The Patient Power Blog

by Andrew Schorr – Host & Founder, PatientPower.info

clock_200x133For most cancers, there are no longer “one-size-fits-all” treatment plans. And at the recent American Society of Hematology meeting in San Francisco, we heard not only that this is changing but that it is changing quickly. I almost feel sorry for the growing ranks of “nurse navigators” who will have many long nights studying just to keep up. Monoclonal antibodies for myeloma, new medicines for CLL, some people stopping medicine for CML, many trials in MPNs, breakthroughs in lymphomas and some acute leukemias. Add to that the looming “immuno-oncology” and how experts are saying it could revolutionize cancer care. How do we all keep up?

We’ve just interviewed more than 40 expertspatients as well as MDsabout these topics, and we’ve been bringing what they say directly to patients worldwide living with these conditions, and their care partners. This year we even streamed a session with a myeloma expert live, so patients could ask questions about the news right as it happened. And we have been rushing to publish our video interviews that were recorded. Even with that, patients have been writing to me expressing frustration that it takes so long. They want news for their cancer NOW! And then what happens? They call or visit their clinic and ask questions. I imagine this week after ASH there will be many calls and many questions. That’s a good thing.

Community oncology leaders like Dr. Rob Rifkin from the US Oncology Network told me during an interview the other day they are committed to patients having access to the latest treatments and clinical trials close to home. I got the same message when chatting with the Sarah Cannon Cancer Center folks. Together, they treat hundreds of thousands of cancer patients. And our effort is to make those cancer patients smarter and now to do it faster.

So that brings me back to the nurse navigator sitting alongside the patient. They will have to sprint to keep up. But before we had nurse navigators, there were few people who had the time or the role to answer questions to foster education. So we are taking huge steps forward in a dialogue between the healthcare team and people affected by cancer. Thank God, in many cancers there is so much to talk about.

Remember when you got your first computer, and you thought the processing speed was pretty fast? And then, over time, it wasn’t fast enough? Now cancer patients are beginning to expect a faster pace: faster genetic analysis of their precise situation, faster and more complete discussion of the optionsincluding trialsand a faster pace for clinic-to-patient communication overall.

I know, by law, hospitals and clinics in the U.S. will soon be required to have online patient portals active. That will create secure channels for our test results, our appointments, and it should also be a place where personalized education lives, tooand that changes as our situation changes.

For so many years, not much changed in cancer care. Now it makes your head spin. The experts are excited and many patients are, too. So we better start actively talking to one another, regularly, and faster. When you have cancer, taking the slow road to better care or a cure is not an option.

Wishing you and your family the best of health!

Andrew

 

Andrew Schorr at ASH 2013

Andrew Schorr at ASH 2013

This is a pivotal time for many, many people living with blood-related cancers like chronic leukemias, multiple myeloma, lymphomas and myeloproliferative neoplasms (MPNs). We have been calling most of these “chronic cancers” lately, because new medicines have been coming out this year with many more in late stages of research. The hope is there is—or will be—a medicine, or combination of medicines, for you and me (I have two of these conditions) that will allow us to live longer with few side effects. If we are lucky, there may be a progression of ever better medicines to enable more of us to re-write the medical textbooks by living long lives. That’s what has happened in chronic myelogenous leukemia (CML).

The next installment of blood cancer news comes this week at the annual meeting of the American Society of Hematology (ASH) as 30,000 or so physicians and researchers from around the world gather this year in San Francisco. As I have for about the past 10 years, I will attend this meeting to bring the news directly to patients. I have a keen personal interest as a patient and as a journalist covering it for you and your family. With just a few other “patient advocates,” we have pioneered making this not just a meeting for doctors but for patients, too. This year our Patient Power team will “fast-track” a number of the 40 to 50 video interviews we expect to produce to post them online within days. And we even have a plan to stream a couple of video interviews with experts live, so you can ask questions—no time lag before you hear the latest. And why not? Isn’t it about time the “black box” of medical science be peeled open further for the people most affected—the patients?

ASH-logo_150x143This year, I am excited we’ll be hearing more about “immuno-oncology” with promising late-stage medicines that can reactivate our immune systems to kill the cancer cells they missed earlier. This could be a very big deal for many cancer types. Other expected news includes new targeted, monoclonal antibodies for myeloma and drugs that reduce scarring in the bone marrow for myelofibrosis. And there are more breakthroughs with pills for CLL and lymphoma.

