Pharmaguy's Insights Into Drug Industry News
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Pharmaguy's Insights Into Drug Industry News
Pharmaguy curates and provides insights into selected drug industry news and issues.
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Very Few Patient Groups Don’t Take Pharma Money

Very Few Patient Groups Don’t Take Pharma Money | Pharmaguy's Insights Into Drug Industry News |

Most patient and consumer advocacy groups receive funds from the pharmaceutical industry, according to a new study released by the group PharmedOut.


Only a handful out of 7,685 health advocacy groups in the U.S. are completely independent of pharmaceutical industry money, according to a list the group released Oct. 13. PharmedOut is a Georgetown University Medical Center project that advances evidence-based prescribing and educates health-care professionals about pharmaceutical marketing practices.


And industry funding of patient groups, including websites and informational materials, is often not apparent to the average consumer, which could mislead consumers into believing they’re getting unbiased health advice.


“Industry funding is often not disclosed on websites or informational materials or is hidden,” PharmedOut Director Adriane Fugh-Berman told me in an Oct. 16 phone call. Funding and sponsorship is often very subtle and difficult to identify, she said.


In addition, she said, industry sponsorship can affect the stands patient and consumer groups are willing to take, she said.


Groups that accept industry funding are affected by that money, regardless of whether they think they are, she said.


"Look at the stands taken and not taken,” she said. “For example, where is the anger and outrage about drug costs?”


Fugh-Berman is an associate professor in the Department of Pharmacology and Physiology and in the Department of Family Medicine at Georgetown University Medical Center.


Further Reading:

  • “Pharma 'Patient Centricity' Aids & Abets the Opioid Epidemic”;

  •  “93% of Patient Advocacy Groups Included in FDA Funding Discussions Receive $ from Pharma”;

  • “Patient Advocacy Groups with Funding & Form Letter from @PhRMA Oppose Nevada Legislation”;
  • “More Than Two-thirds of Patient Advocacy Groups Receive Industry Funding”;
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Patient Advocacy Groups with Funding & Form Letter from @PhRMA Oppose Nevada Legislation

Patient Advocacy Groups with Funding & Form Letter from @PhRMA Oppose Nevada Legislation | Pharmaguy's Insights Into Drug Industry News |

Health care nonprofits backed by the pharmaceutical industry have inundated Democratic Sen. Yvanna Cancela’s inbox over the last couple of days as discussions on a major piece of legislation she sponsored continue behind the scenes.


Since Friday, seven groups have sent similar letters addressed generally to Nevada state senators asking them to oppose a polarizing pharmaceutical bill, SB265. All of the groups have taken money from either PhRMA, the trade association representing pharmaceutical companies in the United States and the driving force behind the opposition to the bill, or directly from pharmaceutical companies themselves.


Four of the seven organizations received grant funding directly from PhRMA in recent years including:


  • RetireSafe, a nationwide senior advocacy organization, received a $25,000 grant in 2014
  • The Epilepsy Foundation received a $25,000 grant in 2014
  • Caregivers Voices United’s affiliate Caregivers Action Network, a family caregiver organization, received $315,000 from PhRMA as a general contribution and funding to help with an event in 2014
  • National Council of Asian Pacific Islander Physicians received two $10,000 grants in 2013 and 2014


Many of the organizations also took money from pharmaceutical companies in 2016, including Pfizer and Sanofi, both which have registered lobbyists this session. The local nonprofit Lupus of Nevada, Inc. has also been encouraging people on Facebook to contact their legislators about the bill and provides them with a form letter, of which Cancela says she has received many copies.


The legislation, which Cancela introduced in February, would put price controls on diabetes medication, require pharmaceutical sales representatives to be licensed and annually report their activities and mandate disclosure of any pharmaceutical-related contributions by nonprofits in the healthcare sector.


The letters, which in some portions use nearly identical language, argue that SB265 could threaten access to medications by causing stockpiling in response to the required 90-day notice ahead of certain price increases, will help pharmacy benefit managers (PBMs) and insurance companies instead of patients and require nonprofits to disclose certain information about contributions they receive from pharmaceutical companies that is already publicly available — similar arguments proffered by the pharmaceutical industry in opposition to the bill.


Further Reading:

  • “Pharma Turning Patients With Rare Diseases Into D.C. Lobbyists”; 
  • “93% of Patient Advocacy Groups Included in FDA Funding Discussions Receive $ from Pharma”; 
  • “The Yin Yang of Patient Advocate Groups and the Pharma Industry”; 
  • “More Than Two-thirds of Patient Advocacy Groups Receive Industry Funding”; 
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The Yin Yang of Patient Advocate Groups and the Pharma Industry

The Yin Yang of Patient Advocate Groups and the Pharma Industry | Pharmaguy's Insights Into Drug Industry News |

The more visible, expanded role of patient advocates in shaping FDA regulatory and policy decisions for drug development has focused attention on the financial and operational links between biopharma companies and independent health organizations. FDA-industry user fee agreements in recent years have promoted “patient centricity” and strategies for giving the “patient voice” a more visible and articulate role in calculating the benefits as well as risks in drug testing and market approval (read, for example, “The New, Patient-Centric FDA: A Double-edged Sword”; Patient groups now are more involved in agency deliberations over development strategies for specific drug classes and in vetting approval pathways for new medicines.


Greater patient involvement in regulatory processes, though, has boosted scrutiny of drug company financial support for independent patient organizations, raising questions about whether the views expressed by such groups fully reflect broader public needs and values. During the debate last year on the 21st Century Cures legislation, consumer activists criticized “so-called patient advocacy groups” for supporting changes in standards to permit greater consideration of real-world evidence and biomarkers in product approval decisions.


[An example of a “so-called patient advocacy group” is or was the Restless Leg Foundation, which had many ties to GSK:


  • GSK is a Gold Corporate Sponsor of the RLS Foundation, which means GSK has given the foundation a good chunk of change;
  • at least one member of the Foundation's Medical Advisory Board has financial ties to a pharmaceutical company (GSK) with a treatment for RLS;
  • the PR activity of the organization seems to have picked up right when that company's drug (ReQuip) hit the market;
  • the first RLS Foundation Science Award went to Ronald L. Krall, MD, Senior VP of Worldwide Development at GSK;
  • Richard Allen, a member of the RLS Foundation's Medical Advisory Board, had the "pleasure" of "collaborating" with GSK to do studies supporting the data on the prevalence of RLS in the US and in Europe;
  • the color scheme of the RLS Foundation's Web site matches that of the Requip product site.


