Terima kasih dan sampai ketemu lagi Pak Fadil!

Fadil bin Samin (1959-2012)

Pak. Fadil died yesterday after two days in ICU at RS Pertamina and a long, bitter fight with oral cancer. Aside from 3 pretty daughters (and a handsome son), he was well known and liked for selling good sate and making sure bad actors kept a low profile in Kampung Duku a S. Jakarta immigrant “barrio” populated mostly by Madurese.

Throughout his illness he continued to expand the house he’d built for his family using salvaged materials. It was 3 floors connected by ladders and quite comfy. He was generous to a fault and I can’t count all the folks down on their luck who stayed there while getting back on their feet. He’ll be buried in Bangkalan, Madura.

~~~~~~~~~~~~~~~

 

 

Aya dari isteri saya meninggal dunia semalam di RS Pertamina setelah 2 hari di ICU dan berjuang cukup keras, pajit dan panjang sama kanker oral. Selain 3 anak perempuan cantik (dan 1 satu laki2 ganteng), Pak Fadil banyak teman2 karena duluh kerja sebagai tukang sate Madura keliling. Kata orang juga, lebih aman daerah rumah dia di Kp. Duku, Jakarta Selatan, karena maling2 pada takut sama Pak Fadil.

 

Sampai skrng, isteri dia dan semua anak-anak dia (kecuali isteri saya) tinggal di rumah 3 lantai yg dia buat sendiri (dgn cara beli 1 batako, pasang 1 batako). Banyak sekali orang bermaslah yg pernah tinggal di rumah itu gratis, sementara mereka cari solusi lanjut dng hidup mereka.

Pak Fadil akan di kubur di Bangkalan Madura. Ambulans sudah sampai Jawa Tengah. Selamat jalan Pak Fadil!

 

 

Who is Mona and what is her involvement with state-subsidized health care in Indonesia?

Left to right: Sema, Ana, Mona, Fahri

A small mattress stained in a rainbow of colors lay in an empty hospital bed at Fatmawati, a large, full-accredited treatment and training hospital in South Jakarta.

Two hysterical children — including my nephew 18 month old Ahmad Fahri — arrive from the operating room carried by their mothers.

Yesterday after arriving at the hospital, 18-month old Ahmad Fahri played happily on the floor with other young patients.

But you could see his surprise when met Maulana , a child about his own age with hydrocephalus, a condition relating to the flow of cerebrospinal fluid. Malulana’s head appears to be at least four times the size of Fahri’s.

Fahri was born with Hirschprung’s disease. Two of Fahri’s first words were “hurts” and “scared” will come in handy here at the state hospital.   However, he seems to understand that the doctors want to help him and usually tells them terima kasih or thank you.

Mona laid Fahri in the bed and tried to calm him. Then she arranged his IV drip and ran off to the pharmacy with a prescription, first giving a few instructions to Fahri’s father and her 15-year old daughter, Halima.

Now Fahri must begin his recovery from the first of a series of operations – a colostomy — which it is believed will eventually give him full, normal use of his colon.

It isn’t immediately clear who is charge of Fahri’s post-operative care. Perhaps it is his mother, Mona, who like many Indonesians uses only one name.

Up and down four flights of stairs, she is back again. She worries about where the drugs will come from. Will someone bring them? Would her husband be able to pick them up without being able to read? No medical staff are in sight.

Mona, age 30,  is the oldest of four children in a family that immigrated to Jakarta from the island of Madura, between Java and Bali.  She didn’t finish school but — unlike her mother — she can read  and speaks Indonesian without an accent.

Mona’s generation is the first within her family that takes city life for granted. But she also speaks fluent Maduran and enjoys visits to verdant, peaceful countryside of Madura.  With competencies and comfort levels beyond those of either her younger siblings or parents, she has grown up with a lot of weight on her shoulders.

Only one of the six beds in this room without air conditioning  in the children’s ward is empty. That means five Indonesian families who qualify for government health insurance share a single room.

The room is full of family members trying to ascertain and attend to the needs of the recently admitted children. Young siblings and cousins of the patients manage to release stress by relaxing beneath the hospital beds or exercising in the hallways. After lunch, several young men and women come in to smile at Fahri and the other young patients. They wear smart hospital clothing but apparently lack medical training.

Finally a nurse takes Fahri to a small room across the hall. He repositions the plastic pouch attached to his belly which will supplant all his bowel functions for the next few months .

Why are they hurting me again, the little patient may well have asked. He was restrained by his mother, father and an aunt, while other family members watched the sad but successful intervention through a window. Then Fahri’s sister, who had permission to miss a day of junior high, left for a laboratory in a far corner of the medical campus with a tissue sample.

The pouch replaced and antibiotics administered, Mona fanned her exhausted baby with a folded sheet of newsprint. She smiled broadly. While this was just the beginning of a series of operations, it marked the end of a long process of inquires, applications and tests.

“Finally we’re beginning,” she said.

Bules and Indonesians speak up — care to comment on Singapore or Indonesian doctors?

Ini komen-komen yg berikut artikel ini dari Jakarta Globe(JG)  bulan lalu mengenai saingan antara dokter Singapore dan dokter Indonesia.Kalau ingin komen ttng dokter RI cari aja “Reply” dibawa post ini atau klik disini untuk komen kpd artikel JG.

————

These are some of the reader comments accompanying a recent article in the Jakarta Globe about competition between Indonesian and Singapore doctors. You can register your own opinion on the matter  by clicking “Reply” below.

zerodiversity

11:02am Apr 19, 2012

I would rather go Singapore for treatment of more serious medical problems too. It’s not about the quality of service as well as doctors. The law here does not protect against malpractice, look at Prita. Of course, the level of trust I have for local doctors is low too.

 

dimsumcapcay

10:36am Apr 19, 2012

Indonesian doctors are not supposed to be threatened with competition. As intellectuals, they should understand that in order to compete is to increase and uphold quality.

Indonesian medical doctors education system has reduced into a doctor making industry with questionable competence as proven by their products at the 24 hours clinics scattering the Capitol. Since medical education can only be access by those who can afford it, Indonesia is losing their best minds and good heart doctors, and replaced by un-emphatic rich brat with arse-attitude.

Based on my experience, I would rather go abroad to seek medication rather have it here with uncertainty linger. The cost would almost be the same anyway.

imaji

10:30am Apr 19, 2012

It’s good for patients for local doctors to have competition. A friend is an Indonesian doctor based in SG and he has a stream of Indonesian patients that come to SG after enduring bad treatment from Indonesian doctors, from bad diagnosis to malpractice. With competition the local doctors will be forced to improve their service and performance. Why would people pay more to go to SG if local alternative is as good?

nefretiriii

11:44am Apr 19, 2012

The problem isn’t just the doctors in Indonesia. I think we do have some really good doctors, but they’re not supported with an excellent healthcare team. Secondly, I think everyone would agree to the fact that most doctors just have really. huge. egos. They don’t like to be questioned, and they don’t think the patients are knowledgable enough to be explained to. In short, Indonesian doctors often treat us like we’re a bunch of idiots who “wouldn’t understand even if I explained it to you”. Yes, we DO need to know what’s happening to our body, our loved ones. And we’re not THAT dumb! I’m not saying such arrogant doctors don’t exist in Singapore, they do too, but at least more doctors there are willing to explain and talk to us like we’re more intelligent human beings. I don’t think Indonesians flock to Singapore hospitals unless they have a good reason to. It IS far more expensive and bothersome. Yet they do it anyway. Time for Indonesian healthcare to look in the mirror and ask: WHY?

barkhov

10:17am Apr 19, 2012

I wonder why so many Indonesians chose to fly to Penang or Singapore rather than just drive a few miles to nearest hospital.

Because… Nah, don’t want to make myself a subject of lawsuit for stating the fact.

Dokter singapore, dokter Indonesia saingan pasien Indonesia

Ini cerita dari Jakarta Globe tentang seminar-seminar (seperti seminar ttng kanker)  yang dokter Singapore spesialis onkologi (kanker) suka membuat di Indonesia.

Ternyata dokter Singapore dan Malaysia sudah tagih pasien Indonesia. Siapa heran, juga. Kalau penyakit yg terkenal sebagai susah di sembuh siapapun yg ada uang cukup pasti ingin bahwa di obatin di Singapore atau Penang, Malaysia. Menurut artikelnya, kebanyakan pasien asing di rumah sakit Penang asal Indonesia.

Tapi dokter Indonesia sedikit bingung. Soalnya, kerja sebagai dokter — teorinya — adalah profesi bukan hanya kerja. Kalau memang begitu, maka dokter luar negeri mesti  mennghormati sistem healthcare Indonesia. Faktanya, lebih murah sini dan banyak dokter bagus.

Dan baynak dokter tidak bagus.

Ini artikelnya yg aslinya dari surat kabar Singapore New Straits Times oleh wartawan Wahyudi Soeriaatmadja (April 19, 2012)

Singapore Doctors Upset Peers in Indonesia

For about two hours, Ang talked about how cancer in the early stages may show no symptoms, how even advanced cancer may still be curable, and about new chemotherapy treatments that do not cause patients to lose their hair.

Ang is part of a wave of Singaporean specialist doctors from Parkway, Gleneagles and others, who are travelling to give talks in Jakarta and other cities such as Bandung in West Java. But local doctors, worried about losing business to Singapore, said this amounts to practising in Indonesia without a medical licence.

Ang, medical director and senior consultant at Parkway Cancer Centre, made it clear during the talks that he was only giving general advice.

When one attendee asked about dietary restrictions for a person undergoing chemotherapy, he answered: “Eat and be happy.” Ang said he encouraged his patients to consume as much nutrients as possible.

Hospitals in Singapore and Malaysia are more expensive than in Indonesia.

For example, a single room at Singapore’s Mount Elizabeth Hospital costs $578 a day, while at the Metropolitan Medical Centre Hospital in Jakarta, a similar room costs 1.5 million rupiah (S$205).

But some Indonesian patients are willing to pay more for higher-quality care and doctors who spend more time with them.

Patients in Indonesia have often complained that doctors here do not give them enough explanation about their treatment.

Neighboring city Bandung has had doctors from Singapore coming to town as well this past year, an organizer told The Straits Times.

No one is keeping an official count but there are certainly more foreign doctors holding public seminars in Indonesia of late, including those from Malaysia, according to Slamet Budiarto, secretary-general of the Indonesian Doctors Association (IDI).

More Indonesians now go to hospitals in Penang as a cheaper alternative to Singapore hospitals. Indonesians make up the bulk of foreign patients in Penang, with patient numbers surging from 202,000 in 2009 to 250,000 in 2010, according to the Penang government’s Web site.

Lung cancer survivors Barita Manulang, 61, and his wife — from Jakarta — had been treated by Ang, and they joined him at his recent Jakarta appearance to talk about the experience. They encouraged others not to fear cancer, noting that some patients easily lose hope or are in denial about their problem.

