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  • Sharehouse Jakarta 3:53 pm on May 11, 2012 Permalink | Reply
    Tags: Ang Peng Tiam, dharmais SKTM, epatient indonesia, , singapore doctors   

    Update: Pak Fadil Gets Chemo, Gives Thumbs Up 

    Almost two months ago, just before Pak Fadil got a breathing tube he was losing his patience — since cancer is frustrating, to say the least. His tongue looked and smelled like something you’d rather spit out. And he had devastating headaches and a terrible cough. This was complicated by diabetes and heart problems. But what was really driving him crazy was being in the hospital.

    As an inpatient he had bounced in and out of ICU (before and after the tracheotomy),  up to the Fl. 5  diabetes ward  and down to  Fl. 4 with the other ear nose throat patients. Mama and Mona did 90% of the nursing. Occasionally a drill sergeant-type nurse would sweep in and family members of the patients would scatter.

    I asked but no one could tell me who the treating doctor was. When I heard s/he was at that very moment on the same floor, doing rounds, I made of point of wishing to meet him/her. (It had been approx. 48 hours since a doctor had been by). I got lectured on protocol and was told to understand that some patients have urgent needs and we can’t second-  guess the docs.  I thought they might go into crazy bule containment mode and call security but they didn’t call anyone and the next day Fak Fadil was released.

    Despite his weakened condition, the patient just wanted to leave. His medicines were apparently wrong, he couldn’t talk or breath, and the doctors seemed not to notice his advanced cancer.  Quite understandably he actually tried to break free and leave which complicated things for everyone.

    Today the patient — now at Dharmais hospital — is mostly free from devastating headaches, require less pain medication, is learning to exercise his arms so he can write again — and he’s gone through a 4-day course of chemotherapy with 5-FU.

    The Dharmais doctors are suggesting that he be released now — health permitting — until the next chemo treatment. But he shook his head; he didn’t want to leave.

    The family still does much of the nursing and Mama’s legs are swollen from standing so often. But the tumors are shrinking again. And we’re very thankful the patient is receiving affordable treatment. Actually, the family can’t afford it. But with liability for apparently only 10% of actual costs (90% subsidized by government within SKTM framework), its within reach.

    Get well soon! Selamat sembuh!

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  • Sharehouse Jakarta 1:20 pm on April 15, 2012 Permalink | Reply
    Tags: , , careseeking indonesia, epatient indonesia, , kesehatan, melek,   

    Boleh tidak saya ngobatin saudara saya yg kena kanker pakai SKTM di RS Dharmais? 

    Forum-forum Internet (termasuk Facebook dan blog) merupakan teknologi “kesehatan” super penting.  Menurut survey yg membuat rekan-rekan saya, dokter-dokter Indonesia jua sering memakai Internet  sebagai sumber informasi kesehatan utama.

    Gandaria City

    Maghrib @ GanCy

    Nah, saya buat blog ini untuk membagi pengalaman SKTM, Jamkesmas, Gakin, dll, dan minta maaf jika sebagian terbesar blog dari content-nya blum di ditranslate kpd bahasa Indonesia.

    —————

    Pas kemarin, hari Jumat, saya keluar dari kantor dan langsung ke rumah Mona, yg dekat Gandaria City. Kami berrencana main ke warung khas Madura asli yg punya Umi Neli di Pondok Pinang. Sekalian, kita ngobrol tentang sukses-sukses “get well soon” (cepat sembuh) yg telah mengalami Mona dalam sistem kesehatan umum Indonesia (termasuk SKTM, Gakin, Jamkesmas, dll).

    Tapi bukan justru kita berniat “happy-happy” atau merayakan sesuatu dgn aktivitas itu kilat ke PonPin cari sop kambing. Malah, kita saat itu hanya pikir ayah Mona — namanya Fadilla –  yg sejak 12 bulan tidak bisa makan apa saja — apa lagi sop dan sate — kecuali lewat selang.

