Though I've been a big fan of DailyKos since 2004, this is my first diary. This diary entry has also been in the making for over a year. I'd like to share my healthcare story - the story I've been living now for over a year.
I hope you've got some coffee by your side, because we've got the following to cover:
Prologue : My cultural and national background
Chapter 1: Endometriosis
Chapter 2: I discover US healthcare
Chapter 3: I discover drug company thug behavior and health insurance in the US
Chapter 4: I compare costs of surgery and drugs in US and Singapore
Chapter 5: More details of endometriosis treatment in Singapore
Afterword: Why I wrote this, and what to do if you know someone who needs serious medical treatment and has no health insurance
So, a bit of background on me. I'm a US Permanent Resident, and have only had this status since late 2005. I had entered the US on a K1 fiance visa and got married to my US Citizen husband in NC, March 2004. I met my husband at a writer's camp in 2002. Before that, the years of 1998 to 2000, I was in the US on a student visa earning my bachelor's degree. So most of my life has been lived outside of the US. It will matter to this diary where I'm originally from and grew up. I'm from
Singapore.
It's not in China. It's not part of Malaysia either, but if you thought Malaysia, then at least you were thinking of the right region - it's in South East Asia, south of Peninsula Malaysia, a little over 1 degree north of the equator. It's a "nation state" - a country without a "state" or a capital or a capital city because it's too small, just 270 square miles, not even 30 miles wide on its longest side. When I lived there, its population kept under 2 million. Now, it's 4.7 million. It's probably going to get higher. It's a country very set on wooing talent - and it's got the money and infrastructure to do it. Its current efforts lie in becoming an education hub and medical and technological research powerhouse. Not just in Asia, but in the world. It's currently winning US stem cell researchers into moving there.
Chapter 1
I have endometriosis. A bit of research online gave me the following figures: 5 million women in the US have it. (Some sites say that's 6-7% of the US women, some sources say 10% of US women.) I don't want this diary to get too medical, so here's my quick definition of endometriosis - it's the disease where it feels like your female reproductive bits HATE YOU. Painful menses, painful sex, and if you ever get to see diagrams of what your uterus and ovaries look like, you'll confirm that they don't want to behave and look like the diagrams in your biology textbook. Now it also looks like I may be able to partly blame my allergies on it, because I know my allergies only started at the same time I got painful menstrual cramps at around 15 years of age.
I've had all the symptoms of endo since 15 - and the monthly menstrual pain got to its worst while I was 17 years old, and never let up until after my first cystectomy at age 26 in 2005. For 2 days per month, I was a woman curled up in foetal position sometimes crying and always retching with pain. Painkillers only partly helped. I thought that was bad, at the same time that I knew women who thought I was normal. To prolong my ignorance, an endo sufferer once told me I didn't have endometriosis because my pain was nothing compared to her pain. (Believe it or not, I believed her until I met my Singapore gynae this month. I also have a piece of paper now that says I have endometrial cells in my pap smear, if anyone doubts it.)
Chapter 2: I discover US healthcare
In April 2005, when I was still ignorant of endometriosis and living in the US, I was lucky enough to have health insurance (bad as it was) and decided to find a US doctor who could prescribe something for my nasal allergies. In Singapore, my doctor had prescribed me "Flixonase" (the foreign name for Flonase) and I could buy it there for US$17 a bottle. Without insurance. I would find out later that a bottle of Flonase in the US would set me back US$70 a bottle with insurance.
So in Raleigh, NC, April 2005, while trying to get an American prescription for my nasal allergies, my new American GP recommended a general check-up and I agreed. As it happened, my abdominal area had swelled a little within the last few days, but I'd chalked it up to eating and air travel (I'd accompanied my husband to a writers' conference just the day before). My doctor gently thumped my lower abdomen while I was on the examination table and didn't look happy. When her nurse inserted the speculum inside me to take a pap smear, I hurt like hell, had to keep from screaming, and apparently bled profusely all over the nurse's hands. That was what began the mad rush to find me an appointment with a gynaecologist in Raleigh. My doctor and her assistant checked with several gynaes to press the point that I was someone who needed attention ASAP. In their opinion, I needed to see whoever could see me the soonest.
I got an appointment with Dr M eight days later. That's 8 days. I was annoyed. I thought that was a long time to wait, but apparently other gynaes had even longer waiting periods.