Ang showed slides of other success stories. After hearing about how the young son of a vegetable seller from Batam had cancer in his testicle cured by Ang, the audience burst into spontaneous applause. The boy, whose testicle had swollen to the size of a melon before treatment, was shown playing and sitting on Dr Ang’s lap at the clinic after he was declared free of cancer cells.

About a quarter of Ang’s patients are Indonesians.

One attendee in her early 40s, who identified herself only as Leli, said she found the talks useful. Leli had a sister who died of breast cancer and she herself has ovarian cysts.

But the talks, Indonesian doctors said, are against the law as the Singapore doctors do not have licences to practise in the country.

“If a seminar is attended by fellow doctors, that is fine. But if the general public is invited, then that is illegal,” IDI’s Slamet told The Straits Times.

Foreign doctors who wish to practice in Indonesia must register with the Health Ministry, must speak Bahasa Indonesia, and have a recommendation from their home country’s doctors’ association. There were 108,132 registered medical doctors in Indonesia in 2010, according to the government data.

Ang said Indonesian doctors should not feel threatened by his talks.

“Indonesia is a huge country. There are more patients here than anybody can handle. We are trained to look after patients to the best of our capability. Whoever can do the job best is the best person for the patient.”

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!

Sex, lies & cigarettes — kok masih rokok?

[Editor’s Note: Video Ini masih baru. Banyak yg di ngomongin dalam rekan-rekan gw, bidang hukum/lawyer. Saya mau ngblog di Get Well Soon karena humbungannya cukup dekat dengan soal kretek/tembakau Indonesia dan kasus kanker oral mertua saya Pak Fadil. ]

Original poster (Yayasan Jantung Indonesia) di You Tube berkata:

Fakta mengenai industri dan bisnis rokok di Indonesia/ penetrasi rokok dalam masyarakat Indonesia

Dalam Konferensi Dunia untuk Tembakau 2010 Koresponden Christof Putzel pergi menyelinap dan melakukan pembicaraan dengan karyawan perusahaan tembakau. Ia juga melakukan wawancara dan investigasi langsung mengenai bocah perokok terkecil di dunia serta memaparkan mengenai fakta-fakta cengkraman bisnis tembakau global di Indonesia.

Disharing oleh Yayasan Jantung Indonesia melalui Komisi Nasional Pengendalian Tembakau serta Current TV untuk kepentingan edukasi mengenai bahaya rokok.

Kalau kanker, tidak ada kata menunggu, sabar, dan takdir

Sel normal (A) saat rusak atau tua mati, tapi sel kanker yg error (B) mala membelah diri dan maju

Apakah kamu tidak tahu bahwa Allah mengetahui segala sesuatu yang ada di langit dan bumi. Sesungguhnya itu semua telah ada dalam kitab, sesungguhnya itu sangat mudah bagi Allah (Al-Hajj / QS. 22:70)

Sebagai seseorang WNA, saya sadar bahwa kesabaraan termasuk dalam sifat-sifat utama orang Indonesia (memang saya tinggal di Jakarta/Jawa tapi pernah juga ke pulau2  lain, orang tetap sabar).

Nah, kali ini — dalam hal ini yg namanya kanker — apa kita tetap mesti sabar?  Apa ini hanya saat sabar — dan menyadari bawah Allah mengetahui segala sesuatau yang ada di langit dan bumi –atau saat bergerak, bantu, tanya, barang kali pindah rumah.

(RS Dharmais juga menerima yg miskin/kurang mampu seperti mertua saya, namanya Pak Fadil (foto dibawa) lagi sakit kanker lidah stadium lanjut).

Kenapa mesti cepat di obatin kanker? Karena kanker meruakan eror dalam sel-sel tubuh. Dari satu sel eror, mejadi banyak. Dari Wikipedia saya pinja: “Kecacatan sel, sebagai penyebab kanker, biasanya bisa memperkuat dirinya sendiri (self-amplifying), pada akhirnya akan berlipat ganda secara eksponensial.”

Itu kuncinya. Eksponensial. Kalau orang memperkuat dirinya sendiri maka satu laki-laki dan satu perempuan menjadi 3 orang (atau empat kalau kembar). Tapi kalau sel kanker, 1 sel kanker menjadi 1,000,000,000 (satu miliar) sel kanker dalam berberapa minggu (tergantung tipe kankernya).

Makanya, kalau pasien masih sehat atau masih mudah, harap kita menolak kata2 pihak rumah sakit yang berbau sabar dan takdir. Kalau penyakit lain, yg bukan kanker, tidak ada maslah. Mala masuk akal tunggu duluh. Tetapi kanker beda. Kanker tidak pakai kata tunggu,  sabar atau sopan.

Ini saya juga pinjam dari Wikipedia: “Kebanyakan kanker menyebabkan kematian. Kanker adalah salah satu penyebab utama kematian di negara berkembang. Kebanyakan kanker dapat dirawat dan banyak disembuhkan, terutama bila perawatan dimulai sejak awal. Banyak bentuk kanker berhubungan dengan faktor lingkungan yang sebenarnya bisa dihindari. Merokok dapat menyebabkan banyak kanker daripada faktor lingkungan lainnya.”

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Indonesian Health Minister Endang Rahayu Sedyaningsih Dies, Was Treated for Cancer at RS Cipto Mangunkusumo

The passing of former health minister and Harvard grad Endang Rahayu Sedyaningsih at RS Cipto today is the subject of this news alert from the Jakarta Post. She’s the one who told the USA medical research community that if they wanted bird flu samples they should send money. Since Indonesia would certainly be paying for the vaccine, once developed.

The story of her passing is only indirectly related to the Indonesian hospitals content of this blog. But it does serve to illustrate my fascination with “RS Cipto” hospital/medical school/medical research facility.  In fact, there’s no doubt the place looms large in the imagine of people of all ages across the archipelago. Stories with themes ranging from heroism to terrorism often end up there. It’s downright spooky, many would say. But others are more likely to remember a poor friend or neighbor whose newborn was saved by the no-doubt immense technical and human expertise standing by to benefit Indonesia at this particular Central Jakarta address.

In fact, I was thinking and I believe it’s one of the very few Jakarta public places — except for perhaps the public parks in the same part of town —  that I visit that has been in operation since Dutch times (ca. 1910). In other words, they’re doing exactly the same thing there that they were 100 years ago. This type of continuity is rare in a place experiencing change on so many levels — political, legal, demographic — and at such a rapid place as Indonesia.

How else to illustrate the experience of seeing the very rich and very poor united by the raw, human experience of being alive and trying to stay that way as (dis)organized among the cramped medical campus full of stately old Dutch buildings  located on what was once a gorgeous and is still a very interesting bend in the Ciliwung River in Salemba, Jakarta?

Well, besides this rare photograph (and snapshots of my own on this blog), I guess I’d compare it to a trip to the Department of Motor Vehicles (DMV) back in Texas. Because here’s a nation doing what it does, presumably trying its best. No one really looks forward to a visit to the DMV or a big urban hospital. But once you’re there, you can’t help noticing how, like a mirror, these public institutions reflect the makeup of the nation and just how well — and badly — we behave as doctors, patients, policy makers and citizens.

So here’s the report from the Jakarta Post:

Endang Rahayu: A low-profile yet controversial minister

Former health minister Endang Rahayu Sedyaningsih passed away at 11:41 a.m. on Wednesday after her battle against lung cancer. Cipto Mangunkusumo General Hospital director Akmal Taher said Endang had been undergoing treatment at the hospital since April 20.

Endang leaves her husband, Reanny Mamahit, Tangerang General Hospital director, two sons, Arinanda Wailan Mamahit and Awandha Raspati Mamahit, and a daughter named Rayinda Raumanen Mamahit.

Born 57 years ago in Banyumas, Central Java on Feb 1, the mother of three was mostly unknown to the public until her appointment as health minister in 2009, replacing the front-running candidate, medical professor Nila Juwita Anfasha Moeloek, at the last minute.

Endang graduated from the University of Indonesia in 1979 and then joined Pertamina Hospital in Jakarta as a clinician. In 1983, she moved to the Jakarta Health agency, but not before serving as the head of the community health center at the Waipare Health Center in East Nusa Tenggara.

She then continued her education and gained her master and doctoral degrees from the Harvard School of Public Health in 1992 and 1997 respectively. Endang then expanded her career by joining the World Health Organization (WHO) in Geneva, Switzerland in 2001, serving as the technical adviser at the Department of Communicable Disease Surveillance and Response.

Five years later, Endang was named coordinator and researcher of the avian influenza program for the Health Ministry’s Center for Biomedical and Pharmaceutical Research and Program Development in Jakarta.

In 2007, she was promoted to director of the center.

Additionally, she worked as part of an advisory team and as a country consultant for foreign agencies including the US Agency for International Development (USAID), the Australian government’s overseas aid program (AusAID) and the World Bank.

Endang’s appointment sparked criticism, including from previous health minister Siti Fadillah Supari, who questioned her stance during her tenure as director of the Health Ministry’s Center for Biomedical and Pharmaceutical Research and Program Development.

Siti, in particular, had reportedly suspected Endang of smuggling H5N1 bird flu virus samples overseas.

Endang, a former researcher at the Naval Medical Research Unit Two (Namru-2), a US military research center that had been closed by Siti Fadillah, denied the accusation and asked the public to let her prove herself.

“That’s not true. I’ve never taken the virus overseas. I’ve never sold it. I only conducted research with colleagues,” said Endang in October 2009, adding that she would uphold her predecessor’s policy of closing Namru-2. (asa/dic)

 

And here’s the report from Kompas with regard to her illness (since 2010):

Menkes Endang idap kanker sejak Oktober 2010

JAKARTA – Mantan Menteri Kesehatan Endang Rahayu Sedyaningsih meninggal dunia sekitar pukul 11.41 WIB di RS Cipto Mangunkusumo, Jakarta Pusat, siang ini. Endang Rahayu menghembuskan nafas terakhir setelah berjuang melawan kanker paru-paru stadium 4.

Informasi mengenai sakitnya Menkes sudah lama diketahui publik. Pada 16 Januari 2011 lalu, Staf Khusus Menteri Kesehatan Bidang Politik dan Kebijakan Kesehatan, Bambang Sulistomo mengatakan Menkes Endang sudah mengidap kanker paru-paru sejak Oktober 2010.

“Iya meninggal sekitar 10 menit yang lalu telah pergi,” kata juru bicara kepresidenan, Julian Aldrin Pasha saat dihubungi wartawan, siang ini. Saat menghembuskan nafas terakhir, Endang didampingi suaminya.

Endang, menteri lulusan Universitas Harvard, Amerika Serikat itu, sejak semalam terus dikunjungi sejumlah menteri. Pagi tadi, Menteri Pemberdayaan Aparatur Negara dan Reformasi Birokrasi Azwar Abu Bakar baru saja membesuk Endang Rahayu.

Wakil Ketua Komisi IX bidang kesehatan Sumarjati Arjoso juga baru saja tiba di RSCM. Bahkan, Sumarjati sempat mengenang masa-masa kerja bersama Endang Rahayu saat masih di Dinas Kesehatan DKI.

Masih menurut dia, Menkes sempat berobat ke luar negeri, yaitu ke Kota Guangzhou, China, pada Oktober hingga November 2010.

 

Cipto v. Dharmais — apples/ oranges, or night & day?

Pak Fadil to RS Dharmais today for more scans and because of bleeding.  He’ll have scans of the entire body back shortly. And — insyaAllah — then the docs will no what to do.  Meanwhile, another family member was back at RS Cipto today. She waited from 9 a.m. to 2:00 pm — nearly an entire hospital day– only to be told that her medical records were lost. Well that helped explain the wait, but how to explain the things that go on at RS Cipto.

Anyway, around 3:00 they found her file. But somehow her doctor had changed and she had to begin again with the process of explaining what was wrong with her. An old Jakarta expat said, “Yea, I would imagine it’s more or less just a triage scene in there.”  I guess he’s right.

