American Cancer Society Investigation – Social Media Style

Part II in a series regarding my investigation into the American Cancer Society and interview with the Chief Medical Officer Dr. Otis Brawley 

On April 22, 2011. I had a two hour phone interview with Dr. Otis Brawley, CMO of the American Cancer Society (ACS).

As a fairly new lung cancer advocate, I have a bazillion questions, but the primary purpose of my interview was to gain a better understanding of the following:

  • ACS “One pot” cancer research funding approach
  • Relay for Life donation allocation
  • ACS revenue/grants
  • Lung cancer screening/statistics

Dr. Otis Brawley - American Cancer Society CMO

Confused. Concerned. More Confused.
The interview didn’t go as I expected, as Dr. Brawley, in my opinion, abruptly launched into what I would consider a “rant” against some nonprofits, particularly lung cancer foundations.

Dr. Brawley says some foundations are impeding progress in cancer research funding. I have to say I don’t necessarily disagree with him on that notion in general, but disagree on the reasons why. Here’s my blog post and video regarding all of this.

I was stunned by Dr. Brawley’s demeanor and a few other things. Not just stunned, but completely confused, concerned and actually sad.

Why such hostility from the CMO of the American Cancer Society toward certain foundations? What, if any, impact does this have behind closed doors? Are “we” (lung cancer advocates, foundations, orgs) doing this all wrong? I mean, what do you do when the nation’s largest charity focusing on all cancers speaks so negatively of your cause’s efforts? What can/should foundations do to improve relations with ACS…and likewise? It’s really one big cluster.

 

I wish there were easy answers. It’s complicated and highly political. But I am trying to find out and sharing everything with you along the way.

The ACS has been less than forthcoming with information for many years. Time to put an end to that. As survivors, advocates, caregivers, donors, etc., we all deserve answers to some basic questions…and then some.

Facebook Comment Disappears
My first blog post in this series was also unexpected, but not surprising.


Instead of writing a post that outlined my list of follow-up questions to ACS for you to see, I wound up writing about how a comment I posted on the American Cancer Society’s Facebook wall disappeared. Where did it go? You can see the remarkable responses here.

Not a great start by any means, but onward we move. Here’s what we’re going to do: Demand answers and accountability in real time  - together – all of us.

I am making public all of my questions to the American Cancer Society, as well as its responses. I am still waiting for responses to many questions I emailed Dr. Brawley and David Sampson, ACS’s Director, Medical & Scientific Communications, following our interview. I will be writing a series of posts, as there is a lot of information to digest. However, no information to digest in some cases.

This post contains initial correspondence and all of my follow-up questions only. My next post(s) will contain ACS’s responses in the order in which I received them. You may already know some of the answers. I may know some of the answers to these questions too. I wanted to get responses from ACS directly…publicly.

ps…some emails I was able to capture nice screen shots…others, I had difficulty due to their length, so they have been copied and pasted here. A techie I am not.

Ok, here we go. Here are the initial emails.

___________________________________________________________________

Email from David Sampson Following a Brief Phone Interview with Him.

David.SampsonXXX Fri, Apr 22, 2011 at 11:42 AM
To: jenniferjwindrum@gmail.com
Cc: otis.brawleyXXX
Hi Jennifer,

Thank you so much for the chat. It was excellent to finally ‘meet.’ As I mentioned, below is a recap with some answers to your questions. Also, Otis Brawley, our chief medical officer, is looking forward to talking to you today. He is free at 3:00 PM. He can be reached at (404) 329-7740. I copied him on this note so he can see what we’ve been discussing.

People with an interest in one type cancer are entirely right to push for more attention and funding of that cancer. And as the nation’s leading charity focusing on all cancers, the American Cancer Society strives to make sure our efforts are balanced so that no cancer is under-studied or ignored. As of April 22, 2011, the Society is funding 933 grants totalling more than $464 million. Of those, 94 grants totaling more than $52 million are related to lung cancer, making the Society the top nongovernmental supporter of lung cancer research. The American Cancer Society’s strong commitment to funding research on lung cancer includes studies to find better diagnostic tests and to find targeted therapies. I have attached a detailed list of our currently funded work in lung cancer. It’s 20 pages long, and gives you a sense of the broad and varied types of research we fund.

