Tuesday 8 November 2016

This coming Sunday is the end of known bad things in my life. Obviously not bad things, but all the bad things that I’ve known were coming.

Sunday is the day I can return home to my kids after completing radioiodine ablation for thyroid cancer. I’ve known about having thyroid cancer for a long time but this year the primary showed up; I had surgery to remove my thyroid in July, and a dose of I131 administered yesterday. Tomorrow I can leave the isolation room at hospital, on Thursday I can spend time around adults again, but I can’t safely touch or spend extended time with children until Sunday. Thus, Sunday, the end of the known bad times that have included the end of my business, having three jobs in the last year and change, V’s broken leg, and the neverending saga of cleaning up our life after moving house.

Thyroid cancer is a bit of a strange one in cancer narratives. It has a really good prognosis (especially at my age and current staging) and it’s not treated with chemotherapy or beam radiation until about the third line, so definitely a lot of physical trauma of having cancer and end of life thoughts and planning aren’t a big part of it. It’s “the good cancer”, “if you had to have any cancer!” from the point of view of people who see a lot of cancer. But there’s still a lot of bad stuff by the standards of healthy people. A second neck surgery for me (I’ve previously had parathyroid disease) with the increased risk of permanent damage to my voice or even, maybe, my breathing. More scarring. Four nights in hospital this year. A really rough anaesthetic recovery. My first experience of solitary confinement, however comfortable and cheery they try and make the isolation rooms (it has a kettle for making tea, a fridge, a window, I’m told I can get takeout if I want, and while the staff apparently have been refused their requests to get wifi here, the partly lead shielded room has surprisingly good cell reception). Surveillance for the rest of my life (recurrence is common), plus being completely dependent on thyroid replacement hormone, and all the niggles that go with that: for one thing it’s difficult to get blood from me ever and hormone testing every six weeks is actively making the situation worse.

So more on the chronic illness end of having cancer. But it’s been a rough year. At some point people started saying “I wonder what else could possibly go wrong for you this year?!”… and then at some later point, they stopped saying that because they started getting answers.

The other thing worth keeping in mind if you ever want to tell someone they got “the good cancer” is that there’s hardly a law saying that you’ll only ever get one cancer. In fact, given that there’s some genetic susceptibility involved in a lot of cancers, and a lot of treatments are carcinogenic, somewhat the opposite. Not really a lot to be said about that, although luckily radioiodine is fairly safe that way unless I turn out to need several doses.

Outside of that, the most memorable thing of the last four months or so was also time away from my family; visiting Mountain View and Los Angeles for work. Mountain View was a chance to get into bike riding again, as I could ride to work up the Stevens Creek Trail every day. A lot of it is wooded and autumnal, but my favourite part is the bleak portion under the powerlines between NASA Ames, Moffett airfield, and the tech company campuses. A storm rolled up one day (a somewhat pathetic storm by Sydney’s standards, but it was good looking) and I thought about Frodo and Sam on Mount Doom.

I’ve spent enough time in the Bay Area to constantly get the count of my visits wrong. It is, I think, eleven visits. One during my post university round the world trip in 2004; 2012 after Wikimania; twice in 2013 for PyCon 2013, and then AdaCamp San Francisco; once in 2014 before AdaCamp Portland; three times in 2015: after AdaCamp Montreal in April, shutting down the Ada Initiative in August, and for a job interview in September; and then three times this year, January, May, and October. But I’d never been to LA before outside of transiting LAX, an experience most people think is hellish but I think of as the first place I can buy cheap berries after arrival. I spent four days in Santa Monica commuting to Venice again on a bicycle, that time a bike share bike that I described to someone as having the turning circle of a hearse and probably weighing about the same too. A good thing to cycle up the beach slowly in any case. I didn’t know anything about Santa Monica before I arrived so everything came as a pleasant surprise; the bike share bikes, the hugeness of the beach, the people working out on the ropes and the travelling rings, the pier and the amusement park.

