Tuesday 20 August 2013

The Price of Health

I hate going to my local chemist. Not because the staff are horrible, they're not. They are friendly and helpful. Not because they don't stock what I need. Even when they don't have what I need they are happy to try and get it in for me. Not even because travelling to, and waiting in line, is often taxing beyond belief. What I dread is the bill at the end. And the guilt that automatically goes with it.

The medications that keep me functioning each day quickly add up. And so do the bills. Hundreds of dollars a month to account for my various ailments. Some are covered by the Pharmaceutical Benefits Scheme which provides subsidised medications to the general population. Some are not. For some there are Special Access Schemes. For some there seem to be loopholes known only to a select few. Some, like my gaggle of supplements which I require due to issues with malabsoprtion, are not covered under any scheme.

I frequently receive emails suggesting I try this supplement or that medicine, or get tested for A, B, C, D. But the reality is that all of these options cost money. Money I don't have. I would love to try some other options. I would be thrilled to trial the drug that my gastroenterologist, neurologist, and cardiologist all agree has a good chance of taking care of some of my worst symptoms. But when the cost of that drug is more than double my monthly mortgage repayment, it's simply not feasible. 

Like many I try at times to stretch my medications. To make them last longer. To put off the inevitable soul crushing bill at the check out. But this can only be done for so long. Until your body lets you know in no uncertain terms that you need those medications to keep on functioning, even at a minimal level. I know from friends that there are many patients who simply don't fill their prescriptions. Who simply cannot afford to fill even the most basic of prescriptions.

So many of us suffer in silence. We struggle on. Many fall in the grey zone. Where the one partner who can work earns enough that you cannot qualify for a Health Care Card, yet don't earn enough to keep their heads above water thanks to ongoing medical costs. Those who do qualify are often living on such a limited income that they can still hardly afford their most basic health care needs, if they also want a roof over their head and food on their table.

I know we are lucky here in Australia. Health care is far more affordable than it is in other countries. But if you are unlucky enough to have a complex condition that requires highly specialised care from a number of different medical disciplines you fall through the cracks.

Medications are but the tip of the iceberg. With petrol prices on the rise, a trip to the specialist in the city can be prohibitive. Partner's and family members take unpaid leave to attend appointments, or if a partner is hospitalised take unpaid leave to take care of children. Many specialists and their tests are not even close to fully covered by Medicare rebates. Or if highly specialised enough, then patients are left to pay full price. Many patients have complex gastric issues requiring specialised diets. Again there is no coverage for specialist food products. Specialist exercise programs are recommended, yet again are not local and are frequently prohibitively expensive. Even something such as compression stockings, frequently recommended to aide in the management of Dysautonomia can be $100 a pair.

So often knowledge of programs that can help cover some costs eg for mobility aides like wheelchairs or walking frames, is held by select groups. If your treating doctor is unaware of the program you may never know of it's existence and be forced to try and scrape together enough money to buy the items that may simply allow you to leave your home or have a shower.

If your illness is rare, or poorly understood, you do not have the luxury of changing doctors. There may be only one or two specialists in your city, or even country, that know your disorder and can provide your care. There may be no options in the public sphere, so private fees must be paid. Often patients have searched far and wide to finally find a single physician who understands their disorder or the complexity of their presentation. For some, only a select number of specialists are authorised to dispense the medication they require.

I, like many, am a motivated patient. I want to be as well as possible. I want to stay out of hospital and prevent or slow any deterioration. But my care is complex and multi-factoral. It is managed through life style changes and aides, medications, diet, and exercise. Each helps to manage a layer of my complex needs. I see multiple specialists and have a variety of tests to both monitor my progress and try and discern why new symptoms arise. Each has a financial burden.

I would love to try new treatments, both traditional or alternative. I would love to do everything possible to maintain my health. But instead I must prioritise my needs. Yes, I need to go back to my gastroenterologist for my ongoing stomach pain and weight loss. Yes, I need to go and see about my hips that wont stay in place or my back which has me in constant pain. Yes, I need to get better control of my migraines. Yes, I need to see my neurologist about the significant loss of muscle in my right hand. Yes, I need to see about this or that. But I must select which of these is most pressing. I make a list that I gradually work through because to address all at once would be financially crippling.