See ]


These concerns have been heightened by analyses documenting industry financial support of patient organizations. A study published in the New England Journal of Medicine (NEJM) March 2, 2017 found that 83% of 104 large patient advocacy organizations receive financial support from drug, medical device and biotech companies, and that industry executives regularly serve on their governing boards (find the data here: Similarly, a survey of patient advocacy executives published in JAMA in January 2017 reported that 67% of the groups acknowledge industry support (find the data here: Last year, the Project on Government Oversight (POGO) highlighted pharma funding of leading patient organizations such as the National Health Council, the Alliance for Aging Research and the National Organization for Rare Disorders (NORD), raising questions about their independence in backing the Cures legislation and FDA funding by user fees.


The authors of these studies speculate that industry funding raises conflicts of interest, particularly in the area of drug pricing, as patient advocates funded by pharma companies may be less vocal in seeking access to cheaper medicine (read, for example, #Pharma's "Patient Centricity" Pays Off: Patient Groups Mum on Drug Costs;


Further Reading:


  • Transparency is Good in Theory, But Not in Practice; 
  • #Pharma to Patient Advocacy Groups Questioning High Drug Prices: "Why Are You Doing This to Us?"; 
  • Holy Sh*t! Is There No End to Mylan's Shenanigans? Paying Off Patient Groups to Lobby!; 
  • UK Patient Groups that Backed New Cancer Drug Received £ from #Pharma Firm; 
  • Majority of Patients’ Groups Siding With Pharma Against Medicare Part B Pricing Reforms Receive Industry Funding; 
  • #Pharma's "Patient Centricity" Pays Off: Patient Groups Mum on Drug Costs; 
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More Than Two-thirds of Patient Advocacy Groups Receive Industry Funding

More Than Two-thirds of Patient Advocacy Groups Receive Industry Funding | Pharmaguy's Insights Into Drug Industry News |

At a time when drug company lobbyists are widely vilified as icons of avarice, patient advocacy groups still wear the white hats.


But those organizations, which promote cures for every type of cancer and hundreds more diseases, have come under criticism lately for favoring their drug company funders in contests on Capitol Hill.


In one case, a diabetes group accepted money from food companies and played down the health risks from their high-sugar products; in another case, a mental health association, reliant on drug company dollars, opted to keep quiet about the soaring prices of its antidepressants. And many of the patient advocacy groups pushing for passage of the 21st Century Cures Act, which consumer groups argue rolls back patient protection, are funded in large part by pharmaceutical firms.


“The public should be concerned about this for many reasons,” said Jonathan H. Marks, director of the bioethics program at Pennsylvania State University. “One of the most important is that patient advocacy groups have credibility with policymakers — as corporate donors are well aware. Policymakers tend to assume that these organizations are acting in the interests of patients, or public health more broadly.”


But, said Marks, this is not always the case when the groups are reliant on drug or device industry donations — a point not often discussed when they lobby the Food and Drug Administration to speed new drugs to market, participate in National Institutes of Health panels, bring patients to testify before Congress, or advise patients on courses of treatment.


A study published Tuesday in JAMA Internal Medicine offers evidence of the ways in which patient advocacy organizations, or PAOs, rely on industry dollars.


The research, led by Susannah Rose of the Cleveland Clinic, shows that PAOs receive industry funding more often than previously believed. Some of the groups’ leaders, responding to a confidential survey, also acknowledged donor pressure to take policy positions that are best for the donors. Others said they doubted their own level of independence.


Rose, director of research in the Cleveland Clinic Office of Patient Experience, and her colleagues surveyed 439 patient advocacy organizations across the United States.


Of the 289 groups that responded, more than two-thirds reported receiving industry funding, with a median of $299,000. Twelve percent said they received over half their funding from industry. Almost 9 percent received $1 million or more. The pharmaceutical, medical device, and biotechnology sector accounted for a median of 45 percent of the donations. Only one quarter of the groups said they had policies on disclosing their financial relationships.


Further Reading:

  • Transparency is Good in Theory, But Not in Practice;
  • #Pharma to Patient Advocacy Groups Questioning High Drug Prices: "Why Are You Doing This to Us?";
  • Holy Sh*t! Is There No End to Mylan's Shenanigans? Paying Off Patient Groups to Lobby!;
  • UK Patient Groups that Backed New Cancer Drug Received £ from #Pharma Firm;
  • Majority of Patients’ Groups Siding With Pharma Against Medicare Part B Pricing Reforms Receive Industry Funding;
  • #Pharma's "Patient Centricity" Pays Off: Patient Groups Mum on Drug Costs;
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Holy Sh*t! Is There No End to Mylan's Shenanigans? Paying Off Patient Groups to Lobby!

Holy Sh*t! Is There No End to Mylan's Shenanigans? Paying Off Patient Groups to Lobby! | Pharmaguy's Insights Into Drug Industry News |

Against a growing outcry over the surging price of EpiPens, a chorus of prominent voices has emerged with a smart-sounding solution: Add the EpiPen, the lifesaving allergy treatment, to a federal list of preventive medical services, a move that would eliminate the out-of-pocket costs of the product for millions of families — and mute the protests.


Dr. Leonard Fromer, a clinical professor of family medicine at the University of California, Los Angeles, just promoted the idea in the prestigious American Journal of Medicine. A handful of groups are preparing a formal request to the government. And Tonya Winders, who runs a patient advocacy nonprofit organization, reached out late last month to crucial lawmakers on Capitol Hill.


“We can save lives by ensuring access to these medications,” said Ms. Winders, chief executive of the Allergy and Asthma Network.


A point not mentioned by these advocates is that a big potential beneficiary of the campaign is Mylan, the pharmaceutical giant behind EpiPens. The company would be able to continue charging high prices for the product without patients complaining about the cost.


An examination of the campaign by The New York Times, including a review of documents and interviews with more than a dozen people, shows that Mylan is well aware of that benefit and, in fact, has been helping orchestrate and pay for the effort.


The journal article says it was “drafted and revised” by a medical writing consulting firm paid by Mylan, in consultation with Dr. Fromer. And Dr. Fromer himself has served in the last year as a paid Mylan consultant — which he discloses as part of the journal article. The company has also contributed money to many other groups behind the effort, and it has met with them — and Ms. Winders’s organization in particular — to coordinate its strategy, the participants said.


The idea being advanced is simple: If the EpiPen makes the federal preventive list, most Americans would have no insurance co-pay when getting the product. That means they could obtain the medication with no direct cost, regardless of its retail price. Mylan could keep the EpiPen at the current price, or perhaps raise it more, while keeping patient anger at a minimum.