I went to my appointment. Dr M didn't even sit me on his exam table. I don't remember what we talked about, but I remember the appointment was short, only involved talking, and endometriosis never came up. (It never, at any point, came up from Dr M.) Dr M said I needed an ultrasound. So I expected one then and there. (In Singapore, in order to get my student and fiance visas, I'd had medical exams before. It is very common, when some doctors find a mysterious texture in the boob area, to get a investigative ultrasound on the premises immediately.) But then I was shocked to learn Dr M did not have ultrasound equipment, and had to send me to someplace else that could only see me later that week.
At the ultrasound clinic, the sonographer was the one who had the following conversation with me as she ran the transducer over my abdomen:
She: "Oh... oh...."
Me: "What is it?"
She: "Did your doctor tell you anything?"
Me: "No."
She: "But didn't your gynae say why you needed this ultrasound?"
Me: "No, but I bled when the regular doctor tried to give me a pap smear."
She was silent after that, and when it was over, she said one of my ovaries had 1 fair-sized cyst on it, and the other had 2 - one small, and 1 about the size of an orange. The sonogram would be sent to Dr M, who would see me again the next week.
I hated the delays, but everyone acted like it was normal, so I played along. I was also busy with a fulltime job, the one with the health insurance, which I was grateful for. Being a foreigner waiting on PR status, let me say this: I didn't have the papers at the time that would allow me to leave the US and enter again, so possibly seeking medical attention outside the US was not an option. (Let me stress when possible: US visas, travel permits, and work permits in real life are not as easy as it is in the idiot Hollywood movies and sitcoms where getting married to a US citizen is all one ever needs to live and work in the US legally.)
At my next appointment with Doctor M, I didn't get to see my sonogram, but he had a "to scale" diagram of the normal female reproductive system, and he drew my cysts on it, to scale. I kept the doctor's drawing. I scanned it. I emailed the image to my mum in Singapore. Unknown to me, she would go to see her own gynae and show the drawing to him. Her gynae looked at it and reportedly said "Your daughter needs surgery immediately."
But my healthcare hell in NC had only just begun. Because my gynae thought my surgery could wait. He also said a biopsy would also tell him if the growths were cancerous, but at the time he suspected (correctly) that they were just blood-filled cysts, and pretty large and advanced, and they would need to be removed. At the same time, he still wanted "to be sure" and before surgery, he wanted a more detailed picture of my insides to anticipate complications and so... he pushed an MRI for me. I wondered why he couldn't just operate immediately and I said so, but he insisted he needed more information before surgery, so we did it his way.
I had to wait over a week for my MRI appointment. It was, of course, somewhere else, performed by a third party. Throughout this ordeal of going to various appointments in different places over a month, my husband was patient, concerned and supportive and took me to the appointments because we had only one car between us - I've never learned to drive. (Didn't need to, in Singapore. Public transport.) I got my MRI in a small Raleigh building set amongst suburban sprawl. It was a new thing for me to see an MRI machine that was not in a hospital or medical complex.
Went to ANOTHER appointment with Dr M after the MRI, and he was finally ready to talk surgery. We scheduled it to happen in 2 and a half weeks.
Two and a half weeks of waiting. Why? Because Dr M only performed surgeries on Fridays. The first Friday coming up, he was going on vacation. The next Friday, he had another surgery. The Friday after that was the only time he could operate on me.
I asked why it couldn't be done sooner. He said he only did surgeries on Fridays, the rest of the week he took appointments. And the hospital at which he operated only entertained outpatient operations during office hours! And he had his vacation. And that other patient. I had no choice but to wait. Even though I could feel and see growth of my ovarian cysts with my own eyes from the outside. As my surgery date inched closer (too slowly), my cysts were advancing and growing rapidly, but Dr M stuck to his schedule despite my complaints that I was getting huge, fast. (I was looking pregnant for Christ's sake, and I was not pregnant. Some of my clothes were no longer fitting me.)
I read up on the symptoms of cystic rupture. The day before surgery came. I had been prescribed a laxative before my surgery. I was warned to expect discomfort. I did not expect complete PAIN.
I was in pain that was worse than any diarrhea or menstrual pain I'd ever gotten in my life. It lasted the whole fucking day. I had cold sweat, my muscles were absolutely useless, wrung out by pain spasms. Someone was twisting a sword in my gut. I prayed that I would pass out. I cried a lot. I was nauseous from it all. I could only get around by crawling. I couldn't even walk when helped. I had to crawl. I couldn't stand being carried. I was so huge by that point, and in such complete hell, I thought it was possible that a cyst had ruptured. I was in no condition to pick up the phone to even tell anyone this. My husband was home with me and was tbe one who called Dr M and explained the situation and my suspicion.
