Patients Matter and So Does Our Voice

In a previous posting on the evils of Big Pharma, Robert Weissman suggests, “a successful conclusion to ongoing negotiations at the World Health Organization (WHO) — could yield dramatic public health benefits in the years and decades ahead.” This seems unlikely as the most important stakeholders – patients – have been left out of the process. Nowhere in IGWG’s draft strategy is the word “patient” even mentioned.

It is disturbing that NGO’s like Essential Action not only pit their efforts against patient groups, but also try to bully patients from letting their voice be heard. Far better if those that are truly committed to improving public health benefits worked to engage in constructive discussion to improve the health of patients around the world.

Patient groups play a vital role in society by providing valuable support and advocacy for vulnerable people. Through our work we are able to improve the lives of patients in many ways, including informing patients about their disease and treatment options; helping patients gain access to treatment; and providing experienced support to vulnerable patients.

Many patient advocacy organizations act to defend the rights of both patients and their caregivers who would not otherwise be represented; and raise awareness of certain diseases.  The unique personal experience and expertise we are able to offer, enables us to authoritively critique healthcare systems and assist the direction of medical progress.  The TMJ and Orofacial Pain Society of America is a not-for-profit public benefit organization, dedicated to increase awareness for a devastating and painful condition. Grounded in purpose, we strive for better access to care and will participate with national and international consumer rights coalitions for the betterment of care.

The relationship between patient groups and the pharmaceutical industry is continually under scrutiny. Well-rehearsed criticism tends to focus on the varying levels of transparency that accompany these relationships and the undue, unchecked influence the pharmaceutical industry may wield as a result of their association with us.

In this highly critical and often misinformed environment, it is essential to assert the fact that we do indeed share common goals with our funders and other health stakeholders; such as to improve the lives of patients. It is this common goal, based on mutual respect and the shared objective to positively impact on patient’s lives and better manage diseases, which underpins our relationships with supporters.

Patients, government, industry and NGO’s should all be working together to improve health outcomes. We expect that the IGWG and the WHO will recognize the importance of the patient voice and work to actively engage our participation in this important discussion.