A World Health Organization group that meets in Geneva today to debate ways to improve access to drugs in the developing world and promoting R&D for new meds is, of course, going to attract input from all sides, including industry, academics, patients groups and non-govermental organizations, or NGOs.

However, many individuals who signed a “Patient Declaration” have undisclosed ties to pharma, as does the patient advocacy group that is circulating the petition, according to Essential Action, a non-profit project that focuses on public health and corporate accountability, and is funded by the Open Society Institute and the Ford Foundation.

In a report issued today, the advocacy group notes that six of seven advisory board members at Patients and Patents have connections to drugmakers, as do 61 of the 110 people who signed its declaration, according to an advance copy obtained by Essential Action. (Here is the list). The P&P group, by the way, share the view of the patent system espoused by pharma.

Patients and Patents describes itself as patient-driven and patient-focused resource whose goal is to inform and engage patient groups, advocates and other stakeholders from around the world on issues surrounding medical innovation and access to treatments. But the group, whose policy is set by its advisory board, doesn’t contain the disclosures for board members that Essential Action notes in its report.

“There clearly is a crucial role for patient and public health oorganizations in the WHO debates over R&D for the developing world,” Essential Action director Robert Weissman says in a statement. “But groups that are dependent on Big Pharma, or tied to the industry, should not present themselves as independent voices in the debate.”

Interestingly, the Patients and Patents web site doesn’t seem to offer any contact info, but we have written an advisory board member seeking comment and will reach out to others in hopes of obtaining comment. UPDATE: At 1 pm, we received a note from Kristina Lybecker, an economics professor at Colorado College, who is a P&P advisory board member. This is what she has to say…

“It is worth noting that patient groups are guided by, and advocate for, what is in the best interest of the patient. As such, they aren’t hesitant to criticize the pharmaceutical industry. In addition, none of
the Patients and Patents board members or patient groups have attempted to hide or discount their ties to the pharmaceutical industry. All of the information contained in the Essential Action report is readily available in the public domain and is easily accessed.

“That said, it is unreasonable to discount the perspectives of individuals or patient groups simply because they have partnered with the pharmaceutical industry. This is clearly the subtext of the Essential Action report since they are unable to counter the Patient Declaration’s plea for patient involvement in public health policymaking.

“Most important to the current debate is the need for patient voices to be heard. It is essential that the WHO’s IGWG consult with the patient groups that are closest to existing needs, most familiar with the current situation, and best positioned to define future goals and policies. This debate is about both access and innovation. Patient groups and the pharmaceutical industry both seek new treatments and cures. Those who advocate for innovation and the incentives for continued research should not be discounted or discredited.”

Our thought: We agree that all voices should be heard and understand the concern, on both sides, about pretexts for discussion. However, we disagree with one point - that a failure to disclose financial ties is acceptable because the info is somehow available in the public domain and is, presumably, accessed easily. P&P should take this step itself. Other than Lybecker, the disclosure is lacking.

In an era where full disclosure is increasingly requested, if not required, of a growing number of professionals and advocates immersed in issues concerning public health and the pharmaceutical industry, P&P should, at the least, disclose the ties between its advisory board members and drugmakers, and be willing to provide the same info about those individuals who were solicited to sign its declaration. By placing this info on the table, a more meaningful and productive debate can occur.