Looking back over the years, the Society’s funding has been a part of research that has led to new drugs to treat lung cancer, including Tarceva ® (Erlotinib), Avastin® (Bevacizumab) and Alimta® (Pemetrexed). The research grants we fund are what we call “investigator initiated.” That means the ideas for the studies come not from some boardroom, but from the researchers themselves who spend their days doing investigation to come up with new ways to fight cancer. We’re proud to say that in its just over 60 years, our research program has funded 42 researchers who have gone on to win the Nobel prize, medicine’s highest honor. Most of these grants went to the investigators early in their career, when funding is particularly hard to get. Funding these “early career” researchers is the top priority of our program.

Our annual statistics are likely the most cited cancer data worldwide. They are continually updated, and have been every year for some 40 years. These statistics are in fact a critical and sobering reminder of the work to be done, and stark evidence for the need to continue our efforts. The statistics on lung cancer are stark, and daunting. They show that while the 1-year survival rate for lung cancer increased from 35% in 1975-1979 to 42% in 2002-2005, largely due to improvements in surgical techniques and combined therapies, the 5-year survival rate for all stages combined is still only 16%. The fact that lung cancer has proved to be one of the most difficult cancers to treat effectively compels us to keep looking for innovative ways to fight the disease.

The American Cancer Society is a powerful, effective, and leading voice advocating for research funding as well as laws to protect cancer patients and their families. Our web site includes the most comprehensive statistics available on multiple cancer sites, and our toll free cancer information line provides prompt, accurate information to callers 24 hours a day, seven days a week, 365 days a year.

Lung cancer is one of several sites to which people can direct their donation. The others are breast, prostate, colon, and skin cancers. But as we discussed, it is important for donors to realize that often the biggest breakthroughs in cancer and other areas of medicine come from unusual places. Maybe we can dig up some examples to help illustrate this. For instance, it would be ironic if someone, thinking they wanted to help lung cancer, directed their research there, and that as a result a researcher looking at melanoma, who may be in the verge of finding an important clue for lung cancer, were not funded.

People who donate to charities are right to ask tough questions about how their money is used. The American Cancer Society posts its expenditures publicly, and also encourages people seeking to make a charitable donation, no matter who the recipient, to look at how effectively the organization delivers on its mission in addition to how efficiently it operates. We recommend they check with leading groups that evaluate charities, including Charity Navigator, many of which now examine how charities work to meet their mission in addition to listing expenditures. The Charity Navigator profile of the American Cancer Society can be found at:

http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=6495.

The American Cancer Society makes this information available on an annual basis in our Strategic Plan Progress Report, which is published online. We have also been awarded the Better Business Bureau’s Wise Giving Alliance national charity seal since 2005 and meet or exceed standards set by groups that evaluate charities.

And here is the link to the study by Michael Thun (pronounced ‘tune’) I mentioned in our chat.

http://jnci.oxfordjournals.org/content/98/10/691.short

Once again, thanks for the opportunity to talk about what we do and how we do it. And I am sure we will talk more soon!

David (@djsampson)
David Sampson | Director, Medical & Scientific Communications
National Home Office | American Cancer Society, Inc.
250 Williams Street, Atlanta, GA 30303 | cancer.org
213.840.7525 | mobile: 213.840.7525

________________________________________________________________________

___________________________________________________________________

 ___________________________________________________________________

My Email with Many Follow-Up Questions

From: Jennifer (Stauss) Windrum

Date: Wed, May 11, 2011 at 11:18 AM

Subject: Re: Lung cancer and ACS

To: David.Sampson@XXXX

Cc: otis.brawleyXXXX

Hello. Happy Wednesday. As promised, here are some follow-up questions I have for Dr. Brawley following our phone interview. I have separated them into several sections. I apologize for the laundry list, but since Dr. Brawley was so generous with his time, I have some questions where I need clarification, and others confirmation. Please know how much I appreciate your time.

 

Cancer Research Funding

I think many cancer advocates are confused by ACS’s “one pot” approach to research, but then also having the ability to designate where they want funds directed. I think it may be of great service to help explain how these funding approaches works.

 

“One pot” -

I completely understand that research for one cancer can definitely cross over to discover a break-through in another cancer(s) and that 80% of ACS research is molecular research conducted by your investigators. If I understand correctly, the only reason ACS is able to determine what percentage of research is going to a specific cancer is due to these investigators denoting on the grants what cancer they believe it will best serve? Please clarify.

If these investigators are somewhat reluctant to specifically denote (and not all do) which cancer they believe it may best benefit (due to the disease cross-over benefit) how do you know for certain the true percentages focused on a specific cancer?