Instead, the federal government, health insurers and employers would pay the bill. Those costs, in turn, could be passed on to consumers in other ways, as in higher premiums or higher co-pays on other drugs.

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UK Patient Groups that Backed New Cancer Drug Received £ from #Pharma Firm

UK Patient Groups that Backed New Cancer Drug Received £ from #Pharma Firm | Pharmaguy's Insights Into Drug Industry News |

Three patient groups that successfully lobbied for a new leukaemia drug to be on the NHS received over £60,000 from the pharma firm behind the product.


One of the charities relies on Big Pharma for 70 per cent of its funding and has a trustee with financial links to Janssen-Cilag, which manufactures the Ibrutinib drug. Leukaemia Care, the Chronic Lymphocytic Leukaemia Support Association (CLLSA) and Bloodwise made formal submissions in relation to the capsules.


Janssen-Cilag provided the CLLSA with a £20,000 grant in 2104 for “summits”, “video materials”, “surveys” and “conferences”.


The patient group’s latest accounts state: “Main source of funds are from members donations and grants from pharmaceutical companies.”


Charity chair David Innes denied the CLLSA had a conflict of interest: “All our relations with pharmaceutical companies are regulated by the code of the ABPI. This code specifically rules out any interference in our affairs by any pharma company.”


However, professor David Miller, an academic who is also a transparency campaigner, said the practice of healthcare giants funding these groups “distorts” the decision-making process.

Pharma Guy's insight:

Although there may be no visible "strings" attached to such grants, if the patient group is deemed not to have reciprocated by supporting the donor's cause, there may be no future "hands off" funding.


In any case, It’s good to know that patient groups in UK may be as influenced by pharma money as those in the U.S. For more on that, read: “Majority of Patients’ Groups Siding With Pharma Against Medicare Part B Pricing Reforms Receive Industry Funding”;

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Pharma Use Comics, Camps, and College Scholarships, to Woo Kids with Hemophilia

Pharma Use Comics, Camps, and College Scholarships, to Woo Kids with Hemophilia | Pharmaguy's Insights Into Drug Industry News |

To reach the small, but lucrative hemophilia market, some drug makers have tried an unusual and high-intensity promotional strategy — building lifetime relationships.


Companies start early by giving children toys and comic books. One sponsored summer camps and another offered grants for music and sports classes. Teens have been awarded college scholarships. Young adults and parents were offered jobs to advise families about treatment. In some cases, sales reps have been assigned to individual patients to ensure long-standing use of specific medicines.


Such moves exceed the usual sort of industry promotion aimed at consumers, and, in fact, more closely resemble the tactics used by the pharmaceutical industry to sway physician prescribing, according to a paper published Tuesday in PLOS Medicine. And the authors argued that the web of ties can foster a culture of dependency that may undermine effective decision-making and requires more regulatory oversight.


“This particular community is entirely enmeshed with the pharmaceutical industry,” said coauthor Dr. Adriane Fugh-Berman, who heads PharmedOut, a project that examines the influence drug makers have on the practice of medicine. She noted that companies aggressively pursue these patients because industry research indicates they are very organized, well connected, and savvier than most consumers.


“This is all about buying brand loyalty to expensive drugs that will be used for a lifetime … This is a creepy situation,” she added. “It’s a clear illustration that pharmaceutical companies go after whoever controls market share. And in this case, it’s the patient. But the relationships are so entangled that it can get in the way of a rational assessment of the different therapies. And it flies under the regulatory radar.”


Moreover, the authors argue that the blurred lines extend to patient advocacy groups, some of which are funded, in part, by drug companies. As the authors see it, these close relationships may be used to pressure payers and legislators to cover certain medicines or distort discussion of treatment options, including more research that would compare the effectiveness of the different medicines.

Pharma Guy's insight:

The authors state that the "extent to which factor manufacturers affect discourse about treatments and prophylaxis among researchers and PWH deserves public discussion. The extent to which manufacturers use patient advocacy organizations as mouthpieces for marketing messages must also be addressed. Additionally, the effect of industry-generated friendship, community, scholarships, job offers, organizational support, and other gifts on patient perceptions of what are the best therapies should be assessed....  Regulatory controls on industry interactions with patients should be considered.


Also read: “How #Pharma Targets Kids. Is It Education or Marketing?”; 

tyler phillips's comment, October 19, 2016 5:03 PM
This is crazy!
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Biogen Too "Patient-Centric?" Feds Investigating Its Patient-Assistance Programs

Biogen Too "Patient-Centric?" Feds Investigating Its Patient-Assistance Programs | Pharmaguy's Insights Into Drug Industry News |

Biogen disclosed in its first-quarter earnings report that it has been subpoenaed by the federal government. The subpoena requests documents detailing its relationship with nonprofit foundations that assist patients taking drugs sold by the company. These foundations often provide financial support to patients who cannot afford their medications. Biogen said it is cooperating with the government inquiry.

It is illegal for drugmakers to give patients copay assistance if they are insured by federally funded healthcare programs. Some drugmakers fund outside foundations that, in turn, direct money towards patients for medications. These foundations are bound by rules that dictate the terms of this assistance; the foundations, for example, cannot restrict coverage to only one drug.

Patient-assistance programs have come under fire in recent months. During a House hearing, Rep. Eleanor Holmes Norton (D-DC) charged Turing Pharmaceuticals with using patient-assistance programs as a means of diverting attention from the high price of the company's toxoplasmosis treatment, Daraprim. Some critics contend that drugmakers create the need for patient-assistance programs by pricing their drugs too high.

Pharma Guy's insight:

Does this have anything to do with disappointing Tecfidera sales and Biogen's heightened direct-to-consumer promotion campaign? For more on that, read "Social Media Failed to Do the Job, So Biogen Turned to DTC to Promote Tecfidera"; 

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A ‘Roadmap’ for Navigating Patient Advocacy | FDA Voice

A ‘Roadmap’ for Navigating Patient Advocacy | FDA Voice | Pharmaguy's Insights Into Drug Industry News |

FDA’s Center for Drug Evaluation and Research (CDER) is sponsoring a daylong public workshop on March 31, 2016, titled Navigating CDER: What You Should Know for Effective Engagement. Our presentations will help patient advocates gain a better understanding of FDA and provide specific resources to help you and your colleagues learn ways to effectively advocate and engage with the Agency on behalf of the patients you serve.

