Tuesday, July 30, 2013


Please circulate this widely to anyone and everyone you know who was ever treated for breast cancer.  Help the Dr Susan Love Research Foundation develop a questionnaire which will become part of the Health Of Women Study.  This is our chance to make sure all the right questions are asked.  When enough of us share our experiences, meaningful research can be developed based upon what's really happening, and not just what others may think is happening.

Read the instructions.  Simply submit the question.  No need for (this is primarily a note for myself) long winded elaboration.  Do share.  And, if you have not joined the HOW study, now might be a great time to do that, too!

Thanks to my buddy, Christine doing exactly what is instructed in the message.  She forwarded me the email.  I cut and pasted the whole thing...

Here you go and let the questions fly!

Social media
Act with Love
Breast Cancer Survivors: Help Us Develop a Questionnaire on the Collateral Damage from Treatment
Those of you who responded to my recent blog on the collateral damage from cancer treatment will remember that I said the Health of Women (HOW) Study was going to investigate the price of the current treatments to our bodies, our minds and our souls.  In order to do this we need your help.  If you haven't already, we need you to sign up for the Health of Women Study so that we can document your health, breast cancer diagnosis, and breast cancer treatment.  We also need you to help us develop a questionnaire that we can use to collect all the varied side effects from treatment.  We have several questionnaires in development, including those that focus on exercise, diet, and the environment, and hope with your help to put one together on the consequences of breast cancer treatments that we can release in January 2014.
We are soliciting your suggestions regarding side effects from your surgical, radiation, hormonal and/or chemotherapy and targeted therapy.  Although physicians and researchers have developed questionnaires in the past, there has never, to my knowledge, been a questionnaire developed by those who experience the problems.  We are interested to learn about any symptoms or side effects that you have experienced related to your treatment, including joint pain, chemobrain, lymphedema, numbness, pain in the chest wall, sexual problems, and anything else that you've noticed.  This is our chance to document what you are experiencing rather than just what the doctors THINK you are experiencing.
If you would like to help, we ask that you email us at how@dslrf.org.  It will help us if you can, as in the game show Jeopardy!, put your response in the form of a question rather than a paragraph describing what you went through.  For example, "Is it normal to keep forgetting things that were so easy to remember before my breast cancer?"  or "Will the numbness in my toes ever go away?"  Remember we will have the information about your health and cancer treatment from previous HOW questionnaires, so you don't need to repeat it.
Once you are finished, pass this email on to your online and in-person support groups and all the survivors you know!  We need lots of input!  We will pull all your questions together and make a questionnaire for survivors in the HOW Study.  Once we collect the data and analyze it, we will let you and the world know what we find.
As many of you pointed out, this is a topic which we rarely talk about because we are indeed happy to be alive.  That being said it is important for us to let the world know that there is a big price for the cure - not only in dollars but also in our bodies!  We need to remind the medical world that there is a need to find better treatments with fewer side effects.  And most important, we need to find the cause of breast cancer so that no one has to pay the price of survival.  
Join us!
Dr. Susan Love
Chief Visionary Officer

Numbers You Need to Know


2811 Wilshire Boulevard, Suite 500
Santa Monica, California 90403
310.828.0060 | 
Dr. Susan Love Research Foundation
invests your money carefully.

Dr. Susan Love Research Foundation | 2811 Wilshire Blvd. | Suite 500 | Santa Monica | CA | 90403 |info@dslrf.org

Monday, July 29, 2013


How DARE anyone ever utter these words to a cancer patient.  Ever.  Language alert and it's not for the F Bomb dropped in the third paragraph.  How does this grab ya?

"One day cancer will be the best thing that happened to you."  

You must be kidding me.  REALLY???  I would say it's a good thing this twitter exchange took place on a Saturday afternoon because this would have created quite a twit storm.  I know what I'm talking about.  A summer Saturday.... twitter isn't really buzzin' much.

Today, however, it's Monday and it's time to stir it up.  I can't believe my eyes but alas, the eyes don't lie.  I'd like to know if this was a delusional statement or if perhaps it was written in a drunken stupor.  Maybe someone was sucking on a hash pipe?  The authoritative tone is almost as awful as the message.  Almost.  But not quite.  WHAT.THE.FUCK. 

A few screen shots...

Let me just say this.  It's seven years later and I'm still waiting for "one day"  .....  That was rude, crude and WAY out of line.

Ummmm REALLY????  YOU, Dr. Bone, might do well to rethink your words.  I have excellent health insurance and my out of pocket costs for care at MSKCC are in excess of $6,000.00.  I have diminished brain capability thanks to the treatment to (hopefully) give me an edge against recurrence.  My mom is now metastatic after what appears to be a 20 plus year dormancy.  I have had a number of good friends diagnosed with metastases this year.  A couple of people that were near and dear to me have died of the disease.