Meanwhile, weird thunderstorms with hardcore lightening bolts were all over Jak today, making a mess of Monday traffic.  Mona said riding in an ambulance isn’t so very fun and doesn’t encourage positive thinking. But it is a practical way of getting sick people to the hospital.

Coming home was a bit difficult because of pouring rain. Kind paramedics and a friendly neighbor helped Mona, Sema, Sarah and Mama wait till rain slowed to suit up the patient and help ease the stretcher through the maze of alleyways — all the way to the family’s front door.

The scanning work, morphine, heart medicine, vitamins, plus lots of hoses, gauze and the like, came to less than Rp 2,000,000 or $200.

On the bright side, that’s not too much. But is $200 enough to cure cancer and is cost a factor in Indonesia’s state-subsidized health care for the poor? All I know is what I hear. And I heard that, at Cipto, late last year, Pak Fadil got treated with a $100 chemo drug normally used for dental work. (I haven’t confirmed nor do I really understand.) Meanwhile, at Dharmais the family spoke with a family where the dad also has a tongue tumor.  They said the chemo drug used cost $2700 and patient is doing well.

In defense of comparing apples and oranges — if that’s what we’re doing — then I’d say that the comparisons and analysis have to begin somewhere.

When you’re treated at Cipto pursuant to the SKTM or another subsidized scheme, there’s this silence about costs that’s rather deafening. Back in River City where I come from — and where socialized medicine hasn’t quite caught on — when you get sick the doctors always offer you options for getting better and those options are always going to be presented in terms of cost.  If they don’t give you price info then it means you’re going to get the best treatment they can deliver. It wouldn’t cross your mind that they’re going to economize by buying cheap drugs.

But at Cipto the cost issue never comes up. It’s as if the treatment were free. But is it? What is the actual cost of using the wrong chemo drug when you only have once chance to get it right — and you get it wrong?

So let’s assume that non-VIP patients at Cipto rarely hear about costs because it’s presumed not relevant to them, since they’re not paying/presumably can’t pay. That makes sense. But I wonder if there are other reasons. Perhaps it would make the job of treating the patient significantly more difficult if s/he could override the default protocol by self-financing drugs and procedures that are otherwise unavailable. Perhaps there’s a grey area about which drugs are on the list, i.e. covered by the insurance.

Our experience with painkillers at RS Cipto was that, in our efforts to get something stronger for patient than ultram, our threats, pleas, ridicule, etc were unavailing. But once we said we identified the time-release morphine product that would normally be prescribed in this market , then it was just a matter of who would pay. When we offered to pay, we got the scrip.

Is there some type of parallel for chemo drugs?

Kesulitannya urus kartu Gakin, Jamkesmas, dll

 

Tergantung wilayah kita tinggal, kadang2 gampang dan kadang2 sulit mengurus surat/kartu jaminan social seperti Gakin, Jamkesmas, Jamkesda, SKTM , dll.

Di RS Fatmawati kemarin saya lihat Hati Hati Calo! Makanya kadang2 sulit juga. Sesuai dng laporan ini dari Komas di “jual” Jamkesda harga Rp 2 juta per orang di Jakarata.  

Tapi seperti saran stiker saya lihat kemarin juga: coba aja duluh dan tidak usah kaget kalu lumayan gampang urus semua surat yg terwajib.

Kalau masalah dgn RT, RW, kelurahan, Puskesmas, siapa yg bisa bantu? Pasti orang lokal daerah situ.

Kalau dokumen sudah lengkap tapi di tolak sama rumah sakit, baru siap cari bantuan dari pihak rumah sakit (mengeluh), dari pihak ke3 (seperti lembaga bantuan hukum), atau barang kali dari keluarga pasien lain yg telah di obatin di RS target pakai surat/kartu jaminal social target.

Tentu tidak boleh malu minta bantuan dari pasien lain. Kalau di RS Dharmais, RSCM, dan RS Fatmawati,  pasien2 lain biasanya langsung setujuh ngsharing informasi ttng status asuransi/jaminan.

Pas kemarin istri saya mendekati ibu yg membantu saudara dia. Menurut isteri saya ibunya di panggil “Chi” karena turunan Tionghoa. 

Isteri saya: “Pakai apa Chi?”

Ibu itu: “Pakai SKTM neng.”

Isteri saya: “Sama. Jual apa Chi?”

Ibu itu: “Kalau kita, mas, Neng.”

Nah, sebagai WNA cerita lucu. Tapi tidak pantas dari sini kita langsung menyimpulkan bahwa ibu itu penipu. Cukup banyak orang Tionghoa yg miskin di tanah air.  Dan pasti banyak juga yg bergerak dalam bidang perhiasan. Seperti saya pernah ngblog, keluarga manapun cepat jadi miskin kalau ada salah satu pihak keluarga sakit kanker.

Pokoknya, siapapun pasti senang pakai kartu Gakin (miskin) atau SKTM (kurang mampu). Sementara itu lewat calo orang kaya bisa jadi miskin.

Apa RT, RW dan Puskesmas sampai nilai Dinas Kesehatan dan rumah sakit manapun  sudah siap untuk  pergumulan yg pasti datang gara2 terlalu banyak orang saingan untuk kamar2 RSCM, Dharmais, dll?

No way: pasti tidak.

Pak Fadil Pulang dari RS Dharmais — Pak Fadil Released from Dharmais

Kabar buruk : ( bad news is that Pak Fadil is getting sent home from top hospital w/o any apparent treatment)

Tentu kami sedikit kecewa karena  Pak Fadil di suruh pulang sebelum dokter bisa menjalankan tindakan apa saja untuk bantu dia seperti di rencanakan. Lidah dia sudah lebih besar dari mulut dan  — menurut orang  yg bukan dokter — perlu operasi untuk menghapus.

Sampai sekarang kurang jelas kenapa di suruh pulang. Saya hari ini sudah di kosongin jadwal secara total karena mau ketemu sama Dr. Maria, Dr. Ramadan, Dr. Mario atau seseorang dokter mana saja yg dapat jelasin status Pak Fadil sebagai pasien RS Dhamais.  Tapi gagal. Dokter-dokternya susah diketemu. Soalnya, kami dengar lagi tungu obat kemo dan kami dengar sebenarnya tidak ada apa2 yg bisa lakukan untuk membantu Pak. Fadil jadi #BINGUNG.

Kabar baik : ) good news is that you can use your SKTM card at RS Dharmais)

Sudah terbukti :  -) RS Dharmais terimah SKTM

 

Doctors at RS Dharmais Taken Aback by Results of Treatment at RS Cipto

The doctors at Dharmais Hospital, upon seeing Pak Fadil for a second time, were quick to assure us that his future treatment at Dharmais would be very different than the treatment he’d received at other government-affiliated hospitals over the past year when his cancer advanced from stage 1 to stage 4. They even made forward-looking statements on regained function such as swallowing and speaking (although I don’t know to what degree possible or not). Chemo was an option, again, we learned; and that the Chemo drug used at Cipto was not likely the right one (we heard that from docs at RS Fatmawati also).

While these BlackBerry snapshots don’t show all of Room Teratai 409 (on the fourth floor of RS Dharmais, Indonesia’s leading center for cancer research and), it was indeed sunny and peaceful with a breeze coming through the west-facing windows. While there would normally be six patients sharing the room, each one may close the curtains around his/her bed. The room is also larger than the comparable six-patient rooms at RSUP Fatmawati or RSCM “Cipto” falling into the Kelas III category and reserved for patients paying with government-supported health insurance like SKTM, Gakin, Jamkesmas, etc.

But most interesting of all, the room was empty. Besides Pak Fadil, the other five beds were available for anyone,even weary bloggers. This seems to support what we were told when we first inquired about the possibility of having Pak. Fadil treated here. They said, “Yes, we always have plenty of beds for [poor patients]. And later (when they saw how ineffective the treatment he’d received at the other government-supported hospitals had been) they said, “Why didn’t you come here sooner.”

Yes, indeed why? Why were we unaware that it was “the national referral center for cancer cases”? For that matter, why didn’t it occur to any of the doctors at MMC, RSCM, RS Fatmawati, RS Pertamina, RS Harapan Kita to refer us to RS Dharmais. After all the patient was known to have a hard-to-cure tongue cancer complicated from the get-go by diabetes and heart problems. (The patient is 52.)

While conspiracy theory is generally preferable to real research as a technique for increasing blog hits, I found myself actually forced to plug this one into Google: why is a bright, clean, sunny cancer hospital like Dharmais empty in a country where scantily-clad teen women (known as SPG or sales promotion girls) hand out free cigarettes to guys, 70% of whom smoke by age 19?

So I leaned that Dharmais was allegedly once a slush fund run by Noto Suwito, half-brother of former strongman Soeharto. But so were a lot of institutions in those days. And not much else. The Dharmais website tends to conceal as much as it reveals.

But besides the trickiness of hospital shopping (a de facto part of being poor and sick which I was aware of by the time I registered this blog), if there’s one more thing this blog — so far — tends to demonstrate, then it’s how tortured communications are in general as between low-income patients and their families in Jakarta and the Indonesian physicians treating them. I’ve seen a doctor conduct a 5 minute patient consultation using grunts only — no intelligible verbal communication (at RS Fatmawati, granted it was an interview for administrative purposes and perhaps he got all the info he needed by reading the file). This has got to be the epitome of unmanaged care.   To call it poorly managed care would be to suggest we know who’s in charge.

I am by no means a medical ethnographer, but I have ethnography experience and am an experienced interviewer, including in cross-cultural contexts and for immigration and human rights law. Still, it is beyond me to figure out just where in the course of treatment the average patient being treated in these public Indonesian hospitals might be. Certainly you can’t ascertain that by asking the patient, who frequently acts as if the treatment were out of his or her hands. Probe as you will, no one really knows. (Presumably that excludes the top doctor in charge, but almost no one has every been able to tell me who that is, let alone schedule a consultation.)

To return again to the perspective of the patient and his/her family, Mona said that Dharmais, which has national cancer center status in Indonesia, reminded her of a disco. Not sure about that, but it is rather unlike RS Cipto. I look forward to spending more time there, as much as required for Pak Fadil to get well soon. I understand the childhood cancer ward is on  Fl. 4 has been renovated a couple of times by Prudential Indonesia and look forward to peeking in.

In any event, we’re really happy to have doctors who appear to be kind and competent on this case. Yesterday the word was that doctors, not nurses, would be visiting the family’s home.  What a shock that would have been. It hardly makes sense, in fact. And — despite being “threatened” twice, it hasn’t  materialize. Instead,  Pak. Fadil was admitted as an in-patient, then released, then re-admitted.

85 Percent of Cancer Patients and Families Bankrupt

Sebuah riset menyebutkan 95% pasien kanker di Indonesia mengalami kebangkrutan gara-gara mahalnya biaya berobat dan tidak adanya jaminan memadai dari pemerintah (hasil penelitian yang dilakukan ASEAN Cost in Oncology or ACTION), fase pertama studi ini menunjukkan bahwa jumlah penderita kanker makin bertambah dengan biaya yang semakin memiskinkan. Studi pada fase kedua akan dimulai pada Januari 2012 di 12 RS (Dharmais, RSCM, Medistra, Hasan Sadikin (Bandung), Kariadi (Semarang), Sardjito (Yogyakarta), dr Sutomo dan Klinik Onkologi (Surabaya), Sanglah (Denpasar), Wahidin Sudirohusodo (Makassar), Adam Malik (Medan) terhadap 10,000 pasien kanker di 8 negara ASEAN (Indonesian total 2,400 )]
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Source: http://healthmad.com/conditions-and-diseases/85-percent-of-cancer-patients-and-families-bankrupt/

The beginning of Phase II Study of ASEAN Costs in Oncology showed that 85 percent of patients and families go bankrupt because of the cost of medicines and cancer treatments.

