Groups push pharma agenda under the guise of patient advocacy

patients rising logoThere’s nothing like a new Astroturf group to confuse the public. Astroturfers gather ordinary citizens from the grassroots to advocate for various causes while in reality shilling for the trade associations, PR firms, corporations, and political organizations that set them up. Now along comes a new patient advocacy organization, Patients Rising and its sister group Patients Rising Now, which debuted in late summer shortly after the House of Representatives passed the 21st Century Cures Act. Recall that the Cures Act would weaken already weak standards for FDA approval of medical devices opening the door for potentially harmful products to get on the market.

Like most Astroturf groups, its purpose seems noble enough and its goals lofty. On Facebook Patients Rising describes itself this way:

“Patients Rising was launched to fight for access to vital therapies and services for patients with life-threatening diseases. This patient advocacy organization will educate, advocate and communicate the importance of access to essential treatments and diagnostics.  We will be focused on ensuring that the patients’ voice is heard, access to new therapies is paramount, and the pipeline of progress is not threatened.”

The group, co-founded by Jonathan Wilcox, a corporate communications and public relations consultant and adjunct professor at USC’s Annenberg School of Communications and his wife Terry, a producer of oncology videos, aims to accomplish all that through workshops, webcasts at conferences, social media, and sharing patient stories, a staple of these groups.

Its goals are in sync with the zeitgeist of the medical marketplace—Joe Biden’s Moon Shot, the Cures Act, the FDA’s eagerness to push more drugs into the hands of patients. Astroturf groups, of course, are nothing new in the commerce of medicine, but the emergence of a new patient advocacy group to push against the developing meme of unaffordable drugs couldn’t have come at a better time. The Pharmaceutical Research and Manufacturers of America (PhRMA) announced the other day plans for a several million dollar advertising campaign aimed at federal and state lawmakers, policy analysts, and other political influencers, according to the Wall Street Journal. The aim is to polish up the industry’s image in light of rising drug prices and promote the industry’s role in developing new drugs and advancing medical science. The ads will feature patients who’ve been helped by new medicines, putting the patient story front and center in any discussion of the drug industry and drug costs, said Robert Zirkelbach, senior vice president of communications at PhRMA.

High drug prices have made their way into presidential politics, and some in the industry are speaking out like Dr. Steve Miller, head of the pharmacy benefit manager Express Scripts, who said recently,  “We are now being much more vigilant about identifying these things that we believe (are not driven by) scientific innovation, but financial innovation.”

That sounds like the sort of scrutiny Patients Rising will fight against. In a very brief phone interview Jonathan Wilcox told me the fight for access “is a cause worth fighting for,” especially against what he calls “widespread interference in the doctor patient relationship,” which he said had become “a patient crisis.” He said his group also opposes step therapy, a requirement which insurers impose that makes patients try least expensive drugs before taking ones that cost much more. Wilcox had to catch a plane before we could explore that issue and before I could ask about who funds Patients Rising. He didn’t respond to my requests to finish the conversation. Both Wilcox and his wife had worked with Vital Options International, another patient advocacy group with a special mission of generating global cancer conversations. She is a former executive director. A search of its website showed that drug industry heavy hitters, such as Genentech, Eli Lilly, and Bristol-Myers Squibb, had in the past sponsored some of the group’s major activities, including The Group Room and Advocacy in Action, which offer educational patient-driven content filmed at oncology conferences.

Patients Rising uses Twitter to advance its goals. One tweet : “As a patient I expect to be able to access the health services I need. Retweet if you agree.” Who wouldn’t agree with a statement like that, which builds support and awareness for the group?  It also reposts material from other news outlets like “New medicines can be winning play for patients,” an op-ed from the San Diego Tribune, or a lengthy news release about the newly formed Patients Alliance for Drug Safety Protections, a coalition of advocacy groups with links to the pharmaceutical industry, or Jonathan Wilcox’s column in the Los Angeles Daily News, “How Step Therapy Tramples Patients.”

The group makes clear it doesn’t buy the argument drug prices are too high. A commentary on its website from The Tampa Tribune, “Price controls on drugs every bit as absurd as a nationwide salary cap for cancer patients,” by Dr. Thomas Stossel, the American Cancer Society Professor of Medicine and a visiting scholar at the American Enterprise Institute, argues that instead of cost controls we need to make sure that financially-needy patients “find their way to assistance programs to help pay for treatment,” a remedy that might help patients but does nothing to put the brakes on the high underlying price.

The group’s pushback against the high drug price argument aims largely at Dr. Peter Bach, the epidemiologist at New York City’s Memorial Sloan Kettering, who has spoken out about the high price of cancer drugs. Patients Rising doesn’t like Bach’s DrugAbacus that lets users evaluate the value of their cancer drugs on dimensions such as cost, side effects, and benefits. A post by Terry Wilcox for Vital Options International last summer notes, “Cancer patients don’t see value in economic terms,” and advises readers: “Beware drug price calculators that give insurance companies and hospitals the ability to quantify a cancer patient’s life.”

