Research scientists and physicians – including scientific thought leaders from university centers, pharmaceutical and biotechnology industries, the National Institutes of Health, U.S. Food and Drug Administration, and other government agencies – addressed two important gaps impeding approval of new treatments for the autoimmune disease lupus during the Lupus Foundation of America’s (LFA) 2nd International Flare Conference June 5 and 6 in suburban Washington, DC. These experts discussed modifications to tools used to monitor disease progression and how lupus patients respond to treatment. They also worked to develop a consensus definition of a lupus flare, which is an increase in disease activity.
It has been difficult to define a lupus flare because the disease manifests itself in diverse ways in different people, affects multiple organ systems, and can increase and decrease in severity from one day to another. Accurately and consistently measuring a flare is crucial to monitoring progression of the disease in patients and to evaluating the effectiveness of treatment over time.
“This effort is part of the LFA’s strategy aimed at bringing down barriers that have obstructed progress on research and to advance the science of lupus,” said Sandra Raymond, LFA President & CEO. “The fact that no new drug therapies have been approved for lupus in more than four decades underscores the need to address issues and answer questions that have impeded the successful outcome of clinical trials of new, safe and effective therapies for the disease.”
Without new approved drugs specifically for lupus, physicians must rely on therapies borrowed from other diseases. Many are highly toxic, causing side effects that can be worse than the primary disease. The LFA is working to bridge gaps in lupus research to stimulate additional public and private investment in the development and approval of new lupus treatments.
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2 comments:
"no new drug therapies have been approved for lupus in more than four decades"
That's amazing to read. Maybe my experience was different, but as a disability examiner for social security I don't recall seeing too many lupus approvals. I asked my spouse (a former examiner as well and now a social security field office claims rep) and her recollection of lupus cases was similar. The exacerbation-remission aspect seemed problematic for case development.
As everyone knows, lupus affects each patient differently. My daughter has been hospitalized every other month for the past 3 years relying on the same methods of therapies and medications from 40 years ago. It's a shame that any disease research to find a cure has to fall victim to red tape due to "gaps". She has not been able to work or attend school due to the severity of her battle with lupus.
I am anxious, as I'm sure others are, to see WHEN new therapies and medications will emerge after bridging the "gaps". We hope that it won't be for another 40 years!For those of you who have any say so at these meetings/conferences, please don't let another day go by without working on this issue. My daughter and others are depending on you to make the right decisions and to take the right paths so they can lead healthier, more productive lives. Thank you! :)
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