World Lupus and Autoimmune Days in the Time of Corona

Press Release Bandung, 8 May 2020

World Lupus and Autoimmune Days in the Time of Corona

Life goes on. Corona should not be the only matter deserving our attention. Care should also continue towards non-infectious diseases, including lupus and other autoimmune conditions. Why? Because such patients are also vulnerable towards infections, complications, and scarcity of medications. This fact is the focus of Syamsi Dhuha Foundation (SDF) – a not-for-profit non-government organisation in Care for Lupus and Autoimmune programme in the World Lupus Day on 10 May and the World Autoimmune Day on 20 May 2020. Hash-tagged #ShareOurLove, SDF continues to mobilize various levels of support to overcome the challenges caused by COVID-19 global pandemic.

SDF raised funds to provide PPEs for medical staff and Share 2000 Masks (non-medical) as well as emergency PPEs for autoimmune patients in 16 communities in Indonesia. Around USD10,000 was raised in 3 weeks. However, due to the shortage of PPEs in the market, the distribution was conducted in stages when supplies became available for 9 primary hospitals and regional hospitals in Bandung, Cimahi, Cianjur, Majalengka and Medan. The stock was also dispatched to 6 community health centres in Central Jakarta, South Kalimantan and Bandung. The PPEs donated to the health care establishments included Coverall Hazmat Suits, medical and non-medical masks and multivitamins. In the pipeline are the orders for 2 units of non-invasive portable ventilators (Vent-I, proudly made by Indonesians at Salman House of Charity). While fundraising for the Ventilators, SDF also supported micro businesses by ordering the non-medical masks from Panggon Kupu – Semarang community.

“Truly it is an extraordinary new experience to coordinate so many different resources in the current tough situation. In addition, we have to resolve a challenge in which one of the medications needed by autoimmune patients, Hydroxycloroquine (HCQ), has been used to treat COVID-19 patients. This new practice caused the medication’s price to double. Even before this pandemic, HCQ has been difficult to obtain because it had not been manufactured locally until late 2019. We call for the Indonesian Government to control the price, so that the medication remains affordable and does not become more expensive than the essential immunosuppressant needed by autoimmune patients.” explained Dian Syarief, Chair of SDF who is also an autoimmune patient.

Laila Panchasari – Manager of SDF elaborated further,”In the moment of WLD, SDF relaunched the membership cards in a new design to symbolize the enhanced collaborations with a few partners: from regional to national level. The larger scope of support by Pramita Clinical Laboratories and Kimia Farma Pharmacies increase access for SDF members in more places in Indonesia including the convenience in obtaining generic HCQ and Lesikaf (physalis extract) which is manufactured by PT Kimia Farma Tbk. Another partner, Prodia Clinical Laboratories, will also reduce their service fee further as they continue to provide routine check-up services.

Amidst the unprecedented situation of great difficulties at hand, SDF does not give up in gathering financial support especially to help lupus/autoimmune patients who are not included in the Indonesian Government’s universal health scheme (BPJS). A charity auction of 18 arts pieces, contributed by lupus patients, volunteers and members of the public, the Art Creation program highlighted the ‘Butterfly and Sunflower’ theme which are the symbols of lupus worldwide. A virtual conference substituted face-to-face meetings to interact with communities, including lupus/autoimmune patients, from various regions in the country. Thirteen communities from Lombok, East Kalimantan, Padang, Palembang, Malang, Surabaya, Madiun, Semarang, Yogya, Solo, Jakarta and Bandung, participated in the Community Conversation on 3 May. Accompanying the conference were representatives of the communities who presented a song ‘For My Close Friends’ (Untuk Sahabat) (https://youtu.be/vFcfsa24JnI). An Autoimuners Conversation about ‘Pearls Behind Corona’ was conducted on 7 May, involving lupus/autoimmune patients who work as health workers, employees, entrepreneurs and students. “We are reminded again to live healthy and keep up good personal hygiene. We also rekindle the meaning of a family as we go home, and rebuild our capacity to care for others, doing what we can to help. At the same time, we exercise our creativity to overcome the challenges in the field” said Dr. Ekasati, an autoimmune patient who also works at a community health centre in Kemayoran, Jakarta. Psychologist Nisa Hermawati S.Psi M.Psi facilitated the Autoimmuners Conversation and gave a few tips to have a good sleep and other psychological issues faced by lupus/autoimmune patients. ‘Peace With Thee’ (Damai BersamaMu) (https://youtu.be/XQjGdAE89zw) was the song we shared together to end the conversation that morning. 

[1] There are approximately 135,000 – 270.000 lupus patients in Indonesia based on 0,05%-0.1% prevalent from total  population 270 million, while worldwide there are more than 5 million patients, an additional 100,000 cases/year. Data on autoimmune is not available due to its wide varieties.

For further information, please contact: 
• Laila Panchasari – Manager of SDF, Hp: (+62) 812 912 4829, email  lpancha@yahoo.com
• Dian Syarief – Chair of SDF, Hp: (+62) 816 70 93 91, email: end@cbn.net.id

Distribution of PPEs for hospitals and community centres 

New membership card

Coordination of medicine and other donation for patients and PPEs for healthcare personnel 

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