You tell me... how will there ever be a day that cancer will be the best thing that ever happens to anyone.  If your goal was to draw attention to yourself, you've done it.  If you are of the mindset that there's no such thing as bad publicity, let me clue you in on a little secret.  In the breast cancer community, in fact, in the cancer community at large, you may be the most vilified person on the planet.  And I didn't think anyone could possibly knock Nancy Brinker from the top spot.  Ever. Go Figure.


(thanks, jms for letting me steal your word...)

Saturday, July 27, 2013


A version of what is below appeared on this blog on July 27, 2006.  The blog was literally just days old.  It's now seven years.  Time keeps on slippin' into the future.... and yes, I want to Fly Like an Eagle and change the world.


It was exactly five years ago today that I heard the words that are life changers.  YOU HAVE CANCER.  I actually think the doctor said, “We found a little cancer,” which, when the word cancer is being used by a doctor and you are the one in the gown, honestly, it doesn’t matter how it’s packaged.  The room spins, the air is sucked right out of you and in my case, the tears just began to stream down my face.  And, I am not known as a “baby cry.”

July 27, 2006

The exact date the line was drawn that divided my life into those two distinct parts.  My routine mammo in April was now the official date of entry into the chapter of my life I like to call “Entering Fog.”  I was no longer BC and it would be quite some time before I emerged from one fog and stepped into the fog where I currently reside, the one referred to (by me) as AD fog.

Between April and July, I was squished, mashed, poked and prodded with many tests followed by more tests and then two different invasive “in office” biopsies, titanium clips (hey, are these things going to set off the metal detectors, I have a vacation planned....) and then TaDa, The Gold Standard biopsy.  By that, I mean an operating room, anesthesia and a surgeon.  Yay Me.

Every step of the way, the reason the test was necessary was explained and the explanations always concluded with me being told how certain they were that “it’s nothing.”  And, statistically, I was not being misled or coddled through the test maze.  I had plenty of time to reflect upon on how many people said things like “nine times out of ten” and “atypical cells are just that, and ONLY THAT.  They are simply abnormal but we don’t leave abnormal cells in your body.”  So convinced the surgical outcome would be a big nothing, the doctor’s preference was to wait until I returned from a long planned family trip to Italy to do the biopsy.

“I’m more worried about you being in Europe before you are fully healed.  This really can wait.”  Concern over infection when I was going to a country where, on every block, one could find a very bright and distinctive green cross illuminating the way to the pharmacy?  The pharmacy where I was able to purchase a stash of antibiotics (never know when anthrax may regain its popularity, and no poking fun either, just look at Gaddafi-he was among the missing and is front and center again) and a cream to get rid of a skin spot……not a cancery looking mole spot, but a white dot that I knew would soon spread and blotch my perfectly crafted tan…..(begging yet another thought "have you heard about sunblock/melanoma thing, AnneMarie?"  Just asking…..).  The place where no prescription was necessary and the pharmacist, despite the communication barrier, knew exactly what I needed.  You mean THAT pharmacy?  And, yes, the cream DID work.  And no, these items were not available in the US without a visit to the doctor to obtain an illegibly written prescription.

She worried about infection and I worried about discomfort.  I didn’t need to be dealing with comfort issues on an eight plus hour flight or sleeping in a strange bed or meandering centuries old cobblestone streets in oppressive heat OR being bounced around in the back of a vehicle driven by some crazy Italian who is accustomed to the insanity that is Driving in Rome.

Did I really just pass the baton of Driving Maniac Capital from my home city to the Eternal City? The yellow cab madness in Manhattan on any given day, potholes, pedestrians, delivery guys on bikes, roller blading lunatics and the latest addition to the traffic scene, The Rickshaw..... this scene is calm?  Come to think of it, I was a bit player in one of those "only in NY" scenes the last time I was behind the wheel on a city street.

Surely this was NOT me, but yet the voice was mine....Yup, that WAS MY big mouth, screaming at some guy who, being a brash New Yorker, felt the need to tap (ok, let me get real, it's NY, it was more of a slam) the trunk of my car because I got stuck in the crosswalk.  “Yo, Dude….. I was the first effin' car. How the hell could I KNOW I wouldn't even move three feet?!"  Even on the worst traffic days, at least ONE car will make it almost through an intersection.  The traffic was particularly horrendous (gee, there's a NY surprise) and OMG, that guy had to walk exactly four additional steps and he's hitting my car??  And I hear my voice again, "Turn AROUND you dumb-ass.... who do you think you are???!?!?"  I'm pretty sure I didn't actually call him a dumb ass.  In fact, I'm certain my language was far worse than any string of expletives you care to insert after the words "turn around" left my lips.  And, I don't even think the word ass or any form thereof was even uttered during that little street exchange (wasn't really an exchange since I was the only person doing any "exchanging).