    Rabu pagi saya ikut Mona dan adik2 dia kpd RS Dharmais untuk bicara sama Ibu Susan di bagian SKTM. Kemudian kita membuat rencana agar secepat mungkin bisa menemui semua persyaratan dan tata cara   yg berlaku berhadap penduduk Jakarta yg golongan miskin yg sakit. Kemudian itu — di hari kamis dan jumat — Mona melaksanakan rencananya. Dia bolak-balik berberapa kali dari RS Cipto (RSCM), RSUP Fatmawati dan RS  lain sampai akhirnya dapat mengurus semua kartu, surat, fotokopi, tanda tangan, hasil anataomi, patologi, CT scan, dan hasil pemeriksaan dan laboratorium lainnya.

    Dulu kita jarang beli sate, karena Pak. Fadil — sebagai tukang sate keliling yg banyak teman dan miliki juga tiga anak perempuan cantik  suka beli 15 ekor ayam sekalian. Tapi sejak lebih dari 12 bulan lalu, dia tidak pernah keluar dari rumah kecuali mau ke rumah sakit. Dia sudah lewat proses chemo/sinar tapi kanker kembali. Ada komplikasi juga, dari diabetes.  Dan sejak lebih dari satu bulan tidak bisa bicara gara2 tumor yg di lidah dia. Hanya tinggal doain bahwa cepat akan di terima ayah Mona– laki-laki yg berasal Bangkalan, Madura berumur 52 — sebagai pasien kanker di RS Dharmais.

    Mona juga jarang dagang sekarang. Karena urus pengobatan pasien di rumah sakit umum kaya “full-time job” yg suka menghabis semua waktu dia, sekalian waktu adik-adik dan ibu juga. Sudah lebih dari satu tahun keluarga Mona (10 orang di bawa atau atap) tidak ada penghasilan apapun (kecuali suami Mona yg kerja satpam). Jadi gampang dapat SKTM. Tapi cara di pakai juga penting.

    Nah, Mona (kakak ipar saya) makan sop benar2 luar bisa yg produk Ibu Nely (pas didepan mesjid Ja’ami di PonPin) sekalian ngshare cerita lucu ttng anak dia yg empat tahun yg kadang-kadang suka mengambil peran funny guy. Mungkin karena Fahri  banyak mederita sebagai bayi, sekarang dia sama sekali dia tidak takut apa2 dan/atau siapa2. Baru-baru ini dia ketemu sama dokter dia duluh di RS Fatmatwati. Ternyata Dokter Bambang masih ingat Fahri juga — anak yg lahir dengan usus  yg tidak jalan dan butuh tiga operasi sebelum umur dua.

    Sebelum Fahri bisa bicara yg lain dia sudah pintar berterimah kasih kpd dokter2 RSUP Fatmawati : ( sekalian bilang “sakit” dan “takut” ). Skrng si Fahri sehat banget, banyak pacar — kok ? –  dan mau menjadi pilot (atau polisi). Gara2 itu saya suka sebutkan kesembuhan Fahri sukses SKTM Mona yg pertama.

    Whassup?

    Have a niece day

    Mona senyum saat pikir perjalanan panjang  “Get Well Soon” — yg mulai waktu Fahri lahir dan belum kelihatanya akhirnya juga.

    “Tadi pihak Puskesmas yg minta bantuan dari saya — terbalik khan — karena mereka kurang mengerti onkologi, patologi dan soal2 gitu,” kata ipar saya orang sangat ramah dan optimis.

    Mungkin beda dari adik2 dia, ibu mudah ini yg berhobi nyanyi musik dangdut merupakan perempuan “gedung-pungan”  atau kota/kampung asli. Kenapa?  Karena dia lancar bahasa Madura sekalian Indonesia.  Dan dia merasa sama aja betah saat ngcater makanan untuk pesta mewa orang asing di Kemang maupun melayani kebutuan satu-dua ekor sapi  mewah yg biasanya suka menginap tiap malam dalam dapur-dapur orang yg di desa kecil daerah Bangkalan, Java Timur.

    Tapi sukses-sukses kemarin — apa ada hubungan atau tidak dengan kasus Pak Fadil yg sampai sekarang belum ada kabar bagus sama sekali?  Selain “e-pasien” Fahri, Mona pernah bantu ibu dia sendiri berhadap keputusan sedikit bertakutan ttng tindakan kelenjar leher. Prosedur itu ahirnya di lakukan Dr Enos (RS Fatmawati juga). Hari ini nenek Fahri 100% sehat.