The beginning of Phase II Study of ASEAN Costs in Oncology showed that 85 percent of patients and families go bankrupt because of the cost of medicines and cancer treatments. This indication has the potential for cancer medium-and low-income families get poorer.”If the families are suffering from breast cancer, treatment costs could reach USD 200 million a year.

So, people who earn Rp 10 million per month can go bankrupt, “says Prof. Hasbullah Thabrany Center for the Study of Health Economics and Policy Analysis, University of Indonesia, at the launch of Phase II Study of ASEAN Costs in Oncology (Action), Friday (16/12), in Jakarta. Action is a multinational study on the socio-economic impacts of cancer conducted by The George Institute, Sydney, facilitated by the ASEAN Foundation and Roche Asia Pacific. Studies conducted in eight countries of ASEAN, namely Malaysia, Cambodia, Indonesia, Laos, Myanmar, Philippines, Thailand, and Vietnam. In Indonesia, the study will be carried Faculty of Public Health, University of Indonesia, in 2400 cancer patients and families.

The study began in January 2012 in 12 hospitals, namely RS Dharmais, Cipto Mangunkusumo, RS Medistra, and MRCCC (Jakarta); Hospital Dr. Hasan Sadikin (Bandung); RS dr Kariadi (Semarang); dr Sardjito Hospital (Yogyakarta); Dr. Sutomo Hospital and Clinic Oncology (Surabaya); RS Sanglah (Denpasar); RS dr Wahidin Sudirohusodo (Makassar), and Dr. Adam Malik Hospital (Medan) . Put to the government for a full year monitored the patient and family financial burden, in terms of care or indirect costs, such as transportation. In addition to knowing the amount of cost to cancer patients and their families during treatment, the study results can be considered policy-making in cancer control.

According to Hasbullah, the study will be completed in 2013, and is expected to be input for government policy related to the implementation of the National Social Security System in 2014. Health Minister Endang Rahayu Sedyaningsih supporting this study. He said, cancer is one of the main causes of global mortality rate of 13 percent (7.4 million) of all deaths per year. As many as 70 percent of cancer deaths occur in low and middle income countries. According to the Health Research Association, 2007, the prevalence of tumors 4.3 per 1,000 population in Indonesia.

Seven causes of cancer death after stroke, tuberculosis, hypertension, injury, perinatal, and diabetes.According to hospital information systems, the highest type of cancer in hospitals throughout Indonesia in hospitalized patients in 2008 were breast cancer (18.4 percent), followed by cervical cancer (10.3 percent). In Indonesia, 70 percent of cancer cases are found at an advanced stage . As a result, low survival rates and absorb large budget. Data PT Askes, cancer ranks fourth absorption outpatient costs and follow-up in 2010.

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.

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.

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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.

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 (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.

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.

Amerik: Thank you for smoking

Alfred W. McCoy’s seminal work The Politics of Heroin in Southeast Asia says that “sanctimonious empire builders subjected millions of natives to the curse of opium addiction, generating enormous revenues for colonial development, and providing profit  for European stockholders (58).”

So the recent WTO ruling may belong to the old story of business and government working together to market drugs. The WTO ruled — in essence — that since menthol in the USA is — by definition — “cool,” the U.S. can’t ban other ciggy flavors, like cloves. This came very much as a surprise to lawmakers of every stripe. Even Phillip Morris (which is heavily invested in Indonesia, via its Sampoerna brand) had worked out a way to get behind the failed no-flavored-cigarettes (except menthol) campaign.

So what we’ve got is Indonesia selling cherry-flavored to American youngsters (who might not be into ol’ Joe Camel) and the U.S. — totally steamed — desperately searches for the trade loophole and discovers that the tobacco trade — and all the-double think that’s kept it smoldering so chilly all this time  — isn’t a loophole. It’s more like the way countries (and major guerrilla movements) have always done business. It’s how they finance the military, build hospitals, etc.

As McCoy tells it:

“[I]n the 1500s European merchants introduced opium smoking; in the 1700s the British East India Company became Asia’s first large-scale opium smuggler, forcibly supplying an unwilling China; and in the 1800s every European colony [including Batavia] had its official opium dens (59).

This is a victory for the Indonesia-based manufacturers of  cloves cigarettes (we call them kretek), including Phillip Morris and the powerful tobacco families.  But it’s hardly a victory for Indonesia.  Indonesia — like the U.S. — simply has nothing to celebrate as regards its drug policy, particularly with regard to tobacco. Here in Jakarta, even if three doctors have said they think you have oral cancer, they’ll easily keep you waiting a couple months to get a biopsy within the state medical system. Meanwhile, zero attempt is made to keep kids from buying cigarettes (quite the opposite).

At the same time, selling drugs is easier said than done, and eventually accomplished through a ruthless amalgam of domestic politics, trade diplomacy, and either military or mafia force. So maybe it’s good this is a court decision rather than a military coup or a purchase order for helicopters.

But the take-home for Unc. Sam is that, if you can’t even prevent ruthless foreign profiteers from legally  selling candy ciggies to your kids, then just imagine — ’cause most of the time they’re not even going to bother to sue.

Most favored flavor status for menthol?   I guess the WTO agreed with the kretek makers — it just sounds ridiculous. Like calling the other guy’s fag a dirty weed without hurting the fresh, flavorful image  of your own menthol-mix marvel.  But for backers of commodities like cocaine and cannabis,  even a drug war or two may go down as the normal costs of doing business.

If I’m not mistaken, both cloves and menthol leverage eugenol as the key happy ingredient. Who cares, however, because the point is that kids are always going to hit exotic new substances, whatever they may be. If the local stash in Cincy runs low, they’ll order more from Indonesia.  So the focus on tobacco, which tons of smokers admit has a miserable cost/benefit ratio,  is unjustified.  Alcohol ( about as anti-social a drug as you can find) may also get much more attention that it deserves.

Kids (and adults) aren’t really as stupid as people think. The problem is they tend to be misled by the semi-well-intentioned regulation efforts of government/business. If you chose your drugs based on U.S. law, then you’d be smoking and drinking — both extremely legal  in the U.S. –and you’d be 15 times more likely to get oral cancer (a new risk factor we just learned about and you should quit at least one, today).

Meanwhile, having gotten into the business of helping market cigarettes, the the U.S. government ought to be wondering, just about now, what the hell it’s doing. Cigarettes sell fine, no need to mess with the flavors.  And it’s too complicated — work for chemists, not politicians.

It just seems that nothing’s working and a new paradigm is needed. Both alcohol and tobacco should be forced to compete on a fair playing field with other roots, bark, berries, brews and every other type of thing that people drink, snort, chew or otherwise ingest. Because honestly, who would smoke a bunch of unknown stuff rolled up in a paper tube with a silly flavor? Why?

Would alcohol and tobacco really be able to compete for people’s recreational drug dollar it it weren’t for the legal cachet? Pride in the quality of one’s national tobacco seems to me so old school. There are a lot of safer drugs.

What happened to e-ciggy? I think you’ll find it’s safe enough. Problem is, it doesn’t help move all this tobacco that’s piling up in the warehouses of Java.

Cigarettes and breathing tubes — proudest moments and finest technology

My wife was distraught. Not only is her dad very ill, he’s being treated within the Indonesian public medical system.

“There’s a tree dad wants us to plant. The leaves can cure cancer. It’s very good. And aspirin. I’ve read its very good . . . isnt’ it?”

Oral cancer imagery tends to be heartrending, full of paradox and cliche. It’s a sad story that I”m not beyond telling —  about how taste and inspiration merge in a single breath and it eventually takes all the puff out of life, and it dries up and wisps away.

Until he got tongue cancer, my father-in-law was a big Sampoerna fan. Unfiltered and hardly fancy, I knew the Sampoerna Dji Sam Soe (now a Phillip Morris brand) prided itself on old-fashioned quality. From the TV ads one remembers the narrative about the innovative family business, the little leaf-stuffed paper tubes rolled by hand, perhaps even something about a female touch.

Sure  enough, at http://cheapclovecigarettes.com we learn that Pak Fadil — who until a few years ago worked two jobs selling sate and as a night watchman — was hooked on a blend of “sweet smell of Madurese and American tobacco with finely elected cloves and special sauces delivering consistent tastes across the generation . . . a kretek cigarette complementing the hard worker. By smoking this cigarette, you shall immediately know what the difference.”

The blend of spices is indeed exotic and secret. But if you smoke it long enough you’ll immediately find out that the cancer it causes is of the everyday, garden variety.   While the burden of cancer in Indonesia — presumably passed down from generation to generation on the male side — is arresting, I’m afraid the level of innovation and technology in cancer treatment in Indonesia isn’t as impressive, especially within the state hospital system where Pak Fadil is being treated.  (He’s had in-patient status for the last several weeks and is recovering from a tracheotomy. The case is complicated by diabetes and heart  problems).

Operasi Kanker Lidah Bassist Aerosmith Berhasil

Oleh: Rama Wirawan

Ia akan kembali melakukan tur bersama Aerosmith pada musim gugur.

Jakarta – Lima tahun silam pemain bass grup musik hard rock veteran Aerosmith, Tom Hamilton pernah menjalani kemoterapi radiasi untuk kanker pangkal lidah yang ia derita. Baru-baru ini, kambuhnya kanker tersebut yang menjalar ke pita suara membuatnya harus kembali ke dokter yang menangani ia lima tahun lalu, Dr. Zeitels.

Menurut Zeitels, satu-satunya opsi untuk membuang kanker dari pangkal lidah Hamilton adalah dengan menjalani operasi radikal menggunakan KTP Laser. Namun, prosedur medis untuk penderita kanker pita suara tersebut beresiko membuat Hamilton kehilangan suara dan mengalami kerusakan saluran pernafasan secara permanen.

“Saya takut. Saya benar-benar berpikir, ‘Oh, saya tidak akan bisa berbicara lagi.'” kata Hamilton dilansir Ksat.com. Akan tetapi akhirnya Hamilton pun setuju menjadi pasien kanker pangkal lidah pertama Zeitels yang ditangani dengan prosedur tersebut.

“Ketika saya sadar, hal pertama yang saya lakukan adalah bersuara dan itu terasa normal, itu terdengar normal,” kata Hamilton lagi.

Pemain bass berusia 59 tahun yang merasa bahwa Zeitels telah menyelamatkan suara dan hidupnya itu akan kembali melakukan tur Mexico, Amerika Selatan dan Jepang bersama Aerosmith pada musim gugur mendatang.

(RS/RS)

Pak Fadil loses his voice, gets a mobile phone

Pak Fadil has recovered from his tracheostomy and can breath easy. Now he’s focused on a tongue operation. We’ve got him a new mobile phone to communicate (and listen to music).

If you’ve got family members at Fatmawati hospital you’d better have someone there with them. As many people as possible really. (My friend was a hospital executive for 25 years in the United States. He sas the same thing applies there.)

