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Investigation of Alzheimer’s Association in-fighting didn’t address the role of corporate sponsorships

The following guest post is by Matt Shipman, a public information officer at North Carolina State University and a frequent story and news release reviewer. He tweets as @shiplives.


Awareness messaging from the national Alzheimer’s Association has been a source of conflict with local chapters.

Awareness messaging from the national Alzheimer’s Association has been a source of conflict with local chapters.

A fascinating story from health news site STAT highlighted a wave of departures from the Alzheimer’s Association, with many of the group’s regional chapters leaving the flagship organization to set up shop on their own. The story pointed to concerns that a reorganization of the national association would leave individual chapters with less flexibility to address local needs. But STAT didn’t address one particular issue that may have contributed to the intra-organizational friction – the national association’s relationship with large pharmaceutical companies.

Specifically:

  • To what extent did these (possibly lucrative) relationships influence the agenda at national headquarters?
  • Did pursuit of sponsorships (and related perks) by the home office take precedence over grassroots needs?
  • How much are these sponsorships worth and is it enough to skew the organization’s priorities?

The STAT story is excellent (it is well worth a read), and one quote is particularly interesting. The story quotes Christian Wells, president of the former Austin chapter of the Alzheimer’s Association (now called Alzheimer’s Texas), as saying: “Their message revolves to a large extent around fear: ‘This is such a terrible disease, and it has to be eliminated.’…We prefer a message of hope: ‘There’s life with and beyond Alzheimer’s.’”

I asked Wells, who ran the former Austin chapter of the Alzheimer’s Association, whether she felt decisions made by the Alzheimer’s Association were ever influenced by its relationship with national corporate sponsors. She said she was unable to address the question, noting in an email that “as an independent affiliate of the National organization up until 1/15/16, we were not privy to any discussions, agreements, or decisions around national corporate sponsorships. That was all strictly handled in Chicago” where the Alzheimer’s Association is headquartered.

The Alzheimer’s Association “didn’t disclose much information to chapters; I don’t know anything about the dollars involved – though we were told to highlight corporate sponsors on banners or on walk t-shirts,” said Mary Ball, who ran the former San Diego chapter of the association and is now chief executive of the recently-created Alzheimer’s San Diego. The Alzheimer’s Association “is very focused on fundraising, but I don’t know if it influenced their decisions.”

But the Alzheimer’s Association’s focus on awareness — some would call it fear-based messaging — is consistent with what psychiatrist Susan Molchan says she sees from disease advocacy organizations that have financial ties to drug companies – and the Alzheimer’s Association currently lists six pharmaceutical companies among its national corporate sponsors. Although dated, a report on the Alzheimer’s Association website listed 31 pharmaceutical, insurance and diagnostic corporate donors in 2012. These companies collectively were responsible for some $4.2 million in revenue for the association in that year. And this group of sponsors donated some $20 million from 2008 through 2012, the report notes.

“It’s not that the funds [the Alzheimer’s Association] raise go to big pharma’s studies,” Molchan said in an email interview. “They ‘sell the sickness,’ using fear, and they also create false hope for ‘cure.’” [Note: Molchan is a reviewer for HealthNewsReview.org and has written about the Alzheimer’s Association and overdiagnosis for JAMA.]

For example, the Alzheimer’s Association stresses the importance of early detection, offering a variety of resources that facilitate this goal, such as a “10 Warning Signs” document the association encourages the public to use, or the “Value of Knowing” fact sheet that tells readers “half or more of Americans with Alzheimer’s do not know they have the disease” (emphasis in the original).

The Alzheimer’s Association makes several arguments for the importance of an early diagnosis, including that it “improves access to medical and support services,” even though – as the association itself notes – “there are currently no treatments that change the underlying course of Alzheimer’s disease.”

Perhaps more importantly, the Alzheimer’s Association’s materials promoting early detection don’t address the societal tradeoffs associated with early diagnosis.

