High-profile, well-established cancer patient advocacy organizations (PAOs) have a median of 7 biopharmaceutical funders, according to a new first-of-its-kind analysis of 68 such organizations.
Only one of the POAs, the Inflammatory Breast Cancer Research Foundation, explicitly reported that it does not accept money from drug companies.
The groups with the largest number of sponsors were the Pancreatic Cancer Action Network (19), Lung Cancer Alliance (17), Melanoma Research Alliance (16), and Breastcancer.org (16). (See the full list below.)
Overall, there is a "sizable alliance" going on between these two entities, say the authors, Matthew Abola, from Case Western Reserve University in Cleveland, Ohio, and Vinay Prasad, MD, an oncologist at the Knight Cancer Center at the Oregon Health Science University, Portland.
Their new study was published in the November issue of the Mayo Clinic Proceedings.
The authors reviewed the websites of the various PAOs and recorded all reported biopharma sponsors.
They found extensive ties, which is compromising, suggested Dr Prasad.
"The one issue that patient advocates are most silent about is the crushing cost of cancer drugs," he told Medscape Medical News. "Advocating for drug approval means nothing if patients cannot afford the medication."
"Money buys silence [about high drug prices]," said Karuna Jaggar, executive director of Breast Cancer Action, a San Francisco–based PAO, about the effect of biopharma funding on PAOs' attitudes about drug prices. Breast Cancer Action does not accept biopharma funding.
Breast Cancer Action was not included in the new study because the authors based their analysis on the list of 68 PAOs on the patient advocacy webpage> of the influential National Comprehensive Cancer Network. "The [NCCN] webpage is advertised as a starting place for patients with cancer to find a supporting organization," explain the study authors about their study sample.
Jaggar says that Breast Cancer Action's absence of pharma ties allows the organization to speak out. "Our independence means we can say in no uncertain terms that the price of cancer drugs in this country is unconscionably high," she told Medscape Medical News.
Jaggar also said her group's policy is rare across all of medicine. "Breast Cancer Action is one of very few patient advocacy groups in the U.S. that refuse funding from pharmaceutical and biotech companies," she observed.
Dr Prasad believes that PAOs should disclose both their list of sponsors and the dollar amounts they receive. "We need to pass in future health legislation a provision requiring all health-related 501(c)(3) nonprofit groups, and all patient advocacy organizations, to disclose all forms of revenue, akin to the sunshine act for doctors," he said.
In the new analysis, 51 of the 68 PAOs (75.0%) disclosed their sponsors. Sixteen PAOs (23.5%) did not report whether they had biopharmaceutical sponsorship. The fact that nearly 25% of the PAOs were lacking sponsor disclosures is problematic, say the authors.
"This study may underestimate sponsorship because 23.5% of the PAOs neither acknowledged funding nor a policy precluding it," they write.
PAOs are important, in part, because they "have influence on the [federal] regulation of cancer drugs, speaking on behalf of patients with cancer," say the authors, referring to FDA committee hearings as well as congressional inquiries.
Dr Prasad said that drug companies are influencing the tenor of such testimonies.
"He who pays the piper calls the tune, and patient advocacy organizations are singing a tune of 'approve every toxic, marginal drug, and then we will be very quiet about how much is charged.' I worry that this tune is not in patient's best interests," he said.
Dr Prasad added: "The most ardent, passionate patient advocacy organizations will demand clear demonstration of efficacy for new cancer drugs."