According to my husband, Dr M was merely amused and said everything I was suffering could be explained by the effect of the laxative. This is the only time I will curse Dr M: The fucktard might have been right, but he was lucky. Because the next day, I had my laporoscopic, minimally invasive, "day" surgery.
It turned out that I had FIVE ovarian cysts in total to remove by that time. All filled with old and new blood, crowding my abdomen. Rupture the day before would have been completely within the realm of possibility. One of the cysts was the size of a softball. It was also compared to a large grapefruit. My doctor had estimated that my surgery would last 1.5 hours. It turned out to be close to 3. My husband was worried out of his mind. When I got out of the operating room, that outpatient section of the hospital would close in less than 2 hours. But I was horribly nauseous and sick from anaesthesia. Even after they kicked me out, I knew I had been in no condition to stand, to sit, to climb into a car, to walk to our apartment, walk to the bed and get into sleeping position. Everything I did hurt and I wanted unconsciousness. But it was "day" surgery. I went with it. Maybe I was just being a wimp, and besides, I couldn't afford to be warded overnight. (I was in a bad state. Now I've just found out that the same surgery in Singapore is NOT ever, in any Singapore hospital, treated as day surgery. Laporoscopic cystectomy takes at least 1 day of warding and observation in a Singaporean hospital.)
After the surgery, I was prescribed 6 months of a drug called "Lupron" to stop my periods and prevent any new cystic growth on my ovaries. After Lupron I would be tranferred to 6 months of Seasonale. I was prescribed a monthly dose of Lupron (3.75 mg). Enter my drug company/health insurance nightmare beginning May/June 2005.
Chapter 3
One 3.75mg shot of Lupron costs US$682 without health insurance in the US. I would need this shot monthly. If your doctor administers the monthly injection, you'll have to add the fee of seeing your doctor to get the Lupron injected into your butt. At least I still had health insurance. We were given the estimate that we would only pay about $110 per month for the cost of Lupron with my health insurance plan. (My job was in Raleigh. But my employer was based in California. So I was covered by BCBS of CA.)
My first bill from Curascript, which distributes Lupron, and whom I had to deal with directly every month in order to get the Lupron delivered to Dr M, was $350 for the first month of Lupron. It was $100 for my share of the cost of Lupron, plus a $250 penalty for not informing BCBS about the Lupron treatment before it started. Now, I KNOW my doctor's assistant was going to take care of this. And let me stress that for this, my doctor and his assistant were faultless. The party who had failed to informed BCBS about the Lupron treatment before the fact was Curascript.
The Curascript CSR who revealed Curascript's mistake had erred when she told me this. Because it became the center of a long fight between me and Curascript and BCBS of CA. To sum it quickly: I refused to pay to the $250 penalty. Curascript refused to drop the $250 from my bills. They also refused to deliver my next short of Lupron if I did not settle my outstanding balance with them. For about 2 months, the $250 penalty did not go away, and at one point when Curascript threatened to not deliver my third shot of Lupron, I cried, I broke down at my day job (the only time I could reach the CSRs of BCBS and Curascript), and yelled at a Curascript supervisor over the phone while at the office (and I worked in a cube). I also sought help from the NC attorney general's office that helped with health insurance disputes (the Managed Care Patient Assistance Program).
MCPAP was a big help and spoke with both Curascript and BCBS of CA. Curascript dropped their $250 penalty. But subsequently we still paid Curascript an extra at least $250 anyway because they found a way together with BCBS to charge me more than $100 per month because of new changes in BCBS' coverage policies. I know Curascript got around $1200 from us by the time my Lupron treatment was over. I suppose I can view this experience by calculating how much it would have cost me without health insurance: $4000 just for a 6-month post-surgery drug treatment. (I've since found online communities where US women with endo can't even get their Lupron covered.)
If I sound naive with my incredulity at US healthcare costs, again I stress: I'm not originally from here. And now I'm going to throw out numbers: the numbers of the cost of treating ovarian cysts and endometriosis - in the US and in Singapore. Singapore, surprise surprise, has always been a destination for medical tourism. People from Asia and the middle east like the level of medical care and the cost of medical care here. Lately, the local newspaper revealed that Europeans and Americans are heading to Singapore for whatever ails them.
