Advocacy, Real life, Toward better care

PR: should alzheimer’s advocates be doing it for #BIGpharma?

“It enrages, sickens and saddens me when I see Alzheimer’s Disease International promoting Eli Lilly and Janssen R&D/Johnson & Johnson,” I rant in an email to a fellow dementia care advocate/activist on the other side of the world. Half a planet separates us, but my gut tells me we’re on the same page. My gut is right.

“It f*****g sickens me too!” she replies in short order.

The subject of our joint upset is “Every Three Seconds,” a two-hour “documentary” produced by Alzheimer’s Disease International (ADI), in partnership with ITN Productions.

The “documentary” comprises a total of thirty-five four- to five-minute videos; they are divided into three sections. Topics range from “maintaining quality of life” to “person-centred care.” The videos are in a news-magazine-like format to give the impression they are, well, news. It’s a clever way to camouflage the fact that the “documentary” actually features sponsored content from “leading academic, research and care organisations,” which means the corporations and organisations paid to be in the “documentary,” which means it’s not a documentary at all; it’s an advertorial.

Noteworthy among the participating sponsor/advertisers are two of the world’s biggest drug companies: Eli Lilly and Janssen Inc. a pharmaceutical company of Johnson & Johnson. Each has its own five-minute video in the larger advertorial.

“Making medicines that help people live longer and healthier lives is what the Eli Lilly company was created for, and working on Alzheimer’s disease has long been a priority,” a “reporter” gushes at the start of the Lilly commercial, which, predictably, goes on to heap praise on the #BIGPharma giant.

The four-minute video doesn’t mention that Lilly is currently the largest manufacturer of psychiatric medications in the world; it produces Prozac (fluoxetine), Dolophine (methadone), Cymbalta (duloxetine), and Zyprexa (olanzapine), an antipsychotic that is given off label to people who live with dementia.

Meanwhile, it leaves out a whole lot of relevant and important information. For example, it doesn’t mention that:

X olazapine (Zyprexa) is not indicated nor approved for older adults who live with dementia (see the Lilly’s own information on the drug here.

X older adults with dementia who take olanzapine may experience the same kinds of side effects as those of other antipsychotics such as quetiapine (Seroquel), risperidone (Risperdal), and haloperidol (Haldol).

X in 2009, Eli Lilly pleaded guilty to actively promoting Zyprexa for off-label uses, particularly for the treatment of dementia in the elderly. The $1.415 billion penalty included an $800 million civil settlement and a $515 million criminal fine, the largest ever in a healthcare case and the largest criminal fine for an individual corporation ever imposed in a US criminal prosecution of any kind (as of 2009).

Nor does it mention the fact that Lilly ‘threw in the towel’ on its most recent Alzheimer’s drug research in June 2018.

The five-minute Janssen commercial, which is the tenth in the series of thirty-five videos, begins with a short intro that leads into this statement: “Research into dementia and Alzheimer’s disease has certainly come a long way in recent years. That’s in large part due to new technology, and also a greater conversation between scientists and the wider community. Leading the field is Janssen Research and Development, one of the pharmaceutical companies of Johnson & Johnson, whose neuroscience teams are researching how to stop or slow the progression of dementia.”

The reporter goes on to “interview” three Janssen executives who not surprisingly talk about “promise,” “potential,” and collaboration. On the plus side, Janssen is at least transparent about its sponsorship of the video:

What the video fails to talk about is the fact that the artificial construct of “behavioural and psychological symptoms of dementia,” otherwise known as BPSD, was adopted by the International Psychogeriatric Association (IPA) under an “educational” grant from Janssen-Clegg in 1998, at which time Johnson & Johnson was ramping up sales and marketing efforts for Risperdal, an antipsychotic drug it manufactures and for which it was then seeking new markets.

Johnson & Johnson has since settled thousands of cases involving the illicit promotion of Risperdal, (which is now “black boxed” in the US and other countries for use with people living with dementia), including Department of Justice (DOJ) civil and criminal complaints, for a total which was close to US $3 billion in 2015. Here are some additional details from the Consumer Safety Organization, which is run by several law firms keen to litigate:

“Through its subsidiary Janssen Pharmaceuticals, Johnson & Johnson tried multiple times in the 1990s to gain approval [to use Risperdal to treat adolescents and older adults], without success. But despite this, marketing efforts by J & J specifically targeted these groups for off-label usage. It encouraged the use of Risperdal…by geriatric dementia patients. It provided kickbacks to physicians who prescribed the drug, held golf tournaments, and provided other benefits to expand their market. Targeting seniors, J&J engaged in profit sharing with Omnicare, one of the largest nursing home pharmacy systems in the U.S.”