Table. PAOs by Cancer Subtypes (Recommended by NCCN)
|Cancer Tumor Type||Organization||Biopharma Sponsorship||Pharmaceutical Sponsors (n)|
|Bladder||Bladder Cancer Advocacy Network (BCAN)||Yes (2014)||7|
|Bladder||Urology Care Foundation||Yes||15|
|Brain||American Brain Tumor Association||Yes||1|
|Brain||National Brain Tumor Society||NR|
|Breast||After Breast Cancer Diagnosis (ABCD)||NR|
|Breast||Breast Cancer Research Foundation (BCRF)||Yes||4|
|Breast||Facing Our Risk of Cancer Empowered (FORCE)||Yes (2014)||13|
|Breast||Inflammatory Breast Cancer Research Foundation||No|
|Breast||Living Beyond Breast Cancer (LBBC)||Yes (2014)||15|
|Breast||Metastatic Breast Cancer Network (MBCN)||NR|
|Breast||National Breast Cancer Coalition||NR|
|Breast||Sisters Network Inc||Yes (2011)||5|
|Breast||Susan G. Komen Breast Cancer Foundation||Yes||5|
|Breast||Young Survival Coalition (YSC)||Yes||4|
|Carcinoid cancer/neuroendocrine tumors||Carcinoid Cancer Foundation Inc||Yes||2|
|Colon||Colon Cancer Alliance (CCA)||Yes||4|
|Colon||Fight Colorectal Cancer||Yes (2014)||15|
|Esophageal||Esophageal Cancer Awareness Association (ECAA)||NR|
|Gynecologic||Foundation for Women's Cancer||Yes (2013)||9|
|Gynecologic||National Cervical Cancer Coalition||NR|
|Gynecologic||National Ovarian Cancer Coalition||Yes||2|
|Gynecologic||Ovarian Cancer National Alliance||Yes||10|
|Gynecologic||Patient Access Network (PAN) Foundation||NR|
|Head and neck||Head and Neck Cancer Alliance (HNCA)||Yes||3|
|Head and neck||Oral Cancer Foundation||Yes||7|
|Head and neck||Support for People with Oral and Head and Neck Cancer (SPOHNC)||Yes||4|
|Kidney||Kidney Cancer Association (KCA)||Yes||8|
|Leukemia and lymphoma||Leukemia and Lymphoma Society||Yes||13|
|Leukemia and lymphoma||Leukemia Research Foundation||Yes||7|
|Leukemia and lymphoma||Lymphoma Research Foundation||Yes||6|
|Liver||American Liver Foundation||Yes||2|
|Lung||American Lung Association (ALA)||Yes||7|
|Lung||Bonnie J. Addario Lung Cancer Foundation||Yes (2014)||15|
|Lung||Dusty Joy Foundation||NR|
|Lung||Free ME from Lung Cancer||Yes||3|
|Lung||Free to Breathe||Yes (2014)||15|
|Lung||Lung Cancer Alliance||Yes (2011)||17|
|Lung||Lung Cancer Circle of Hope||NR|
|Lung||Lung Cancer Initiative of NC||Yes||1|
|Lung||Lung Cancer Research Council Inc||NR|
|Melanoma/skin||Aim at Melanoma||Yes||12|
|Melanoma/skin||American Academy of Dermatology||Yes||1|
|Melanoma/skin||Melanoma International Foundation (MIF)||Yes||5|
|Melanoma/skin||Melanoma Research Alliance||Yes||16|
|Melanoma/skin||Melanoma Research Foundation (MRF)||Yes||7|
|Melanoma/skin||Skin Cancer Foundation||Yes||9|
|Myelodysplastic syndromes||The MDS Foundation||Yes||8|
|Myeloma||International Myeloma Foundation (IMF)||Yes||7|
|Myeloma||Multiple Myeloma Research Foundation (MMRF)||Yes||4|
|Pancreatic||Pancreatic Cancer Action Network (PanCAN)||Yes (2014)||19|
|Pancreatic||The Lustgarten Foundation||Yes||1|
|Prostate||National Alliance of State Prostate Cancer Coalitions (NASPCC)||Yes||6|
|Prostate||Prostate Cancer Foundation||Yes (2014)||10|
|Prostate||Prostate Cancer International||NR|
|Prostate||Prostate Conditions Education Council||Yes||7|
|Prostate||The California Prostate Cancer Coalition||NR|
|Prostate||The Prostate Health Education Network Inc||Yes||9|
|Prostate||US-TOO! International Inc||Yes||13|
|Prostate||ZERO - The End of Prostate Cancer||Yes (2014)||14|
|Sarcoma/GIST||GIST Support International (GSI)||NR|
|Sarcoma/GIST||Sarcoma Foundation of America||NR|
|Thyroid||American Thyroid Association||NR|
|Thyroid||Thyroid Cancer Survivors Association Inc||Yes (2012)||7|
GIST = gastrointestinal stromal tumor; NR = not reported.
Dr Prasad and Ms Jaggar have disclosed no relevant financial relationships.
Mayo Clin Proc. 2016;91:1668-1670. Full text
Follow Medscape senior journalist Nick Mulcahy on Twitter: @MulcahyNick
Follow Medscape Oncology on Twitter: @MedscapeOnc
Medscape Medical News © 2016 WebMD, LLC
Send comments and news tips to email@example.com.
Cite this: Study: Cancer Patient Advocates Like Pharma Money - Medscape - Nov 16, 2016.