~~~~~~~~~~~~~

Pak Fadil sudah sembuh dari tracheostomy dan bisa nafas bebas. Sekarang dia fokus operasi lidah. Kami beli hp agar dia bisa komunikasi (dan dengar musik). Kalau tracheostomy, kita sementara tidak bisa bicara.

Kalau saudara anda lagi nginap di RSUP Fatmawati in South Jakarta, lebih baik banyak warga dari keluarga anda temanin. Tidak terlalu bisa tergantung pelayanan dari RS sendiri.

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Silent plea for help

Regarding Indonesian hospitals like RUSP Fatmawati, I’d have to say that there is a community nursing ethic: family members of Patient A trying to do what they can — maybe just by ignoring stray moans — to help out Patient B. It’s only natural to wonder if maybe you can/should help someone who seems to be suffering the way you are but more. And other times you’re on the receiving end, needing help from someone when you’re entirely outgunned and undermanned.

Pak. Fadil is out of ICU but had a life-and-death-type skirmish just before we walked into the room he’s sharing tonight with five other patients at RS Fatmawati. Blood, sweat, tears and a suction machine on wheels. In the fog of battle poor Mama passed out and another patient’s family –caught in the cross-fire — had to go out and call the nurse. With his two-day-old bracheostomy my father-in-law is learning to bring through a tube and communicate without speaking, all while trying to keep good and bad fluids down the right tubes.

So he can’t talk but he can write. But Mama can’t read. Heartbreaking really. She’s by his bed around the clock. I think we’ll have a cell phone for him shortly and he’ll perhaps be sending texts.  I don’t think he was particuarly aware he’d lose his voice (temporarily, anyway) before he went in for this procedure. So there’s a whole lot of adjustment on his part.

As Miguel de Unamuna has it:  La vida es lucha — to live is to fight. I have no evidence to the contrary. Fragile things that we are. Shaken, traumatized, and beaten down by illness of ourselves and others. But when you share a space and a moment and a breath of fresh air with someone you’re comrades. We’re on shifts now with everyone in the family taking a night.

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!

Pak Fadil @ Fatmawati

Great name for a blog, huh? Pak Fadil has been an in patient at 3 hospitals over recent weeks — RS Cipto, RS Fatmawati and RS Pertamina. So, if I weren’t so busy at the hospital, I’d be able to provide some helpful comparative and other information.

We like Fatmawati because it’s out in the suburbs and there’s more space. RS Cipto was built on a pretty bend of the Ciliwung River 100 years ago but it’s nearly an inner city environment now, or at least very crowded. People like RS Pertamina because of the reputation. Pertamina is the state oil and gas company. So it’s a reputable hospital. Also located not far where Pak. Fadil lives in Gandaria, South Jakarta. But the conventional wisdom is that it’s expensive. In theory can you use your SKTM, Jamkesmas, ASKES or other Indonesian government-sponsored healthcare plan? Yes. But in practice, no. If you know why that is, please comment below.

So Pak Fadil was in the hospital for over a week and ended up paying Rp 10 million. Whereas you might have ended up paying Rp 2 million at Cipto or Fatmawati. Yes, the care is better. Yes, there are fewer people to a room.

But most of all, Pak. Fadil is a bit traumatized by Cipto. I think it feels to him a bit like a prison or military environment. It’s like the patient is wrong, not just sick. There are plenty of exceptions and plenty of good people. But there is this weird burden of proof and it’s on you.

I’m headed out to Fatmawati with a couple of folks who want to visit Pak Fadil.

Pak Fadil Gets Uncleared for Brachytherapy

When doctors talk fast and agree to everything you say, they’re about to refer you to another doctor. When doctors speak slowly and clearly they’re getting ready to give you bad news.

Doctors use all types of ruses to avoid patient concerns including simply ignoring patients when they speak.

But when they need something from you — typically informed consent in connection with an operation — they’re surprisingly good communicators.

“I have some important information for you. This information is based on the decision of the all the doctors who are treating you. It is based on the facts of your case and is made in your best interests. First, we’d like to show you this MRI.”

Anyway, the doctor sure was speaking slow today. The news was that there will be no implant and there won’t be a glossectomy.

