Why is Lupus Europe part of the EFPIA Patient Think Tank? (Guest blog)

There is a statistic we use in lupus: there has only been one new medicine approved for lupus treatment in the last 50 years.  But it’s not because the need isn’t there: lupus is just a very complex disease with many different faces, and so far, has eluded serious treatment success.  Given that, one of our three strategic goals is to ensure that people with lupus participate in and benefit from lupus research. As a key step towards fulfilling this strategic goal, Lupus Europe has over the past 10 years formalised and increased its work with individual pharmaceutical companies.

Because lupus is such a complex and often misunderstood disease, Lupus Europe's role is to be a mouthpiece for lupus patients in the scientific community; and provides posters and presentations for key scientific lupus events. Being part of the EFPIA Patient Think Tank (PTT) is another path towards getting our message to the people who need to hear it. 

Lupus Europe feels that its messages are not only lupus-specific but can be relevant for many patient communities. By taking part in the in the Patient Think Tank with the other umbrella patient organisations, Lupus Europe adds its voice to the patient choir. There is strength in numbers, and we can work together on the topics that are common to all disease areas. An example of a lupus-specific issue that our community has had to deal with during COVID is the shortage of hydroxychloroquine, the most prevalent drug used by lupus patients to avoid flares. But availability of vital medication during a pandemic is a critical supply chain issue that will have to be examined by all, for all.

As a member of the PTT, we can give our lupus patient perspective to pharmaceutical projects, early on, and hopefully influence and direct R&D to meet real patient needs. As the end consumers of the pharmaceutical products, patients’ input as to how their products turn out should be taken into consideration early on. But within the EFPIA PTT, we reach not only those pharmaceutical companies that may be actively working on lupus, but all EFPIA PTT members, which underlines our principle that the best results come out of collaboration between patients, the pharmaceutical industry, and physicians. The EFPIA PTT is just one forum where we’ll continue to communicate our messages and needs until the day we no longer need to.

Anne Charlet

Anne Charlet is Vice Chair of Lupus Europe.
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