Health Insurance

I got the quote to get my tooth fixed, $2700.  Then I went to my health insurance company to find out how much was covered: none. That's major dental, and I'm only covered for basic dental.

Guess what?  It looks like I'm just going to keep having an empty space in my mouth, and keep getting food stuck in my gum until I learn how to eat without using that part of my mouth.

In a sense, it's my own fault I don't have a health insurance that covers this.  I recently gave up my hospital cover, deciding to trust the public system, and just kept basic extras cover.  The reason for this choice was simple:  I just couldn't afford it, and the public system has always been there when I needed it.  (A couple of times I've been rushed to an emergency department in severe pain and had surgery within 24 hours - for service like that, I'm happy to wait my turn when whatever I need isn't urgent.) When I've been able to afford hospital cover, I've opted for the private system to leave space for someone who needed the public system.  I've just had to come to the decision that I can't afford the private system anymore.  (Isn't it wonderful to be in Australia, where we have that choice?)

I could have chosen eat less, or sell my car, or give up my pets, to keep the hospital cover, but I chose to sacrifice the insurance - however with hospital insurance, went the "major dental".

Extras cover, I could keep for about $30 a month.  Now, I am trying to decide if it really is necessary.  With a chronic illness, I can get some ancillary treatment on a teamcare program managed by my doctor.  I can get up to five free visits to a physiotherapist, dietician, psychologist or podiatrist each year.  That doesn't cover optometrists, and the previous chronic illness dental program has been axed.

I've checked, there is a government program for glasses, but it doesn't cover graduated lenses.  And there is a community dental program.

If I just saved the money I've been paying in extras cover, I might just about cover the difference between what's available publicly and what I have now anyway.

So the question is: is health insurance worth it at all, particularly for a middle-aged woman, with a chronic illness, living on a low income?

A great place to compare health insurance policies, without having anyone try to make money from you is the government comparison site: http://www.privatehealth.gov.au/.  After looking through, I can't find any that I can afford that would do everything I need.

So, I've given up hospital cover, and while I'm thinking about it a bit longer, I'm leaning toward giving up extras cover as well.

If I were designing a health insurance policy for someone in my position (middle-aged woman, with chronic health issues, living on a disability support pension):  it would include, all dental (forget major/minor - just teeth stuff done by a qualified person up to a set limit); all the usual things that are possible with ageing and with chronic illness (so everything from hearts to joints to brains); it would cover physiotherapy, psychology, eyes, dietetics and pharmacy.  It would not cover pregnancy, assisted reproduction and random alternative therapies. There seem to be lots of cheaper policies aimed to get young people into health insurance, but there don't seem to be any affordable ones for people at my life stage.

Glad To Be Australian

I had an interesting conversation with my rheumatologist yesterday about the cost of managing lupus.

In Australia, as a pensioner, I pay about $6 for my methotrexate.  That's what it costs under the Pharmaceutical Benefits Scheme.  When I've paid a certain amount on medications for the year, they're free from then on.  Overall, including what I pay, and what the government pays, the methotrexate actually costs about $120, because it's a drug that's been around a long time and it's quite cheap.

Dr K asked me to guess what it cost in the USA.  I guessed about $2000, because the US is notorious for the high cost of healthcare. I was way off.
It's about $5,500. (Health insurance companies would pay some of that, if the patient has health insurance.) The government there isn't involved in purchasing drugs, and doesn't negotiate the price.

I'm sure America's a much better country to be a drug company - but as a patient I'm really glad I live here.

So my rheumatologist tells me that American patients can find it cheaper to fly here to see a specialist and buy medications, than to have their treatment there. (If you're not covered by the PBS, that methotrexate would be $120 here.)

I'm finding myself wondering how to start a drug smuggling ring - to smuggle methotrexate, prednisone, plaquenil, pyralin, all the usual lupus meds to people who really need them.

Pathology Costs

http://www.dontkillbulkbill.com/

A little while ago, the Federal Government decided to stop paying the bulk billing incentive payment for pathology tests.

