Katharine Wheeler (LUPUS EUROPE Trustee) introduces the afternoon session looking at Lupus groups around the world, under a theme “Aspirations and inspirations”: We all aspire to a better world for people living with lupus, and we can find inspiration in this shared experience.
Videos from Latin America:
The Latin American countries could not attend, but have sent us video messages where Teresa from ALUA (Argentina) explained how ALUA developed its activities, culminating with the patient forum at ICL 2013, which allowed getting access to media and raising awareness. She expressed the hope that a global federation will bring us to the next levels.
Gonzalo Tobar, from Lupus Chile remembers the success of ICL Buenos Aires. Lupus Chile was created in 2008, and aimed to work for everyone with lupus in Chile. He also commends the great work done by Nuria through her blog, which is bringing answers to many people in Latin America. He invites everyone to take a picture of him/herself “I am lupus” and post it on the lupus Chile website where they have a wall for that. This is a first great offer for collaboration across continents. He asks that all of us be the voice not only of our groups but also of the 20,000 people living with lupus in Chile.
Shirley Sanchez, the chair of ASBOLUP (Asociación Boliviana de Lupus) explains the challenge they face in terms of helping patients, but also the society as a whole to better understand lupus: no statistics exist and many people have limited access to treatment. The group also tries to lobby for patients with the government so that they get involved in handling their care. They regret not being here in Vienna, but would like all of us to work together towards better education of patients and governments.
Inspirations from North America, by Tanya Carlton (Canada)
Tanya presents the changes that have taken place recently in Canada. Lupus Canada’s vision is a Life without lupus. Over the past year, they launched many programs, one of which was to grant Scholarships for students with lupus pursuing post secondary studies, so that they do not need to work to pay their studies. They helped fund the launch of a National Lupus Registry of all patients to an online platform, so as to help research. They also created a facebook page dedicated to youth and one with just Information. One of the issue they face is being bilingual, hence need translation of all they do, which is quite expensive. Lupus Canada also developed ambassadors. Their expectation of an International federation is increased awareness, help for smaller organizations, a better sharing of information, and support advocacy. Canada created 12 lupus educational videos, which also help increase awareness via web and social media. Tanya shares one of them with us, inviting to reach to their website for more!
Inspirations from Europe, by Augusta Canzona (Italy)
Lupus Italy has 2500 members and makes several awareness events, for May 10th (WLD) (which they make on the closest Saturday), and a public awareness month in October, including fundraising. They would love to identify an ambassador that could raise their voice. Lupus Italy staffs a free-phone help line from 9h to 16h on week days. Lupus Italy operates through 13 regional groups that are close to the people, organizes conferences and provides assistance and information to patients. Lupus Italy supports 7 lupus clinics through the employment of one or two medical doctors in charge of the Centres. They also support the Pisa SLE Course (once every 2 years) with up to 10 bursaries covering registration fee for young rheumatologists.
Lupus Italy’s funding comes for 66% from income tax donations, whereby people can assign 0.5% of their income tax to charitable organizations. Membership is only 8% of fund raised, and Lupus Italy has creative ideas to increase its income, such as getting a small amount on each pizza sold from 12 pizzerias: It is small in amount but big in awareness, and spreads in social networks.
Inspirations from Asia, by Eko Pratomo & Ayu Bisono (Indonesia), and Marylin Robles (Philippines)
Eko Pratomo of SDF Indonesia presented a great video on Lupus Indonesia SDF. This infographic is a good example in itself of the tools that SDF uses to spread information on lupus. Another achievement is the booklet “The Lupus Tamer”, initially developed in Indonesia, which LUPUS EUROPE has adapted in English and French. This is another great example of win-win collaboration between lupus organizations around the world, and more languages are welcome. Eko, Alain Cornet and Bernadette Van Leeuw proceed to a formal exchange of the brochures as a tangible sign of this passing on of material, and then hand over the French version to all countries where French is spoken (English version will be printed at a later time, and is only available as PDF for now).
Ayu Bisono from Yayasan Indonesia, the other National lupus Group in Indonesia, expands further, explaining the issues faced in the huge archipelago of Indonesia. The dispersion of the population is in itself a challenge, and the population is huge, so each of the two groups have their separate reach. Yayasan operates with 13 groups over 4 key islands. Standards of care and treatment information would be most welcome, but is difficult to distribute to doctors throughout all Indonesia. One of the big issues faced by people living with lupus is the cost of treatment, as the government typically funds only 20% of the treatment cost. Further, Mycophenolate Mofetil costs ($2/tablet), and Albumin Human Protein ($150/ bottle and you need 5!) are not reimbursed at all because they are considered “off label”. This is a real issue as a majority of lupus patients have lupus nephritis. And Yayasan brings visibility to high levels: a team of Yayasan members went all the way up the Himalaya on a fund raising trek to raise awareness to new heights!
Marylin Robles from the Lupus Foundation of Philippines presents their work. For a 100M population spread over 7,000 islands (3 major ones), there are only 120 Rheumatologists, and no count has been made or estimated of lupus patients. LFP has now created 8 lupus support groups, in the biggest metropolitan areas of the 4 largest islands. They hold monthly meetings on the first Saturday of each month, participate in clinical trials, and raise awareness in local media and through their publication “Soaring Butterfly”. Their aspirations are to undertake a National awareness campaign, work with universities to introduce lupus to health professions students, and better link the provincial support groups through regular meetings. They also would welcome being involved in the international lupus community.
Inspiration from the Caribbean, by Reeanna Harrilal
As the final presenter in the session, we welcomed Reeanna Harrilal from Trinidad and Tobago. Up until a week ago she did not think she would be able to join, due to financial constraints, but the money arrived at the last minute. For the first time, the Caribbeans are able to attend such a congress. Reeanna’s journey has been tough with lupus from childhood, but “gone are the days to believe it is a death sentence”, she moved from sitting in a corner and seeking to end her life to saying there is hope and we have a purpose. We can establish a world federation, where all our work put together can achieve a lot. Being a journalist, she used that skill to become an advocate of lupus in Trinidad and Tobago and beyond in the islands, so that one voice sitting in a corner can now resonate beyond the border of the island.
Before closing the session, Nuria Zuniga, that has been tweeting on our behalf during this day announced that we have reached 944,000 impressions on Twitter: Almost 1M people have heard about our world patient leader summit. Our voice already starts to be heard.
Lupus 2017 – Melbourne, Australia and Autoimmunity 2016, By Professor Yehuda Shoenfeld
Representing the organizers of the next International Congress, Professor Shoenfeld is closing the day with an invitation to join ICL, in Melbourne, from March 26 to 29, 2017. However, as autoimmunity is very close to his heart and dedication, he gives an informal presentation on why is it that the immune system reacts so strangely when it comes to lupus. There is a genetic compound as well as a reaction to environmental factors. He believes strongly that also helminths in the digestive system play an important role. However, there is no fact or solid evidence of what it is that triggers lupus. The note on next International Congress and the informal and charismatic presentation triggered a host of questions and comments from the audience interesting subjects – it was a fine way to end an extraordinary lupus day!
In the evening, World summit participants enjoyed a performance from Kim Spierenburg, a young Dutch violinist living with lupus since she was 7 years old. Kim explained how playing violin has become part of her “medicine” and how she finds energy to stay optimistic by living her passion for the music. She invites us all to find our own violin, the passion for something that makes us live our lives to the full, despite lupus biting us.