We’ll provide a broad overview of patient engagement with various offices within CDER, and drill down into key specifics such as:

  • Who and when to call;
  • How to set up a meeting at FDA;
  • Provide tips on making the most out of your meeting; and,
  • How to prepare an effective presentation for FDA staff.


We’ll also discuss topics such as understanding labeling, generic drugs, and how patients can effectively interact and provide input to FDA. And, we’ll look at some programs including different drug approval processes, expanded access, and FDA’s role in patient focused drug development (PFDD).


These are only a few of the many important areas we’ll tackle.

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#Pharma is Not Ready to be Patient Centric, Says This Patient Blogger

#Pharma is Not Ready to be Patient Centric, Says This Patient Blogger | Pharmaguy's Insights Into Drug Industry News |

With all due respect, you are not automatically a “patient-centric” company just because you added that term to your marketing materials and hired someone with an eponymous title who travels the country with a spectacular LinkedIn profile on fact-finding missions to buy nonprofit CEO’s lunch to data mine their insights.

And don’t get me started on regulatory. We in the Patient Advocacy sector are not naive to The Physician Payments Sunshine Act. (It just rolls off the tongue, doesn’t it?) This onomatopoeic law is killing all of us. It stifles innovation (with a lower case “i”), presents innumerable encumbrances to actually getting anything done and ties up any possibility for success in a sea of red tape negotiations.

My point is that that a re-imagining of patient-centricity needs to occur STAT. Otherwise no one wins.

PAOs are at fault too. We can’t just take your money and not expect to produce ROI. And yet, there are a few nonprofits for whom ROI is in their DNA. They operate using program management and evidence-based patient outcome reporting. Pharmas that choose to meaningfully engage with these groups benefit from a measurable competitive advantage by viewing us as business partners, rather than charities looking for a handout.

Pharma Guy's insight:

I guess this patient's points are (1) transparency of payments to physicians somehow stifles "innovation," and (2) payments to Patient Advocacy Organizations (PAOs) should be fees for service!

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Some Nominees for the FDA Patient Engagement Advisory Committee

Some Nominees for the FDA Patient Engagement Advisory Committee | Pharmaguy's Insights Into Drug Industry News |

The Food and Drug Administration has announced the development of a Patient Engagement Advisory Committee.

Although the FDA still has the final say on regulation, this committee would be beneficial in these ways:

  • to help identify the most important benefits and risks of a technology from a patient’s perspective;
  • to assess the relative importance to patients of different attributes of benefit and risk, and clarify how patients think about the trade-offs of these benefits and risks for a given technology; and
  • to help understand how patient preferences vary across a population.

The nine-member committee has not been established yet, but we thought we’d recommend our own nominees for promising contenders who have a sufficient background to represent patients.

A few of these people might be more obvious when it comes to patient input on healthcare, but that doesn’t diminish their voice on the matter of engagement. And some of the others could represent the voices that sometimes fall between the cracks.

Find out who here: 

Pharma Guy's insight:

FDA is also seeking consumers to participate in drug review committees: 

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Report: #Pharma Does Not Feel the Pain of Orphan Patients

Report: #Pharma Does Not Feel the Pain of Orphan Patients | Pharmaguy's Insights Into Drug Industry News |

As patients and caregivers are confronted with a dramatically changing healthcare landscape, American patient advocacy organizations are evolving the work they do for these communities and would like to see their relationships with pharmaceutical companies also change to keep pace.

This report from inVentiv Health Public Relations Group is based on more than two months of interviews with nearly four dozen patient advocacy organizations representing patients with a variety of diseases and conditions, including cancer, mental health and rare diseases. It highlights areas in which the patient advocates would like to see change in their relationships with pharmaceutical partners, as they work together to ensure that new medications arriving on the market meet the needs of people with devastating diseases.

From the report:

"To cite just one flashpoint, rising co-insurance in many health plans under the ACA, as well as narrowing formularies and physician networks, have exposed patients with rare cancers and other orphan diseases to more burdensome costs. Pharmaceutical partners aren’t always able or willing to alleviate their pain. When drug companies fail to respond to cost concerns, patient groups feel abandoned by their pharma partners."

Pharma Guy's insight:

The #1 item on the patient advocacy wish list: "Improve transparency and authenticity"

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Can You Trust Patient Rankings of #Pharma Corporate Reputation?

Can You Trust Patient Rankings of #Pharma Corporate Reputation? | Pharmaguy's Insights Into Drug Industry News |

An independent study by PatientView

  • Findings based on a survey of 1,150 patient groups (from 58 countries and of differing specialties)
  • Survey conducted mid-November 2014 to mid-January 2015
  • Patient-group feedback on the corporate reputation of the entire pharma industry during 2014
  • Patient-group feedback on the corporate reputation of 37 individual pharma companies in 2014
  • Results for 2014 are compared with those of 2013, 2012, and 2011

The 37 pharma companies reviewed in the study are: AbbVie l Actavis l Allergan l Amgen l Astellas l AstraZeneca l Baxter International l Bayer l Biogen Idec l Boehringer-Ingelheim l Bristol-Myers Squibb l Celgene l Eisai l Eli Lilly (Lilly) l Gilead l GlaxoSmithKline (GSK) l Grũnenthal l Ipsen l Janssen l Lundbeck l Menarini l Merck & Co (USA) l Merck KgA (Germany) l Mylan l Novartis l Novo Nordisk l Otsuka l Pfizer l Roche l Sanofi l Servier l Shire l Stada Arzneimittel l Takeda l Teva l UCB l ViiV Healthcare

The corporate reputation of individual pharma companies (as seen from a patient perspective) shows some significant changes between 2014 and 2013 (37 companies assessed in 2014; 33 companies in 2013).

Pharma Guy's insight:

Several of the patient organizations participating in this survey receive funding from the pharmaceutical industry. This is common practice especially in the EU where pharma companies cannot promote product directly to consumers but must depend upon intermediaries such as patient organizations -- some of which pharma companies set up themselves -- to help them reach consumers. 

Also note that Lundbeck (after slumping to 22nd in 2013—almost certainly because patient groups reacted to the June 2013 news that the company had been fined by the European Commission) has managed to move back up the rankings in 2014 to 5th. How quickly patients forget! It's difficult to believe. More likely is that Lundbeck spread goodwill via increased grants to patient groups. I'm just speculating here.

Tim Mustill's curator insight, February 19, 2015 4:03 AM

In response to Pharmaguy's 'speculation'. There is a close relationship between pharma companies and patient groups but not for the reasons he cited and certainly not to the point that it would bias the outcome.

