Video: Every Case Tells a Story| Webinar: ACR/CHEST ILD Guidelines in Practice

An official publication of the ACR and the ARP serving rheumatologists and rheumatology professionals

  • Conditions
    • Axial Spondyloarthritis
    • Gout and Crystalline Arthritis
    • Myositis
    • Osteoarthritis and Bone Disorders
    • Pain Syndromes
    • Pediatric Conditions
    • Psoriatic Arthritis
    • Rheumatoid Arthritis
    • Sjögren’s Disease
    • Systemic Lupus Erythematosus
    • Systemic Sclerosis
    • Vasculitis
    • Other Rheumatic Conditions
  • FocusRheum
    • ANCA-Associated Vasculitis
    • Axial Spondyloarthritis
    • Gout
    • Psoriatic Arthritis
    • Rheumatoid Arthritis
    • Systemic Lupus Erythematosus
  • Guidance
    • Clinical Criteria/Guidelines
    • Ethics
    • Legal Updates
    • Legislation & Advocacy
    • Meeting Reports
      • ACR Convergence
      • Other ACR meetings
      • EULAR/Other
    • Research Rheum
  • Drug Updates
    • Analgesics
    • Biologics/DMARDs
  • Practice Support
    • Billing/Coding
    • EMRs
    • Facility
    • Insurance
    • QA/QI
    • Technology
    • Workforce
  • Opinion
    • Patient Perspective
    • Profiles
    • Rheuminations
      • Video
    • Speak Out Rheum
  • Career
    • ACR ExamRheum
    • Awards
    • Career Development
  • ACR
    • ACR Home
    • ACR Convergence
    • ACR Guidelines
    • Journals
      • ACR Open Rheumatology
      • Arthritis & Rheumatology
      • Arthritis Care & Research
    • From the College
    • Events/CME
    • President’s Perspective
  • Search

Industry Ties Common among Nonprofit Patient Advocacy Groups

Gene Emery  |  March 2, 2017

(Reuters Health)—An examination of more than 100 of the largest U.S. nonprofit organizations created to improve health and fight disease has found that more than 8 in 10 get financial support from companies involved in the drug, biotechnology and medical device industry.

In addition, over a third have at least one industry official on their governing board and, in 12% of the 104 organizations analyzed, an industry official was listed as leading the governing board.

ad goes here:advert-1
ADVERTISEMENT
SCROLL TO CONTINUE

The tally raises concerns about potential conflicts of interest among groups that claim to be looking out for the best interest of patients but whose advocacy may be influenced by industries that have a financial interest in certain treatments.

“Concerns have been raised that industry-supported patient-advocacy organizations have spoken out for access to drugs with questionable therapeutic benefit and remained silent on policy proposals, such as drug-pricing reforms, that might benefit their constituents,” the research team from the University of Pennsylvania in Philadelphia writes in the New England Journal of Medicine, online March 1.

ad goes here:advert-2
ADVERTISEMENT
SCROLL TO CONTINUE

The influence might be even more extensive than the numbers suggest, say the authors, led by Matthew McCoy, a postdoctoral fellow in the university’s department of medical ethics and health policy.

Some of the 104 groups, all with annual revenues of more than $7.5 million, don’t publish detailed information on their sources of revenue or members of their governing board.

What was available showed that at least 39% of the health-oriented public advocacy groups each got a least $1 million a year from industry.

The websites of only 12% of the organizations posted conflict-of-interest policies for managing such potential problems.

The findings don’t necessarily mean that the organizations have been compromised, McCoy told Reuters Health.

“I don’t want to impugn them,” he said. “But I think we have a right to know more. If an organization receives more than 50% of its support from a drug or device company, I might take what they say with a grain of salt.”

The groups ranged from the New York-based Child Mind Institute, which was the only organization of the 104 that explicitly says it does not accept industry support, to the National Hemophilia Foundation, whose 2014 annual report indicates that it received 50% to 83% of its annual revenue from drug or device companies. (Like many organizations, the foundation only reported donations in a range of dollars.)

The foundation responded to Reuters Health with a statement saying that industry officials are prohibited from serving on its board and the organization “has never and will never advocate for any single treatment or group of treatments before legislators, or public and private payers. Instead, NHF advocates for all FDA-approved therapies, and will continue to fight to ensure that individuals with bleeding disorders have access to the therapies they need.”

Page: 1 2 | Single Page
Share: 

Filed under:Practice SupportProfessional Topics Tagged with:American Diabetes Associationbiotechnology and medical device industryChild Mind InstituteConflict of interestdrugindustry-supported patient-advocacy organizationsNational Hemophilia FoundationNational Kidney Foundationthe Arthritis Foundationthe Epilepsy FoundationU.S. nonprofit organizations

Related Articles

    What You See Is What You Get: Transparency in Industry relationships

    October 1, 2010

    Transparency in industry relationships

    Doctors Often Uncomfortable Soliciting Donations for Patients

    October 3, 2015

    NEW YORK (Reuters Health)—Many doctors are asked to seek donations from grateful patients after successful cancer treatment, but most physicians are uncomfortable with this idea and feel a conflict of interest, according to a new study. “There are ethical ways of seeking donations from patients who have the means and want to give back,” Dr….

    A View of Industry from the Inside

    April 13, 2011

    Rheumatologists with pharmaceutical careers discuss the path that led them to industry and the work they do

    Physician–Industry Relationships

    July 1, 2009

    The ACR’s strict ethical policy guides relationships with pharmaceutical and medical device manufacturers

  • About Us
  • Meet the Editors
  • Issue Archives
  • Contribute
  • Advertise
  • Contact Us
  • Copyright © 2025 by John Wiley & Sons, Inc. All rights reserved, including rights for text and data mining and training of artificial technologies or similar technologies. ISSN 1931-3268 (print). ISSN 1931-3209 (online).
  • DEI Statement
  • Privacy Policy
  • Terms of Use
  • Cookie Preferences