I can’t count how many times they’ve gone back and forth on the glossectomy. They try to blame in on the patient: “Not ready to have your tongue removed are you, sir. Well, well. Let’s see what our other options are.” But they’re always a couple of doctors meetings away from knowing if they themselves are ready.

I’m beginning to wonder if the brachytherapy “offer” (doctor’s own words) was half-baked as well. It began with a signed order, and progressed to blood tests, meeting with the anesthesiologist and a meeting with the patient, presumably seeking consent. But never anything like a date. Besides, do they just have small radioactive bits of metal lying around in the desk drawer. Doesn’t that have to be ordered? What does it cost. I don’t really know what to think.

One thing they didn’t ask for was an MRI. That was our idea. They were still referring to a CT scan taken before radiation therapy started and raised the question of cost and suggested maybe another CT scan would be enough. Not only did we end up paying for the MRI we had to scout around town to find a working machine that could take a picture of a tongue because the one at Cipto was going to be out of order for two weeks. (Cipto referred us to Cikini which, it turns out, doesn’t have the right machine.)

The MRI was part of the reason there’s going to be no brachytherapy. In fact — I had her repeat this a couple of times in colloquial Indonesian just to be sure — they’re not going to do anything.

Fine, a lot of times you can’t with cancer. But there’s a certain irony given all the hustle and bustle and talk of options and operations. To end up with “palliative” treatment and — upon inquiring about pain control — a referral to anesthesiology.

And they tell you to be there at 10:00 sharp to get the important information about whether your dad’s tongue is going to be removed. But they can’t be bothered to show up and give you the information. It was almost noon before Mona called in (from Fatmawati where she was helping another cancer patient this morning) and coaxed the doc downstairs by getting her to feel sorry for us.)

For months we’ve been focused on these apparently non-existent options the doctors have supposedly been debating. The brachytherapy isn’t an option because docs “aren’t sure” whether the area visible in the MRI that nearly bisects the tongue at the back is the tumor or what’s left over following radiation and chemo. Putting radioactive spikes in it might be the last straw if it turns it’s former tumor rather than actual tumor.

Somewhat puzzled (then and now) I asked, so why don’t you take a sample and see?

Doctor wills pencil purposively. “We can do that. Would you like to do that?”

Whoa.

Pak Fadil Gets Cleared for Brachytherapy

As part of a long, difficult, frustrating process Pak. Fadil has gotten in-principle clearance for this sometimes-successful alternative to “distance” radiation treatment and whose name refers to delivering the radioactive payload up to the very site of the tumor through some mechanical device.

So now we’re pushing through the tests and the paperwork with Mona assisting the patient (the doctors really) most days at the RS Cipto and Sema is often there as well. It takes a half day’s wait to see a doc. And if you want to act on the slip of paper you’ve received at the outcome of the visit, that’s another half day. But sometimes you can’t quite fit two medical errands into the same day. So you’re stuck coming to the hospital daily on an outpatient basis. If you don’t show up, you’ll find your case slips toward the bottom of the stack and there’s a lot of inertia involved to get re-started.

But that’s where we are. Restarted. No real breakthroughs in terms of how anyone is dealing with this. The patient has a hard time coping when there’s pain, the docs are only beginning to see this new operation come into focus (and we still need clearance from a lot of different people since it’s complicated on its own terms and by patient’s pre-existing conditions, such as diabetes and hard trouble).

But when grandpa’s not in pain he seems to enjoy himself and we certainly enjoy hanging out. There are no signs the cancer is spreading. But the tumor (located at the back of the tongue is over 4 cm at the widest part and obviously very difficult to remove.

That’s why they’ll try to spike it with needles and deliver the energy to it that way.

Kate Brown Speaks Talks About Oral Cancer

Tongue cancer survivor Kate Brown speaks in an interview speaks about recovering from a glossectomy and recovering from oral cancer. (Lida dia di ambil karena kankernya sudah besar. Walapun begitu, dia sudah bisa bicara agar orang bisa mengerti dia kalau cukup sabar.  Umurnya 32 (perempuan) dan tidak pernah rokok).

The San Francisco resident has been working as a health advocate for the Oral Cancer Foundation since recovering from her frightening operations last year.

She mentions the Foundation and points out something about oral cancer that we’ve also seen — how it affects such an important but difficult part of the body. The oral cavity is really something of a bottleneck.

“(OCF) was a lifesaver for me when I was first diagnosed and went through treatment. I was so scared. Any kind of life-threatening illness is of course terrifying, but this specific type of cancer affects so many aspects of everyday life. We all take eating and speaking for granted until they’re compromised.”

Unlike many people who have had a glossectomy Kate — age 32 — can make herself understood. This requires work on her part and the patience of listeners. But it’s a good result for having lost her tongue. The result depends on the procedure, including the flap of skin the doctors sow in place to cover the hole created by the removal of the tongue.

Radiation 60% finished — but the patient is always wrong

That’s the good news — Pak. Fadil has completed 60% of his total prescribed first-packet radiation treatments. The bad news is that the side effects are catching up with him. There may also be complications from his diabetes, but I’m now sure about that.

I do know it was a tough weekend for him and his family, culminating with a futile midnight visit to Cipto hospital to seek inpatient care. There’s nothing more frustrating that being turned away from ER. We’re used to it now, but I saw a young couple with very likely their first child, in her mothers arms, turned away. They were expressionless. They just couldn’t imagine what they were going to do now. They had come from who-knows-how-far to the “free” government hospital. Totally unaware that this is a good hospital and easy to get into.  The shiny airport-grade entrance with  people sleeping on the sidewalk under a small forest of satellite dishes might have given them a clue.

But that’s how Fahri pitched up at RS Fatmawati (Fatmawati hospital),  aged a couple days, and the reason Mona, swore she’d never go back. Well she has. As recently as this afternoon. I was there too, but not for long. I couldn’t take the heat the people — and being turned down by the Polyclinic doctor who described Mona as naughty for not attending to her father’s diabetes, one of several interlocking treatment cycles that also includes radiation therapy, chemotherapy, and a heart condition.

Mona’s not naughty. She is busy. Just this morning she had a meeting with prosecutors. They were tied up and told her to come back at two. But she had to cancel  because Pak Fadil needs another white blood cell transfusion and that requires her to first negotiate the price (through a process known as ACC), then go across town to a Buddhist foundation to get a signature for the entire amount of the deal since she never carries with her any more money that she’ll need for her taxi home.

Anyway, I bailed. I walked out of Poly, down the stairs, through this claustrophobic maze of buildings, across an old Dutch footbridge over the river, through Cikini market — one long roof, apparently at extension of the footbridge — to the Cikini train station where I caught a Bajaj.

It was just so frustrating to have the doctors blame us. Blame yourself, blame the government but don’t blame the patient, for crying out loud. Anyway, we’ve screwed up. Jepoardized the radiation schedule — now paused — because Pak Fadil just isn’t doing that well.

He’s lost weight. No surprisingly, given that his mouth is one big blood sore that keeps getting infected. He’s still pretty strong and pretty much trying to do the right thing.

But instead of a hospital bed what you get is this merciless list of boxes to check off — see the cancer docs, see the blood docs, go back to Poly, go to the pharmacies , all of which require a lot of time and often money. The second white blood cell injection (don’t know what it’s called will be nearly USD 200). And the money requires a lot of paperwork, too. But it’s always your fault, never theirs.

The doctor was nice, a good communicator and concerned about the patient. It’s pretty hard to fault her. All I can say is there’s a built-in failure rate and a lot of double talk.

There are 32 patients ahead of you. Sure you can have a bed. Well, that’s nonsense. People wouldn’t bat an eye at a wait like that. After all, queuing by proxy is the rule, not the exception, around here. People happily sleep on the sidewalk for as many weeks as it takes for family members to get better. Last night at ER there were 23 patients waiting for beds. Whatever. It’s just a way of saying.

And don’t believe them when they tell you the hospital down the way is almost empty! If you’re paying, they don’t want you either.

They’ll put you under observation in front of a security barrier where the ambulances unload almost as long as you like. It’s freezing cold despite the blazing lights overhead. But as long as you remain conscious without profuse bleeding or intense pain, you’re eventually going to have to turn around and limp on back the way you came.

All of which — for some reason — we weren’t expecting. Mona has been told (“by my people at the hospital”) that the back door to a bed at Cipto hospital was ER. I had my doubts and expressed them last night before our ill-fated venture, the second time in as many days I have done the crazy bule act before hapless (but perhaps not hopeless) young docs.

But today was a slam dunk. With the bapak unable to eat, drink, sleep, take medicine or continue his treatment, we all thought he’d go inpatient. That was what the cancer docs — Dr. Fauzi in the oncology unit, who the Bapak likes a lot — reportedly told her: take him to Polyklinik and we’ll coordinate it and that’s that. Get him stabilized so he can continue treatments.

Nonsense. It’s like dealing with cops. They simply lie to you.  Here’s your free hospital bed they say motioning to decoy on the other side of a trap door which is about to open under your feet. I’ve seen it a million times at RS Cipto and RS Fatmawati. Here’s the example that happened last night: doctors somewhere in the bowels of Cipto told her that, since the patient is being seen at Cipto (which he is) , then in the event of a real emergency, the thing to do would be to go to the ER at RS Cipto. It made so much sense. It was so not true, proven by the fiendish laugh of the immature resident at ER.  Trust him — there’s no connection.

As for the built-in failure rate, they really don’t expect you to manage with all the things on your “To Do” list. It’s not humanly possible to wait in that many lines before the docs go home. And it’s not humanly possible to come to the hospital every day. For one, it will make your patient sicker. Two, it will undercut the ability of the family to take care of the patient. Three, it’s enormously expensive and always a full-day affair no matter where you live, because of the nature of Jakarta traffic. And the docs know that. They know that a large percentage of the people at RS Cipto are poor.

So they flunk you out in ways that wouldn’t happen at other hospitals. Not intentionally. It just happens. More than at other hospitals — this is my theory — at hospitals like these docs blame the patient because he or she — for want of information, literacy, or something else did forget to do something.

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.

