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

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

Original Post: http://www.healthnewsreview.org/2016/03/investigation-alzheimers-association-fighting-didnt-address-role-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.

The post Investigation of Alzheimer’s Association in-fighting didn’t address the role of corporate sponsorships appeared first on HealthNewsReview.org.

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Updated: March 11, 2016 — 11:00 pm

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