Other targets are the insurance companies and regulatory barriers “standing in the way of the vital treatments they (patients) need every day.” The group passes along unfavorable stories from other news outlets about insurers. When Cigna dropped coverage of 3D mammograms, Patients Rising took note. It also passed along a story in The Fiscal Times, “The Most Hated Health Insurance Company of 2015.” It was Cigna. Insurers have begun their own campaign to bring attention to the high cost of medicines. Its Drug of the Week feature spotlights high-cost pharmaceuticals.

It’s pretty clear after dissecting the activities of this new patient advocacy group that it’s advocating for more drugs no matter what the price, no matter how effective or ineffective they happen to be. Is the group’s agenda the same as that of patients? I asked Dr. Vinay Prasad, an oncologist and researcher at Oregon Health Sciences University, who just published a paper last week in JAMA Internal Medicine. Prasad and a colleague found that of the public speakers at 28 meetings of the FDA’s Oncologic Drugs Advisory Committee, one third had financial connections to drug companies or the organizations they represented received support from those companies seeking marketing approval.

There’s a flawed narrative, Prasad said, that patients want more drugs faster and are willing to tolerate major uncertainty about the risks. “There’s a big disconnect in my experience about what you hear in the news and what patients want,” he told me. In his practice, they are asking about risks and benefits, but that story never gets told. “Have you read a story about patients asking for more information about risks?  A vocal minority is speaking on behalf of a largely silent majority.” But it’s a vocal minority that’s very well funded.


Trudy Lieberman is a veteran health care journalist and regular blogger for HealthNewsReview.org. She tweets as @Trudy_Lieberman.

Comments (7)

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cassels@uvic.ca

February 10, 2016 at 5:08 pm

An excellent post about a very important issue–the credibility of advocacy organizations and their ability to control a public narrative in order to manipulate health policy priorities and set agendas. Of course, the paid advocates with their astroturf messages are mere megaphones for the talking points of their commercial sponsors, so they are barely camouflaged and dead easy to spot. What’s not so easy to spot is when patient advocates, or citizen participants are unwittingly co-opted by organizations who want to appear to have the “voice of the patient” for little more than photo-op reasons without ever sharing power or handing over control to those participants. Sherry Arnstein’s 1969 Ladder of Citizen Participation https://www.planning.org/pas/memo/2007/mar/pdf/JAPA35No4.pdf presents a brilliant and succinct typology of the types of citizen sham involvement that is rife in social and health policy circles. I would invite any citizen advocate who is actively participating in lobbying over health policies and funding priorities to think hard about which rung of the ladder they might be standing on: manipulation, consultation or placation, (ie: tokenistic roles) or whether they are actually achieving any level of citizen power or control. After many years of observing drug company-funded disease groups, I have found that many patient advocates are fuelled by altruism and the promise of power. It is only those patient advocates who have figured out which phoney role they are playing, who become disillusioned and quit. The care and feeding of astroturf groups is a delicate and important –not to mention expensive–enterprise and the cleverness with which genuine altruism can be channeled into a company’s marketing strategy is breathtaking.

Alan Cassels
Drug policy researcher (University of Victoria) and HealthNewsReview.org contributor

    Trudy Lieberman

    February 10, 2016 at 7:56 pm

    Thanks Alan. This is a very insightful comment.

Jennifer Hinkel

February 10, 2016 at 10:22 pm

Many of us who are patients and survivors are at a disadvantage when it comes to getting our voices heard, and this is just an example of how non-patients try to dismiss what we have to say by claiming we are funded by pharma companies. Until you have been a patient, you don’t know what it is like. Lucky for me, I survived cancer and then went on to study health policy and economics so that I would have the opportunity for my voice to be heard. Pharma and biotech are developing science that literally saves the lives of people like me. Many of us are fully supportive of these industries because of what they give back in terms of innovation to those of us who need their products to live. On the other hand, there are insurance companies and other groups taking huge amounts of money out of the health care system for administrative tasks without contributing commensurate innovation or life-saving science. Which group is really benefitting patients? The only reason patients feel high costs is when our insurers try to shift more of the share of these costs on to us as individuals, even though we are paying thousands in premiums. From the patient perspective, it is pretty clear that I want to be on the side of the life-saving, innovative pharma companies. For more of my take on this — https://medium.com/@jenniferhinkel/a-survivor-s-take-on-cancer-drugs-and-the-moonshot-cf86c5cd775e#.mnga4lxlc

    Paul John Scott

    February 11, 2016 at 9:07 am

    “…this is just an example of how non-patients try to dismiss what we have to say by claiming we are funded by pharma companies.”

