(source)
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.
Michelle
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.
Michelle