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Pharma “Patient Centricity” Aids & Abets the Opioid Epidemic

Pharma “Patient Centricity” Aids & Abets the Opioid Epidemic | Pharmaguy's Insights Into Drug Industry News |

The machinations of Washington are complex, but it’s hard to overstate the influence — often behind the scenes — of lobbyists. For years, the opioid industry has been funding nonprofit organizations that promote patient access to their drugs. These medical organizations pushed for Congress to approve Marino’s Ensuring Patient Access and Effective Drug Enforcement Act, which serves the interests of major drug distributors and retailers.


On Jan. 26, 2015, a number of organizations nominally interested in ensuring legitimate access to pain medication wrote to Marino, Rep. Peter Welch, D-Vt., Rep. Marsha Blackburn, R-Tenn., and Judy Chu, D-Calif., praising their fight for the now controversial legislation. They argued that the country needs need a balanced approach to the opioid abuse crisis that ensures access for pain patients while stopping drug abusers. Among the groups were the Alliance for Patient Access, which describes itself as “a national network of physicians dedicated to ensuring patient access to approved therapies and appropriate clinical care” and the American Academy of Pain Management (since renamed the Academy of Integrative Pain Management), which describes itself as an organization advancing “integrative pain care approaches” defined by the National Institute of Health.


As of June 2017, the Alliance for Patient Access’ list of associate members and financial supporters contains over two dozen pharmaceutical companies, including Pfizer and Purdue Pharma. The latter’s marketing practices have been blamed for fueling the opioid epidemic.


“Federal agencies, law enforcement, pharmaceutical industry participants and prescribers each play a role in working diligently to prevent drug abuse and diversion,” they wrote. “However, it is also imperative that legitimate patients are able to obtain their prescriptions without disruption.”


Andrew Kolodny, the co-director of opioid policy research at Brandeis University, said this argument — that legitimate pain medication patients should not pay the price for the fight against drug abuse — is how the opioid lobby has framed (and continues to frame) the issue of prescription abuse from the beginning.


“These pain organizations make the case for the opioid lobby. But if you scratch the surface, you’ll find that the pain organizations that signed the letter are receiving money from the opioid lobby,” Kolodny told Yahoo News.


Kolodny said the opioid lobby often uses “phony front groups” to support its efforts in blocking any reduction in prescribing — and uses them very effectively.


An explosive investigation by the Washington Post and “60 Minutes” released Sunday revealed that Marino had accepted large donations from the pharmaceutical industry while pressing for the legislation that they favored (read “How Congress Allied with Drug Company Lobbyists to Derail the DEA’s War on Opioids”;


The next day, Missouri Sen. Claire McCaskill, the top-ranking Democrat on the Homeland Security and Governmental Affairs Committee, announced that she would introduce legislation to repeal the law.


Further Reading:

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#Pharma Turning Patients With Rare Diseases Into D.C. Lobbyists

#Pharma Turning Patients With Rare Diseases Into D.C. Lobbyists | Pharmaguy's Insights Into Drug Industry News |

The pharmaceutical industry is teaming up with advocacy groups that are training and even paying for patients who need their medicines to promote their causes in Washington.


National polls identify high drug prices as Americans’ No. 1 health care complaint (read, for example, “Kaiser Health Tracking Poll: Americans Weigh In on How to Keep Drug Costs Down”;,  and President Trump has declared that pharmaceutical companies are “getting away with murder”; 


But these behind-the-scenes partnerships between the pharmaceutical industry and advocacy groups may work against reducing the price of high-price drugs. Critics say vulnerable patients are being manipulated and the goals promoted are skewed by the pharma benefactors who want faster government approval for new products and to get insurers or government programs to pay for them, whatever the price tag.


Dr. Ezekiel Emanuel, a bioethicist who has studied the issue, said he questions whether patient advocacy groups truly are “white knights defending the good fight.” He said research suggests that the conflicts of interest that occur when drug companies train and finance patient groups are “pretty rampant.” Emanuel co-authored a March study that found 83 percent of the 104 largest patient advocacy groups take money from the drug, medical device, and biotech industries (read "83% of Patient-Advocacy Organizations Receive Substantial Financial Support from the Drug Industry But Few Disclose How Much"). Smaller organizations are even more likely to be disproportionately dependent on industry funding for their operating budgets, he said.


The patient-lobbying conference, organized by the EveryLife Foundation for Rare Diseases, underlines how the financial interests of manufacturers and the medical needs of patients are intertwined.


More than 300 patients and advocates attended, and nearly all took part in a subsequent “Lobby Day” to visit congressional staff and lawmakers. They permitted a reporter from Kaiser Health News to observe and also join in a reception showcasing art by some of the patients.


Many patients were visibly sick or terminally ill. When deployed to pay visits to politicians, they add a human face to lobbying efforts around proposed legislation that affects pharma. Legislation like the Cures Act might increase spending on drug development or grease the pathway of drugs to market and with fewer regulations.

Before going to Capitol Hill, the patients and their families underwent a day of training, learning how to tell their stories. If at a loss for what to talk about, they were provided talking points on what EveryLife staffers called potential “asks.”


The group’s president, Dr. Emil Kakkis, is a drug industry executive. He said the foundation doesn’t “tell patients what to do on the Hill. They are given options.”


During one session called “Tricks of the Trade: Preparing for a Successful Meeting,” Soapbox Consulting chief executive Christopher Kush walked the audience through logistics for the next day.


The attendees were given a mobile app, which shows each advocate’s prearranged meeting list. Checking a map, Kush looked at the audience and said: “If you see a little dot where you live, you may have a new member of Congress—or a green check on your state, that means you have a new senator.”


Emanuel said he believes that patient advocacy groups should openly state their potential conflicts while participating in regulatory meetings. In addition, Emanuel said, drug and device manufacturers should annually report how much they pay patient advocacy groups just as they do with physicians and teaching hospitals.


Further Reading:

  • “PhRMA Deploys Scientists & Patients as Lobbyists on Capitol Hill”;
  • “How a #pharma Funded ‘Grassroots’ Patient Advocacy Campaign Changed FDA's Approval Process”;
  • “Pharma Lines Up Patient Groups to Fight for PDUFA Boondoggle”;
  • “The Ying Yang of Patient Advocate Groups and the Pharma Industry”;
  • “Transparency is Good in Theory, But Not in Practice”;
  • “#Pharma to Patient Advocacy Groups Questioning High Drug Prices: ‘Why Are You Doing This to Us?’";
  • “Is There No End to Mylan's Shenanigans? Paying Off Patient Groups to Lobby!”;
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83% of Patient-Advocacy Organizations Receive Substantial Financial Support from the Drug Industry But Few Disclose How Much

83% of Patient-Advocacy Organizations Receive Substantial Financial Support from the Drug Industry But Few Disclose How Much | Pharmaguy's Insights Into Drug Industry News |

This study shows that among 104 of the largest U.S.-based patient-advocacy organizations, at least 83% received financial support from drug, device, and biotechnology companies, and at least 39% have a current or former industry executive on the governing board.


