Study: Cancer Patient Advocates Like Pharma Money

Quiet About High Price of Drugs

Nick Mulcahy

November 16, 2016

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.

 
Money buys silence. Karuna Jaggar
 

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.

 
He who pays the piper calls the tune. Dr Vinay Prasad
 

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 Breastcancer.org Yes 16
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 Caring Ambassadors Yes 14
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 Pancreatica.org NR  
Pancreatic The Lustgarten Foundation Yes 1
Prostate Malecare Yes 6
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 Alliance Yes 2
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

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