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Industry Funding of Cancer Patient Advocacy Organizations

      To the Editor:
      Cancer patient advocacy organizations (PAOs) often demand faster drug approval and easier access to cancer medications with uncertain benefits and harms.

      Leonard K. Seeking the right to try. US News & World Report website. http://www.usnews.com/news/articles/2014/11/18/right-to-try-laws-allowing-patients-to-try-experimental-drugs-bypass-fda. Published November 18, 2014. Accessed September 27, 2016.

      Previous research has found that a sizable percentage of PAOs across all disease types receive funding from the biopharmaceutical industry
      • Ball D.E.
      • Tisocki K.
      • Herxheimer A.
      Advertising and disclosure of funding on patient organisation websites: a cross-sectional survey.

      Marshall J, Aldhous P. Patient groups swallowing the best advice? New Scientist. 2006; 28:19–22.

      ; as such, the independence of such groups has been questioned.
      • Mintzes B.
      Should patient groups accept money from drug companies? no.
      To our knowledge, however, there has been no research specifically focused on the funding of cancer PAOs. These groups have influence on the regulation of cancer drugs, speaking on behalf of patients with cancer. The PAOs have supported recent legislation, including the 21st Century Cures bill and so-called Right to Try laws. For this reason, we sought to characterize declared sources of funding for cancer PAOs.

      Methods

      On December 19, 2015, the National Comprehensive Cancer Network's (NCCN's) patient advocacy webpage (http://www.nccn.org/patients/advocacy/default.aspx) was visited. We selected the NCCN-recommended PAOs because the NCCN is an influential cancer organization, and the website is advertised as a starting place for patients with cancer to find a supporting organization. We extracted all PAOs for a specific tumor type. Organizations listed in multiple tumor types were recorded once.
      One of the authors (M.V.A.) identified each organization's website. All reported pharmaceutical company sponsors were recorded. If available, any statement addressing the organization's policy regarding pharmaceutical sponsorship was also noted (eg, an organization explicitly saying that it does not accept money from pharmaceutical companies). For organizations that received funds from pharmaceutical companies, the number of companies that provided funds was recorded. Descriptive statistics are provided. This study was conducted from December 19, 2015, through July 19, 2016.

