“Andrew

Without a doubt, 2017 has been a roller coaster ride on a global, national, professional and personal scale.  Natural disasters and political upheavals have to some extent been counterbalanced with renewed activism and hope-filled medical advancements that impact all of us very close to home.

Roller coasters have lots of expected and unexpected highs and lows, often leaving riders breathless and needing a spell of calm afterward.  And so, I want to take a few moments here—in the calm before the 2018 ride begins—to share with you what Andrew and I see in retrospect—both personally and in context of our work with Patient Power—and what we hope 2018 will bring. 

First, on the personal medical front…As many of you know, Andrew is a two-time cancer survivor of both CLL (chronic lymphocytic leukemia) and an MPN (myeloproliferative neoplasm). While oral treatment with an oral JAK-2 inhibitor has kept his MPN in abeyance for five years, his CLL reared its head this year after a 17-year remission post-FCR treatment.  We are pleased to say that now, after six cycles of obinutuzumab (Gazyva)), Andrew's bloodwork has normalized and he has been cleared to do his normal routine of working too hard and traveling for fun (and profit) with me to parts unknown!  We are ever grateful to the hematology/oncology community of researchers and practitioners who continue to discover and deliver new treatment options that are life-extending and optimize quality of life for so many—including Andrew.

This past year has been a wild ride at Patient Power—in a good way!  With all of the progress being made in drug development, new approaches and expanding cancer treatment options, we have had probably the busiest content production year ever.  Between news coverage at the major medical conferences, collaborating with many advocates to have the patient voice represented at more specialized medical meetings, and developing patient-centric town meetings and webcasts, our growing family of producers and support staff has stayed incredibly busy and super motivated.  The "face of Patient Power" is no longer just Andrew and I…we have many wonderful patients, survivors, bloggers and social media gurus, and care partners globally who have stepped up to help us disseminate our content and extend our reach to our communities in a way we could never do alone.  In partnership with a great social media listening company, Liquid Grids, we launched The Cancer Connection on Facebook that now has nearly 90,000 followers who have vibrant and supportive conversations with each other on subjects related to their cancer journey.  We have formalized collaboration with some incredible companies that offer tools and services that are complementary to ours; for example, Antidote's Clinical Trial Finder lives in each of our health centers, and we are co-promoting their tools for patients alongside our deep informational content. 

In 2017, I broadened my involvement with Patient Power to include marketing, operations and care partner advocacy.  I also saw the need for our organization to be more technically and analytically astute and agile. To that end we have added a wonderful Chief Technology Officer, Susan Wisowaty, who has already improved the user experience on our website and is developing the reporting we need to better understand our communities and what is needed to better serve up relevant and timely content.

This year also saw the launch of some key initiatives we hope to expand in the coming months.  One in particular called Precision Medicine for Me—first piloted for lung cancer patients—is designed to raise awareness of the need to be genetically profiled prior to making treatment decisions, which has become so critical given the targeted nature of new therapies.  We want patients to get the right treatment at the right time, and genetic testing is a key to this.  We hope to secure funding to expand this program in the near term. 

So, what do we see on the 2018 horizon—both for cancer patients and for Patient Power?   

  •       More and more cancer treatment progress!  Both at ASCO and at ASH (the two annual key global conferences for cancer), we heard lots of encouraging findings across many cancer types.  While "cure" is not yet being shouted from rooftops, we are hearing more and more that medical science is gaining a much better understanding of the mechanisms that cause cancer, and as a result are developing better and less toxic approaches to managing the diseases and providing longer and better quality of life.
  •       world-mapPatient Power extending its global community reach.  During this past year we added the ability to consume our content in a half-dozen languages and began to create original content in many more languages, tapping experts from around the world to do so.  This coming year we plan to do even more of this by attending and interviewing leading experts in other countries and surfacing great research happening beyond our U.S. borders.
  •       Raising our voice as an advocacy organization to support better access and affordability of new cancer treatments. We are well aware that the promise of better treatments for cancer is currently tempered by great concerns about how available, accessible and affordable these leading-edge treatments are.  We will continue to work side-by-side with other patient advocates and like-minded organizations to engage in the discussions and actions it will take to get the best treatments available to every patient based on their unique circumstance.  Admittedly this is a complex issue but we will continue to work on this as a patient-driven team. 
  •       Continued improvement of the online experience at Patient Power.  Our goal is to make your access to the latest and most accurate and relevant information as easy as possible. We want you to be able to share the information with others as needed, and be able to find just what you need when you need it.  As we move through this next year we plan to make some major updates to our site that will help with this on any device you use.

In all, Andrew and I are very, very hopeful that 2018 will bring many good things for our growing community of patients, care partners, survivors and all those who support us.  It does take a village to make good things happen, and we are blessed with incredible global cancer specialists, tremendous staff, giving sponsors, and collaborating organizations who all work every day to make the roller coaster we are all on just a bit less scary.  We thank every one of you!

Patient Power team[The Patient Power Team] 

Happy Holidays and a Healthy New Year to all—remember …Knowledge can be the best medicine of all.

Esther Schorr (for Andrew too)