Sinar: (gamma) rays of hope

In Indonesian sinar — the word that is often used to desribe radiation therapy — means ray, gleam or glimmer.

Indonesians aren’t squeamish about health. They have a special grimmace-smile they used to describe the bodily ailments or suffering of others. But they always tell it like it is an you’re not likely to hear hollow, echoey pathos.

Anyway, here is some great mobile footage of Pak. Fadil on his first day of radiation treatment. Congrats to the person behind the mobile phone.

Kalau dalam Bahasa Ingerris, ray bisa berati cahaya dari matahari sekalian harapan. Makanya,  “ray of hope” itu adalah sinar harapan kita.

Selamat kepada orang yang di belakang hp, karena footage ini dari Pak. Fadil saat dia pertama kali masuk untuk radioterapi memang cukup jelas.

Informasi mengenai pengobatan radioterapi — yaitu pakai alat sinaran mirip alat ronsen — sangat sedikit di Internet. Karena itu kami berniat ngepost video ini biar orang yang tidak ada pengelaman bisa menkhayalkan.  Ternyata, seperti ronsen tidak sakit. Tapi efek samping terkenal sebagai berat sekali.

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)

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

 

 

 

 

 

 

 

 

 

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

Chair, answer to prayer

E patient Fadil was very happy about getting…

E-patient Fadil was very happy about getting zapped and poisoned today– in much better spirits than I’ve seen him for months. He attributed it mostly to the jamu (herbals) sent in from the countryside (kampung).He was also tickled that relatives in Surabaya had seen him on Facebook, by which he meant the Internet.

But all of us — including Pak Fadil — are also really hoping the advanced medical equipment at RS Cipto does him some good. Most of it’s brand new. He says it sounds like a war inside the MRI machine. The medical infrastructure, human support and positive attitude are in place. Just need a little Western medical magic.

  Mona looked five years younger. She enjoys sharing secrets for pushing papers and hospital staff to get stuff done within the public hospital system (it’s actually a public health insurance system).  But for months she’s been working on this one case without once having the satisfaction of seeing the patient receive a drug or operation judged to improve his chances of recovery. Until today. But she’s the one fighting traffic bringing her father to the hospital almost every day of the week till the radio-chemo regime has had a chance to work –30 sessions, I understand.

The radiotherapy unit is one of the hospital’s newest. Today at dust, when Pak Fadil was wrapping up his first session it was as nice as a spa in Bali.  For better or worse, there aren’t a lot of public institutions as large and serious as RS Cipto. This is Indonesia doing it’s level best. There was lovely mix of AC and natural air, plenty of windows with light coming in and lots of green outside. In fact, as with many of the old Djakarta buildings, there’s thin line between inside and out. Mama heard the call to prayer and went to pray.

But the Bapak was started on a story about his village back in Madura. It seems it’s built on ruins of a palace. But the funny thing, he says, you have to a long way before you find anyone who knows the story behind it. The closer to the village you get, the less people know. (Perhaps it was a noble exiled from Java?) He also mentioned how his father died — of a 3rd party curse. His stomach blew up like a huge balloon — and then shrunk . . . with the tides. Not sick at all, the doctors said. Perfectly healthy when he died. Except that somebody had put a spell on him. Pak Fadil’s mother died last year of cancer. (Luckily Sema and I had a chance to go to Madura and meet her about 3 years ago. )

Plenty more time for village stories from Madura. I do hope — and suspect, however, that this is the last generation where poor Indonesians can’t afford even the smallest dose of medicine to mix with the magic. If you can’t make it work, just call Mona.

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.

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.

Update: Well I didn’t go to the hospital today…

Well, I didn’t go to the hospital today, but everyone was happy with the result. Some hospital days are good ones. First, because 3 days ago they told us to go get an MRI and we didn’t really have any idea where to do it or how to pay for it. But two generous donations fell into place over the weekend. And we have money left over with which we want to buy Pak Fadil a recliner.

I won’t mention which hospital it was, but they were good to us today. And we got the MRI and rushed it back to RSCM — all on a “national pinch day,” which is a workday caught between a national holiday and a weekend where everyone who can possibly can stays home.

And so Pak Fadil is moving toward the head of the line and expecting to being radiation treatment on 19 May.

Yes, it’s strange to have to bargain over the price of an MRI, but it happens. Supposedly it’s free if you’re poor. Or mostly free if you’re mostly poor. But the devil is in the paperwork. So you often end up just kind of winging it.

“Just look at me, can’t you see I’m poor.”

That works. Being nice works. Smiling works. Being from the same ethnic background as the people as the people you’re negotiating with. Wearing a T-shirt with the logo of the government-owned company whose employees are always treated at that hospital could help. And most of all, knowing lots of people at the hospital. I’m not close to it, but there’s almost a team spirit — I just love this hospital. I’d never go anywhere else.

Ultimately — I think — the paper pushers there at the hospital pull a Robin Hood — take a few rupes from the hospital and give you a discount.

Cancer information in Indonesia ||| Informasi kanker Indonesia

||||Tidak ada banyak informasi kanker di Internet, tapi silakan ke Ayo Mari blog  duluh. Bagus sekali blognya dan banyak link juga.||||

There’s not much information on cancer in English or Indonesian.

The Ayo Mari blog is a good place to start. Like Get Well Soon, it has a bizarre mix of Indonesian and English. Yea!!

The blogger, T Sima Gunawan, is a Stage 4 breast cancer patient who manages an immaculate blog.

There is a wealth of information, including in Indonesian, about cancer drugs, radiotherapy, and chemo.

In addition here is a breast cancer support group, an Indonesia-based cancer information and support center (the “Cancer Club” ) and a page on Facebook about cancer in Indonesia.

If you need strictly English information, I see a newly-started cancer info thread at Living in Indonesia Forum where you could ask for it.

Finally, here’s the Indonesian Cancer Foundation link. You can translate the webpage automatically, although I can’t guarantee the results.

Cancer treatment at RS Cipto (Central Jakarta) — what to expect?

Our experience is mixed, so far. Compared to RS Fatmawati, another large public hospital located in South Jakarta. We felt we were in good hands. Cipto hospital has all the equipment and 100 years of foreign and local medical expertise. We saw plenty of other cancer patients being treated, even though they were not wealthy.

However, we realized the staff was very overworked. I sat in on the initial patient consultation when the biopsy results were delivered. The  doctor in charge couldn’t keep the cases straight. He spent some time informing my father-in-law about the treatment that was being given to another patient and he kept forgetting Pak Fadil’s name.

Once the young doctor got his cases straightened he warned the patient in very certain “There will be an operation and you, sir, should be prepared to lose your tongue.” In fact, doctors from “luxury hospital” MMC and top tumor clinic Proklamasi had already told patient that a hemiglossectomy was likely in order.

But within about 10 minutes of utter confusion the doctor’s recommendation had changed — no surgery possible.  Instead, the answer was radiation and chemotherapy.

Two or three other patients and two or three doctors were in the same small room with us. No one was waiting patiently for fear they’d lose their chance to talk to connect. The junior doctors were calling senior doctors on the phone repeatedly.

However, the doctors were friendly and trained to work under high stress conditions including the ones I created with my gentle on-the-spot complaint about “the patient’s right to information.” They admitted that they were overworked and slowed down their delivery just a bit.

“It’s OK. We understand. It’s good for patients to ask these kind of questions” they told the impatient bule.

Rumah Sakit Cipto Mangunkusomo (RS Cipto) is, I believe is Indonesia’s largest public hospital. It’s also a mature hospital (established in Dutch times around 1919) and boasts a new VIP facility. The radiation therapy unit has it’s own website.

Terima kasih kepada Teman Kami atas bantuannya bpk…

Terima kasih kepada Teman Kami atas bantuannya. bpk.padil tgl.16 bapak padil akan di MRI di RS.kami minta doanya. Mona merasa teman ini malaikat penolong mona.dan mona sangat banyak terima kasih kepada Teman Kami. Mona ingin bercerita tentang bapak mona yang sakit kanker lidah sudah stadiun 4.owh sangat kasihan sekali setiap malam merasakan sakit sekali dan mona bisa berdoa dan berharap.
bapak sesudah tindakan MRI lalu lakukan sinar rediasi lalu kemo lalu operasi lidah. Proses nya lama dan sangat mahal biaya nya .dan mona senang Teman Kami membantu biaya rumah sakit. Terima kasih semoga TUHAN yang membalas kebaikan teman kami.

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.

Update: friends we've had good fortune and bad After…

Friends, we’ve had good fortune and bad. After months of waiting for Pak Fadil to start radiation treatment at RS Cipto they sent us hospital shopping again yesterday because the MRI unit at Cipto isn’t working. I’m told we have to have MRI results for radiation to start at scheduled next week 19 May

Congratulations to Hazana who ended up 3rd in…

Congratulations to Hazana who ended up 3rd in her class this semester, despite having to deal with a lot of problems outside of school. She has graduated from Jr High and now has the option of studying at a public school, which (in Indonesia) are cheaper as well as better than private schools . . .

Update: so Mona was at the RS and Fari…

So Mona was at the RS and Fari, age 3 came along. He’s just like his Mom — walk up and talk to anyone. He finished interviewing a number of patients on their ailments and scored lunch — I’m told — with “some Christian grandmas.”

“And do I get an ice tea with that?” he wanted to know.

Mona had to collect him, eventually. Afraid the Chistians would kidnap him. Everyone’s always really impressed.

“Oh my! Such a mature young man.”

In fact, he does it just for his own entertainment.

Update: headed to hospital tomorrow Pak Fadil begins chemo…

headed to hospital tomorrow. Pak Fadil begins chemo. MAU KE RUMAH SAKIT BESOK; PAK FADIL MULAI PENGOBATAN CHEMO

Anak Mona hilang, dia lapor kpd wartawan habis polisi malas

MNC TV telah setujuh membantu kami mencari anak Mona. Jika anak anda hilang dan tidak ada siapa saja yang bisa bantu,  coba aja humbungi MNC TV.

