Patient advocacy groups and pharma money

You may have seen articles recently (here and here are two examples) on the issue of patient advocacy organizations or physicians taking funds from the pharmaceutical industry. We at MPNRF have been thinking a lot about this for years. In 2011 we adopted and published a policy on how MPNRF would maintain independence and neutrality in light of accepting contributions from sources that include pharmaceutical and smaller biotech companies. These funds come in the form of support for:

  • Event sponsorship
  • Outreach and education generally about the diseases
  • Industry Advisory Board, which allows for industry scientific representation at our annual Roundtable
  • Unrestricted funds (which we use for research)

A key principle is that we make our programmatic decisions entirely based on what we feel is the unmet needs of patients, guided both by their voices and by our scientific advisers including our Scientific Advisory Board (you can read about them here). The bottom line is that, without support from a wide variety of sources, including industry, we simply would not be able to fund the research we do. And what we fund is the tip of the iceberg. There is so much more to do, and we feel it is in the best interests of all MPN stakeholders, especially patients and caregivers, to use all available resources to support the research that we at the Foundation independently control and direct.
We do everything we can to be transparent with our funding, and we take great pride in the grants we’ve made, which have represented the kinds of high risk/ high reward and basic science research that would not otherwise be funded by the government and other sources. These grants lay the groundwork for the discoveries we need to see so people with ET, PV & MF live longer, healthier lives.

That being said, what do you think? Do you question your doctor’s advice if they have accepted fees from industry? Are you concerned that the vital MPN research isn’t being funded due to influence of industry? We want to know. If you would like to share your thoughts with us about patient advocacy groups and pharmaceutical company money please send me an email at mwoehrle@mpnrf.org

Author: Michelle Woehrle

Michelle Woehrle joined the MPN Research Foundation in 2007 after being inspired by their mission to fund research that will improve the lives of people living with the rare blood cancers PV, ET and MF. In 2015 she was promoted to Executive Director. She has assisted with the expansion of the grants program, grassroots initiatives to connect with more patients internationally and optimize operations for the Foundation.

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