I was on my way to a doctor appointment.  They always make me edgy and besides, this old cranky guy had no right.  He’s lucky the traffic was stressing me out and it appeared I was going to be late for the appointment.  New doctor and I FORGOT to put the office number in my phone.  Gee, no surprise there....I've added a new act to this gig - I'm now lucky I remember to even grab my phone as I'm running out the door.....  I don’t know into whom I’ve turned, but I swear, if there wasn’t a time issue, I would have gotten out of the car and gotten right up in this guy’s face.  The new me.  Just to be clear, it’s really easy to be brave and bold and downright brazen on a busy NY street with hundreds of people just an arms length from rescuing me.  From myself.

Where WAS I… CB strikes again… and, that wasn't me and my usual transposition of letters and numbers... CB = quicker to type than ChemoBrain... (except, since I had to go into this explanation, I just wasted more time which defeated the whole purpose and can you see how I am my own worst enemy???)

I’m trying to memorialize today, trying to celebrate the fact that FIVE YEARS has passed and I'm OK! I’ve detoured through the streets of Rome, the back of cars, planes, an Italian farmacia (thanks google translate for accurate spelling, very important) and traveled another 4298 miles (wiki detour, another very integral piece of information that requires complete accuracy in order to write a cohesive entry) back to the streets of NY where I am ready to take down a rude little man on Second Avenue????  And, awesome application of alliteration to describe the fine people of NYC:  Bold, Brash, Brave and Brazen!

Wow, what a perfectly crafted example of the journey my brain takes me through to get to the damn point already.

And the point is, there is no longer a point.

These are the days I just have to find something to do that is totally mindless and by mindless, I mean Angry Birds mindless.  Actually, I became a Tiny Wings fan..... which, by the way, has surpassed Angry Birds in popularity.  Yes, THAT mindless.  But I DID just read that factoid about AB v TW.

It's A BIG Day.  My Five Year Milestone.  My moment to feel the depth of my gratitude.  And, I am SO grateful.....  and more importantly, I earned mindless.... Yes, I did.....


I've learned much.  And yes, I am ever so grateful that I still reside in the Land of NED.  I am also ACUTELY aware five years guarantees nothing.  It gives me a statistical edge (supposedly....allegedly..... I'm not a fan of statistics since they can be punctuated to fit any given agenda) but there is no guarantee.  As I've seen with my mom, cancer now metastasized, likely from 1987, as I've learned from Lori, now metastatic after seven (? ...  sorry, L... I think it was seven years), and most recently as I was blindsided by Jody, metastatic after 15 years.....  There is no "You're cured" badge of honor.  There's only.... we need to keep working for better research..... And I'm all in on that.....

Friday, July 26, 2013


I hope that works.  If it doesn't, the link to the CNN page where this appears is here.  How can I possibly forget a name like Summar Breeze?  I know Summar left a comment on one of the MANY posts on this blog.  And I know Summar from twitter.  And now, I am getting to know Summar very well.

You see, she is a volunteer for METAvivor's new ambassador program.  Not only is she a volunteer, she offered to take a lead role as a vice ambassador in the Pacific Northwest.  Watch the video.  If it doesn't work, click the link to CNN.  Keep the tissues handy.  Summar never told anyone about this and the only reason I found out is because I was doing a bit of paperwork and stumbled over this on her Facebook page.

There are so many reasons why I feel the need to put so much effort into assisting METAvivor in whatever way I can.  If you care to join the nationwide volunteer corps of ambassadors, please contact CJ at cj77@comcast.net ..... or leave a comment here and I'll pass the information to CJ.

In other news, I want to congratulate Deana and Lisa Hendrickson.  They began a push to raise awareness about the need for better treatment, more research, effective screening for lung cancer.  The message was taken to twitter and thanks to their tireless efforts, they put together their first tweet-chat last night.  Modeled after #bcsm, last night, it was #lcsm. Lung Cancer Social Media.  The chat was moderated by Dr. Jack West, an oncologist who founded GRACE: The Global Resource for Advancing Cancer Education.

The chat was wildly successful.  The numbers are spectacular and when one considers this was the first chat and it's in the middle of the summer, it's beyond impressive.  Here's what it looked like after an hour:

There were doctors from every discipline, non-profits, cancer centers, advocates and patients all in the discussion.  There will be #NoStigma in NO Time at all thanks to the wonderful work of  @LungCancerFaces (Lisa and Deana).  If you'd like to read what the crowd had to say, the transcript is at Symplur.

On that note, have a very happy weekend.  Tomorrow is a notable date in my life.  There will be a blog post.  It will remain up through Tuesday.  At least.  Or longer.  Depends upon how distracted I am by life and butterflies and hummingbirds and dragonflies and frogs.  Each and every day, I see something that makes me smile.  I'll be wearing my smile and I hope you will do the same.

Thursday, July 25, 2013

THANK YOU @FasterCures

Faster Cures.

I love everything about them and now, I'm beyond grateful for yet another act of kindness, circa July, 19, 2013.

