Saturday September 5, 2015 – Hofburg Congress Centre – WORLD LUPUS SUMMIT
Kirsi Myllys, Treasurer of LUPUS EUROPE and Convention manager, welcomes all attendants to the 26th LUPUS EUROPE convention and the 1st World Lupus Summit for patient leaders, and welcomes Sandra Raymond from LFA.
Introduction, by Sandra Raymond (USA):
Sandra introduced the session by acknowledging the many challenges we face living with lupus. Why do we not know the causes of lupus? Why do we not have the medications we need? The drugs development process is not suited to lupus’ many facetted diseases. To resolve that, we need to work strongly with the industry, but also at national institutes for health that do independent research on diseases. In the US, the arthritis institute deals with 99 diseases, but is short of money compared to other disease areas. The definition of lupus is very important: if we want resources flowing to lupus, we need it to be considered as an auto-immune disease, which is what it is, rather than arthritis. If we define lupus into arthritis, the money will flow to arthritis, not helping us much. Sandra also explains her awareness campaign kNOw LUPUS, in which many celebrities are involved. Lupus is a global issue, a significant public health issue, and we need all global efforts to work on it. As was done during the last chapter of LFA, she invited us to take lupus from a whisper to a SHOUT.
Landscape of Lupus Groups in Europe, by Blanca Rubio (Spain)
Blanca explained that as part of LUPUS EUROPE’s strategic plan, “Members” was defined as a priority. A survey focused on understanding member group’s aims, structure and resources, the situation of people with lupus in member country, and their needs. The outcome is that our variety is incredible with groups from 10 to 6,000 members, for a total of about 30,000 members across Europe. While this is much, it is only 6% of all patients, so this is a call to get more people in.
Most organisations are directly or indirectly dependant from Rheumatism organizations, and all except 1 work exclusively based on volunteers. Funding is typically limited, with the vast majority of associations funded mainly from membership fees. The request from our members is for support in advocacy work, ideas on how to better work with volunteers, and education / engagement to drive lupus patient interests.
European lupus groups show a diverse range of capabilities and resources, most have limited resources without possibilities of hiring any professional, and need capacity building in priority areas.
Challenges, opportunities and diversity, by Kirsten Lerstrøm (Denmark)
Kirsten broadens the discussion on to some of the other strategic drivers of LUPUS EUROPE’s strategic plan: (a) People with lupus in Europe participate in and benefit from lupus research, (b) LUPUS EUROPE member organizations are enthusiastic and empowered, and (c) LUPUS EUROPE is heard and acting.
Many opportunities exist for research, new funding routes, partnering in projects, but we also face the big challenges of engaging enough people in a volunteer based structure, and mobilising the funding and networks. To these challenges faced by many groups around the world, Europe is on top confronted with the difficulties of different countries, capabilities, approaches to treatment (with lupus centres emerging only in few places). She concludes that it is up to us now to define how we want to progress, towards a global organisation that deals with those specific constraints and turns them into opportunities.
From Grassroots to Regional groups, by Dalilah Kalla (Mauritius)
15 years ago, Lupus Alert started its journey towards hope, grouping people living with lupus (patients, caretakers and friends) together. In 1999, two years after being diagnosed, Dalilah Kalla decided to speak openly about lupus and raise awareness. Her aim was to meet people with lupus to get and provide the moral and emotional support needed. Since the article went in the press, with her home phone number, the phone rings regularly with people saying “I have lupus”…
Lupus Alert engages in multiple activities including raising awareness, visiting schools or patients, bringing information through a library. “Many patients cannot come to us, so we need to go to them” said Dalilah. In Mauritius, public healthcare is free at the hospital, including sunscreen, but some treatment is not available there, like bone densitometry. Lupus Alert provides those treatments, helps people get access to adequate care when needed, and reminds them of the importance of staying active and celebrating. Lupus Alert also connects externally with patients around the world, and would welcome your support and visit!
Lupus Alert is essentially people, based on volunteers, full of passion and determination, ordinary people doing extraordinary things!
Organising local groups to federal political player, by Diana Gray (USA)
Diana offered us the thought that “Great things are done by a series of small things brought together”. We may be small individually, but collectively we can have great impact.
LFA was founded in 1977, with local organizations joining as chapters and developing scope and reach. In 2014, an Integrated Strategic Plan was created, linking Chapters and National level into the vision of “a life free of lupus”. It defined as strategic outcomes the reduction of time to diagnosis, safe and effective treatment, expanded direct services and increased access to treatment and care. An additional objective is to increase support so as to achieve the outcomes.
Each LFA chapter is legally independent, and signed an LFA affiliation agreement that ensures commonality of goals. LFA currently has 17 Chapters (ca 50% of the geography), one region (New York), 2 volunteer managed Partner Organizations and 267 Support Groups. This is supported by more than 100 staff. The central structure acts as a service provider for the chapters, offering staff support, marketing materials, templates, model legislation, Magazines (Lupus Now and Lupus Science & Medicine), and a Centre for Clinical Trials Education. It also ensures through its affiliation agreement that affiliates observe standards.
In terms of public influence, LFA developed a network of 200 Advocates that they bring together every 2 years in Washington, DC to educate Members of Congress. LFA trains them on important messages and organizes meetings with Members of Congress. Many things have been accomplished through action at Washington level, including raising investments in research, funding education for minority doctors, …
LFA also receives funding to ensure that patients are at the centre of research in many organizations. This allows them to participate in those projects or organizations and promote patient-centric approaches.
Diana concludes that, with a disease that impacts approximately 5 million globally, we must come together at global level, as was done nationally in the US, and show our strength.