There are obstacles, of course, to getting the word out to you as broadly as we would like and for the news to have impact for you in conversation with your doctor. The medical profession and the healthcare industry are slow to change. There are competing self-interests, and they don’t always align with what’s best for you and me, wanting to be healthier and live better right now. For years, we have been at the mercy of the slow pace of news dissemination—especially for rare conditions. Support for educational activities has been much less than the millions spent on marketing.  Besides that, as patients at various times we have been told we don’t understand the science or even need to or that it’s too complicated for us. Sometimes we are told we are too old for what’s new and are doing well enough. And when it comes to communications channels, there are groups that try to suggest that the only channel to follow is theirs. If they don’t report it, it is not significant or not credible. We, at Patient Power, of course, don’t believe that. We’ll do our best, but we want you to always seek multiple sources to get perspective for what’s right for you and to ask questions. Thankfully, the ASH meeting is great for that.  More and more of us are representing patients and determined for you to be in the most knowledgeable position to take control of your healthcare. This is another step in what our friend e-patient Dave says is the e-patient “revolution.” So stay tuned! Be signed up for alerts on our website and let us know what you want to know. And, as you learn what’s new, query doctors you trust to see how it applies to your situation.

“Talk” to you soon from ASH and, as always, wishing you and your family the best of health!

Andrew

Patients connecting at a recent Patient Power event

Patients connecting at a recent Patient Power event

It was a Harvard Business School professor, in 1997, who coined the term “disruptive technology.” Thanks to Clayton M. Christensen. He understood that new things can shake up an industry or create a new one.  The PC, cell phones, cloud computing are great examples. But in pharmaceuticals, diagnostic testing and, more broadly, in healthcare in general, I would suggest that today’s best example is a human being, the patient. The patient is starting to shake up these industries, because they are getting smarter about their diagnoses, what tests are required and when, what the results mean, what clinical trials and medicines are available, and how side effects can be controlled. This is certainly true in cancer like the ones we cover in depth at Patient Power.

For a few years now, it has been in vogue in hospital marketing (at least in the U.S.) that care is portrayed as  “patient-centric.” But in many cases, that has been just marketing. The healthcare teams, comprised of mostly very well-meaning professionals, did their best on ever tighter schedules and with the knowledge they had. It has been variable how much respect has really been shown the patient as a consumer. Patients were forced to just accept what they got. But that’s changing fast. For years, the Internet has opened the “black box” of healthcare. We can learn about our diagnosis and meet others who have it, too. We can hear about all the latest treatments and find out who the experts are. We can discover what’s in research and how we can participate. We can become smart—often smarter than the first doctor we see—and we can quickly connect with others, so we are no longer alone. My passion has been to make this education and empowerment easier and more accessible to all.

What’s very cool now is that all this is coming to our mobile phone. So we can get the information and support we want in words, pictures and video—live or on-demand—in any language and where and when we need it. The “powerful patient” is poised to disrupt healthcare and be on top of the power pyramid instead of at the bottom.

I have an image of how a Swiss banker must treat wealthy clients who fly in to make deposits. I am not saying doctors and nurses should bow to us when we come in, but I do feel they should value us as increasingly well-informed consumers who are willing to partner with them for state-of-the-art care and strong efforts to preserve quality of life. We are people who will work hard on our own to discover all the options among healthcare providers, available tests and pharmaceuticals. If you truly partner with us to help us get the best option, whether it is yours or someone else’s, you will ultimately win. If you don’t, we’ll walk. And your slick marketing efforts, not backed by a 360-degree view of the facts, will be shown to be hollow and exposed.

Patients are now talking to one another today, and that will only increase. Our conversations will cross borders and hop over language and cultural barriers. It is happening now and will only grow. We are the disruptive technology. And while I respect so many in the traditional healthcare industry, I am really excited for us patients.

I welcome your comments!

Wishing you and your family the best of health!

Andrew

orgLogo_lungevity_180x39As a patient navigator, young adult cancer survivor and former caregiver, I know what the term “empowered patient” means.