My blog turned two.  Because I am so distracted, I didn't even SEE this post on the Faster Cures Blog.

Sorry, you are going to have to click.  I know it's my usual MO to include text from most things I reference.  I know some people aren't clickers.  I know, too, that some links I provide may not work without setting up a free account at certain sites.  Since I know the blog at Faster Cures is not one that requires a membership..... do click.

I talk about the illusion of progress and the reason why patients belong at the table across the entire continuum of care.  I even mention that there are times patients do not belong at a table.  I'll clarify.  In some cases, primarily in very early research, the information is so technical I don't feel advocates can add to the conversation until the brainiacs (saying that with the utmost respect for people who are so brilliant) work out the logistics of determining formulas that would challenge even John Nash.  I saw some early research projects when reviewing applications for PCORI.  Some of the grants sought to develop methods to better reach underserved populations and included mathematical equations that filled an entire page with letters and symbols and subscript numbers.  Developing a theorem that will achieve its intended goal and provide good data is best left to those with that skill set.  We, as advocates, can be brought in after they work out the kinks in the math.    

Beyond all of that, there is a photo in the blog.  Let me tell you a secret.  Aside from the fact I happen to love that picture of my daughter and I, the photo was from a trip we took in July 2006.  It was taken in Venice at the Hotel Danieli.  We were vacationing as a family.  The kids were all getting old enough where the logistics of planning a vacation like that might prove to be difficult in the future.

I was diagnosed on July 27, 2006.  How could I know that THIS was the picture of someone walking around with a cancerous breast?  Blissful ignorance.  In other words, little did I know my world was about to be divided in two.  Little did I know that my bright and carefree smile would no longer be the same.  Little could I know that my life would be forever changed in less than three weeks.  And in a million years, I could not fathom that my dad would be gone in one year.

And in several million years, my crystal ball could not see me HERE, four years later, baring my soul to complete strangers.  If I am to go one step further, there is no way I could have ever imagined where this blog would take me and the ways in which my life has been enriched by the relationships that could only have happened because I am HERE.

Considering everything that is happening right now, July 19th was especially bittersweet this year.  I apologize for all of my cryptic remarks.  One day, it will be appropriate for me to share, to extend my advocacy efforts beyond the needs of the cancer community.  There are gaps in other medical arenas that are shameful.  It's still not appropriate for me to bring this such a public forum.

Faster Cures.  Part of my HERE.  Part of my NOW.  Part of what I do and who I strive to be.  This surprise, in the form of a celebration of my blog's birthday, is yet one more reminder that there are many out there sending good thoughts my way and doing things, big and small, that are helping me put one foot in front of the other because the only way out, is through.

Sometimes, the act of going through can be quite difficult and filled with pain.  It is in those times, THESE times, that I am most appreciative of the support of each and every one of you.

Tuesday, July 23, 2013




Anne Marie

I need my space.  I'm being quite literal.  Although my posts have gotten a bit sporadic and my presence has dwindled, it's because there has been too much invading my space.  Sometimes, I can choose to push things away, other times-not so much.  This has been a not so much episode of fairly epic proportions.  One day, there will be a book.  Perhaps co-authored.  Right now, I'm working with what I got.  Which is space limitations.

Now, about that space.

When I was learning how to write, the nuns hyphenated my name.  As a teen, I dropped the hyphen.  For that matter, I dropped everything after the hyphen, too.  In fact, I even dropped the "e" and for a short time, I was "Ann."

Somewhere along the way, I took back the "e" and the Marie.  The hyphen would never return but when the hyphen disappeared, so did the space and I became AnneMarie.

I know now, I Need My Space and I'm going back to the way things were... the way my mom and dad intended when I was born.

Anne Marie

What brings this about?  The Grateful Dead.  And Glennon.

On Friday, July 19, when I was crashing after a crisis, simultaneously missing my dad, my buddy, Upstate AM sent me a tweet.  "This one is for us."  She included a link to the blog written by Glennon Doyle Melton.  On July 19th, Glennon was bidding the internet adieu for forty days.  She had already unplugged by the time I saw the post and I hope to connect with her upon her return.

I MUST say a proper thanks.  I must let her know how much her words touched my heart.  The day was bittersweet.  It was the anniversary of my dad's death.  I was awash in the aftermath of a crisis.  Frankly, I was kind of a mess. Glennon's post made me cry.

A random act of kindness on the part of a total stranger, someone whose name I'd never heard, someone who tells a powerful story in a TED talk, Lessons From The Mental Hospital.  Someone who talked about her need to reach out to the Anne Marie's of the world.  The snippet that was so serendipitous and so very appreciated on a day where I really needed to believe in something beyond that which was right in front of my face.... needed to remember I'm not alone.  Ever.  I was reminded in a most public manner on a day that really mattered most.