When someone designates their donation specifically to lung cancer (or breast, prostate, colorectal):

  • Where do these funds go?
  • How do we know they have been specifically designated on ACS’s end?
  • How do you demonstrate accountability?
  • Can you provide me an example?

 

Disease-specific –

Dr. Brawley said, “Unless you do clinical science and clinical trials, we don’t like that question,” referring to my question of what percentage of ACS’s research is focused on lung cancer. David told me, “The fact that lung cancer has proved to be one of the most difficult cancers to treat effectively compels us to keep looking for innovative ways to fight the disease.”

  • What are these innovative ways to fight lung cancer you are referring to?

David also said, “The American Cancer Society’s strong commitment to funding research on lung cancer includes studies to find better diagnostic tests and to find targeted therapies.”

  • What diagnostic tests and targeted therapies are you referring to, specifically?
  • Can you please provide me with these specific studies?

When I asked David, “Why the different pots for each cancer,” he said it is ACS’s way to “make sure nothing gets ignored and to help guide new researchers.” This confuses me, as Dr. Brawley made it clear that the investigators don’t even like to try to determine what grants will be best applicable for a specific cancer. I asked Dr. Brawley a hypothetical – “Since 10% of the number of grants and 10% of the research funding is going to lung cancer – the number one killer which accounts for 30% of all cancer deaths – why not increase funding to 30%?” Dr. Brawley stated that doing so would not be “scientifically responsible.”

  • Can you please clarify who determines what kind of research is conducted – ACS, the investigators, jointly
  • How does ACS guide new researchers?
  • Can you please provide me an example?
  • Why does ACS even offer the option to donate to a specific cancer? (This seems to be very confusing to cancer advocates and isn’t the model under which ACS primarily operates, in my opinion.)

 

Relay for Life

  • When someone participates in a Relay for Life event, can they designate their donation dollars to a specific cancer?
  • If not, where, specifically, where do these event dollars go?
  • I have received feedback from several Relay for Life participants who are disheartened to think ACS has been less than upfront with them regarding where exactly their charitable contributions are going. What is your response to this?
  • Is there anything ACS can or plans to do to make the message more clear to participants about where their donations go – what they are used for?
  • I can’t find information on the Relay for Life website that says where the funding goes. Can you please tell me where I can locate?

 

ACS Revenue/Grants

  •  What was ACS’s total revenue for FY10?
  • Of all dollars raised, what percentage of the total revenue goes toward overhead, admin costs, salaries.
  • What percentage goes toward medical research and programs?
  • What percentage goes toward lung cancer research solely?
  • What is Dr. Brawley’s annual salary?
  • Currently, ACS is funding 933 grants totaling $464 million. Correct?
  • This is the total of all grants, most of which are multi-year (frequently 5), correct?
  • So, out of $1.2 billion in revenues each year, ACS is funding about $100 million in research?
  • Can you provide me with a detailed accounting of all 94 grants; the principal investigator on each one; the institution; the funding per year and the number of years?
  • Of the 94 lung cancer specific grants, how many do NOT include smoking cessation/prevention?

Obviously, Dr. Brawley is not a big fan of the Lung Cancer Alliance. ACS’s $52 million total on existing research doesn’t seem to be that much, especially when the Lung Cancer Alliance has secured $50 million over the past 3 years for lung cancer research through the Department of Defense.

  • What is Dr. Brawley’s response to this statement?

 

Lung Cancer Screening/Stats

When I asked Dr. Brawley is ACS supports the Lung Cancer Mortality Reduction Act, he said I would need to speak to the folks in Washington?

  • Who do I contact and what is their contact information?

I asked Dr. Brawley about the trend of increased lung cancer cases among never-smoking women. He said the rate for never-smoking women has remained the same (gave examples from 1989 and 2007).The lung cancer community is using the statistic that 80% of new lung cancer cases are diagnosed in people who have never smoked or are former smokers who quit decades ago. Dr. Brawley said he was not aware of this statistic and that it is inaccurate.

This statistic….and much more comes from a recent study called: The Out of the Shadows: Report on Women and Lung Cancer presented by Brigham and Women’s Hospital’s Women’s Health Policy and Advocacy Program at the Connors Center for Women’s Health and Gender Biology, in partnership with Lung Cancer Alliance.

Here is a link to the report. http://www.lungcanceralliance.org/shadows/Out_of_the_Shadows_Report.pdf

  • What is Dr. Brawley’s response to this report?
  • Does he consider it valid research?
  • Why wouldn’t a report such as this have the attention of the CMO of the American Cancer Society?