A 2013 analysis in the BMJ by Le Couteur et al. evaluated pre-dementia screening and reported that “Early diagnosis of cognitive impairment and dementia is argued to be beneficial because it allows healthcare professionals to give counselling about advanced care directives and patients time to organise their financial affairs and future guardianship while they are still competent and to modify risk factors and lifestyle (nutrition and physical, social, and mental activity). However, a recent study of psychosocial intervention including counselling, education, and support in mild Alzheimer’s disease did not show any benefit.”

The paper then went on to note that more focus on early diagnosis comes at a cost to those with advanced disease: “The emphasis on early diagnosis and Alzheimer’s pathology is diverting our attention and healthcare resources from the current needs of older people, which relate to multimorbidity and palliative care.”

And a push for early diagnosis can, of course, be beneficial for drug manufacturers. Here’s how that can work – with a nod to H. Gilbert Welch’s Overdiagnosed (2012): more screening leads to more patients, and more patients is good news for the drug manufacturing business.

So, what does it take to be a national corporate sponsor for the Alzheimer’s Association? That’s not entirely clear. There are a number of ways for corporations to partner with the association, and a variety of sponsorship opportunities. But I was able to find numbers for only one specific sponsorship opportunity, based on a booklet outlining sponsorship opportunities for the summer 2016 Alzheimer’s Association International Conference.

For the 2016 conference, overarching sponsorships ranged from the Platinum PLUS level (at $250,000) to the Silver level (at $50,000). There were also various additional sponsorship options, such as sponsoring a “laptop lounge” ($35,000) or branded pens ($10,000). The 2016 conference appears to have eight Gold sponsors (at $100,000 each) – all of which are pharmaceutical or biotech companies – and two Silver sponsors. Those sponsorships amount to at least $900,000. For the 2015 conference, there were at least 10 sponsors who had exhibits on site, and more than 70 additional exhibitors (whose sponsorship status wasn’t clear).

None of this is meant to suggest that the Alzheimer’s Association is in the pocket of its sponsoring drug manufacturers. But when STAT documents an internal conflict that centers on spending, fundraising, and messaging, we think it’s relevant to ask whether pharma relationships influenced how decisions in those areas were made.

HealthNewsReview.org is, ultimately, based on the premise that it is important for people to be critical consumers of information that involves human health. Part of being a critical consumer is being aware of an organization’s relationships and funding, and to consider how those relationships and funding may influence the organization’s decisions and messages.

The Alzheimer’s Association has not yet responded to our queries about its national corporate sponsors program and how it handles potential conflicts of interest with corporate partners.

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Comments (10)

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Name withheld

March 9, 2016 at 11:01 am

So the AA’s messages about early screening may be the work of pharma companies behind the scenes? An extraordinary suggestion that requires extraordinary proof, none of which is in this piece. The piece also shows how you can make a relationship seem sinister based on little more than questions and suspicions.

[Editor’s note: The commenter requested to remain anonymous because he/she works in healthcare (non-pharma) and is a representative of his/her employer.]

    Matt Shipman

    March 9, 2016 at 3:33 pm

    That would be an extraordinary claim, if I had made it — but I didn’t. As the post states: “None of this is meant to suggest that the Alzheimer’s Association is in the pocket of its sponsoring drug manufacturers. But when STAT documents an internal conflict that centers on spending, fundraising, and messaging, we think it’s relevant to ask whether pharma relationships influenced how decisions in those areas were made.”

    Why is this important? Because we think people should be critical consumers of information, which the story also notes: “Part of being a critical consumer is being aware of an organization’s relationships and funding, and to consider how those relationships and funding may influence the organization’s decisions and messages.”

    In short, this is not a “Gotcha!” piece. I made no outrageous allegations, nor did I purport to have “smoking gun” evidence. Instead, I discussed important questions that I feel are worth considering, even if we don’t have answers. I wanted to raise those questions, because I think this is a conversation worth having.