And I sang this part really loud:  “first one’s named sweet Anne Marie, she’s my heart’s delight.” I love that line. Heart’s Delight! Anne Marie! And I started thinking about what a precious name Anne Marie is and how much I just LOVE everyone in the whole world named Anne Marie. And then I said a prayer for all the Anne Maries in the world. That they’d have a few brilliant moments today in which they’d feel wildly and completely loved.
That whole Grateful Dead/Anne Marie thing took about five minutes. That five minutes made me so happy. There was a THERE there. Because that was my soul, there dancing and praying for all the Anne Marie’s in the world. I love that wild, nonsensical part of me. I need some time to get back in touch with her- to invite her front and center again because I want HER to lead me through this life. I choose HER- even if she makes no sense to the world at all. She says to me- WHO FREAKING CARES ABOUT THAT THING YOU’RE DOING? COME DANCE! THE ANNE MARIES NEED SOME PRAYERS! DON”T ASK WHY- JUST DANCE AND PRAY!” 

All I can say?  I'm a fan.  And I'm filled with gratitude.  And, I'm taking back my space.


With Love,

Anne Marie

Monday, July 22, 2013


I've gone global.  Officially.  Last week, it was about Africa.  Then, there was a dinner meeting in NYC with Efrat from Israel.  Today, I'm back in India.  With major thanks to my twitter buddies for pointing me to these stories so I can continue my armchair activism, here's more news.

The NIH, that would be our government, the National Institute Of Health, has canceled 40 ongoing trials in India.  The reason?  Unstable regulatory environment.

In a July 12th piece in BioSpectrum, it was noted that the new Indian regulations made it "mandatory to  register ethics committees" much to the dismay of those involved in trials at Tata Memorial Hospital.  According to the article, it took Tata which is a leading medical center in India, three months to complete the necessary paperwork or whatever else may have been required.  I say, just because an institution is a leading ANYTHING, doesn't mean they are playing by the rules.  Prior to the new regulations, I suppose everyone got to make their own rules or follow some sort of code etched in stone from the dark ages.  Oversight should be mandatory when human lives are on the line.

The text of the article is reprinted below in case the link doesn't work or for those who aren't clickers.  Although much of the reasoning discussed is with regard to drug trials, ALL trials will be registered in the same fashion.  In other words, even if the thumbprint was an acceptable means of informed consent, the study design where death was an endpoint of a curable disease....  Not so sure that design would fly.

I claim a Victory For Women in India.  I don't proclaim to have had a single thing to do with any of this.  I just like sharing good news.  This is good news.

NIH cancels 40 ongoing clinical trials in India

Read more at: http://www.biospectrumasia.com/biospectrum/regulatory/191557/nih-cancels-ongoing-clinical-trials-india#.UecPDZU3176

In what is proving to be a major setback for the Indian clinical research industry, reports reveal that the world's largest research funder, the National Institutes of Health (NIH), has cancelled almost 40 ongoing trials in the country.
NIH, that is part of the US department of health and human services, has sighted the unstable regulatory environment in the country as the main reason why sponsors are being driven away to places like Malaysia and Canada.
India's Health Ministry had recently tightened the regulatory norms for trials after the country's Apex court intervened into the matter. Acting on this, the ministry brought about new laws, amending the Drugs and Cosmetics Act. These laws revolved around regulation, ethical supervision of trials, compensation of trial subjects and mandatory accreditation of all stakeholders/institutional review boards, research institutions, sponsors and contract research organizations. The impact of these have been witnessed in the industry over the past six months as research projects kept moving to Canada and Malaysia.
An Indian newspaper, Live Mint quoted a leading medical centre from the country, Tata Memorial Hospital, as being affected by the regulatory chaos too. "The Drugs Controller General of India made it mandatory to register ethics committees. While this is a welcome step, they took nearly three months to register our committee. During this time, we could not start any trials. Slow turnaround time and lack of clarity in regulation have seen sponsored research slow down drastically. Even academic research has suffered in the past three months," said Mr C S Pramesh, head, Cardiothoracic surgery, Tata Memorial.
Further, the report pointed out that the $500 million industry in the country is currently functioning at one-fifth of its capacity. "Given the fact that we have the world's highest disease burden, the most impacted by an unstable regulatory environment are patients for many of whom clinical research provided early access to new therapies and is often the only viable treatment option," Mr Anil Raghavan, managing director, Quintiles India (a contract research organization), was quoted as saying in the report.
As per records of the Drugs Controller General of India (DCGI) in the Supreme Court, India approved 475 clinical trials for ‘new chemical entities' not used as drugs elsewhere in the world between January 2005 and June 2012. Further, the documents submitted by the DCGI claim that 11,972 adverse effects, excluding deaths, were reported in the period, with 506 of these being directly attributable to the trials. They put deaths from trials at 2,644 over the last five years.

Friday, July 19, 2013


I have two things to share.