    Banyak pasien lain yg Mona pernah bantu juga — biasanya hanya dgn cara kasih semangat , tapi kadang2 dng cara menjelaskan proses urus surat seperti SKTM . Pasien2 itu termasuk saudara Mona sendiri (adik Mona kena TBC dan suami kena bisul serem ) dan tetangga/bukan saudara.

    Apakah bisa pakai SKTM di Dharmais? Tentu bisa. Dibawa hukum Indonesia pasien yg tidak mampu dan/atau miskin tetap berhak cari bantuan medis.  Tapi mencari bantuan itu juga memerlukan uang, kerja keras, dan kesabaraanya.

    Umi Neli's Sate Pondok Pinang, Jakarta

    Umi Neli's Sate, Pondok Pinang (in front of Mesjid Jami)

    Kenapa? Karena saat pasien SKTM insya Allah sembuh dan mau pulang, keluwarga pasiennya akan menerima tagihan. (Dgn SKTM pembiaya bisa jadi 15-20% dari jumah asli dalam pengalaman kita.) Tapi, kalau tidak bayar, tidak bisa pulang juga.

    Selain itu, ongkos bolak-balik cari surat — itu pakai uang. Ongkos pulang pergi antar pasien atau cari obat di apotik untuk pasien atau kunjungi kpd pasien tiap hari di RS — pakai uang juga.

    Nah, siapa akan jaga anak kecil di rumah jika mama mau lari2 terus tiap hari urus masalah RS? Ternyata mama tidak bisa dagang kalau  dia tiap hari ke RS.  Jadi disitu ada gejalah/masalah yg hanya bisa obatin dgn uang.

    Demikian, jawapan saya untuk sementara  — dan saya minta ma’af sebelumnya kalau tidak bagus — “ya” bisa obatin saudara anda dgn SKTM di RS Dharmais.

    Tapi  selain surat SKTM itu — dan uang yg cukup — butuh juga informasi seluas mungkni, iman dan percayaaan diri, koperasi dari semua pihak keluarga, kesabaraan dan tidak-kecapaian. Walaupun  proses urus surat dan izin itu kadang-kadang repot, kalau kami bisa pasti anda bisa.

     
  • Sharehouse Jakarta 4:12 pm on April 10, 2012 Permalink | Reply
    Tags: , , Dharmais hospital, djarum, epatient indonesia, , , social determinants of health   

    RSUP Fatmawati >> RSCM “Cipto” >> RSPP “Pertamina” >> RS Fatmawati >> RSKD Dharmais ?? 

    The title of this post refers to string of Indonesian hospitals that my father-in-law has been treated at. What’s interesting is that these hospitals don’t cooperate with each other in any way. So in each case it has been the initiative of the patient’s family has been behind the move.

    The result hasn’t been good. So how would be we do it  differently, the second time? Hopefully the answer will emerge over the lifespan of the blog.  For now, let’s assume we did everything right. Dharmais is not only the best cancer hospital in Indonesia, but they have official Indonesian national cancer center status. Which means the SKTM state-subsidized healthcare scheme  is in place and available to Pak Fadil who quit his work hawking chicken sate  from a mobile pushcart nearly two years ago.   At present the family has no source of income.

    I’ve decided to take the day off tomorrow– half day anyway — and pay a visit with Mona and other family members. We’d like to know whether or not Pak. Fadil can get a tongue operation. It’s his only chance. RS Dharmais is a household name, although I suppose it’s a place most people would just as soon not too much about. Dharmais deals especially, perhaps exclusively, with cancer patients, including children. I’ve been there once.

    We know Dharmais is well versed in attempts to cure oral cancer. As mentioned, we’re also interested to see if the Indonesian state-subsidized medical system will pay for it, as provided for by law.  Because otherwise, we’ll have to go back to RS Cipto.

    Mona and Sema were at RS Cipto yesterday. And Pak. Fadil. Poor guy. Imagine dragging into an Indonesian state hospital as a Stage 4 oral cancer patient. He’s been there a million times. And the other state hospital on the other side of town — RS Fatmawati.

    But they never seem to do anything. Almost as if they’d rather not, but that would be hard to prove. What they do — as we know very well by now — is give you a blood test. That takes a day, not including getting the results. And they’ll follow that up with a different type of test, for example heart function, lungs, liver, etc. You’d have to do about a week of tests (as an outpatient, coming to the hospital each day) to be ready for an MRI or CT scan. That’s not written anywhere, that’s what we learn from doing ethnography work. Participant observation. (I studied this in college, by the way).