Susan Molchan

March 9, 2016 at 4:25 pm

A great piece by Matt Shipman, and with regard to the “behind the scenes” comment,
the Alzheimer’s Association doesn’t advocate screening as far as I know, although they do advocate early diagnosis. As future hope, their web site emphasizes drug solutions, despite evidence that public health solutions should be given equal precedence. The influence of industry on an advocacy organization’s agenda is a legitimate concern, as illustrated by a number of cases in which advocacy organizations have overstated benefits of drugs:
http://www.bmj.com/content/346/bmj.f3830, https://www.healthnewsreview.org/2015/07/wrong-forces-drive-osteoporosis-treatment-despite-evidence-of-lack-of-benefit/

    anonymous

    March 9, 2016 at 4:43 pm

    I said the piece suggested it, not claimed it. A suggestion needs proof too. There’s a difference between saying that there’s a potential for corruption in the AA/pharma relationship and saying that the corruption might exist. I think the piece does the latter, in contrast to the disclaimer at its end.

      Matt Shipman

      March 10, 2016 at 6:54 am

      Obviously I don’t feel I crossed a line, or I wouldn’t have done it. And given the explicit statements in the post that I quoted in my previous comment, I’m not sure what more I could have done to address the concerns you raise. I could have avoided writing it at all, of course. But given the feedback I’ve gotten — from reporters and others — this post has led to quite a few thoughtful conversations. And that’s what I was hoping for.

Peter J Gordon

March 12, 2016 at 2:10 am

This is an important and considered article by Matt Shipman.

It is disappointing that 11.01 am and 4.43pm felt that they had to be anonymous. In many ways this demonstrates the very issue: a lack of light.

It is entirely legitimate to raise this topic and to seek more light. Critical enquiry is the very basis of science – as all interventions (whether ‘vested’ or not) will have a consequence. Hopefully all beneficial. But without science we cannot assume this.

“Name withheld” rightly asks that this “extraordinary suggestion” requires “extraordinary proof”. (though I do not regard his/her use of the word “extraordinary” as necessary)

I cannot talk about the USA but I can give evidence from the UK which has the NHS (and so is less “market based”):

(1) in 2012, before the “Prime Minister’s Dementia Challenge” was launched, the Pharmaceutical company ELI LILLY sponsored a “THINK TANK” that recommended early and earlier diagnosis of dementia. Eli Lilly have been promoting their AMYLOID scan (AMYVID) across the UK.

(2) “A significant number of Dementia “Key Opinion Leaders” have had, and many continue to have, financial conflicts of interest (but without a Sunshine Act we will never know the scale of this):
https://uk.pinterest.com/peterjgordon/opinion-leaders-in-dementia/

(3) The “Dementia Tsar”, Prof Alistair Burns, interviewed the CEO of IXICO and UCL (brain imaging company) outside number 10 Downing Street. Have a listen: https://audioboom.com/boos/1047653-derek-hill-of-ixico-and-ucl

(4) Cambridge Cognition and allied commercial companies have been promoting CANTABmobile. (and other products) across the UK. Read my BMJ summary here:
http://www.bmj.com/content/347/bmj.f5597

(5) Political lobbying by Big Charities Policy leads. This goes on. Of course. The Big Charities also have vested interests.

(6) I have heard Big Dementia Conferences often being described as “Trade Fairs” and not just for the Pharmaceutical Industry but for Insurance Companies, care Providers, Technology Companies etc Here is a current example of “Sponsorship Opportunities” for the forthcoming Alzheimer Scotland Annual conference: http://conference2016.daw.dementiascotland.org/sponsorship-options/

(7) Scottish Government organised meetings also promote the business opportunities associated with our elders: http://wp.me/p3fTIB-1LJ

(8) Alzheimer’s Scotland, despite signing the Glasgow Declaration, which enshrines TIMELY diagnosis, continues to “campaign” and “challenge” us to have “difficult conversations” with our elders about their “memory”. They say that they continue to talk about “Early diagnosis” as our elders “may not understand a timely approach” http://wp.me/p3fTIB-1lq

I can provide a longer list of “extraordinary” evidence if “name withheld” would so wish.