This blog is officially two years old.  The first post was on July 19, 2011.  How could I have ever imagined the number of amazing people I would meet, people who have enriched my life in ways I can't begin to express, people who have had my back through my own moments, through my mom's diagnosis of metastatic disease and through other things that have been a little less public.  How could I have known?  And how do I express my gratitude for such a warm welcome?  Thank you for being in my life.

Today, I celebrate and honor my dad.  He has been gone for six years, gone from the dining room table, gone from the holiday celebrations, gone from the doctor's offices.  I miss him.  I miss his wisdom.  I miss his steady hand guiding me on shaky ground.  There's been lots of shaky ground lately.  I could really use his guidance.  Instead, I rely on memories.  I remember the lessons he taught me.  Not by preaching, although no one could command the attention of everyone in a room like my dad, I learned by his example.  My dad, a life well lived and one cut short far too soon.

One of my favorite photos, this was taken less than seven months before his death.  I love you, dad.

Wednesday, July 17, 2013


This was published in the Infectious Agents and Cancer Journal.  It was written by my friend, my global advocate partner, the woman with whom I share information via the internet.

Kwanele lives in South Africa.  She is working tirelessly to change things and I am proud to call her a sister.  Kwanele touched my soul in the lobby of the Hyatt Hotel as I was waiting to depart Washington DC at the conclusion of the NBCC 2012 Annual Summit.  I've written about her in previous posts.  Whenever I feel like I need to remember there are others out there, I play the You Tube video of CeCe Winans and Whitney Houston singing Count On Me.  That video is embedded in one of my posts, and it's a post where I share the enormous respect and love I feel for Kwanele.

THIS is some awesome reading.  THIS was published in a cancer journal, by a patient turned advocate.  THIS was written by my very dear friend.  THIS makes me hopeful that change is possible if we all work together.     

