BALAI SIDANG SENAYAN, MARCH 7, 2013
The bright rays of sun on that beautiful morning strengthened Syamsi Dhuha Foundation (SDF) team’s spirits. The team that consisted of dr.ShianeHanako(SDFManager), dr.Rachmat GunadiSpPD-KR (representative of Lupus Caring Doctor), Yune W, Syafiah Sifa, and Faniza Fatma(representatives of People Living with Lupus), and supported by Ir. Irnantio Witoro, Ir. Eddy Achirwan , Ir. Cara Mariko, Ir. Reni Tamba (representatives of SDF volunteers), and last but not least Dr. Ir. Bogie Soedjatmiko, Msc (Head of Collaboration and Dissemination of Science and Technology Bureau, LIPI) as well as 3 representatives from Indonesia Ministry of Health. SDF team was heading to the House of the Representatives’ 9th commission, the commission that legislates health policy and laws, with a great hope that the members of parliament would support our aspirations for the People Living with Lupus. We were concerned by the reality on the field, where People Living with Lupus often find difficulties in getting proper medications, both in terms of accessibility and affordability. Our other concern was the condition of the health care in general for People Living with Lupus.
Entering the meeting room of the 9th commission, SDF team was directed to sit on the left wing, the opposite of the chairman’s table. Public hearing meeting was opened by the chairwoman, dr. Nova Rianty, SpKJ, and attended by representatives of various factions. After the members of 9th commission introduced themselves, it was SDF’s turn to present ourselves.
Ir. Irnantio Witoro began the presentation with an introduction of SDF, and then it was followed by dr. Rachmat Gunadi, SpPD-KR who explained about the complexity of Lupus from medical perspectives and what are the treatments available. After that, Dr. Shiane Hanako presented the multi-faceted problems faced by People Living with Lupus, from medical as well as socio-economic aspects, emphasizing the needs for the long and continuous therapy treatments. She highlighted that in order for every Person Living with Lupus can be entitled to undergo these therapy treatments, full support and empathy from the members of parliament is needed. We also presented SDF journey in campaigning, educating, advocating, and researching everything about Lupus in Indonesia. Two People Living with Lupus gave their testimonies: Faniza Fatma (20 year old, university student) and Syafiah Sifa (27 year old, civil servant), representing more than 300,000 People Living with Lupus in Indonesia. They recounted how they had to fight against the ‘disease with 1000 faces’ and survived. A representative of Ministry of Health also added that currently in Indonesia, a medical treatment guidelines for Lupus is being formulated, and SDF plays a part in it.
Responding to SDF presentations, the chairwoman of the meeting, dr. Nova Riyanti Yusuf SpKJ, expressed her deep appreciations and she conveyed her political will in support for the proposals: “We support care for Lupus and we will put effort to find concrete measures to be implemented by Ministry of Health, in order to increase the quality of lifeof People Living with Lupus. We will also put an emphasis on correcting the mindsets about People Living with Lupus, in relation to the high mortality rate. This distorted perception usually hinders any supports to be given for patients who are suffering from the disease. We have to assess the appropriate entry point to increase budget for medication, laboratory check, etc. in relation toLupus treatment.”
Other representatives of the factions also expressed their inputs, comments, supports, and questions as summarized below:
- Karolin Margaret:“Give support, seeing how this organization’s movement has gone through a long journey for advocacy, including the use of mass media. Twopoints specifically highlighted to be advocated to Ministry of Health: 1) Medicine Availability Assurance: ensure that the medications are accessible by patients regardless of their economic and geographic backgrounds; 2) Health Insurance:BPJS policy (Badan Penyelenggara Jaminan Sosial – Social Security Service Provider) envisions to have universal medical coverage realized by 2014. Unfortunately,the preparation was not yet finished at the time of the hearing. It was saddening to hear patients who previously received Public Health Insurance now lost the access after data updates. We (the members of parliament) had pushed our efforts to increase the budget by 10 million people (from 70 to 80 million) in 2013. However, in reality, we found out that people, who previously were receiving the Insurance program, now have lost their access to it as they are deemed to be no longer qualified. For Lupus patients,such case should never happen. Lupus is a disease that very much affects the patients’ and their families’ quality of life and economy condition. It is only natural that the state give sassistance, we (the 9th commission) will do the follow up in BPJS task force. People may have heard the buzz about conclusion of Public Health Insurance task force. This is what exactly should be avoided, let’s not be stuck on numbers, but rather the people who should receive Public Health Insurance and BPJS, also whether People Living with Lupus will be included in PBI (Penerima Bantuan Iuran – The premium paid by government) scheme, this will be our discussion with the government. If not included, patients could be included in PI (Pemberi Iuran – self pay the insurance premium), which is considerably less costly in comparison with paying individually all health cost, the monthly premiums was estimated to cost about Rp.30.000,-/month/person. This should help in terms of medication cost. We would also like to ask your inputs on the real conditions of Lupus patients. I hope we can do the right thing together for People Living with Lupus.
