Wednesday, June 10, 2015

Information Clarification

Recently, some rumors were brought to our attention and we would like to take this opportunity to clear up a few things. Rumors tend to take on a life of their own on the internet.

Unfortunately, just like any other organization, we are not immune to smear campaigns or libelous statements about us.

There have been assumptions made about our funding. We are subject to Federal regulation and we are accountable to the IRS. At QVF, we are all volunteers and we receive no salary or compensation. That will not change. In fact, it is written in our Bylaws, which must be filed with Federal agencies. Donations go to advocacy, educating doctors, and research. Our Treasurer Christina Manthos-Sorrell keeps meticulous accounting of what comes in and what goes out. We must be transparent to the IRS in order to keep our 501(c)(3) status and we take that responsibility very seriously. We must file all policies, mission statements, budgets, paperwork, and receipts with the IRS in addition to state and Federal agencies. Further, everything that comes from the foundation are first reviewed by our pro bono attorneys.

At QVF, we believe in recognizing those who help us raise awareness and educate the public. The plaques that we give to individuals are paid for by the generosity of two volunteers who contributed their own money. We in the fluoroquinolone community have had to fight very hard for any kind of awareness and we feel it is a nice gesture to recognize individuals who help us spread the word.

In terms of research and data, we cannot always publicly discuss that due to confidentiality and to protect the integrity of the project. While some research projects are public, some are not at the request of the researchers and we respect their decision. We also do not corner the market on research. Others in the fluoroquinolone community are working hard on research and those efforts are very much appreciated and they deserve the full support of the fluoroquinolone community.

We conduct ourselves with professionalism and integrity and we do not diminish or dismiss the good work that others are doing. Sadly, that is not always reciprocated. All advocacy is a step in the right direction, whether it is our project or not. The community has made great strides in awareness, education, and research despite overwhelming odds and we could not be more proud of everyone who is making a difference.

Admittedly, QVF has not been as active lately as previous years. Our volunteer staff have been plagued with circumstances beyond our control such as deaths in our families and serious illnesses. Despite that, we are committed to the community and we will continue to advocate for victims.

In March, a QVF volunteer and a member of the FQ community testified at the FDA. We were transparent about the fact that the American Association for Justice (AAJ) reimbursed them for travel expenses. However, they were not compensated in any way for testifying. If you require confirmation about that, we encourage you to speak to the AAJ directly at 1-800-424-2725 FREE. These individuals were asked to testify because generic medications, including fluoroquinolones, cause as much harm as brand name medications. If the Pliva v Mensing Supreme Court decision is overturned, those who were harmed by a generic medication can hold the pharmaceutical industry accountable (barring statute of limitations issues) and the generic drug makers would be required to keep safety information current. Patient safety is of paramount importance. The FDA is expected to make a decision on the proposed rule in September. We will keep you updated.

Recently, members of the fluoroquinolone community met with the FDA specifically addressing fluoroquinolones. QVF is not involved in that project but those members have our full support and we are grateful for all their hard work. We look forward to hearing the outcome.

We encourage anyone who has questions or concerns to come to us to ask. We apologize for any upset caused by rumors and speculation.

 Quinolone Vigilance Foundation

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