This was a work trip, and we went to Universal Studios as an off-site. I was decidedly mixed on that; it was a very hot day and extremely crowded considering it was a non-holiday Thursday. I would have enjoyed roaming more on a cool day perhaps. The best part was the Jurassic Park ride, which I compared to the Portal aesthetic. Everything is great in this futuristic faux-past parkland with peaceful herbivores and the calming voice of a senior scientist playing to us. Until more electric fences and empty boats filled with small, well-fed looking dinosaurs appear. And then the boat is “evacuated” into an industrial tunnel, “attacked” by an oversized T-Rex emerging from a waterfall (I’ve seen a T-Rex skeleton, this thing was oversized by at least three times) and dropped down the free fall part of the ride into a splash zone. The fastest fall is thus at the end, unlike most rollercoasters, I liked the tension building aspect a great deal. I also took the studio tour but wish that it took itself more seriously. I’d be more than fine spending an hour or two learning about the physical business of making movies without also needing to go through cheesy fake car chases, monster attacks, earthquakes, and Jaws reenactments. There’s probably nerdier movie-business tours I could take elsewhere in LA someday.

It looks like the shorter term travel I will do will be to New York though, which I am excited for. I’ve been twice, both times in summer, and both times overwhelmed by summer and New York together. I’m looking forward to learning more about New York when it’s not August.

Note: a lot of people are finding out about my thyroid cancer for the first time from this entry. I didn’t have a lot of energy to talk about it with folks… and I still don’t. You don’t have to reach out; but if you want to, I’d prefer something like a pretty or amusing photo to discussing my health or how I’m feeling or how you hope I am feeling.

No medical or other advice of any kind please, and I don’t want cancer or radiation themed jokes either.

The practical reality of contraception, Australian edition

Background the first: The practical reality of contraception: A guide for men, by Valerie Aurora, about contraception in the US

Background the second: A layperson’s intro to paying for healthcare in Australia which I wrote as specific background to this post.

Things that are the same in Australia

Contraception works the same way! The side-effect risks are the same:

Let’s start with estrogen-based hormonal birth control and health. I know women who get life-threatening blood clots on estrogen birth control (if the clot gets lodged in a blood vessel, effects range from loss of a limb to death). Others have mood swings so bad that their partners threaten to break up with them and their boss calls them into their office to ask why they’re so mean and bitchy all of a sudden. Don’t laugh – losing your partner or your job is serious shit, and many women decide to risk pregnancy and an abortion rather than the certainty of being abandoned and broke. Another side effect is feeling like you’re going to barf, which usually goes away after a few weeks, but not for everyone. More side effects and health problems abound, but those are the ones I know about offhand.

The mechanism is the same:

Now let’s talk failure rates. You have to take the birth control pill every single day, within a few hours of the same time, to get that 98% or 99% effective rate. Big whoop, you may think. I take my blood pressure medicine every day. Usually. Actually, it’s pretty hard, even with those little day-of-the-week labels on the pills.

Those are specific to the combined pill, but there is no special magical Australian version of contraception. Same risks, same side-effects, same administration, same failure rate.

Valerie’s description of providers withholding prescriptions to force a patient to have a pelvic exams is also true here, although they usually aren’t called pelvic exams: they’re called Pap smears, even though the bimanual exam is often performed too. However, they’re done slightly less often: every 2 years in Australia for low-risk women.

I believe doctors and pharmacists in Australia can refuse the prescription and the supply based on personal moral considerations, and that really sucks. However, it doesn’t seem as common except for the (sometimes publicly-funded!) Catholic hospitals, ew. (See Lauredhel’s “Pro-life” Archbishop Hart’s murderous misogyny and Catholic Church says “Thalidomide-analogue cancer trial? No contraceptive advice for you!”)

Things that are different

Cost

Very important! Many many many brands of the pill are PBS medications, and cost about $30 for 4 months’ supply, so, getting close to Valerie’s mythical $8 a month mark.

Moreover, other contraceptive mechanisms (except condoms, which probably cost about the same) are cheaper too. For example, in the US I understand that I would be out of pocket at least $500 to have a Mirena IUD. In Australia, I had the insertion performed in a public hospital (being elective, I had to wait about 10 weeks), and bought the device from a pharmacy for $35 as it is a PBS medication. Total cost: $35! Length of contraceptive effectiveness: 5 years! (Downside: needs to be shoved into uterus. However, this is easier to do if you’ve shoved a baby the other way.)