[In 2012], the U.S. Department of Justice (DOJ) levied a $2.2 billion fine against Johnson & Johnson and its subsidiary Janssen Pharmaceuticals. The core reason for the fine was Janssen’s marketing and sale of Risperdal and other drugs (Invega and Natrecor) for unapproved uses.

According to the DOJ’s public statement, the drug maker also had entered into an illegal kickback scheme with Omnicare Inc., a pharmacy that specializes in providing drugs to elderly care and assisted-living facilities. The $2.2 billion fine constitutes one of the larges healthcare-related fraud settlements in the history of the U.S. Even so, it is only a fraction of the $30 billion J & J had made from sales of Risperdal at the time of the settlement.”

The way companies such as Lilly and Janssen push their drugs to physicians and geriatricians who then prescribe them to people like my mom who lived with dementia makes me sick, and very, very angry. It makes me even angrier that despite the billions of dollars in fines, it’s still business as usual for #BigPharma, and that means hundreds of thousands of people who live with dementia are still being prescribed dangerous and debilitating drugs off label (i.e. despite US FDA and other countries’ black box warnings).

This is what being inappropriately prescribed Risperdal and Seroquel (which is manufactured by AstraZeneca*), did to my mom:

That’s why it infuriates me when an organization such as ADI, which is meant to advocate for people who live with Alzheimer disease, broadcasts the marketing messages of drug companies that are responsible for the pain and suffering of hundreds of thousand of older adults and people who live with dementia. By doing PR for #BIGpharma, ADI is indirectly endorsing the use of these drugs and feeding into the profits being reaped from their sales at the expense of vulnerable people living with dementia.

Alzheimer’s disease didn’t steal my mom from me, not at all, antipsychotic drugs and the neglect and abuse she endured in a dementia jail did did:

Dementia doesn’t rob someone of their dignity. It’s our reaction to them that does.

Accepting funding from pharmaceutical companies is a massive conflict of interest for Alzheimer’s advocacy organisations (read more about that here). Shame on ADI for producing, promoting and publicising corporate BS as if it were truth. Perhaps more important, shame on pharmaceutical industry executives worldwide for profit-making on the backs of the vulnerable older adults who live with Alzheimer’s disease and other types of dementia, making them sicker than they already are and even killing them for the sake of a making buck. Or, to be more accurate, billions of bucks.

A prominent clinical pharmacist in psychiatry summed it up like this in an email:

“The multinational pharma groups are huge, slick, polished and ruthless. They present themselves as organizations with an interest in health, [when] their actual focus is to make enormous amounts of money.”

Indeed. And that’s precisely why Alzheimer disease advocacy organisations such as ADI shouldn’t be partnering with #BIGpharma, endorsing them in any way, or — God forbid — doing their PR for them!

#BIGpharma doesn’t need or deserve our support.

*Note: As Lilly and Janssen have with Zyprexa and Risperdal respectively, AstraZeneca has also settled lawsuits worth hundreds of millions of dollars with respect to promoting the off-label use of Seroquel and other medications.

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1 thought on “PR: should alzheimer’s advocates be doing it for #BIGpharma?”

  1. You know my take on this, Susan, as a thoroughly jaded person who used to write for the pharma industry. I’ll take your rage about the drug connection and add mine about the research push: Alzheimer’s groups and associations should NOT be helping Big Pharma recruit for clinical trials. It might sound very noble to “help research”, but if people knew the truth, they would not find it very noble at all.

    Big pharma (along with complicit and possibly ill-informed Alzheimer’s associations) are actively targeting people in their 50s to be guinea pigs for the existing, ineffective drugs, and they keep pushing for people with dementia to get involved in other drug studies. Completely inappropriate; it is illegal to use children and pregnant woman in clinical trials; our vulnerable seniors are no different. If individuals want to be part of research, that’s different and that’s their right, but to pressure caregivers and PLWD is inexcusable, in light of the scant benefits.

    Until Big Pharma can show us that they understand the cause of dementia, they are basically throwing away billions of dollars doing research to find a profitable drug to profit from. Imagine all that money put into CARE instead?


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