    So yesterday was Day 1, because Pak Fadil has been so sick he hasn’t been able to come to the hospital to do tests regularly. And then he was so sick at RS Fatmawati — when they put in the trach tube so he could keep breathing — that — well — that he couldn’t hardly pay regular visits to his docs at RS Cipto. And so, understandably, I guess, you have to start all over.

    “We have protocol,” is what they told Sema.”And meetings.”

    I wasn’t there but I know she wasn’t angry — well almost maybe — when she said, “yes, and as you meet my dad’s face is drying up. ”

    And then she asked the young doc to examine the patient. And he did a double take. He wasn’t sure what to do. But then he did it.

    Not uncommon. I’ve also had to tell an Indonesian doctor to do the very obvious.

    So bit of a lack of faith, not so much on our part, as we can still conceive of how it would be to be a doc working in that hospital. But not Pak. Fadil. He can’t, for the life of him I”m sure, figure out why folks can get it together to remove his tongue. Of course there were opportunities before and he, I guess, turned them down. But that was back when his tongue, his mouth, his throat, everything was still working. Much less to lose now.

    We’ll see what we learn at Dharmais.

     
  • Sharehouse Jakarta 1:00 pm on March 15, 2012 Permalink | Reply
    Tags: epatient indonesia, , , , informed consent Indonesia, oral cancer asia   

    Strangled for Info

    No good news re: Pak. Fadil. I suppose we should begin looking for patients with less complicated cases. It’s worth pointing out that the main point here is information. To make the system work you need lots of it. When my father-in-law went in for an operation at RS Fatmawati yesterday Mona pointed out that this was operation No. 6 for us in less than 3 years.But actually it’s 8, since Fahri had 3. All of them successful and some of them brilliantly so, such as little Fahri’s.

    The only time u’re pretty much guaranteed good info is when they’re putting you under the knife. Informed consent at its finest: you’ll hear them clearly call “family of [patient’s name].”

    Next, they’ll determine your relationship to the patient. Now they’ll begin to speak clearly and slowly, looking you in the eye. Lumayan — not bad, that is — for a doctor. And they’ll emphasize the most important parts of what they’re saying like *maybe won’t wake up* and *not necessarily a simple operation.”

    And you can ask questions and get clear answers. Very unlike the ordinary office call. That’s when it dawns on you that the case isn’t so complex that doctors are at a loss for words, or totally puzzled by it. It’s just that they’re not around nor inclined to speak to you. It’s a one-way info scene. They give orders. The end.

    Of course the operating room situation is dif. That’s because it’s a bargaining scenario. You have to give them consent so they can go ahead and do what they’ve already planned to do with their OR for the morning. And they can’t be wrong. You need to accept the risk of that.

    Anyway, for me the OR epiphany at #RS Fatmawati yesterday ahead of Pak Fadil’s tracheostomy was that the lung infection we’ve heard about (is it pneumonia or what, don’t know) can be related to Pak. Fadil’s difficulty breathing. And this can help his lungs heal up.

    Which leads one to check the net again and you see that besides the tongue situation, the pressure through the neck — lymph nodes ? — is part of the breathing problem. So the breathing tube make sense as a workaround.

    But that’s the kind of thing you won’t learn until you literally just about can’t breath.

    Speaking of two-way flows of info, we really appreciate the comments, of which there have been some real substantive ones lately. Terimah kasih and GET WELL SOON!

     
  • Sharehouse Jakarta 6:19 pm on June 6, 2011 Permalink | Reply
    Tags: epatient indonesia, epatient jakarta, fadil mona, , kanker jakarta, , pink floyd,   

    Update: Pak Fadil is feeling the effects of the… 

    Pak Fadil is feeling the effects of the radiation. The equipment is aimed to concentrate as much of the energy as possible at the point of the tumor (tongue) with as little as possible hitting other tissues. But those tissues include some sensitive ones in the mouth and neck area. So it’s common to a lot of sores. And the teeth take a big hit. This can interfere with radiation treatment, which was the case today.