Kalau anak anda sakit, anda dapat mengkirim surat pemohon kepada RCTI TV.

——————————-

A 5-person team from  MNC TV did a good job interviewing Ana’s family and neighbors this afternoon. If Niken  isn’t found, the report will air on Monday.

Mona ran into the TV crew at RS Cipto. Another  place you can look for a TV crew — if you need one — is the police station.

It was a little more difficult connecting with TV One and  SCTV. They didn’t show immediate interest;  however, SCTV allows you to provide data about missing persons which will be broadcast as text. Simply visit the SCTV offices located at the Senayan City mall and provide the information.

People who are desperately seeking medical care for family members also contact the Indonesian TV networks.  Public TV network Indosiar’s  Peduli Kasih operation and RCTI’s Jalinan Kasih program have provided substantial ongoing assistance to children and others who need operations. RCTI paid for at least one operation for at least one operation for 3-year old Soleha who suffers from hydrocephalus.

You can find patient and hospital records for tens of thousands of Indosiar  patients at the link above.  Indosiar also provides a limited amount of public health information in Indonesian, which is otherwise hard to find.

RCTV’s philanthropy program is know as  Pundi Amal SCTV .

Update: we're at RS Cipto this morning Pak Fadil…

We’re at RS Cipto this morning. Pak Fadil — as feared — has oral cancer. Mona, as usual, is positive.

‘We’ll have to operate,’ she reported by SMS before rushing home to pick up left-behind CT scans.

This will surely be another full day for her at the hospital. Traffic yesterday was worse than usual. If your timing is wrong it takes hours to move from one part of
*South* Jakarta to another.

We were prepared for the biopsy results but didn’t imagine they would come amidst such a difficult time for the Pak Fadil’s family. Ana ran away with her extremely violent and mentally ill ex-boyfriend a week ago. She’s only 15 and hasn’t completed her tests to graduate from junior high. She’s an excellent student.

No one I have talked to understands. We spent all Sunday evening posting ‘missing’ posters in the areas where Okky Syaifudin, age 17 and wanted by the police in connection with Ana’s alleged kidnapping in January. We located a house where the two had been the night before but the trail went cold.

Truly complicating things — in terms of Mona’s energy and other resources because no one doubts her willpower — her oldest daughter had a bad motor rcyle wreck over a week ago. She’s extremely lucky — as they say — and already out of the RS. (Any luckier and she wouldn’t have gotten on a bike with a friend who can’t drive them.)

Mona is back. Amazing. Fastest trans-Jakarta round trip in recent memory.

Pak Fadil’s biopsy results in less than a week

The biopsy itself went well. It’s a tongue tumor so it’s an easy procedure. Pak Fadil said his tongue felt better after the doctor removed a small tissue sample.

Oral cancer, of course, is not easy to treat at all and recovery rates aren’t very good. If the tumor is malignant, then the rear left side of the tongue will be removed.

Difficulties include:

• It’s even harder to swallow and eat after the operation than it was before
• Not much room for surgeon to move around with all the vital activities in the area (like breathing)
• Bleeding

Otherwise, you can recover from a glossectomy and speak and eat normally rather quickly. Whether you get the cancer is another matter.

As usual financial and medical concerns go together in the family’s mind. We hope you aren’t planning a biopsy, but if it’s a small one like this you shouldn’t pay very much. Why? Because that’s the guarantee the law provides to people who don’t have money.

Let’s say they ask you for Rp 800,000. You don’t need to worry about what percentage of that amount you will pay. Instead stand your ground. If you don’t have the money then you are covered by the law and the payment should be made for you on behalf of the state.

Don’t be surprised if the hospital agrees to accept substantially less than the full amount from you. Usually that is the case? So how much should you pay? This is a grey area in the law that we are researching.

On the one hand it is to the patient’s advantage to pay less. On the other hand, it is unclear whether the patient is properly following the law in doing so.

Pak Fadil’s biopsy is on Wednesday

Pak Fadil’s biopsy is on Wednesday

What we’ve learned at RS Cipto (Apa yang kita sudah mengerti di RS Cipto)

Mona feels like she has a better handle on the paperwork side of Cipto. So far the government-guaranteed health card is working. Still, there’s a fair bit of *nego* goes on before you know just how much you’ll be paying. Reason is because each of the Indonesian provinces has a slightly different version of the state subsidized health scheme. So even people on different sides of Jakarta are hearing a different story when they come up to the cashier. Also, it depends on how much you *can* pay. You will need cash at the “free” government hospital — plenty. Because you’ll be coming back again and again as your prepare for your operation — a lot of boxes, windows and things to check. To get you ready for surgery you’ll need about 4 or 5 whole days (means you spend the whole day at the hospital 4 or 5 times). Even if you’re camping out on the sidewalk outside the RS at night,  you have to eat. And you need money to get to Cipto hospital form wherever (in Indonesia) you live.

You see some very ill patients at Cipto because it has taken them a long time to gather the knowledge and money, do the papers, organize transportation, interpreters, interim caregivers, etc. Once you’ve got it, head on into Central Jak and begin negotiating the unknowns. Needless to say, if any of your paperwork is sloppy, they’ll simply close your case and you’ll have to start over. What does this involve? First you go to your “neighborhood unit chief” (the Pak. RT) on your block. Tell him you’re sick and pay him a buck or so in “uang rokok” (smoking money). And he’ll give you a signature. Next step is the Pak RW, also in your neighborhood. People tend to wait too long to get checked. Bring needlepoint or a novel or a blog to write. Taking into account Jakarta traffic, going to hospital (as an outpatient) always take the same time — 1 whole day .

Update: biopsy lined up means progress at RS…

[Editors note: This is really one of the most worrisome posts on this legitimately worrisome blog. Why after months of standing in all the right lines at RS Fatmawati did we fail to get a biopsy for a patient who had een told by several doctors — including one at RS Fatmawati — that he very likely had a malignant tumor at the back of his tongue (much harder to treat than the front)? ]

Many hours of waiting but great doctors, all the machines. It’s all lined up. Just need a date.

They ran the camera all around and it’s just the left, rear part of the tongue, no sign of bad tissue elsewhere. We’re thankful for that.

Pak Fadil’s brother was at RS today. He lives in Madura and doesn’t speak Indonesian. He came to Jakarta to help out.

We’ll be back at Cipto tomorrow.

Update: Ya sudah waktu balik ke RS Already time…

Ya sudah waktu balik ke RS. Already time to go back to the RS. Mona lagi di Cipto. Mona is at Cipto. Sara di PUSKESMAS. Sara is at the local branch location of the public health care system.

Tapi pasiennya Pak Fadil. But the patient is Pak Fadil. Dia mesti mulai pengobatanya untuk tumor. He must begin treatment for the tumor.

RS agak baruk untuk kita. Apa lagi penyakitnya. Doain. It’s a new hospital for us. And, what’s more, a new disease. Pray please.

Dokter Indonesia sering cari informasi kesehatan di Internet dan pasien juga mesti

Dunia ilmu pengobatan terlalu luas. Dokter-dokter Indonesia pun mesti cari informasi kesehatan di Internet.  Ini adalah survey dari IndoPacific Edelman mengenai pemakaian Internet oleh dokter-dokter maupun pasienya di Indonesia. (Detail biru yang di bawa katanya: MDs are not always right (dokter juga suka salah)

Internet Access is changing MD-patient communications in Indonesia: Edelman Survery

Apa kita dapat percaya informasi yang kita baca di Internet? Wah, tidak semuanya. Dari dokter yang jawap survei Edelman 19% jawap bawa mereka curiga ketelitian dari informasi Internet. Sekalipun 85% dari dokter itu tetap sering memekai Internet untuk cari informasi kesehatan.

Ada statistik satu lagi yang cukup menarik: dokter Indonesia sudah siap bahwa pasienny mencari informasi mengenai penyakit dan pengobatan di Internet.

Barang kali anda pernah dibantu sama dokter yang keterampilan komunikasi  . . . ya dibilang agak terbatas.  Dokter seperti itu mirip kamus jaman duluh — penuh informasi tapi diam habis. Dokter itu gampang memberi obat (karena biasanya kerja sama dengan apotik), tapi jika kebutuan kita informasi saja, kita merasa dokter seperti itu jual mahal.

Barang kali kita pikir:

Wah, tidak usah tanya dokter. Dokter selalu lebih tauh daripada pasien, kan? Coba setelah saya saya tanya dokter, jawapan dia  saya tidak mengerti.

Salah itu! Graphis ini mendemonstrasikan bahwa dokter Indonesia mengantisipasikan bahwa pasien-pasientnya cek Internet untuk memastikan informasi.

 

Q: Do you think the Internet has affected you in terms of seeking and sharing information on health issues?
How has the internet influenced your current behavior in obtaining and sharing information? Please rate from 1 to 4, where 1 means you completely disagree and 4 you completely agree with the statements. Asked only to respondents who say they are influenced or not sure if they are influenced by the internet. (Top 2 boxes)
N = 300
17%
19%
52%
56%
57%
70%
74%
84%
85%I am confused/overwhelmed by infoI question accuracy of infoI have more intense communication with patients
I get more conflicting info
I am more active in engaging healthcare co/org
I am more active in sharing info
I am more active in engaging fellow MDs
I obtain info faster
I am more active in seeking info

Pak Fadil released from hospital — thanks for your support!

Mixed news — Pak Fadil has been released from RS Fatmawati and is resting at home. We assume his heart and blood sugar have stabilized. He still has a tumor on his tongue which two doctors say appears to be malignant. But the treating doctor is still out of town. So no one seems to know what happens next. (How about a  biopsy?) He’s looking forward to resting at home until more.

Everybody knows you don’t leave the hospital until you’ve paid the bill. So how much does an “deluxe” room with AC and a view of the golf course cost at RS Fatmawati. About what you’d pay for a new model Ipod (8 gigs, sorry). This figure includes the transportation and food for family members traveling back and forth between Gandaria (home) and Cilandak (where hospital is located.