      Results

      We identified 68 unique PAOs for specific cancer subtypes recommended by the NCCN (Table). Fifty-one of the 68 PAOs (75.0%) disclosed a median of 7 biopharmaceutical sponsors. Sixteen PAOs (23.5%) did not report whether they had biopharmaceutical sponsorship. One PAO (1.5%) specifically reported that it does not accept money from the biopharmaceutical industry.
      TablePatient Advocacy Organizations for Specific Cancer Subtypes Recommended by the National Comprehensive Cancer Center
      Cancer tumor typeOrganizationBiopharmaceutical sponsorship (year)Pharmaceutical sponsors (No.)
      BladderBladder Cancer Advocacy NetworkYes (2014)7
      BladderUrology Care FoundationYes15
      BrainAmerican Brain Tumor AssociationYes1
      BrainNational Brain Tumor SocietyNot reported
      BreastAfter Breast Cancer DiagnosisNot reported
      BreastBreast Cancer Research FoundationYes4
      BreastBreastcancer.orgYes16
      BreastFacing Our Risk of Cancer EmpoweredYes (2014)13
      BreastInflammatory Breast Cancer Research FoundationNo
      BreastLiving Beyond Breast CancerYes (2014)15
      BreastMetastatic Breast Cancer NetworkNot reported
      BreastNational Breast Cancer CoalitionNot reported
      BreastSisters Network IncYes (2011)5
      BreastSusan G. Komen Breast Cancer FoundationYes5
      BreastYoung Survival CoalitionYes4
      Carcinoid cancer/neuroendocrine tumorsCarcinoid Cancer Foundation IncYes2
      ColonColon Cancer AllianceYes4
      ColonFight Colorectal CancerYes (2014)15
      EsophagealEsophageal Cancer Awareness AssociationNot reported
      GynecologicFoundation for Women's CancerYes (2013)9
      GynecologicNational Cervical Cancer CoalitionNot reported
      GynecologicNational Ovarian Cancer CoalitionYes2
      GynecologicOvarian Cancer National AllianceYes10
      GynecologicPatient Access Network FoundationNot reported
      Head and neckHead and Neck Cancer AllianceYes3
      Head and neckOral Cancer FoundationYes7
      Head and neckSupport for People With Oral and Head and Neck CancerYes4
      KidneyKidney Cancer AssociationYes8
      Leukemia and lymphomaLeukemia and Lymphoma SocietyYes13
      Leukemia and lymphomaLeukemia Research FoundationYes7
      Leukemia and lymphomaLymphoma Research FoundationYes6
      LiverAmerican Liver FoundationYes2
      LungAmerican Lung AssociationYes7
      LungBonnie J. Addario Lung Cancer FoundationYes (2014)15
      LungCaring AmbassadorsYes14
      LungDusty Joy FoundationNot reported
      LungFree ME From Lung CancerYes3
      LungFree to BreatheYes (2014)15
      LungLung Cancer AllianceYes (2011)17
      LungLung Cancer Circle of HopeNot reported
      LungLung Cancer Initiative of NCYes1
      LungLung Cancer Research Council IncNot reported
      Melanoma/skinAim at MelanomaYes12
      Melanoma/skinAmerican Academy of DermatologyYes1
      Melanoma/skinMelanoma International FoundationYes5
      Melanoma/skinMelanoma Research AllianceYes16
      Melanoma/skinMelanoma Research FoundationYes7
      Melanoma/skinSkin Cancer FoundationYes9
      Myelodysplastic syndromesMDS FoundationYes8
      MyelomaInternational Myeloma FoundationYes7
      MyelomaMultiple Myeloma Research FoundationYes4
      PancreaticPancreatic Cancer Action NetworkYes (2014)19
      PancreaticPancreatica.orgNot reported
      PancreaticLustgarten FoundationYes1
      ProstateMalecareYes6
      ProstateNational Alliance of State Prostate Cancer CoalitionsYes6
      ProstateProstate Cancer FoundationYes (2014)10
      ProstateProstate Cancer InternationalNot reported
      ProstateProstate Conditions Education CouncilYes7
      ProstateCalifornia Prostate Cancer CoalitionNot reported
      ProstateProstate Health Education Network IncYes9
      ProstateUs TOO International IncYes13
      ProstateZERO - The End of Prostate CancerYes (2014)14
      Sarcoma/GISTGIST Support InternationalNot reported
      Sarcoma/GISTSarcoma AllianceYes2
      Sarcoma/GISTSarcoma Foundation of AmericaNot reported
      ThyroidAmerican Thyroid AssociationNot reported
      ThyroidThyroid Cancer Survivors Association IncYes (2012)7
      The number of disclosed biopharmaceutical sponsors ranged from 1 to 19 for the 51 organizations that accepted biopharmaceutical money. If a donation was noted as occurring during a specific year, we recorded that year in the Table.

      Conclusion

      The present study found that most cancer PAOs listed by the NCCN receive funding from the biopharmaceutical industry. Other researchers have been critical of such arrangements because they may jeopardize the independence of these groups.
      • Mintzes B.
      Should patient groups accept money from drug companies? no.
      This study is limited in that although the search is a systematic sample of PAOs, it is not a comprehensive analysis of all cancer PAOs. We encourage other investigators to study this issue in other data sets. Moreover, this study may underestimate sponsorship because 23.5% of the PAOs (n=16) neither acknowledged funding nor a policy precluding it.
      Whether the rate of biopharmaceutical industry sponsorship we noted is appropriate is outside the scope of this article. The Pharmaceutical Research and Manufacturers of America have argued that “[d]rugmakers have a natural alliance with patient groups.”

      O'Donnell J. Patient groups funded by drugmakers are largely mum on high drug prices. USA Today website. http://www.usatoday.com/story/news/nation/2016/01/21/patient-groups-drug-makers-high-drug-prices/79001722. Published January 11, 2016. Accessed September 27, 2016.

      The present investigation merely shows that the rate of this alliance is sizable.

      References

      1. Leonard K. Seeking the right to try. US News & World Report website. http://www.usnews.com/news/articles/2014/11/18/right-to-try-laws-allowing-patients-to-try-experimental-drugs-bypass-fda. Published November 18, 2014. Accessed September 27, 2016.

        • Ball D.E.
        • Tisocki K.
        • Herxheimer A.
        Advertising and disclosure of funding on patient organisation websites: a cross-sectional survey.
        BMC Public Health. 2006; 6: 201
      2. Marshall J, Aldhous P. Patient groups swallowing the best advice? New Scientist. 2006; 28:19–22.

        • Mintzes B.
        Should patient groups accept money from drug companies? no.
        BMJ. 2007; 334: 935
      3. O'Donnell J. Patient groups funded by drugmakers are largely mum on high drug prices. USA Today website. http://www.usatoday.com/story/news/nation/2016/01/21/patient-groups-drug-makers-high-drug-prices/79001722. Published January 11, 2016. Accessed September 27, 2016.