Kwanele Asante-Shongwe
The burden of cancer is climbing in all of Africa, yet the continent’s healthcare and political systems have not prioritized cancer control and treatment-care. Sub-Saharan Africa is predicted to have a greater than 85% increase in the burden of cancer by 2030. However, African communities have little or no knowledge of cancer. As a result, many patients present with advanced disease at first consultation leading to poor outcomes. A focused approach needs to be adopted to address this growing public health threat. Robust engagement by patients and persons affected by cancer is needed to exert pressure on key public healthcare influencers especially, clinicians, researchers, political leaders and public health policy-makers to prioritize the disease and to ease the massive human suffering caused by cancer morbidities and mortalities.
Involving well-trained patient advocates in setting the research and overall cancer control agendas has been proven beneficial in countries such as the United States in improving the quality of care people with cancer receive. In addition, the involvement of patient advocates ensures that financial and other resources are spent where they are mostly needed rather than on studies or programs that are of academic interest but of little value in furthering medical understanding of the causes of cancer. It is imperative that research funds are spent on studies, which will lead to the development of preventative vaccines and treatments to eradicate cancer.
Understanding patient advocacy
Patient advocacy is an area of lay specialization in healthcare concerned with patient education about health (rights) and how to obtain needed cancer treatment and control. Patient advocates provide the healthcare knowledge to the public at large and mainly offer their services on a non-profit basis. More broadly, patient advocacy can include groups that develop policies and legislation to improve systems or processes for patients [1]. Patient advocates can also be non-patients from disciplines like social-work or health insurance employed to assist patients unravel health plans and or to chaperone them through healthcare systems [1]. It is worth noting that working within the for-profit sector as a patient advocate may create a conflict of interest for an advocate as it makes it hard for them to protect patients’ interests within a sector that they are employed.
The discipline of patient advocacy is well-established in countries like the United States and the United Kingdom, where non-profit organizations (NGOs) are recognized as key healthcare partners with clinicians, healthcare policy-makers, political leaders and researchers. However, patient advocacy is still in its infancy in most African countries, especially in the area of cancer advocacy.
African healthcare practitioners and policy-makers still tend to practice paternalistic medicine, with little meaningful patient participation in treatment decision-making. Low literacy levels, lack of easy access to the internet, patriarchy and gender inequity in most African communities are responsible for the continuation of these unequal relations between physicians, policy makers and patients. A new paradigm of patient inclusion in all key healthcare decisions has to be created and a strong patient advocacy movement will be critical in ushering in a more egalitarian healthcare approach in Africa.
Understanding political advocacy
Political advocacy is a process by an individual or group which aims to influence public policy and resource allocation decisions within political, economic, and social systems and institutions. Advocacy can include many activities that a person or organization undertakes including media campaigns, public speaking, commissioning and publishing research. Lobbying (often by interest groups like people with cancer) is a form of advocacy where a direct approach is made to legislators on an issue which plays a significant role in modern politics – for example access to equitable and evidence based healthcare for all citizens [1].
The rising burden of cancer in Africa: Lessons from HIV/AIDS
Sub-Saharan Africa has a disproportionate burden of disease and faces a major public-health challenge from both communicable and non-communicable diseases [2]. The World Health Organization (WHO) estimates that about 551,200 cases of cancer were diagnosed in sub-Saharan Africa in 2008, with about 421,000 deaths [2]. Competing burden of disease from health issues such as tuberculosis, malaria and HIV/AIDS adversely impact the attention given to cancer at both political and public healthcare planning levels by African countries [2]. Sparse oncology equipment and infrastructure, poor supply of essential drugs, scarcity of qualified oncology specialists, inadequate hospital palliation and home based care services and poor cancer registries are the norm in most African countries to the detriment of patient care. The current lack of decisive political responses to cancer control care in Africa has echoes of a similar lack of focus initially accorded the HIV/AIDS pandemic by governments on the continent in the 1990s. Patients suffered and hundreds of thousands of lives were reported to have been lost as African leaders engaged in a non-scientific debate on whether HIV caused AIDS, refuting affirmative scientific evidence.
The case of South Africa and HIV/AIDS: Africa and the global community were astonished when South Africa’s President Thabo Mbeki accused the West of impugning Africans’ sexual mores by suggesting that there was a scientifically proven causal sexual link between the human immune-deficiency virus and AIDS. Mbeki noted, “Convinced that (Africans) are but natural born, promiscuous carriers of germs, unique in the world, they (scientists) proclaim that our continent is doomed to an inevitable mortal end because of our unconquerable devotion to sin and lust.” [3]. In a study published in 2008, Harvard public health researchers argued that the “South African president’s refusal to accept medical evidence of the virus was a major obstacle to providing medicine to patients who desperately needed it.” [4]. The authors asserted that “Mbeki fought against scientific consensus that AIDS was caused by a viral infection that could be fought – though not cured – by sophisticated and expensive drugs.” [4]. It is estimated that more than 330,000 people died unnecessarily in South Africa over the period and that 35,000 HIV-infected babies were born that could have been protected from the virus and would probably have a limited life [4].
This lack of decisive South African government action in the face of immense human suffering and unnecessary loss of lives led to huge civil society outrage. AIDS activists from a previously little known non-profit group called the Treatment Action Campaign (TAC), assisted by the AIDS Law Clinic from the University of the Witwatersrand’s Centre for Applied Legal Studies (CALS), stepped into the breach and forced the government to honor the legal duty of care – owed to South African citizens living with HIV/AIDS. Political advocacy by the TAC garnered much international support for the cause. Under international pressure, South Africa eventually launched a national program for the prevention of mother-to-child-transmission in August 2003 and a national adult treatment program in 2004 [4]. The TAC’s lobby efforts were also directed against pharmaceutical multinational companies whose high drug prices and strangulate drug patents made access to life-saving medicines for patients difficult, especially the poor. “Expensive antiretrovirals (ARVs) came down in price dramatically as a result of activists’ (political advocates’) campaigning and public pressure.” [4].
South Africa’s national HIV/AIDS treatment-care landscape has changed dramatically since 2004 through the action of TAC. On December 1, 2011 (World AIDS Day), President Jacob Zuma announced a plan to fight against HIV/AIDS. The advocacy of the TAC in the 1990s to the mid-2000s chartered and eased the path for effective collaboration between government and HIV/AIDS patient groups. Great progress has been attained in how key HIV/AIDS healthcare policies are developed and implemented in South Africa. Government and healthcare policymakers now appreciate the value of civil society engagement as key stakeholders in healthcare planning and implementation.