None of these are one off expenses. Multiple appointments each year, both medical and allied health. Monthly prescriptions. Weekly dietary needs. The list goes on. And if more than one family member is ill, then these costs double or triple. In the short term this may be sustainable. But when a condition is chronic, the year-after-year costs, with no end in sight, become difficult, or in many cases, impossible to sustain.

The other price of health is the emotional toll. The stress and the guilt for the financial burden we place upon our nearest and dearest. Bankruptcies and relationship breakdowns abound. A toll that patients and their families everywhere, are dealing with in silence.

The reality is that health care has to be budgeted, alongside the mortgage, and school fees, and petrol, and insurance, and food, and....... It doesn't exist in isolation. It cannot be the only focus of a family budget.

The true cost of health is hidden.

The true cost of living with a complex and chronic illness even more so.

It's not pretty, but it is reality.



  1. Good on you Michelle. There is a comfy cosy feeling
    amongst those who are healthy that we do it okay in Australia.

    But things are frightening and cruel for the chronically ill. Its a little easier if you have the right kind of illness, one that is well known, and which has had a good lobby group for a long time. But those of us who are mysteries are not so much fun, for the medicos or the general population.

    And being not so very well, we mostly don't have strength for the kind of political noise we need to make. As we are talking Australia here, I wonder whether you know e.g. whether your illness would be covered by the new DisabilityCare. I have heard there is a trend to exclude illnesses as these are not real disabilities. [sigh]

  2. Thanks Bea. You're right we do have a feeling here that we are doing it so well. But as you say if you don't have a big/well known disorder with a great lobby group behind it, you just fall through the cracks.

    The last I heard chronic conditions like mine wouldn't be covered under NDIS/Disability Care, despite the fact it leaves me disabled. But there seems to be a lot of confusion.

    I do hate that so much depends on how well you can negotiate through the system. Which also requires non-existent energy, both physical and mental.

    1. Actually they are caught in trap with this one. Everyone has assumed, it seems rightly, that MS is included, as it should be. And I think MND, as well as few others which are well known. Clearly chronic disabling illnesses, which leaves a headache for those making decisions.

      And the whole issue of a clever lobby group, or even just a clever doctor who can work the system, becomes so important. Sadly I don't think the yellow wiggle will be enough to get you to this particular line. They are already worrying at their generosity.

      I won't go on, but it is an issue which means a lot to me.

    2. I guess I have the added problem that, as my neurologist points out, I'm one of a handful of her patients who will likely never have a clear diagnosis, so it's not like I'll have a 'label' to put on the paper work. They can tell me all the things that are wrong, that it is progressing and that I am increasingly disabled, that they think it's genetic, but I don't fit anywhere. For people like myself there is no provision in things like the current NDIS or any other programs. Care for cases like myself is piecemeal at best and unless you can self-advocate or have someone to advocate on your behalf you are pretty screwed.

      I do think NDIS is a great step forward, but I do wish it was based on level of disability and need, rather than specific diagnosis, although logic me knows there has to be a cut off somewhere. I already require a wheelchair or a cane if a short distance. It's only going to get worse but I wont be covered unless there is a change.

    3. "I do think NDIS is a great step forward, but I do wish it was based on level of disability and need, rather than specific diagnosis" - it IS based on level of disability and need, as well as on whether your disability is permanent or not. I guess they probably use diagnosis for deciding whether it's permanent, but with your diagnosis you'll definitely qualify as far as I know.

    4. Jeshyr - Earlier last year when my rehab team enquired into it for possible future care needs, it was told that as my diagnosis was vague ie just a severe neurodegenerative autonomic condition, rather than a specific recognised diagnosis eg MSA, I wouldn't qualify for NDIS. I haven't checked again since my diagnosis late last year.