Our results raise four points worth highlighting.


First, industry financial support of patient-advocacy organizations is widespread, with at least 83% of reviewed organizations receiving financial support from drug, device, and biotechnology companies. By comparison, a recent study showed that 41% of physicians across all specialties received industry payments in 2013–2014.19 Moreover, … we found that the support was often substantial, with at least 39% of the organizations that disclosed donation amounts receiving at least $1 million annually from industry.


Second, we found that ties between patient-advocacy organizations and industry are reflected in the governance structures of many organizations: at least 39% of patient-advocacy organizations have a current or former industry executive on the board, and at least 12% have a current or former industry executive in a leadership position on the board.


Third, current disclosure practices of patient-advocacy organizations are limited. Although we can conclude that industry support for such organizations is common, the full scope of this support and the severity of conflicts of interest remain difficult to determine given the disclosures of the organizations.


Fourth, we found little evidence of self-regulation of conflicts of interest among patient-advocacy organizations. Only 12% of such organizations have published policies in place for managing institutional conflicts of interest.

Pharma Guy's insight:

Further Reading:

  • “How Patient Advocates Make Money from Pharma with the Help of Agents Who Take a Cut”;
  • “Transparency is Good in Theory, But Not in Practice”;
  • “Novartis Respects the Patient Perspective and Pays for It Too! But Is It Absolutely Transparent?”;
  • “Survey: Should Pharma Hire Online ‘Patient Opinion Leaders’?”;
  • “Pharma-Patient Collaboration: Activist Survey is a ‘Wake Up Call’”;
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#Pharma to Patient Advocacy Groups Questioning High Drug Prices: "Why Are You Doing This to Us?"

#Pharma to Patient Advocacy Groups Questioning High Drug Prices: "Why Are You Doing This to Us?" | Pharmaguy's Insights Into Drug Industry News |

Public anger over the cost of drugs has burned hot for a year, coursing through social media, popping up on the presidential campaign, and erupting in a series of congressional hearings, including one last week over the rising price of the allergy treatment EpiPen.


But one set of voices has been oddly muted — the nation’s biggest patient advocacy groups. The groups wield multimillion-dollar budgets and influence on Capitol Hill, but they have been largely absent in the public debate over pricing.


To those who have closely followed the drug world, the reason is simple: Many of the groups receive millions of dollars a year in donations from companies behind the drugs used by their members. When they prod drug companies, it is generally for better — not less expensive — treatments.


But critics say that by avoiding the debate over cost, they are failing in their patient-advocacy duties..


“It is a conflict of interest, because the interests of the pharmaceutical industry, from whom they are getting support, may be different from the interests of the patients,” said Dr. Michael Carome, the director of the Health Research Group at Public Citizen, a consumer advocacy group.


Over the last year, pharmaceutical companies have increased prices on medications as varied as breakthrough hepatitis C drugs and little-known generics that have been around for decades. The higher prices have hit American pocketbooks harder than usual, as insurers have increasingly shifted costs to patients.


And for patient groups, loudly addressing the issue can be perilous, as Cyndi Zagieboylo, the chief executive of the National Multiple Sclerosis Society, recently discovered.


She said members of her group, one of the most influential patient charities, had identified cost as a priority. The average annual cost for multiple sclerosis medications is $78,000 today, nearly 400 percent higher than the $16,000 average in 2004, the group says.


But as soon as Ms. Zagieboylo started discussing a plan — a modest proposal that involved bringing together drug makers, insurers and others to find solutions — she said she encountered resistance. Other patient groups would not join her, and she said she was told by members of Congress, as well as some of the pharmaceutical companies that donate to her group, to tread carefully.


“We were warned, you know, in a number of ways, just sort of to be careful about this,” Ms. Zagieboylo said. “A couple of pharmaceutical companies mentioned, ‘Boy, we support you, why are you doing this to us?’”

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The ADHD #Pharma | Psychiatrist | Celebrity | Patient Complex

The ADHD #Pharma | Psychiatrist | Celebrity | Patient Complex | Pharmaguy's Insights Into Drug Industry News |

While other books have probed the historical roots of America’s love affair with amphetamines — notably Nicolas Rasmussen’s “On Speed,” published in 2008 — “ADHD Nation: Children, Doctors, Big Pharma, and the Making of an American Epidemic” focuses on an unholy alliance between drugmakers, academic psychiatrists, policy makers and celebrity shills like Glenn Beck that Schwarz brands the “A.D.H.D. industrial complex.” The insidious genius of this alliance, he points out, was selling the disorder rather than the drugs, in the guise of promoting A.D.H.D. “awareness.” By bankrolling studies, cultivating mutually beneficial relationships with psychopharmacologists at prestigious universities like Harvard and laundering its marketing messages through trusted agencies like the World Health Organization, the pharmaceutical industry created what Schwarz aptly terms “a self-affirming circle of science, one that quashed all dissent.”


In a narrative that unfolds with the momentum of a thriller, he depicts pediatricians’ waiting rooms snowed under with pharma-funded brochures, parents clamoring to turn their allegedly underachieving children into academic superstars and kids showered with pills whose long-term effects on the developing brain (particularly when taken in combination) are still barely understood. In one especially harrowing section of the book, Schwarz traces the Icarus-like trajectory of Richard Fee, an aspiring medical student who fakes the symptoms of A.D.H.D. to get access to drugs that will help him cope with academic pressure. When he eventually descends into amphetamine psychosis, his father tells his doctor that if he doesn’t stop furnishing his son with Adderall, he’ll die. Two weeks after burning through his supply, Fee hanged himself in a closet.


“ADHD Nation” should be required reading for those who seek to understand how a field that once aimed to ameliorate the behavioral problems of children in a broad therapeutic context abdicated its mission to the stockholders of corporations like Shire and Lilly. Schwarz is sounding an alarm for a fire that looks nowhere near abating.