- Okky Asokawati:(I am) very supportive of SDF. The highlight is to gain support from Ministry of Health. We should have a strong and clear entry point to position the importance of this issue. Moreover we have the case of People Living with Lupus who previously received Health Insurance/ Public Health Insurance but now are disqualified. Also,we have relevant statistical data that globally the number of People Living with Lupus is higher than cervical cancer and breast cancer. 1) The question: How’s the statistic in Indonesia? This can be a strong entry point; 2) Has SDF, which already obtained international acknowledgement from WHO,ever asked directly to the Ministry of Health, about the reason why People Living with Lupusno longer received Public Health Insurance?; 3) That Lupus patients are 90% women, we can argue that if the women are healthy so is the state. These 3 entry points could help us to secure support from Ministry of Health.
- Anita Yakoba:(I am) very concerned about the conditions of People Living with Lupus, and I felt sorry that this meeting has only occurred now, otherwise there might have been more solutions and movements already took place. I appreciate the Ministry of Health, which has started formulating special guideline for Lupus. What we knew existed were only JamKesmas (Public Health Insurance), JamPersal (Birthing Insurance), and JamPelTas (Insurance for Thalasemia). I also appreciate SDF, which has encouraged various researches on Indonesian herbal plants for Lupus therapy supplements. We would discuss this specifically through the chairwoman with the health research and development, which has already research program on traditional herbal plants in Indonesia. 90% of People Living with Lupusis women/ As women member of 9thcommission we greatly sympathize with all of you and we will ensure our best effort to advocate this to Ministry of Health.
- Imam Soeroso:I highly appreciate what SDF has done to motivate People Living with Lupus, which from what I know can be a fatal disease. From doctor’s explanation, I’m also concerned, how come the mortality rate in Indonesia is higher than other countries? And how come that the low cost medicine is so difficult to access, while on the other hand, there is also very expensive medicine. We need to know how much? So that we can design the budgeting that needs facilitation from us in the 9th commission. We could use this as a political pressure on Ministry of Health to safeguard and monitor that the budget is realized, no matter how much, for the benefit of the people, as stated in the constitution that the people must be protected by the state.
After the four speakers had spoken, the chairwoman, Nova Rianti said: “It is fortunate of us that we have a strong civil social organizationlike SDF. We,the 9th commission, are grateful to be contacted by SDF. We will have to follow up in the meeting with Ministry of Health next week, Insyaallah. This could be a good momentum for us to include Lupus in BPJS schemes. We have to think of specific issues in this BPJS,so that People Living with Lupusare not marginalized or left behind.”
She then gave time extension for dr.RachmatGunadiSpPD-KR and dr. ShianeHanako to answer the questions from Okky Asokawati and Imam Suroso regarding off label medicine.
Concluding the meeting, the SDF representatives summarized SDF’s main proposals to improve the welfare of People Living with Lupus in Indonesia
1) People Living with Lupus in Indonesia who need medications shouldreceive funds from the state;
2) All medicine available to treat Lupus should be accessible atthe central as well as at the peripheral areas,
3)All medications needed by Lupus patients, including those previously not indicated for Lupus (i.e. changing the status from not indicated into indicated for Lupus) should be made available in Indonesia
4) Medicines currently not available in the market or in Indonesia should be made available in Indonesia.
In closing the meeting, the chairwoman read out the conclusion of today’s public hearing meeting, the text of which was also projected for the audience to witness. The content explicitly stated thatthe 9th commission was in support of SyamsiDhuha Foundation’swork in fighting for the rights of People Living with Lupus, and that they will work to elevate Lupus in the Health Insurance Service at the nearest meeting with Ministry of Health.
The air was filled overwhelming joy following the highly positive response from members of the legislatives. We hope the changes can be effected in Ministry of Health program starting this year 2013.
Let us put our effortstogether to constantly stimulate the legislative members, particularly the 9th commission, to continue voicing the rights of People Living with Lupus to the government, to that the realization of JASUSPUS (Jalur Khusus Obat Lupus – Special Distribution for LupusMedication) & JAMPELPUS (Jaminan Pelayanan Pengobatan Lupus – Lupus Medication Insurance Service) can happen in year 2014.