Dr. Brawley stated that there is 15% of the population that gets lung cancer and he doesn’t know why. He stated that these people simply have “bad luck.”

  • Isn’t this “bad luck” disturbing to ACS?

Dr. Brawley said several times that, “People don’t want to live longer, they just don’t want to die.”

  • Can you please clarify what this means, as I cannot say that is the case for my mom.

Why can’t we measure survival rates? Dr. Brawley mentioned only being able to measure mortality rates only?

  • If we have better treatments, why can’t we measure survival rates?

Again, I realize these are a lot of questions, but I want to make certain I understand all that Dr. Brawley and I discussed, as well as additional questions I wasn’t able to ask during that time. Again, your time and insight are greatly appreciated. Jen

________________________________________________________________________

Again, I will be posting ACS’s responses in the order in which I received them.  YOU will play an integral role in our quest for answers and accountability.

And, as always, I would love your feedback.

(pps…Blog look different? It’s undergoing some construction.)

  • Diane

    I don’t believe their stats. Also, it caught my attention when David stated the importance of funding “early” research..to me, that translated to funding meager amounts. Why is it that LCA can secure  comparable funding dollars for LC with a small overhead and enormously smaller scope of public support? Why isn’t the ACS applauding this and doing the same for “all cancers” considering their staggering net worth?

     For a “non-governmental” entity…they sure do have the political double-speak, spin-master approach to accountability down pat. Dr. Brawley’s hostility and “BAD LUCK” remark, IMO…was just a small peek into the TRUE nature of this ORG. and I’m sure he mightily regrets his remark, not because he doesn’t THINK that way, rather that he didn’t catch it before it came out of his mouth. We don’t want to live longer, we just don’t want to die? That doesn’t even make sense.

  • Lyn

    Hi, Jennifer,
    Sorry to hear you mom is having more complications. 

    I’ve looked at the “Out of the Shadows” document.  It has on page four a graph showing that 15% of new LC cases are among never smokers.  If you add in 50% of former smokers (not all of whom necessarily quit decades ago), you still get 65%.   I’m wondering where your 80% number came from.  I found David Sampson’s response to you to be relatively transparent and thorough.  Are there other questions you still have for him in particular?

    The way I see it (and feel free to contradict me) – we absolutely need more research into lung cancer among never-smokers – but it is extremely important to also work on smoking cessation/smoking prevention programs.  I don’t think we make good partners if we ignore the face that smoking does contribute to a lot of disease and death (and not just lung cancer).

    • Mbosserman

      Lyn,
      So if you’ve smoked, you should die?  Or if you eat too much sugar you should get diabetes?  Nobody deserves ANY kind of cancer, and we can’t just pick and chose which lung cancer patients would get treatment/cured.
      Lung cancer patients in general need to stand together in order for any improvement to be made.
       

      • Lyn

        Mbosserman – whoa.  I am not saying that ANYONE deserves to die of
        cancer.  I’m saying that if we know of ways to help people increase
        their chances of being healthy, we should work on that, too – not to the
        exclusion of working on finding the reasons that cancer develops in
        smoker or non-smokers.  I didn’t say that smokers deserve to die.  I’m saying that I am in favor of funding programs that help people quit or never start.  But not ONLY those programs.  When I say that we won’t be good partners, I
        mean that if we only focus on the non-smokers with cancer, then it
        further stigmatizes those who get cancer who did smoke.  I completely agree that we all need to stand together. 

        • Mbosserman

          Lyn,
          I totally agree with your last statement.  I stand corrected.  Thank You.  I do feel the schools at least in my area, are doing quite well with teaching the students as early as kindergarten about the pros and cons of smoking.  I don’t have any small children right now, but they may even be teaching them in daycare centers….we can only hope!
           