Scientific integrity matters. So does open and inclusive discussion with our elders about potential financial conflicts of interest.
Dr Peter J Gordon

Joyce Myers

March 19, 2016 at 11:09 am

I would start by saying that I am working for a small biotech that is developing a test for early detection of amyloid in AD. I am also an older adult in my 60’s with a family history of AD. I believe it is irresponsible to attack big pharma in supporting efforts for early diagnosis and treatment of AD. This is an incurable and progressive disease. The effects on individuals and families are devastating and costly. If we do not direct our efforts toward early diagnosis and treatment we are doing a disservice to our aging population and the next generation who will be left to support them.

    Gary Schwitzer

    March 19, 2016 at 1:06 pm

    Joyce,

    Thanks for your note, but I believe you are misconstruing what was written when you refer to it as an “attack on big pharma.”

    To begin with, this was a review of what a news story did and did not report. And I don’t believe that even the subjects of that journalistic critique would call it an “attack” on them.

    Very logical and important questions were raised in the blog post about the Alzheimer’s Association’s relationship with industry. If you don’t care about those issues and questions, that is your choice. Many other people do care about potential conflicts of interest, and we thought the news coverage should have discussed those issues. As the blog post stated: “Part of being a critical consumer is being aware of an organization’s relationships and funding, and to consider how those relationships and funding may influence the organization’s decisions and messages.”

    Gary Schwitzer
    Publisher
    HealthNewsReview.org

Leslie Nolen

March 21, 2016 at 11:21 pm

I’m happy to be named. And I don’t work for Big Pharma or any other org with a financial stake. My sole interest is as a caregiver-advocate for a family member with dementia and as a peer counselor of long-standing in the dementia community. I’m also no fan of the Alz Assn and have never contributed a dollar to them. That said, of course this article is meant to suggest that the Alz Assn may well be inappropriately influenced by its sponsors. I find it disingenuous to suggest otherwise. Moreover, if this piece is simply intended to advocate for donor/sponsor transparency, why are one-sided comments about competing messages of hope and social costs of early diagnosis mentioned without the countervailing positions? The data point on the lack of benefit of early awareness addressed politically-driven pre-diagnosis, is overly narrow and doesn’t contemplate the broader benefits of earlier family member awareness, for example. Molchan clearly has a strong opinion about “fear based messaging” — which is different from data — and I can say confidently that the fear families have of dementia is evidence-based. This piece mostly provides a bully pulpit to folks who disagree w/ the Alz Assn’s messages and priorities, and presents their opinions as if they were facts.

    Kevin Lomangino

    March 22, 2016 at 6:58 am

    Leslie,

    Thanks for your comment. You are entitled to your opinion about what the article suggests or doesn’t suggest, but I think this statement is pretty clear:

    None of this is meant to suggest that the Alzheimer’s Association is in the pocket of its sponsoring drug manufacturers. But when STAT documents an internal conflict that centers on spending, fundraising, and messaging, we think it’s relevant to ask whether pharma relationships influenced how decisions in those areas were made.

    HealthNewsReview.org is, ultimately, based on the premise that it is important for people to be critical consumers of information that involves human health. Part of being a critical consumer is being aware of an organization’s relationships and funding, and to consider how those relationships and funding may influence the organization’s decisions and messages.ht

    Moreover, when the importance of “early detection” so totally dominates the public discourse, do we really need to spell out those benefits again here? Oh wait, we did:

    Early diagnosis of cognitive impairment and dementia is argued to be beneficial because it allows healthcare professionals to give counselling about advanced care directives and patients time to organise their financial affairs and future guardianship while they are still competent and to modify risk factors and lifestyle (nutrition and physical, social, and mental activity).

    Kevin Lomangino
    Managing Editor