Chapter 4
Alright, no more suspense. Let me give my numbers now:
Item | Cost in US without insurance |
Cost in US with insurance |
Cost in Singapore without insurance |
Gynae consult co-pay | $80 | $20-$30 | US $35 |
Lupron 3.75mg | $682 | $102 | US $250 |
Laporoscopic Ovarian Cyst Removal | $16,000 day surgery in Raleigh, NC | $5000
| US $2,000-$4,375* 1-2 days ward |
* Figures from
the Singapore Ministry of Health and quotes from 2 of the biggest Singapore hospitals. I used this exhange rate: $1 USD = $1.6 Singapre dollar, though the US dollar is slowly getting weaker. The totals for cystectomy includes doctor's fees and ward fees and operating room fees - everything except the tests before surgery. For this procedure in Singapore, hospitals expect patients to be warded 1-2 days, and as mentioned, this cost is in the total.
Also, to be honest, I approximated the cost of my cystectomy surgery in Raleigh, NC downwards. I could have been more accurate and checked my bills for the exact figure, and I would also have needed to do some math because we received some other bills from third parties related to the surgery. But that would mean looking at the bills, and I just do not have it in me to do that, ever again. The whole experience of treating my cysts within the US has been painful, more painful to deal with than endometriosis itself. In contrast, when I shared my US cystectomy story with my friends whom I still contact in Singapore, one of them said one of her ovaries had had a cyst, and she had had it removed for US$1,000 within the space of a week from the time of diagnosis. In Singapore, of course.
Chapter 5
What made me write this diary now? Well, I just returned from Singapore, where I was visiting my parents beginning late June 2006. While I was there, I visted my mum's gynae, and I learned I have ovarian cysts, again. Two, in fact. Endometriosis sucks. But what nearly made me break down in Dr O's office was this the fact he said I'd have to be treated with Lupron again. When I heard that, the hardest thing for me to accept was having to deal with Curascript again if I pursued this treatment in the US. So right then I decided to get my Lupron treatment in Singapore. Curascript is never getting a direct payment from me again. The second thing that nearly made me cry was the following conversation:
Me: "How soon would you be able to operate on my cysts if I decided to have it done immediately?"
He: "Anytime also can.* You want tonight, or if you want tomorrow, it can be done."
(* Some Singaporean style English for you. It just means "anytime.")
Me: "What? Really?"
He: "Yah." At no point did he exhibit any expression on his face except concern, and he looked me in the eye.
Me: "You'd be able to do it anytime I ask for?"
He: "Ya, anytime. The sooner the better of course. Just tell me, we can arrange it."
When I told my husband about the conversation, he was amazed, even with the other personal Singapore healthcare experiences he's heard from me. Among other things, my gynae's practice in Singapore:
- is "private", as opposed to a government clinic in Singapore, but still affordable. I can also get appointment with the doctor really quickly, within the same week whenever I call, if not the next day.
- never made me feel rushed. My first appointment with Dr O lasted an hour. All my appointments with Dr M in Raleigh had NEVER gone over 10 minutes.
- was the one who gave me a pelvic ultrasound on my first visit to him, and showed me my sonogram images, on screen during the ultrasound, and on paper after. This never happened with Dr M.
- educated me on endometriosis, and let me know it was a chronic problem that would keep giving me cysts until I had a hysterectomy, something Dr M never raised with me
- (and this is NOT unusual for ANY medical practice in Singapore) my gynae's pharmacy/front desk at the premises had Lupron - I mean, Lucrin, the foreign equivalent, at the price I quote above. In Singapore, when you see a doctor, you pretty much get your medication at the same place. I was once asked by an American how Singapore doctors can't abuse the system and run a racket on drugs in Singapore. Well, to answer that, one has to know that the vetting of Singapore doctors is very, very strict, and any abuse found carried out by any doctors pretty much expels him from medical practice in Singapore. Malpractice suits in Singapore are very rare.
- Quality of medical attention? As a female, and as someone who has had to get check-ups regularly for visa requirements, I haven't had the quality of healthcare in US that matches what I get in Singapore yet.
If you explore the Singapore Ministry of Health's website, read their mission statements. One thing I've always liked about their approach to health: when government is partly footing the bill, that government has a lot of incentive to keep its people healthy, and to educate the population on how to do so. Singapore costs are kept affordable in two ways - the MOH fucking put it in their mission to keep healthcare affordable in Singapore (and then they do it), and Singapore has both public hospitals and private hospitals. Both types offer competitive quality and price. Competition can work - done right.