Trouble at the doctor

As in Valerie’s entry, scripts for regular hormonal contraception do need to be re-done once a year or so, and given the side-effect profile of the Pill, I can see why. (If your blood pressure is up, you probably won’t notice, but you should be off the Pill.) At least in major metro areas, getting a non-essential appointment to get a script re-issued seems less of a pain though: a few days notice and your clinic will get you in for the required 15 minutes. Also, most doctors will prescribe the Pill to a brand-new patient after a short verbal medical history (at least, if you mention a Pap smear within the last two years) and a blood pressure check, so you can pop into a bulk billing clinic if you have one handy.

In addition, very recent law changes apparently will allow pharmacists to directly supply a small amount of contraceptives (and blood pressure meds) to patients to tide them over to their next doctor’s appointment. (I heard this on the radio, so, sadly, no citation.)

Trouble at the pharmacy

Like other meds in Australia, this just isn’t as much of a pain. The PBS contribution, if any (Nuvaring isn’t covered, say), goes on before you ever go anywhere near the pharmacy, you pay the remainder yourself usually. So the fighting with one’s insurer step is gone. Moreover, while pharmacies do only fill scripts towards the end of the previous supply, the “towards the end” test is more generous: you have two to three weeks at least.

Summary

I think Australia really wins here, especially on cost.

A layperson's intro to paying for healthcare in Australia

I wanted to write a comparison post to Valerie’s The practical reality of contraception: A guide for men about the Australian equivalents. However, I realised a background in the Australian healthcare system might be needed. Hence this post.

Caution: I am not a medical professional or health administrator. There are plenty of details of healthcare payment in Australia I am blissfully unaware of. This is a guide to what it is like to pay for healthcare in Australia as a relatively healthy younger woman.

Summary

In Australia, many people in cities can see doctors mostly for free, and get free hospital treatment and pretty cheap pharmaceuticals. Yay. It isn’t the magical land of totally free though. Boo.

Medicare

Australia has government funded healthcare, called Medicare. Medicare is available to all Australian citizens and permanent residents living in the country. It is funded through the Medicare levy, a federal tax applied to people on moderate incomes and up.

To prove your eligibility for Medicare you have a Medicare card listing your name (often families are combined onto one card of which each adult gets a copy). In the absense of this card Medicare can verify coverage directly to health care services, I believe, but that’s more hassle. Most people carry their Medicare card in their wallet.

Further reading: overview of Medicare, tax guide to the Medicare levy.

Medicare pays for medical services: that is, (a fixed amount of) doctors’ fees and, for public hospitals, other costs associated with hospitalisation. That is, in Australia, you can for most conditions go to a public hospital, be admitted, and be operated on, x-rayed, diagnosed, etc, for free. Hooray!

The Pharmaceutical Benefits Scheme (PBS)

The PBS provides government subsidised pharmaceuticals to Medicare card holders. Basically, almost all common drugs are bought in huge numbers by the government at agreed prices and then sold in pharmacies to patients. No matter what the government paid, the patient will pay something in the order of $20 to $50 for PBS medication. Low income people can obtain a health care card entitling them to medication prices on the order of $5 or so.

Private health insurers (see below) may provide partial reimbursements for some non-PBS drugs.

People who have unusual drug needs (for example, some types of chemotherapy and painkillers, or a drug for which there are several PBS alternatives that for some reason you personally can’t take) can still end up paying huge amounts for medications.

Further reading: About the PBS, Health Care Card

Bulk billing, private billing, and gaps

Doctors’ fees are an important thing to understand here. A doctor in a public hosptial will bill the government for their fixed fee only (or rather, the hospital will bill the government, and pay the doctor a salary). A doctor working outside a public hospital has a choice, they can bulk bill, which is the jargon for billing the government directly, and which from the point of view of the patient is a free consultation. Or they can privately bill, and they can bill any fee they like. The patient can claim the fixed government contribution from Medicare. The difference between the doctor’s bill and the government scheduled fee is called a gap (not a “co-pay”, that’s American jargon) and it is often paid by the patient themselves, especially if the doctor was seen in their own clinic rather than in a private hospital.

The same can be true of other medical services like X-Rays and scans, or blood tests. There are some practitioners or clinics that bulk bill and some that don’t.

There are also some procedures that Medicare flat-out doesn’t cover. I mostly encounter this with unusual blood tests.

