversation. No speeches, no “webinars” (I hate that term!).

At Patient Power, we’ve been working hard to make our programs and offerings much more like what you experience in popular media and apply this style to specific serious conditions. If you watch CNN and Fox News, these days no one gives a scripted report. The correspondents and “experts” have a conversation with the hosts. And they don’t just talk about the facts, they always discuss how the “news” affects people’s lives physically and emotionally. That’s good journalism today, and that’s what we do for you for your specific condition.

Here’s a great example with a doctor, who is a cancer patient himself, about lung cancer; Here’s another one with a woman with CLL. Both are informative and inspiring conversations.

Just a couple more notes from those recent surveys. Over 40 percent of attendees will speak with their doctor about what they’ve learned, most everyone rates what we’ve done either good or excellent (mostly excellent), and the vast majority feel more confident now that they have learned more. That does my heart good!

I don’t know Oprah Winfrey, but I am betting she would say “right on!” to what we are doing for you. And I hope you do, too. I also hope that the other folks who spend resources on patient education will “get it,” too.

Of course, we are not at all perfect, so feel free to tell us how we can improve. People talked back to Oprah, and you can talk back to me!

Wishing you and your family the best of health!

Andrew

TV remote controlGreetings from Southern California as I visit family in the U.S. Along the way, I’ve spent some time on the bikes in hotel gyms and have had the chance to watch American television. And you can’t miss the flood of ads for, now, not only prescription medicines but also even for hip and knee replacement medical devices! The direct-to-consumer train from the big agencies on Madison Avenue in New York is running ever faster these days – and they tell a wonderfully slick, creative, and compelling story about the newest drugs and medical products. The goal, of course, is to have you rush right out to your doctor and ask them to make sure you get that product because “it’s right for you!” My warning is that feeling better with a chronic condition, now including a “chronic cancer,” is not so simple, and I am sure most doctors shake their heads as they see these ads. In this age of personalized medicine, there are few “one size fits all” treatments; and, beyond that, pills, shots, and high-tech medical devices are only part of the story to help you live well with a serious condition. Few ads acknowledge this. The Mad Men don’t have the time on TV to tell a more complete story, and their client just wants them to sell a product.

In the U.S. where medical ads for powerful treatments are widespread now, you the consumer have to be savvier than ever. That’s why you need to have a frank discussion with a doctor you trust. Don’t march into the doctor’s office with the assumption that what you saw on TV is right for you, discuss all your options. And go beyond discussing a product. Talk about a 360-degree view of your life with an ongoing health concern. Talk about diet, exercise, family issues, mental health. The ads never cover that, but it’s all part of your life.

I am delighted to tell you that we at Patient Power, along with some wonderful partners, have been working hard to provide you with unbiased information on “the whole story” for your illness to fuel your hope for a better, healthier life. Here are some examples I wanted to call out:
Does Mental Health Affect Your Overall Health?
Dealing with the Expense of Treatment
What Is Geriatric Oncology?

I don’t mean to say the ads are wrong. They are are just oversimplifying serious conditions, in my opinion. And, I’ll admit, as someone who believes pharma and the medical product industry should spend less on branded ads and more on supporting independently produced education, it bugs me a bit.

The bottom line is: be a savvy healthcare consumer. Remember, ads are filled with actors, every word has been scrubbed, every smile and movement choreographed, and “your results may vary.” Skepticism is a good thing when you view ads. And if your health is on the line, it is especially important. Yes, there are breakthrough treatments, these days, thank goodness! But which is right for you and when is not a simple decision, even though the ads might have you believe otherwise.

I welcome your comments and hope some of those “Mad Men” will write in. I am sure they are just doing their job and can take me tweaking them a bit.

Wishing you and your family the best of health!
Andrew

sick woman coughing

As I write this, I am sick—pretty high fever the other night, chills, yucky cough. I should have known!

Remember that nice older lady I was talking to at the apartment complex cocktail party a few days ago? Remember how she was coughing? She did her best to cover her cold, but I stood right there. Now, coughing just like she did and suffering with other symptoms, now after two trips to the pharmacy and one to the doctor, now after a chest X-ray, blood test and nose swab—I should have known!

Is it impolite to step away? As a two-time cancer survivor who gets chest congestion and even pneumonia too often, at the first sign of a social “cougher” should I have made a fast exit? I would now say yes.

And my cousin Jeanie, 86, had a similar experience nearby. A nice woman picked her up and brought her to a dinner party. The woman was coughing like crazy. Jeanie’s lungs are not the best, and she had misgivings—but she didn’t want to be impolite. Sure enough, Jeanie felt ill a day or so later.

Especially for us cancer patients, what’s the social etiquette in these situations?  I’d love to hear your stories and your views.

But I can tell you mine after my latest suffering: If someone is sneezing or coughing, get as far away as possible—maybe explain you are susceptible to infections but wave goodbye.