    But the patient now has a hostel near the hospital, and a nice one. We’ll go with him to Cipto tomorrow to talk to doctors. I’d like to know why he doesn’t have any painkiller stronger than Ultram yet.

    Pak Fadil baru kena efek dari sinar: luka2 di mulut. Hari ini dia tidak bisa ikut jadwal sinar. Besok kita ke Cipto lagi. Belum di kasih obat anti-nyeri. Tapi, dia sudah ada kost bagus dekat Cipto.

     
  • Sharehouse Jakarta 5:28 pm on June 4, 2011 Permalink | Reply
    Tags: , bill and melinda gates, , epatient indonesia, , jangan rokok, kanker indonesia, , public hospital,   

    Update & heartfelt appreciation for your help (raised over USD 500) 

    In the last week we have received the rupiah equivalent of Rp 5,220,000 (five million two hundred twenty thousand Indonesian rupiah) as well as a lovely recliner. We are extremely grateful. Thank you!

    It was touch and go week with some paperwork hassles that forced Mona to contact legal aid but ultimately worked themselves out. One bright spot was the arrival at the house of the recliner/rocker.

    Pak Fadil has completed his 10th radio/chemo round and is beginning to get some nausea. He says he’s lost his sense of taste.

    Fadil has oral cancer and has been ordered to have 35 sessions which involve chemo and/or radiation treatment. So the’s nearly a third of the way there. We’re expecting that he’ll need a lot of more attention as the side-effects begin to accumulate.

    On Friday he had to wait from about 8:00 am until around 6:00, because one of the machines wasn’t working. He took a bus to the hospital and came home in a taxi, around 8:00. We don’t expect he’ll be strong enough to keep up that kind of routine, so we’re looking for a place for him to stay that’s closer to the hospital. That’s what the doctors suggested. 

    PAK FADIL’S GET-WELL-SOON POST (BEFORE)

    Epatient Pak Fadil

    Once the only piece of furniture in the house, this telephone seat has a friend

     

     

     

     

     

     

     

     

     

    PAK FADIL’S GET-WELL-SOON POST (AFTER)


    SKTM Patient

    Chair, answer to prayer

     
  • Sharehouse Jakarta 4:29 pm on May 20, 2011 Permalink | Reply
    Tags: , care-seeking behaviour, epatient indonesia, , health policy, low income countries   

    Update: Jamu (hopefully) cures cancer / looking for kost near RSCM 

    Pak Fadil was in good spirits this evening. He said he’d been able to eat. Goats milk and herbals from Madura brought back his appetite. Ironically, after so many years of hearing the nonsense gospel of pills-cure-colds, Indonesians are forgetting how to make jamu — the herbal remedies used here since time immemorial. But when you have cancer it seems like every doctor’s  a hippie — have some broccoli juice, grapes are good, have you thought about mangosteens and Soursops?

    Before the biospy we provided the ‘Pak with plenty of buah merah (Pandanus Conoideus) capsules and dried mahkota dewa AKA madewa (Phaleria macrocarpa) for tea. I hope he’s continued to take it. The research is promising, as far as I know.

    Mona was upbeat evening. “That’s it. We’re done. All already. Chemo and radiation to start next week, the the Buddhists are going to take care of everything.”

    In the face of truly challenging health problems that her family has — for some reason — had to face over the last few years,she has always been shockingly optimistic — and practical. He thinking seems to be, if I can’t actually cure the disease, then let me focus on finances and logistics. For months — years actually — she ha been tirelessly waits in line and networking with the hospital staff so that her family members will be there with all the paperwork in place when their name is called.

    Anyway, we’re looking for a kost near RSCM now. The mes (a hostel type arrangement) is inexpensive enough, but we’re afraid that there might diseases and even bad vibes circulating there.

     
  • Sharehouse Jakarta 12:10 am on May 20, 2011 Permalink | Reply
    Tags: , cancer treatment indonesia, epatient indonesia, , , jamkesmas Indonesia, public health care Indonesia, rscm hospital Jakarta   

    Muslim Cancer Patient at RSCM Hospital Get Radiation Treatment Courtesy of “the Buddha” 

    I think yesterday was a pretty tough day at the hospital (RS Cipto AKA RSCM) . The costs alone are staggering, at least in the context of the patient expectations of receiving free medical care. Of course we now know that free medical care in Indonesia — which is sometimes up to international standards and always vastly oversubscribed — isn’t actually free. There was a bill for something like 8 million by the end of the day and one for 30 million coming up.

