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Here's news and info about three primary blood cancers, Lymphoma, Myeloma and Leukemia with a decided patient's perspective.  I hope this helps whether you're newly diagnosed or veteran survivor.  

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Patient and Healthcare Advocacy, NAHAC and APHA resources

Before beginning treatments for blood cancer, I rarely thought about healthcare, let alone patient advocacy.  My health was great, no issues at all.  I took only 81mg of baby aspirin/day, an effective drug for the prevention of clots and potential cardiovascular events.  That was March 2007 BC, (before cancer).  That all changed in April 2007 AD (after diagnosis).  As I sat in the infusion room with other patients, I observed all kinds of people needing help.  What really “killed me” as they say was to watch older folks pretend they understood orders and knew what to do next.  Damn, I’m relatively intelligent, but even I struggle with what pills should be taken on what day, etc.  I have to keep track of prescriptions, expirations and how many pills will last how long.  Not easy.  Who’s going to help that very sick person whose brain is working at half capacity during treatment?  A patient advocate.

When arriving at DFCI at the check in desk, I’d receive a list of instructions/appointments and would wonder- how do people get all this done?    Participating in Clinical Trials typically requires more batteries of tests.  Actually I like this.  In a way it’s comforting.  But the schedule isn’t easy.  8:00AM phlebotomy lab, blood pressure, weight and draw 8-12 tubes of blood.  8:45AM, three EKG’s every twenty minutes.  10:00AM chest X-ray.  11:00AM Infusion room, begin chemo, 4 hours.   Red Sox playing tonight, try to get out of town before 3:00PM, not.     I think it took me a few years to learn where to go, which building, which bank of elevators, which floor, which facility Dana Farber Cancer Institute or Brigham & Women’s Hospital.   Who’s gonna help the old timer get around?  A patient advocate.  

I’ve been fortunate to have great health insurance from Blue Cross who has covered just about every expense except a few co-pays and prescriptions. As my own advocate, I upped my coverage anticipating some incredible healthcare expenses.  Even so, when those weekly $25K -$35K chemotherapy bills and $8-9K invoices for plasmapheresis and similar procedures would arrive, along with stacks of smaller bills, I’d wonder who’s going to help that single, working Mom caring for her son battling Leukemia?  A patient advocate.

I've been even more fortunate to have an incredible, thoughtful, caring caregiver, my wife Jan to whom I should devote an entire blog, website or book.  Caregivers are more powerful than chemotherapy.  Jan would keep track of all prescriptions especially when I had "that fuzzy head", take charge of the situation at hand issuing orders- 'put all those pills in your weekly pill box'.  As one who loves accounting, she takes all those incoming invoices and dutifully does what bean counters do well. She is my full time, caring patient advocate.  Everyone should have one.     

I wondered who and what’s a patient advocate?  Until one day, somebody said, Jack, you’re such a caring patient advocate.  Who me?  You take phone calls, answer e-mails, research and offer advice.  Each of us can be a patient advocate.  But also important there are thousands of  “professional” advocates.     Then recently, someone called me a healthcare advocate because I had been working with the Leukemia & Lymphoma Society to speak with lawmakers about oral parity chemotherapy legislation.   Actually, I did a ton of arm twisting, phone calls, emails and unofficial lobbying.   Gee, this is Sales 101, piece of cake, except for the political implications.    

Using my basic business and marketing skills as a career Sales VP in High Tech, I have been performing a variety of ‘advocacy’ services, particularly as a public speaker and big mouth when needed.  As I move deeper into this business offering a unique patient perspective, I need more professional education and more connections with other advocates who can help.  I have no meaningful experience navigating through the rough seas of insurance claims but hope to point people in the right direction.  There are so many aspects of advocacy that none of us is an expert except in specific focused areas.  There’s a large community of experts that should be engaged when needed.  

One of the best sources of information concerning professional patient and healthcare advocates is the National Association of Healthcare Advocacy Consultants (NAHAC) who held their 4th Annual Conference in Boston last week.  Hurricane Sandy didn’t interfere as expected so I attended this conference. Wow, blew me away, my kind of people. I met a long list of passionate, caring, bright advocates.  The theme, “The Leading Edge of Reform” focusing on “Roles and Goals for Healthcare Advocates” really hit home with me. 

An impressive list of speakers including Physicians, Registered Nurses, Social Workers, Business Managers and Leaders and Advocacy Service Providers gave fabulous presentations in their respective fields of Advocacy.  Topics included the keynote, Reinventing Primary Care,  What’s Next for Healthcare Reform ,  The Patient-Centered Medical Home,  Getting Past the Gatekeepers, more specifically How to Communicate and Collaborate with MDs, RNs, and Medical Staff and on the other side, How to Communicate with Clients and Families.  Next we explored End of Life Wishes, Introducing the Science of Mind Body Medicine, How to Solve Health Insurance Problems,  Transitioning to Independence,  Leaving the Hospital and perhaps the most exciting for me- New Frontiers in Cancer Research.   

It was particularly interesting to hear, Aging Parents: Navigating the Journey wondering how my children will enter that realm at some time in the not too distant future.  There was a wrap-up with a panel of experts centered on the talk-, What I Would Do Differently, Lessons From the Trenches.   Be sure to check out NAHAC to see if you can benefit with membership in this professional, well managed association of advocacy consultants. 

In a follow up blog, I’ll present some highlights of meeting with two key sponsors,  Joanna Smith, LCSW, MPH who is the founder of NAHAC (Gee, I didn’t know that), President of her own healthcare consultancy, Healthcare Liason Inc. and co-author of the book, Health, Mind Body Soul.  Talk about talent!  More on Joanna, later.   I caught up with a true marketing mogul and Every Patient’s Advocate, Trisha Torrey.  Trish is the president and founder of The Alliance of Professional Healthcare Advocates (APHA) previously the AdvoConnection, author of several books centered on starting and growing your health advocacy practice.  What a dynamo.  Trish is a bright, friendly marketing pro, newspaper columnist, author, professional speaker and teaches workshops on this timely topic.  Be sure to check Joanna and Trish’s websites.  Good stuff!  More to follow….  

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