Pharma Guy's insight:

Speaking of celebrities, read "Patient Testimonials aka Anecdotal Experience #Pharma Marketing"; 


Meanwhile, not only does Shire, which markets an ADHD treatment, "oversell" the product, it also has been caught marketing it illegally as it did on September 25, 2008, for a video testimonial featuring Ty Pennington posted on See here: 

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Majority of Patients’ Groups Siding With Pharma Against Medicare Part B Pricing Reforms Receive Industry Funding

Of the 147 Patients’ Groups That Co-Signed Industry Opposition Letters to Congress and CMS, at Least Three in Four Get Funding From Big Pharma

The overwhelming majority of patients’ groups opposing a Medicare Part B proposal to reduce drug expenditures got funding from the pharmaceutical industry, according to a new Public Citizen report.

The report, “Patients’ Groups and Big Pharma,” examined industry funding for 147 patients’ groups publicly opposing the Medicare Part B proposal, documenting disclosures of funding and sponsorships from the drug and medical device industry to 110 of those groups (75 percent of the total).

The patients’ groups voiced their opposition to the Medicare Part B reforms by signing either a letter to congressional leadership (organized by the Community Oncology Alliance) or a letter to the Centers for Medicare and Medicaid Services (organized by the Partnership to Improve Patient Care). An additional 241 groups, mostly associated with doctors or the pharmaceutical industry – both of which have a financial incentive for opposing the reforms – also signed letters.

Because the report’s findings are based on voluntary disclosures that patients’ groups and pharmaceutical companies provide, they likely underrepresent the proportion of patients’ groups receiving pharmaceutical industry sponsorship. Total amounts of how much the groups receive from the industry are mostly unknown.

The Medicare Part B demonstration project, which Public Citizen supports along with numerous allied consumer and health groups, aims to remove incentives for needlessly prescribing high-priced medicines when equally effective and affordable alternatives are available.

These findings come on the heels of a recent Public Citizen report revealing that members of the U.S. House of Representatives who oppose the reform received 82 percent more in campaign contributions from pharma than members who are not opposed.

“While it is certainly not the case that every patient group that takes industry money is a Big Pharma puppet, the fact that three-quarters of the patients’ groups opposing these reforms receive industry money should make policymakers skeptical of these groups’ independence,” said Rick Claypool, a Public Citizen research director and author of the report.

Pharma Guy's insight:

I think 3/4 of all patient groups receive funding from pharma - even those groups that might be in favor of Medicare pricing reform. This analysis does not take that into account. :)

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What’s You Company’s “Patient Engagement Maturity Level?”

What’s You Company’s “Patient Engagement Maturity Level?” | Pharmaguy's Insights Into Drug Industry News |

With regard to patient engagement, there is emerging support for moving away from a reactive approach, in which coordination between stakeholders, therapy, and care is limited or ad hoc, to a proactive model in which engagement tools and support bolster both patients and health care providers.


The five key needs that a comprehensive patient services suite should address are:


  1. Therapy: Connecting with patients to provide access to and support with their care. Specific therapy-related solutions include access to care, specialty pharmacy triage, distribution solutions, site of care/infusion site match, lab/test results coordination, and nurse visits.
  2. Financial: Helping patients obtain the resources they require to stay on therapy. Specific financial solutions include insurance verification, benefits investigation, claims appeals and re-coding, prior authorization, co-pay assistance, and bridge therapy programs.
  3. Clinical: Providing patients with a point of contact during trials and assisting with transitioning from clinical to commercial drugs, specifically clinical trial support and risk evaluation and mitigation strategies.
  4. Engagement: Granting patients access to programs via traditional and emerging channels that will help support their unique treatment journeys and enable better long-term treatment outcomes. Specific engagement-related solutions include enrollment and consent, case management, patient adherence programs, portals, assistance with appointments and scheduling, mobile health monitoring, telehealth, and advocacy.
  5. Education: Delivering educational insights to inform patient decision-making and behaviors. Solutions include medical information and pharmacovigilance, nursing educational support, and between-visit care.


Maturity levels across companies are highly variable; maturity in patient engagement has not been correlated to the overall maturity of the organization. In order to evaluate their current patient engagement maturity levels, pharma companies should examine their current patient engagement strategy, service offerings, and enabling technology on the following parameters: More here…

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Patient Advocacy Groups Compete for Biden's Cancer "Moonshot" Initiative Funding

When Vice President Joe Biden laid out plans for his major cancer research initiative in January, some public health advocates were alarmed. The plan to work toward a cure was ambitious, but there was virtually no mention of the importance of cancer prevention.


So in phone calls, meetings, and a public letter to Biden, the advocates delivered the vice president’s team a blunt message: Prevention had to be part of any serious effort to wipe out cancer.


By the time the website for Biden’s initiative was launched, it listed vaccines for cancer-causing viruses as a key goal — and said the initiative “seeks to accelerate progress in prevention, diagnosis, and treatment.”


It was a case study in influence, and perhaps a testament of what’s to come: a major scramble for attention and clout among cancer advocacy groups.


With the Obama administration swinging behind Biden’s “moonshot” effort, and with the National Institutes of Health looking to build on its biggest funding increase in 12 years, cancer advocacy organizations see a window of opportunity to gain additional funding and attention for their respective causes.


But if the history of cancer politics in Washington is any guide, the competition will be intense.


There are more than 75 cancer advocacy groups that try to make their case in Washington, and while they may share broad goals, scarce resources have long engendered competition among them, fueling tension that is only likely to intensify with more money at stake. Some groups — especially the ones that want to stress prevention and environmental causes of cancer — worry that they’re already getting left behind.

Pharma Guy's insight:

I wonder how much money will actually wind up being spent on "prevention" programs not related to vaccines produced by pharma.

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Walking Billboards for Patient-Centered Care

Walking Billboards for Patient-Centered Care | Pharmaguy's Insights Into Drug Industry News |

While giving a lecture at a medical conference in 2014, Karen Hein wore an unusual outfit. From the front, it looked like a simple business jacket. But at the end of the speech, Dr. Hein turned around and let the audience view the back.


There they saw a painting of Dr. Hein, dressed in a white medical coat and cast as a shepherdess, leading a herd of goats ridden by children. Holding her hand in the picture was her husband, dressed in a hospital gown, a symbol of his life with Alzheimer’s disease.


Those who get the jackets—patients, advocates, researchers, government officials, scientists—agree to wear them at meetings and conferences, generating discussion and attention. Ms. Holliday considers all the different paintings—353 so far, with fellow artists painting another 55—a “walking gallery.” What drives the project is the idea that patients should sit at the center of health care—and that medical authorities should engage them as equal partners.