It’s a concept where knowledge about your disease is powerful, and advocating for your own quality healthcare aids in your survivorship. There are a checklist of questions I can arm you with along with disease related information and education—all of the things that make you a more informed patient. And while all of those things are relevant and even critical, the fact of the matter is all the tools in the work shed won’t ensure that you can build a house or build it well. And there’s a big difference between a small building and a large five-room home. Let’s face it. Not all health conditions are complicated, and not all cancer diagnoses are the same.

I learned this firsthand recently with a new health condition I was diagnosed with that made my 1995 cancer diagnosis feel like a walk in the park. It took about 6 months to receive the final diagnosis. I “fired” two specialists, had 11 tests, four different scans and a biopsy. My health status for those 6 months was uncertain. I felt overwhelmed with the healthcare process and with medical professionals who didn’t focus on patient-centered care or practice even basic communication skills. This patient navigator needed a patient navigator! Looking back now, I can laugh at the irony, but at the time I really wanted to scream. THIS is what a few of the patients who came to me at LUNGevity had experienced. I finally understood.

Did that experience mean that I hadn’t been a capable patient navigator? I really don’t believe so. But now I’m better informed. If anything, it’s made me more compassionate to the frustrations and difficulties that patients face, and now I know how to navigate around those frustrating roadblocks.

My best advice to new patients is to get informed about your disease and treatment options, connect with other patients who have been through what you have been through, and never stop fighting for yourself until you are heard and receive quality care.

While my personal experience made me aware that not all doctors focused on patient-centered healthcare and not all medical professionals and staff cared about their jobs or the patients they serve, it also made me aware that there are really great specialists and medical professionals out there and that as patients we can never have enough tools or instructions on how to navigate this complicated process of medical treatment and survivorship.

That understanding is one reason why I believe in the importance of collaboration and partnerships that focus on educating and supporting patients and their families. I’m happy to announce a new partnership between LUNGevity and Patient Power. Patient Power is dedicated to providing patients with the resources and information they need to have the confidence, knowledge and hope to help the patient—or their loved one—live well with cancer.

At LUNGevity, we know that when someone is diagnosed with lung cancer, there are often more questions than answers. How do you get information you need to make the best decisions about your care? When exactly does survivorship begin? LUNGevity Foundation and Patient Power are joining forces to help patients engage in active communities with medical experts and patient advocates and to get educated about their disease by providing news that brings a meaningful impact to survival rates while diminishing stigmas that are too often associated with having lung cancer. Learn how to live well, so you can survive well. Stay tuned for exciting collaborations that will give you access to more tools to keep you strong on your journey.

Connect with us on Facebook, at in-person events across the country, or help others breathe easier by sharing your story that could be featured in an upcoming program.

Katie Brown

When I was first diagnosed with chronic lymphocytic leukemia (CLL) in 1996, I just wanted the doctor to heal me. I dreamed of a magic wand that a healthcare provider could wave that would take the disease away as suddenly as it had appeared for me (even though it had probably been developing for years, […]

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My name is Margo, and I was diagnosed with PV in late spring of 2014.   Probably like many of you with an MPN diagnosis, it was incidental.  I was attending a special event and did not feel well.  This led to a series of steps, which brought me to Dr. Brady Stein, a wonderful doctor.  […]

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Social media that connects me with other people with cancer—especially the specific cancers I have dealt with—has been a godsend to me. In 1996, when I was diagnosed with chronic lymphocytic leukemia (CLL)—a disease I had never heard of—it was other patients on the original ACOR.org listserv that connected me with an expert in my […]

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In short, YES. It’s the only way treatment is advanced in diseases like multiple myeloma and has resulted in FDA approval of six drugs for myeloma treatment in the last 11 years…with more coming.  We don’t have a cure yet, but I’ve seen survival averages double, even triple since I was diagnosed 20 years ago.  […]

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I had recently retired and started to get busy with my projects when I paused briefly for a routine physical—no worries, just a quick in-and-out and back to the fun stuff. But wait. There’s more—like the doctor bringing me back in to his office, and closing the door. “We have confirmed that you have cancer. […]

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As I listened to Esther tell her story, my own came flooding back to me. My husband was always the “tough guy”—nothing was too heavy for him…literally. He was very “old school”—wanted to be the “man” of the family—and I should be the “weaker woman.” Well, that never really existed—maybe only in his head. I’m […]

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