On the mend and wishing you and your family the best of health!

Andrew

Lung cancer patient Pam Griffith

Lung cancer patient Pam Griffith

It hit me again the other day as I hosted a lung cancer event in Tampa, Florida. If we get sick, aren’t we lucky if medical science—just then—has something new, either approved or in a promising clinical trial, that can help us get well?

Floridian Pam Griffith was dying from advanced lung cancer. Standard drugs weren’t working, and the tumors were obvious in several places in her body. With some effort, she was fortunate to enter a clinical trial for a new kind of medicine, a “checkpoint inhibitor” that allows her immune system to not be outfoxed by cancer cells. It has worked. Pam has gone from almost being on her deathbed to playing golf three times a week and may step that up now to four. She feels very good, and—having just met her in person—she looks great. Another man I met, Tony Benchina, was also dying. Soon after retiring after 41 years as a family physician, he got the kind of bad news he had given many others. Again, standard medicines weren’t working, and the new medicine that worked for Pam caused problematic side effects for Tony. But, thank God, there was yet something else that was new. It’s not approved yet, so Tony is in a clinical trial. But it is working. He is gardening and cooking once again. Remember, we are talking about the cancer that takes more lives than any other—lung cancer. This is so hopeful!

In a couple of weeks, I will see with my own eyes that story emerging in two other cancers, melanoma and chronic lymphocytic leukemia (CLL). I have CLL and am doing well, but that is not the same story for everyone. Those two diseases, when they advance, are killers. In Phoenix, I will have the honor on the weekend of March 28-29, to host town meetings for people with melanoma and CLL for the Patient Empowerment Network and partners including the Melanoma Research Alliance, the CLL Global Research Foundation, Banner MD Anderson Cancer Center and MD Anderson Cancer Center in Houston. In these conditions too, people who would otherwise be near death are living well. Breakthrough medicines are here and with more coming—mostly daily pills—to help turn off the cancer cells or to allow the immune system to recognize and kill the cancer cells it missed the first time around.

I am meeting people who have the good fortune to be sick at a time when there are truly breakthroughs to give them back better health. When you meet scores of people like this, you feel grateful to the often unseen researchers who made this happen.

At these town meetings, we discuss how you can gain access to such breakthroughs. Often it starts with being in a clinical trial—it did for me with CLL way back in 2000. Or it may be getting on a new medicine soon after it is approved, that happened for me in 2012 when I developed a second cancer, myelofibrosis, and, voila, there was a new drug to control it. Lucky me!

Of course, there are obstacles, you or family members may be afraid of you becoming a “guinea pig” in a clinical trial, or the requirements and travel for checkups may be too tough. You may have insurance issues, or your local doctor, who you like, may not be in the know. After all, how can a general doctor keep up on everything that is new or promising? We discuss all of these issues on Patient Power all the time, so please join our community, so you are “in the know.” And, if you can, attend one of our upcoming town meetings.

There is not a new medicine for everything. Sadly, many people with advanced cancers do not have a breakthrough to count on. But there is a change. Wouldn’t it be great if the change was happening in the condition that afflicts you right now? If that is happening, be sure you can take advantage of it!

Wishing you and your family the best of health!

Andrew

My cancer diagnosis was the toughest challenge I’ve ever encountered in my life. I knew about cancer, had friends and loved ones who lost their lives to cancer, but never in a million years did I think it would happen to me. So, obviously, I wasn’t prepared. Why would I be? People don’t study cancer […]

Read Article

I have written many times here about my frustration when groups that are supposed to have a devotion to cancer patients as their top priority get sidetracked by egos, distrust of one another, bureaucratic procedures and turf wars. Over the years, I have seen it happen much too often. But I am happy to report […]

Read Article

At 26, they told me I had an MPN and to take a pill. So I took it. At 29, they told me I had a different MPN and to take another pill. So I took it. At 38, I listened to what they had to say. And then I researched, I questioned, I consulted, […]

Read Article

Just two weeks ago, I wrote of losing an old television colleague to liver cancer. From diagnosis to death was less than two months. Today I am writing about the death this past weekend of another old friend and mentor, Dick Crew, who fought diffuse large B-cell lymphoma for about a year. While I have […]

Read Article

By Carol Preston I lost the dearest of friends last month. For those of you connected with the life sciences, you may know the name Joel Blank, a Yale-educated PhD who helped develop and win FDA approval for MRI, magnetic resonance imaging. Joel also co-founded five start-up companies. But Joel’s true passion was his family: […]

Read Article

I am a two-time cancer survivor of chronic lymphocytic leukemia and myelofibrosis. I think about cancer almost every day as I wonder what the future may hold and how I am feeling that day. I think about my friends with cancer, too. Of course, I am thrilled that the publicity around World Cancer Day can […]

Read Article
April 2015
M T W T F S S
« Mar    
 12345
6789101112
13141516171819
20212223242526
27282930  
Older Reset