What they said about SDF goes to Parliament
We hope this fight could finally fulfill the hopes of thousands of People Living with Lupus in Indonesia. Thank you SDF and all our restless warriors who have fought for us, we pray that Allah SWT may bless us in every step of the way and turn our hopes into reality…
Rustina Fatoni, Communication forum for People Living with Lupus – Bali
As a parent of Person Living with Lupus, I was touched by SDF efforts and dedications. Despite all my limitations, I’d like to express my gratitude for your efforts to present this to the House of Representatives and fight for the benefit of my child and manyother People Living with Lupus. We hope that the Representatives and the government would soon realize the proposed health insurance program for People Living with Lupus.
Komar, Father of Person Living with Lupus -Bandung
We pray that God would grant SDF a smooth-sailing journey to reach these noble goals.
Diah Rini – Bandung
SDF effort is really awesome. I really want to bewhere you are right now, to show you my support. I hope we’ll succeed… All of our friends, the People Living with Lupus in Medan send our regards and support.
Evi, Cinta Kupu – Medan
We hope all our well intentioned efforts be shown the way forward.
Ahyani Raksanagara, MKes, Municipal Office of Health, Bandung Municipalit
Amazing! We salute your efforts. We pray that the Lord will guide you all the way and may all People Living with Lupus receive right support in their fights for their rights for proper medication.
Yossy – Parahita, Malang
Thanks God… We pray God would relieve you, His devoted followers, from any trials and turbulations.
Lendo Novo – Jakarta
We hope the 9th commission of Indonesian House of Representatives and Ministry of Health would respond to the aspirations of all People Living with Lupus through the work of SDF team. We,people in the remote areas extend our heartfelt thanks for all the caring and the support given to People Living with Lupus. Care for Lupus. Your caring saves lives
Akhsan – Kompak, Tarakan, Kaltim
Unbelievable! Our warmest regard to all Friends of SDF.
Paulus Widjanarko -Combiphar, Jakarta
We’re proud of your fight and advocacies in advancing therapy for Lupus.
Karmelita Satari, SpM – Bandung
Keep on fighting! Our prayers are with you.
Taufik & Putu – Jakarta
As one of People Living with Lupus, I send my thanks for the concerns and efforts by SDF volunteers and doctors. May God abundantly reward every one of you and every single deed that you’ve been working on and fighting for.
Meri Yanti – Sukabumi
Glory be to God. The event went very well. The response from the House of Representatives was also good. May all our hopes turn into a reality. Keep up the spirit! We pray that SDF may always be a channel of His blessings.
Ir. RennyTamba – ITB ‘83
Beyond our expectations
Rachmat Gunadi SpPD-KR, Lupus caring doctor
Thanks God, the 9th Commission was very appreciative on the explanations by dr. Rachmat about Lupus’ facts and the barriers in its treatment, and on the testimonies by Syifa and Faniza. They were also moved to learn about SDF initiatives as presented by SDF representative, dr. Shiane. The chairman of the hearing and all members agreed to support the advocacy, and to give political pressure on Ministry of Health. They were surprised to find out that one of the SDF delegations is a representative from the Ministry of Health. It is a complete team. The 9th commission would conduct hearing with Minister of Health and promised to ask the minister to follow up this special case of Lupus. It is magic, my dear. I witnessed how the gentle breeze of kindness shown by SDF woneveryone’s hearts in the 9th commission’s meeting room. Thanks for giving me the opportunity to become a small part of SDF’ kindness.
Ir. Irnantio W. Hadi – ITB ‘83
Let’s fight together, for our friends People Living with Lupus…
Okky Asokawati – Member of 9th Commission Indonesian Legislative
We’re extremely delighted… indeed Allah is never a sleep. I hope that the House of Representatives will hear their people’s aspirations and commit to improve their people’s welfare, so that every individual who is in need can benefit. Go go go!
Irawati Durban, Artist Bandung
Congratulations! Keep it going and Never Give Up.
Prof. Anna Alisjahbana-Bandung
Lusian Sofyan, Friends of People Living with Lupus – Omah Kupu, Yogyakarta
We pray that Allah will bless all of us with a smooth path to our endeavours. Even though right now, we could only offer you our prayers from home, we hope that God would grant you, our warriors, a clearpath and success….
Sandy Nurdianto, Father of Person Living with Lupus -Tasikmalaya