    But somehow we’ve gotten this far. Clearly Pak Fadil is close to securing access to the big guns and poisons. And that’s why the scheduling and pay process is more intense. So Indonesians with cancer would want to be where he is. He needs these weapons to knock out the 4.6 x 2.3 x 2.5 tumor on his tongue.

    Mona has to continually run to Chinatown to get signatures from a Buddhist organization there. Right now we’re paying with signatures. Who knows how or why the Indonesian public health system — in this case the cancer unit at RSCM — cooperates with a Buddhist organization in North Jakarta. But I’m glad. The Indonesian language being what it is, if you ask who’s paying for her father’s cancer treatment the answer translates loosely as “the Buddha,” who’s birthday Indonesia celebrated a couple days ago in the form of a lovely three day weekend.

    Mona, Sema and everyone will be back at Cipto again today with the Bapak who we do expect to begin radiation treatment on Monday. He’s pretty thin but seemed to be in good spirits over the weekend.

    As an out-patient he’s been told to secure a place at the “mes” — a type of barracks that costs just over a dollar a day. That’s better, I guess, than having to commute to the hospital which would be hard on him and increase the risk of missing an appointment. According to Mona he can’t miss any of his radiation appointments or the chemo ones that follow.

     
    • Sandy 3:50 am on March 8, 2012 Permalink | Reply

      That’s the Tzu Chi organisation, Indonesian govt must be so happy that Tzu Chi is here.

  • Sharehouse Jakarta 4:42 am on May 14, 2011 Permalink | Reply
    Tags: , e-patient indonesia, epatient indonesia, , health care literacy Indonesia,   

    Hospy shopping , clock ticking — MRI unit down at Indonesia's largest public hospital 

    We’ve been seeking treatment for Pak Fadil for several months at Cipto Public Hospital (RS Cipto) in Central Jakarta. He has oral cancer. It’s getting hard to speak or eat.

    So far we’ve done tests at Cipto. So many tests. Including the biopsy. We were happy to to have a biopsy — tumor on the tongue, stage II, squamous cell cancer. We were at the Fatmawati public hospital in South Jakarta for several months without even getting a biopsy.

    But at RS Cipto we are concerned that, since we are using the state sponsored insurance system — SKTM in this case — we may be “standing in line” between too many paying customers. We’re also concerned about the quality of the health care. After months, still no operation, no radiation, no good painkillers. Ultram AKA Tramadol doesn’t help Pak Fadil sleep or eat. (In fact, Ultram keeps you from going to sleep).

    Yesterday, treating doctors at RS Cipto told us to go find another hospital because the MRI unit at Cipto is broken. Without the MRI, Pak Fadil can’t begin radiation therapy as scheduled next week (19 May).

    We have checked with various hospitals, including MMC, Pelni and Pertamina and it’s harder than you might think to walk in and “borrow” and MRI for half price, which is what you pay when you’re an SKTM patient. Of course, we’re concerned that there’s a problem with the system itself.

     
  • Sharehouse Jakarta 2:56 pm on March 15, 2011 Permalink | Reply
    Tags: cipto, epatient indonesia, fatmawati, , , ,   

    Update: We had received the name of a doctor… 

    We had received the name of a doctor at MMC hospital from Frank. That doctor referred us to a friendly doctor at RS Proklamasi, which does ear-nose-throat exclusively. And this doctor can provide treatment at Cipto (where JAMKESMAS insurance) would apply.

    But it’s far from where Pak Padil, the patient lives. Although not far from my house. Also it would require re-initiating the JAMEKESMAS paperwork and/or converting to the new hospital. We’re also wondering what the reaction of our “friends” at Fatmawati will be when we go back there the next time.

    Overall, I think yesterday was really good. This is actually the second time I’ve had a doctor at a name-brand hospital offer to see a family member at Cipto. So the system works and has some flexibility.

    This is the context of the treating doctor at Fatmawati being overseas untiil the end of the month; having taken off for seminars without doing the biopsy we expected would follow shortly after he sternly warned us not to slack off on this tongue tumor or Pak Fadil would lose his tongue to cancer.

     
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