  3. Michelle - you hit a lot of awesome points.
    As a dysautonomia/autoimmune/pituitary tumor etc. patient in the U.S. I can really understand the cost issue. We hae that new plan put in place by our so-call president called the Affordable Care Act - which makes care available to those here illegally or those without insurance - BUT deprives those of us WITH private insurance through our spouses' jobs or those who can still work - companies cannot afford to offer people like us that pay $10K+/yr for insurance the same benefits they did last year. So, drugs I need are now not covered. Visits to specialists (and aren't the ALL specialists) are a higher price. Visits are limited to a certain # per year. Sad thing is that this ACA will "help" these other people with these costs, whist those of us that are law-abiding tax-paying citizens get poorer care than those that are scamming the system. (Not sure if those of you in other countries are aware of the amount of fraud that takes place in our welfare systems here in the US - astronomical - "dead" people vote, collect money, see doctors - all on our tax money. All while people like us with rare, strange, hard-to-diagnose issues can't get the medical devices or medications we need, or see the docs that treat our oddities because the money is going to those that are not legitimately supposed to be in the US and are taking advantage of the system.
    The guilt is horrendous.
    The toll it takes on relationships and marriages is in itself sickening.
    These things just make our issues worse, as they stress our bodies even more.
    All the affirmations and platitudes in the world don't help when you husband is frustrated beyond belief with sheer cost of monthly meds, the number of doctor visits, the fact plans cannot be made because we are always sick...i'm sure you get it.
    Thanks as always for posting such a powerful piece.
    You are THE most realistic writer that suffers from this stuff I have read. Seriously. You have a gift.

  4. Good Lord, this post deserves both a standing ovation! There isn't a single point here which I can't wholeheartedly relate, too. We are very, very fortunate to have a percentage of some of my meds covered by the health insurance policy we get via Tony's work, but even with it, the bills stack up might quickly. Just this past June, I started on a new med that's nearly $400 a month, and another a few weeks ago that's close to a hundred. On top of the many existing meds and supplements, the number becomes frighteningly high some months. Countless things are scarified and/or budgeted differently for families like yours and mine, and the many others in our shoes, who aren't exceedingly well off yet have little to no choice but to pay for prescription drugs week after week, month after month, year after year for the rest of time. One can only imagine what the total bill will come if it were to be tallied up at the end of our lives!

    ♥ Jessica

  5. We paid $18,000 USD for our health insurance policy plus $7,000 in out-of-pocket co-pay and prescription expenses last year for a total of $25,000 of our after-taxes income last year - money that could have gone into a non-existent retirement fund or maybe to pay for our kids college education. We live in the US. This was for doctors to tell me to "stop searching for a diagnosis" and a few CT scans and blood test that came back normal - i.e. further from the dream of a diagnosis than ever. I have vowed that I will not go nor is my family to take me nor am I to be taken by ambulance to any medical facility ever again unless I am unconscious and on death's door. I am done. Done trying to find a doctor that isn't an arrogant, condescending idiot. Done trying to figure out what is going on in my body and what I may be able to do about it. Done giving them my hard earned blood, sweat and tears dollars only to hear them belittle and degrade what's left of my dignity.

  6. Even with the NHS here in the UK where healthcare is mostly free (other than dental, although this is free to over 60's, pregnant women and children and the same with opticians) the cost of my prescriptions is expensive. I thankfully qualify for free prescriptions due to limited mobility (if you can't get to the pharmacy yourself to pick your drugs up because you can't walk etc you qualify) however none of my medical team advised me of this. It was through my sister having the same illness that I found out I would qualify. For each medication in the UK the charge is £8.05 which to many people would sound quite cheap my costs would add up to £96.60 add in my husbands medications for asthma, psoriasis and anxiety (caused by me being sick) £48.30 a month. We live on a limited income, we are a lot better off than a lot of people but finding that kind of money every month is a struggle. Plus doctors here can not prescribe six months worth of medications ( so you would only pay £8.05 for each drug issued) they can only prescribe a maximum of 2 months worth. You can buy a prepayment card in the UK which costs about £98 (which is what my husband has done to keep his medication costs down) and you can have as many prescriptions as you need for that £98. However until this year you had to pay the £98 in one go which if you are on a limited income is a lot of money. They have changed it now so that you can pay monthly for that card. However there are a lot of people who don't know about the cards existence and pay the £8.05 charge for each item. The problem is there are schemes to help people but they don't help anyone if they are hidden away (cynical me believes that this is so they don't lose money). People need to realise that being sick is an expensive business the hidden costs are astronomical not including healthcare, home all day you're going to use more gas, electricity, water, food etc than you would do if you were out at work. There is the extra washing (so water and detergent costs), I no longer have a free uniform provided for me, so I spend more money on clothes, although I save on shoes being in a wheelchair now lol! It all adds up and yes the guilt you feel for adding to the financial burden on your family is great. Good piece as always MIchelle.

  7. Thanks, as always!

    Just curious, do you have Ehlers Danlos

    1. Not officially diagnosed, but myself and my youngest have multiple features and doctors always mention our dodgy collagen.


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