Her paintings for patients are especially evocative. On a jacket for a breast cancer survivor, she painted the woman emerging, larger than life, from the earth. She holds on to an electrical cord suspended in the sky, representing the energy she takes and gives back to the community.

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#Pharma's "Patient Centricity" Pays Off: Patient Groups Mum on Drug Costs

#Pharma's "Patient Centricity" Pays Off: Patient Groups Mum on Drug Costs | Pharmaguy's Insights Into Drug Industry News |

Drug companies provide so much of the funding for major patient groups that many critics say they've stifled a key voice in the policy debate over soaring drug prices, especially over those for cancer.

The Leukemia and Lymphoma Society, for example, gets $50 million a year from drugmakers, which comes to about 16% of their funding. The National Patient Advocate Foundation receives 60% of its $2 million budget from the pharmaceutical industry, while the Colon Cancer Alliance gets 15% of its $1.2 million budget.  Several other groups get up to 20% of their revenue from drug companies.

"It is worrisome because it is a conflict of interest even if you can’t prove it changes their position," says Ezekiel Emanuel, an oncologist and professor who chairs the University of Pennsylvania's department of medical ethics and health policy. "The patient voice carries a disproportionate amount of weight."

One reason for the apparent lack of interest in drug costs is that patient groups are focused on developing drugs to cure their respective diseases. They care far less about costs because the patients  want and need the drugs, often to survive. So they join with drugmakers in pushing to have them developed without as much concern over the costs.

Drugmakers have a natural alliance with patient groups, which helps explain their alliance, says Robert Zirkelbach, a spokesman for the Pharmaceutical Research and Manufacturers of America trade group.

“Patient groups and biopharmaceutical companies share the same goal of improving patient access to innovative therapies and ensuring the continued development of new treatments and cures," Zirkelbach said in an emailed statement.

Pat Mastors, co-founder of the Patient Voice Institute, is trying to get patients more involved in health care policy, including on drug prices, but lacks the resources of those that do take drug money.

"We have to create public pressure to change the incentives ...for drugmakers to set prices that don't cripple people with debt," says Mastors, a former TV news anchor who has two family members with cancer. "It's hard if others are taking a lot of money from pharma to know where the allies are to build momentum."

Pharma Guy's insight:

Meanwhile, read "Pharma Does Not Feel the Pain of Orphan Patients"; "When drug companies fail to respond to cost concerns, patient groups feel abandoned by their pharma partners."

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Patient Activists Want to See End of DTC Advertising, or at Least Be Featured in Ads

Patient Activists Want to See End of DTC Advertising, or at Least Be Featured in Ads | Pharmaguy's Insights Into Drug Industry News |

Patients want drugmakers to stop viewing them as sales targets and profit drivers. Some want to see the end of direct-to-consumer advertising, while others wish pharmaceutical companies would use real patients and tell real stories in ads and education materials.

Those were just some of the revelations in a study conducted in May by WEGO Health. The survey is the first in a series of patient-engagement scorecards that WEGO plans to field. About 58% of the respondents identified themselves as patients and 23% as both patients and caregivers. The remaining respondents were either caregivers or healthcare professionals.

Roughly 36% of surveyed patients said they agree that pharma companies are working collaboratively with patients and patient leaders to improve patient engagement. But nearly 45% of respondents said that pharma–patient engagement is at a standstill and that company efforts have remained the same over the last year.

When asked to anonymously suggest one change to how pharmaceutical companies might engage with patients, advertising was one topic brought up repeatedly by respondents, with one opining that there should be “less sexual innuendo in ads” and that pharma companies should “lessen [the] number of commercials on television, as they create false expectations of the drug.”

Another participant suggested doing away with DTC advertising. “Stop direct-to-patient advertising!” the respondent wrote. “Laypeople have neither the education nor the clinical judgment to make medication decisions on their own. It puts physicians in a precarious position.”

A third criticism related to the structures and objectives of patient advisory boards. A patient influencer suggested that drugmakers should endeavor to develop “visible and noticeable use of non-token patient advisory boards.”

Pharma Guy's insight:

One way for pharma to engage with patients other than through DTC advertising is to provide scholarships for patients to attend medical and pharma industry conferences.

This article discusses that issue and suggests that the pharmaceutical industry, which claims to be "patient centric," can play a role by sponsoring Patients Included scholarships similar to how they sponsor physician continuing medical education programs for physicians. 

Topics (partial list):

  • No Patients? No Show!
  • Pharma Has Skin in This Game
  • The Patient Included Charter
  • Patient Lip Service Common, Inclusion Rare
  • Key Patient Advocates
  • What About "Ordinary Joe" Patients?

Download the full article (PDF file) here:

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The Patients Included Movement: My Comments on the Global Charter, re "Key Patient Advocates" & Transparency

The Patients Included Movement: My Comments on the Global Charter, re "Key Patient Advocates" & Transparency | Pharmaguy's Insights Into Drug Industry News |

"Patient centricity" is all the rage these days among pharmaceutical industry conference attendees and speakers. It is even becoming more common for actual patients to be part of the faculty/speakers and/or attendees of these conferences.

This wasn't always the case, which is why Lucien Engelen launched the "NO-SHOW Patients Act" in 2012 (read "No-Show patients on conferences : Patients Included™"). Lucien founded and is the Director of the Reshape Center at the Radboud University Medical Center located in the Netherlands. The Center is at the "convergence of patient empowerment and (exponential) technology."

Lucien said he no longer could imagine a conference about healthcare with a NO-SHOW approach of patients, by which he meant:

  • no patient IN the program, 
  • no patient ON the stage or 
  • no patient IN the audience.

Lucien announced he would boycott such conferences by declaring "I will NO-SHOW on healthcare conferences that do not add patients TO or IN their program or invite them IN the audience also I will no longer speak at NO-SHOW conferences."

The "Patients Included" logo shown above can be used free of copyright for conferences that have patients ON stage, IN the program or invited as patients to the conference. "Do not ask US if your are eligible for it," says Lucien, "the audience will be your 'judge' ;-)" BTW, you can't use the fact that "we are all patients" to qualify.

Now the "Patients Included" movement is getting more complicated. Some activists are developing a "Global Charter" that goes much further than Lucien's NO-SHOW Patients Act and lays down specific compliance guidelines.

Read more here...

Pharma Guy's insight:

Some patients are more likely to benefit from this movement than others unless the process of awarding patient scholarships is fair and transparent.

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