Availability of bulk billing

As above, public hospitals do it, and there are a lot of public hospitals. For non-emergency treatment or care for which there is contention, such as childbirth, the hospital usually has a defined catchment area, and will only treat in-area patients. So you have an assigned hospital, essentially, that will admit you and treat you under Medicare.

Outside hospitals, in major metropolitan areas it is often possible to find bulk-billing general practitioners, and, in some specialties, even bulk-billing specialists with their own practice. (This can have downsides such as shorter appointments or high practitioner turnover, but some private billing clinics have these problems too!) In smaller cities and regional and rural areas on the other hand, there is usually a shortage of medical practitioners and private billing can be near-universal. And underserved specialties often have near-universal enormous gap fees for out-of-hospital consultations.

There is some protection against enormous gaps. Some private insurers (below) have some coverage, and the Medicare Safety Net starts paying part of many gaps after you spend about $500 in a year on gaps.

Private insurance

Now, there is private health insurance, which you take out in addition to (not instead of) Medicare. What this gets you is:

  1. coverage of many expenses associated with choosing a private hospital (accommodation, operating theatre fees) and so on, and on some policies partial coverage of the gap amount on the doctors who treated you at the hospital
  2. coverage of some non- or partly-Medicare covered expenses, like dental, optical and physiotherapy fees (for example, Medicare covers eye exams to prescribe glasses, but not the actual glasses themselves), the jargon for that here is extras cover
  3. coverage of ambulance expenses in states where the state government doesn’t pay for them (NSW is one of the states where you pay for your own ambulance)
  4. coverage of a (usually pretty limited) range of non-PBS drugs

You can usually buy pieces of this too: eg, just hospital, or just ambulance.

As an indication as regards cost, private premiums presently start at about $150 for a family for a month, and a super-kickarse policy with huge yearly limits on extras and private obstetric care (this, psychiatric care and dialysis are often excluded from cheap policies) included starts around $350 a month for a family with adults my age. They actually have to get the federal government to approve their rate of premium rises.

Employers sometimes, but by no means always, offer private health cover. It’s usually a benefit associated with US-owned companies. (Google presently pays for my family’s private cover.) It’s not a tax-exempt benefit.

Why use the private system?

Here, the private system is anything where the patient may be billed. This includes:

  1. being admitted to a public hospital as a private patient, which is a choice they offer you, and the hospital bills you/your private insurer rather than Medicare
  2. being admitted to a privately funded hospital
  3. seeing a doctor or visiting a clinic that does not bulk bill

One major reason is that, as above, out of a hospital you simply may not have a local bulk billing practitioner. Or, if you are wealthy, you might, but you may have a personal preference for a particular practitioner who doesn’t bulk bill.

The other is to avoid the downsides of the public system:

  1. for some treatments, especially elective surgery (tangent, in Australian medical jargon, that means all surgery that isn’t urgent, it does not only mean “surgery for which there isn’t a medical need”) public hospitals may have long waiting lists, whereas you could get your treatment more swiftly in the private system, which may be considerably more pleasant for you!
  2. in the public system, you are not entitled to a choice of doctor. You get treated by the rostered doctor (often a registrar, ie, specialist-in-training in the appropriate specialty). In the private system (including a privately-paying patient in a public hospital) you appoint your doctor.
  3. public hospitals tend to have a lower standard of accommodation than private ones, ie, shared rooms, less light in rooms and similar. So, a class thing.
  4. quite a number of public hosptials are actually Catholic, and refuse proscribed services like abortion, tubal ligation, and prescribing or supplying contraception (whether publicly funded hospitals should be allowed to do this is an interesting question, but not really live, politically). Mind you, so are a lot of private ones, but since you can go to a private hospital of your choice, you can choose a non-Catholic one, and you may not be able to in the public system.

Nevertheless, as you can imagine, Medicare coverage suffices for many Australians even if they can afford private premiums. There are a couple of financial carrots and sticks used to encourage taking it up and, in theory, reduce the cost burden on Medicare.

Further reading: the Medicare levy surcharge tax on wealthy people who don’t take up private insurance, and lifetime health cover premiums in which your premium is locked to the age that you first bought private insurance at.