    But you are funded by pharma companies, right? Correct me if I am wrong, but, though your experience as a patient has surely helped to shape your views, your link says you are “a Partner at McGivney Global Advisors.” The McGivney site explains that “Our experts have not only advised the leading biopharma companies on their pre-launch and launch market access…”, which, whether or not McGivney is involved, astroturf patient advocacy is surely an important strategy. In America, we have all been patients, albeit some more intensively than others. I just went in to have a routine procedure last week and now await news whether the procedures have all been cost shifted. You came out of your patient experience and surely your employment experience convinced of the benefits of today’s drug development system; others of us come through it thinking otherwise. Only the difference is that the patient groups funded in large part by Pharma have their names at the ends of commercials aired to tens of millions of viewers during the Super Bowl. Surely, signing off a comment with “From the patient perspective…” is less than transparent when it’s also the perspective of your clients. There’s no foul in working for the private sector of course, but its all just ironic because the lack of transparency as to whose views are being heard is part of the problem identified in this original post.

susan_molchan@verizon.net

February 11, 2016 at 7:51 am

Great piece; much more attention needs to be brought to these (pharma) advocacy organizations. As Dr. Prasad and others would tell you, a substantial number of the cancer drugs approved don’t actually work (http://www.bmj.com/content/350/bmj.h2068). They don’t increase survival or quality of life. The establishment charities–American Heart Assoc, National Kidney Assoc, the Alzheimer’s Assoc take millions from pharma, and can be just as bad in putting industry interests over patients: http://www.bmj.com/content/bmj/346/bmj.f3830.full.pdf; http://archinte.jamanetwork.com/article.aspx?articleid=1857096

    Trudy Lieberman

    February 11, 2016 at 10:59 am

    Jennifer, I appreciate your comments and your perspective, but there is much more to the story than you present in your comments and in the piece you shared with readers of this blog. While nobody would argue that medical science had not done wonderful things to make us all healthier, we are increasingly becoming aware that not everything drug and device makers send to the market is effective, useful, or prolongs life. And much of it is very costly threatening the budgets of all sorts of payers, not just insurance companies you suggest are to blame for the problem, but for government payers as well. Efforts to figure out what’s really useful and improves health have been stymied for decades by those who benefit financially from the status quo. Because we have no formal way to control healthcare costs in this country, it’s not unreasonable to expect payers to try to keep costs under control. And the way we apparently have chosen to do that now is to shift the cost of high priced care to the consumers themselves when they become patients. Whether that is the right way to control costs is debatable, and the nation needs to have that discussion. In the piece you reference in your comments, you note discount programs and other activities on the part of pharmaceutical companies help patients. They may make it easier to purchase the high priced medications, but the underlying high price is still with us.

Michele Manion

February 15, 2016 at 8:53 am

Very interesting article that exposes another seedy front in the war embattled legit advocacy groups are fighting every day, I have worked in the field of patient advocacy for nearly two decades and know highly experienced, dedicated colleagues who are leaving the field because it has been co-opted by industry masquerading as advocacy. The truly alarming thing is how few legitimate (as opposed to Astroturf) groups seem to understand that this is a problem. Partly, it is conditioning. Our group participates in an NIH grant program for rare diseases. From the very first day, participating groups were encouraged to identify and work with industry partners. That, and the constant reminder of how few drugs are available for rare diseases–as if the only legitimate research on a disease is that which will lead to a new drug– really made it feel like the NIH was a wholly-owned subsidiary of pharma. I know that that is not the intent. NIH does not have the money to fund important drug studies and wants to ensure these studies are done using industry dollars, but the messaging needs to be a bit better, IMO.

Since many Astroturf groups won’t reveal their sources of funding, we have used the surrogate measure of decoding the mission statement as an aid to help separate the wheat from the chaff. If ‘raising awareness’ is the sole or most important focus of a group, be concerned. Many advocacy groups have this a part of their mission, but if it is the only or main mission, it is recipe for no accountability. ‘Awareness’ is at best a strategy or tactic to reach your ultimate goal of accelerating research or providing support through real solutions for patients. It is not quantifiable. At what point has peak ‘awareness’ been attained? Even if you could quantify it, if you were wildly successful and made every corner of the world ‘aware’ of your cause, but it resulted in no additional resources for actual patients and did not move the ball forward on research, it is a pointless endeavor with limited impact. Many of these ‘awareness’ groups are very successful at garnering marketing partnerships with industry that enrich the partners and the executives of the nonprofit, but do little to actually impact disease. In the rare disease field. We refer to this as the ‘Komenization of rare diseases.’

There are, of course, perfectly legitimate and productive partnerships between advocacy groups and industry and we do need industry engagement and support for getting drug and device research done. The important thing is mutual respect about relative roles and this is where legit advocacy groups need to take back their power. We have so far done okay by being very clear that our role is to ensure patients have access to therapies and care they need (truly need- not manufactured solutions to cure problems that don’t actually exist) and not to serve as marketing tools to sell their products to the patient community.

I am not optimistic that legitimate advocacy groups will prevail in this environment. Already, the Astroturf groups are going around legitimate advocacy groups, direct to patients, by offering ‘tell your story’ opportunities online that are then data mined for contact info and sold to relevant industry interests for direct outreach or as ‘registries’. They successfully poach donor dollars away from groups doing the real work with slick marketing and carefully phrased vaguely hopeful statements that actually promise nothing. If we point out the vacuity of these groups, we are accused of negativity. We can’t compete with the dollars they can throw at these initiatives, nor would it be an ethical use of donated money. That’s why so many of the good advocates are giving up.