Cancer advocates and lobby groups would do well to take critical lessons from their HIV/AIDS counterparts and find strategies to engage the government in similar interactions to facilitate the development of a focused, sustainable and scalable National Strategic Plan for Cancer grounded in evidence based research. Bruising battles have been fought and won at grave human cost and there is no need to repeat painful mistakes – and to cause similar unnecessary deaths and suffering for cancer patients and their families. For example, the comprehensive multi-disciplinary and multi-sectoral HIV/AIDS approach, introduced by President Zuma in South Africa, presents a prime opportunity for partnerships between national HIV/AIDS and cancer political advocates. The two diseases sometimes occur as co-morbidities in the same patient and it would therefore be highly cost effective to develop and implement integrated research and treatment plans. Sufficient research exists on the high incidence of AIDS defining carcinomas, like Kaposi sarcoma, which is one of the four common cancers in both men and women in sub-Saharan Africa. There are also biological connections between HIV/AIDS and tuberculosis, cervical and breast cancers among African patients. A strategic approach to cancer control (factoring these listed diseases) in sub-Saharan Africa is needed to build on what works and what is unique to the region.
How science educated patient advocates can drive cancer advocacy and influence research and political agendas: Lessons from Project LEAD Program, United States
“They are not scientists but their connection to cancer is no less strong”,[5] writes Kana about the Georgetown Lombardi’s Patient Advocacy Committee (GLBCPAC), a non-profit organization formed by Ayesha Shajahan-Haq. “Encouraging researchers, basic or clinical, to work with advocates is the right step to help in bridging the gap between cancer research and the community it is intended to directly impact” says Shajahan-Haq.[5] The GLBCPAC is made up of 14 breast cancer patient advocates and five of them are formally trained National Breast Cancer Coalition Project LEAD graduates [5].
Project LEAD is the National Breast Cancer Coalition’s (NBCC) premier science training program for patient advocates in the United States and has created a revolution in the world of breast cancer research and public policy. The courses prepare graduates to engage in a wide range of local and national forums where breast cancer decisions are made. Project LEAD graduates bring an educated consumer perspective and critical thinking skills to the important issues and controversies in breast cancer [6].
As a result of NBCC’s work, scientists, government agencies and private industry have changed the way they design and implement breast cancer research and programs. NBCC has created a model for consumer influence marked by transparency, innovation and a peer relationship among scientists, researchers, policymakers and consumers [6] in the United States. In addition, Project LEAD International is slowly growing this influence globally. The respect for and influence of NBCC Project LEAD graduates is not limited to research science but also extends to high level political structures. The NBCC has had tremendous success in influencing United States national public-policy on breast cancer research. For example, the Department of Defense (DOD) Breast Cancer Research Program (BCRP) was created in 1992 as a result of the organization’s campaign to increase United States federal funding for breast cancer research [7]. Strategic partnership with supportive Congressional leaders like Senators Tom Harkin (a democrat from Iowa) and Alfonse D’ Amato (republican from New York) led the United States Congress to appropriate $210 million in the DOD research and development budget for breast cancer peer-reviewed research program administered by the United States Department of the Army, during the 1993 financial year [7]. As a result of Senator Harkin’s continued support, NBCC grassroots advocacy, and the DOD BCRP’s demonstrated success, Congress has approved funding for breast cancer research annually [7].
It is worth noting that the development of the drug Herceptin which has saved the lives of many women with HER-2 positive breast cancer is one of the key successes of the DOD BCRP. United States Speaker Nancy Pelosi’s 2010 NBCC Congressional Awards acceptance speech when she was presented with the Public Policy Leadership Award, best capture the high political regard accorded the patient advocate organization on Capitol Hill:
“I know the National Breast Cancer Coalition’s number one legislative priority is access to quality health care for all. And because of your advocacy, your organization, your number one legislative priority is now the law of the land.” [8]. Already we are seeing progress. As you know, the media has reported that certain insurance companies were particularly targeting women with breast cancer diagnoses for rescission. But because of your leadership, America largest insurers acted even sooner than the health insurance reform bill we passed required to end the shameful practice of dropping women’s coverage when they get sick”.[8]We are counting on (the NBCC) to continue to work with us to educate the American people about what health care reform means to them” [8]. I know you have come to Capitol Hill to lobby for increased funding for breast cancer research. We have been working together on this issue for years. In the early years, our battle was to make sure the NIH was directing resources to breast cancer. I remember when we broke the first $100 million mark for breast cancer funding. With the help of Jack Murtha, together we created the Breast Cancer Research Program at the Defense Department, which has invested $2 billion in research since 1993.” [8].
Between 1992 and 2012, the power of political breast cancer advocacy resulted in $2.78 billion United States Congregational appropriation for the DOD Breast Cancer Research Program and over 6,000 grant awards. The same success can be achieved in Africa with the right partnership between the government and advocates.
Patient advocates have carved themselves a niche and earned trust as peers and key partners in research, clinical and policymaking forums. Although the patient advocacy movement is still relatively young in Africa compared to Western countries like the United States, the South African Treatment Action Campaign and its patient alliance partners showed their mettle in the formidable battle to secure equitable access to evidence-based HIV/AIDS treatment to millions of people who needed it. Great strides in patient engagement have been made by South African healthcare policymakers. The Minister of Health showed a strong commitment to patient inclusion by appointing three lay persons to his inaugural Cancer Advisory Committee – which started its 3-year term in April 2013. A patient has also been elected to serve as Deputy Chair of the Committee.
There are great lessons and partnerships to be forged between HIV/AIDS and cancer patient advocates. In addition, broader synergies and partnerships need to be fostered among clinicians, researchers and policymakers to create integrated and context relevant, cost effective and sustainable healthcare systems in Africa. Lessons from the United States based NBCC Project LEAD and the GLBCPAC also serve as great illustrations of the impact and value that science trained patient advocates can bring to both the research and policymaking arenas. Testimonies from clinicians, researchers and high level public office holders offer evidence of how patient inclusion in key healthcare forums is a public policy, societal and business imperative. The examples offer lessons for African countries to emulate.
The author is a a Project LEAD graduate of the NBCC Project LEAD, a member of the NBCC and Deputy Chair of the South Africa Minister of Health Cancer Advisory Committee.