Comparisons with the US system

Improvements on the US system, based on my (very imperfect!) understanding of that system:

  1. the most obvious one is that when you lose your job you do not lose Medicare coverage if you are unemployed, or earn too much money, or earn it the wrong way, or are too old, too young, too healthy or too sick.
  2. likewise, you cannot end up with a health history that makes it impossible for you to be insured: private insurers cannot, by law, discriminate on anything other than age (higher age is higher premiums) or medical history, and the only permissable medical history discrimination is that they can (and always do) refuse to pay for treatment related to a “pre-existing condition” for the first 12 months of cover. Medicare does not discriminate other than on nationality and visa status.
  3. insurers don’t get involved in the details of your medical decisions. It’s fairly plain when something is covered and when it isn’t. There seems to be far fewer problems with “and then I presented my script in a month with a blue moon and it turns out that clause 197c2 subsection b means that I now pay for my medication myself this year”. Generally you and your treating professional make a decision, stuff happens, and Medicare, PBS and you collectively pay the same amount for it no matter who billed what when and who sacrificed which mammal to the gods.
  4. even privately billed stuff seems cheaper, probably because the giant single-payer forces all the prices down, and the fact that for things that Medicare doesn’t cover, you tend to see the entire bill, which seems to be more price transparency than the US has.

    As a price difference example, Valerie states that she had a USD 40 co-pay on Nuvaring. Nuvaring is not a PBS medication here and my private insurer didn’t cover it either. But I paid AUD 30 a month for it and that was the entire cost, not just a portion of it.

How to improve public health

  1. Discover or suspect that sedentary lifestyles are causing people health problems.
  2. Further discover to your shock and horror that people are doing this for such damaging inexplicable reasons as earning a living in an occupation requiring mostly/entirely sedentary desk work.
  3. Point out how easy it would be if people would just think a little and spend a bit more of their day exercising. Everyone wants to live longer right? People are so silly. It’s not like there’s some kind of counter-incentive encouraging them to do the job they’re paid for. They just don’t know how unhealthy it is to sit around all day!
  4. Break the exercise up into bite sized portions so as to point out that it’s even easier than people think. It’s not an hour a day! It’s 30 minutes a day! Plus 30 minutes extra, in small units of time!
  5. Profit!

There are even advanced forms of this manoeuvre. For example, you could set up some kind of cycle. Because people don’t spend much time with their children either! And they don’t cook healthy meals from scratch! And employers have noticed that their employees are oddly unwilling to work the long hours this tough economy requires! If we just remind them about all of these things, they’ll be able to find an hour a day to exercise, another half hour for changing clothes and showering and such for exercise reasons, an hour a day for cooking, a couple of hours for the kids, an hour for commuting, ten or eleven hours for the office and then there’s still the opportunity to remind them that seven and a half hours sleep is really only just acceptable and that we’re probably designed for more!

Oh, did I say an hour of exercise every day? Oops. That’s pretty nice of me. Actually you just need three or four. Caring for yourself: it’s all about the ‘just’.

The meaning of the word ‘healthy’

I’m not opposed to words having multiple meanings or even skipping around and settling on whole new meanings. As a matter of selfishness, I support polysemy, because my research field is lexical semantics. The more ambiguity, the better, say the ranks of computational linguists needing employment. And language change should be as fast as possible. No, faster.

Nevertheless, after a heated discussion around Health At Any Size/fat acceptance issues (see Don’t You Realize Fat Is Unhealthy? for one statement of what is up with that, note that I’m less competent to argue the merits than Kate Harding, or, possibly, you dear reader, so do your own research) I noticed one ambiguity that got in the way: the word ‘healthy’.

Here’s one definition: a person who is healthy does not have disease.

Here’s another definition: a person who is healthy is doing things correlated (or thought to be) with not having disease, or at least not developing further disease very rapidly.

And people slide around between these all the time, both as a matter of deliberate rhetorical strategy and as a matter of sloppiness. And there is thus some genuine confusion in which people almost slide right along from I work out three times a week to I will never die, or, actually, now that you mention it, age. Pretty much no one is completely healthy under either definition of the word, but best efforts under the second do not automatically make you healthy under the first (or vice versa). Nothing will. There is no magic bullet. As someone pointed out to me in an, alas, unquotable location, life, in fact, is something of an anti-magic bullet, in that the greatest risk factor for many diseases is age.

I think the biggest place this confusion happens is people saying I am so much healthier when they mean either I am so much fitter or I weigh so much less. Which becomes a problem when they actually think they mean I have less diseases now. Only possibly.