I apologize if you get the impression I'm oversimplifying, but I think the length of this diary is already quite epic. If you have questions, I'll respond to comments as best I can.
Afterword
Why really am I writing this? Because I'm sick of seeing arguments (more in real life than on DailyKos) that the only healthcare systems possible or available in the world is no healthcare, US healthcare and Canadian healthcare where you have to wait 3 months to a year for life-saving surgery. That is complete bullshit.
What else makes me mad? That I love the US in many ways, but when it comes right down to it, I can't trust my health or my life to this healthcare system, and neither do I want to anymore. But, I come from a place that's given me a very unique perspective of what's possible.
I don't want to oversimplify and I have to be fair: Singapore and the US are very different countries, and size of their populations and the responsibility that their governments accept are at opposite extremes. But the biggest tragedy I see here in the US is failure of education, philosophy and vision - many people still think, despite all worldwide numbers to the contrary, that American healthcare is the best the world can do. What perpetuates the failed system is the spoonfed bullshit is that no one can afford a system that tries to take care of everyone, not just the rich. And of course, the neocon myth that free market will make good healthcare system. As long as sheeple believe these falsities, bad legislation follows.
I am also angry that people in the US have to suffer this system. I am pissed and incredulous that anyone can literally live with this. I hate debt, and debt is inevitable here if you need surgery to live or preserve your quality of life, or if you suffer an accident, or if you're simply sick because you live in a place where pollution controls are gradually being worn away by a corrupt administration, while new and nasty environmental poisons are being concocted and released unregulated. Poor food with no nutritional value is the cheapest stuff flooding the market. TV brainwashes too many people into ingesting and imbibing complete crap, and counter-education only reaches the lucky and more well-off. The poorer you are, the sicker you are, and the less able you're able to afford healthcare in a system designed to make people poorer and sicker and then punish them for it.
What else?
I wrote this because all the political ranting in the world will not save your health if you've been handed a diagnosis that you need surgery and will suffer a chronic condition for life. And while I've been waved off before when I suggest medical tourism to Americans, I will still push it here, because someone reading may find some hope or a real solution in considering this path. You can find further figures, caveats and information by Googling medical tourism (and Singapore, Malaysia, or India or whatever country of your choice) and broadening your search from there to find other Americans who've done it, and where they sought their treatments that they did, how much they paid for surgery, travel and accommodation, and the quality of care they received. Forget your assumptions that every country out there that isn't America is a third world country.
I am not advocating that the solution to US healthcare is to go overseas. I believe Americans deserve a better system. But in the interim of waiting for this broken disaster to be fixed, there are people who may benefit from knowing that their options are NOT limited to crippling debt or ill health (or death), surgery in Mexico, or a long wait in Canada. If you need to save the life of someone you love, and you know you can't afford what it would cost in the US... consider thinking outside the box and doing some travel.
I'm still living in NC for now. I have no day job but I freelance and I don't claim unemployment checks. I have no health insurance. My husband and I are not destitute, but we don't earn a lot. He's an adjunct English professor trying to become full-time, but also feels he needs a Phd to become the professor he wants to be. We already have 5-figure debt from him pursuing his Master's degree. He has no health insurance either.
I'll be returning to Singapore in September to get my latest cysts removed. And I chose September, not my doctor. He recommended sooner, but I wanted to delay the surgery for some other hefty life reasons, all brought on by Dr O's diagnosis. So now I'm on Lucrin to suppress my cysts until my surgery.) Having my surgery in Singapore this time, now that I have the proper papers to travel, was a no-brainer decision.
Writing this was by no means easy. I've long kept diary silence on DailyKos because I'm one of those rare people who feel less "free" in the US than in my home country. (If you're curious, I will explain why in comments.) I've also been worried about trolls. But I am not generally softspoken. I've simply learned from experience that many people think I'm lying or exagerrating when I talk about Singapore. Or then they tell me to leave the US, and trust me, I'm seriously thinking about it, now that my husband's got his Master's.
This broken healthcare system in the US is immoral and is not serving its people. It is unfair to the millions who suffer it and know no other way for it to be. Just as it would be wrong for a third world country to make its people pay corporations with blood for something as essential as drinking water, it is wrong for any government to let drug or health insurance corporations exploit a population, ANY population in the world, for healthcare. Healthcare is not and should never be luxury goods.
Health and happiness be with you, and thank you for reading.