    • http://www.wtflungcancer.com/ Jennifer Windrum

      Hi Lyn.  The 80% I have gotten from the Lung Cancer Alliance.  In this report, it says 60% of those diagnosed with LC are either never smokers or those who quit decades ago. The stats are very confusing and so many foundations use different stats.  In all honesty, I DO NOT KNOW what the accurate stat is. I asked ACS for the most up to date statistic, but it never provided me with one. This is one huge part of the problem. Stats are all different. What is the real answer here? I do not know.  
      We need more funding for lung cancer period. Smokers, nonsmokers, never smokers…I don’t care. The disparity must stop. That is the main problem here. It is not funding as equally as the other cancers, yet is the #1 cancer killer and least funded. When is this going to stop?
      Yes, smoking is an issue we cannot ignore, but smoking is also not the only reason people are getting lung cancer. Children are getting lung cancer. Oh well, says ACS. Dr. Brawley believes funding for LC is just fine. It’s not. The survival rate has remained virtually unchanged in 40+ years at 15%….or 15.5% depending on which stat you decide to site. This is unacceptable. 
      Lung cancer accounts for 30% of all cancer deaths.  How can we possibly move the needle on cutting cancer deaths by continuing to ignore the #1 killer. We can’t. We simply can’t.
      Yes, I have many questions for Dr. Brawley. In upcoming posts, you will see what answers I have not yet received from my list of follow-up questions (in the blog post).
      Thank you for your kind words of support for my mom. It is greatly appreciated.  Jen

  • Bondlady1

    I am the parent of a pediatric cancer survivor. My daughters cancer is about 200 cases a year in the US , 500 world wide.. Pediatric cancer gets basically NIL from the ACS.. They recieved about 24 million in research grants between the years 2005-2011 Many are clinicals that 2-5 years long.It amounts to about only 3 MILLION a year. I recieved this info from the ACS themselves. I asked them for SPECIFIC REASERCH PROJECTS FOR PEDIATRIC CANCER. I waited over 6 weeks for them to get me the info. My daughters cancer has recieved ZERO funding from the ACS in those years .She had Ewing’s Sarcoma. Her drugs were 30 years old! There are NO pediatric cancer drugs.Drug companies do not research pediatric cancer because they call it rare!They can not make money on pediatric cancer!

     FACTS: There are 2 classrooms of children diagnosed everyday with cancer! 1 in 320 are the chances of your child getting cancer before the age of 18.Cancer is the leading cause of death in children!! !Children are treated with adult cancer drugs and given maximum doses because their cells multiply faster.They suffer lifelong side effects. Children are diagnosed late and many cancers are metestatic when diagnosed. Children are innocents. Some as young as newborns have cancer.My daughter EFS>5yrs is 75% but when metestatic it’s only 30% and for relapse survival is 5%. There are no drugs in existance for relapse . Our children are guinea pigs. We as parents make extremely hard choices to save our childrens lives. The ACS tells us Leukemia in kids is 95% curable..because of their Nobel Prize discovery. This is true  but that is only ONE TYPE of Childhood Leukemia.There are dozens of different types of pediatric leukemia. Most of these protocals are THREE YEARS LONG and the side effects from all these drugs are abysmal in children.Children are not little adults. They need seperate therapies and drugs! I strongly feel if we could CURE kids cancers they would open the door to curing all the adult cancers. .
    .
    The ACS has CHILDREN all around the country raising $$$ at Relay 4 Life! When my daughter innocently recieved her 1st medal her friends raised over $ 4000.00 in her name wanting to help. It is unfortunate that  about $5.00 went to children’s cancers from what her friends raised.. I had heard that the ACS did not do alot for kids cancer research but I was honestly shocked when I recieved the real numbers. I did not just follow along with the crowd. I asked for the answers myself.Whe my daughter participated in Relay We COULD NOT direct the funds to Pediatric Cancer. This year I let her go to recieve her survivor medal because it meant alot to her and she wanted to show that KIDS get cancer too.We didn’t fundraise. I made a small donation and talked to the volunteers there. They all want to help the kids but sadly the ACS is not the place to get help for children .We now raise research $$ for another foundation where I am a Board member.. http://www.makenoise4kids.org These are my personal thoughts I do not want to bad mouth the ACS but I agree they need to appropriate funding for the underdogs better and that MOST people are unaware where they appropriate their funds.  

    The ACS does a GREAT JOB with awareness/support/hospice/Camp Adventure (for kids)/Hope House  etc.. but if they spent the 1 billion on research we may be closer to a CURE for ALL cancers. We wpuldn’t need all the awareness and financial assistance they offer. We wouldn’t need funds for wigs,insurance ,help paying bills,therapies for support etc!

    Pediatric,Lung ,Sarcoma,Ovarian ,Esphogeal,Pancreatic,Brain are all in need of major research!!.
    (sorry I know there are others too!) 

    Bravo !!! You did a great job asking all those questions.. Now lets wait for the answers
    ..
    Mom of Lilly. 12 years ol. Ewing’s Warrior and survivor 20 months.

  • Betsy

    If ya can’t dazzle em’ with brilliance-Baffle em’ with bull****.Nuf said…

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