Without these payments, pathology services may be forced to pass on costs to the patients who require the services.

Stop and think a minute about all the blood tests and other pathology tests you regularly have.  If you have to pay for them upfront, what will that mean for you?

I know that one of the effects of lupus is that very many of us either can't work, or can't work full-time.  That means money is pretty tight for a lot of us.

What would happen if we couldn't afford our tests? Well, some people might not be properly diagnosed to begin with, but also lupies wouldn't have the ongoing checks on our disease activity and how well our drugs are controlling our condition.

I Don't Mean to be a Burden

If you watch the news some days, you might be forgiven for thinking that the Disability Support
Pension is overly-generous and given to far too many people.

Headlines like "Disability Support Pension Burden Hits $17bn This Year" do nothing to  make people think that perhaps people who need the pension are not getting it.

The idea that the DSP is out of control, and needs to be brought back into line, has been supported by three successive responsible ministers: Kevin Andrews, Scott Morrison, and now Christian Porter. Clearly with changes of minister, and even a change of Prime Minister, the Government's view on the DSP hasn't changed.

It is true that the number of people receiving the DSP has reached record levels.  It's also true that the actual population of Australia has reached record levels.  Add to that, that the retirement age (particularly for women) increased about a decade ago, so people have spent more time on the DSP before moving to the aged pension, and the increase is not all that dramatic.

The government has begun working on ways to reduce the cost of the DSP.  In the 2014 budget, DSP recipients under 35 had their ability to work reassessed. It was planned to remove as many people as possible from the pension.

The rules for qualifying for the DSP have been tightened up, to the point where a terminally ill man was refused the pension, on the grounds that he could recover and return to work.  The effort to save money by not granting the DSP has lead to the administrative cost of dealing with appeals.  Ten percent of appeals have resulted in the appellant receiving the DPS.

Long before these rules were tightened, I knew a number of lupies whose doctors insisted they stop work - but who Centrelink refused the DSP to.  This begs the question: when a lupie's own doctors and specialists say don't work, and the Government says you can't have DSP, how is the lupie meant to survive?

Another means of saving the government money has come from a new way the government assesses income from defined benefit superannuation funds when considering the amount of pension paid.  This affects both aged and disability pensions.

The rationale behind this was that some couples were getting $120,000 per year from defined benefit funds, yet were still able to collect a pension.  On the surface, that looks like a significant loophole to close - but not everyone on a defined benefit fund receives that kind of money.  I receive about $6000 a year from my superannuation fund, and that has been enough to cause my DSP to be reduced under the new assessment rules. My income hasn't gone down quite as much as some other people I know of, but it will mean a tightening of my personal budget. (My personal budget is going to be more stressed, because one of my regular medications is no longer subsidised under the Pharmaceutical Benefits Scheme. The drug, paracetamol, was cut from the scheme, because it's a cheap over-the-counter medication people take once a while for headaches and minor pain,  except when it's in the higher dosage everyday version for people with chronic pain.)

So the squeeze is on for people with all kinds of disabilities.  Getting a pension is getting harder and harder.  Keeping it isn't guaranteed. And if there's any "loopholes" out there that mean some people are getting more than their share, you can be sure it will be closed, even if it affects the people who weren't getting all that much anyway. 

I get it.  The DSP is a massive "burden" if you look at it in terms of dollars. But it's not just a matter of dollars.  It's a matter of vulnerable people, people who are sick and disabled, people who in general, didn't choose to be sick and disabled.  When did we cease to have value as human beings and just become a financial "burden"?

Oh, if you see a "tip jar" with a request for your loose change appear on this blog, you'll know why.

Please Help A Fellow Lupie Update

If you wish to help lovely lupie Ruby from the previous post, here is her gofundme link https://www.gofundme.com/py95k69h.

Here's Ruby's story in her own words:

Never in my lifetime have I been this destitute or in this much dire need. After moving out here in the middle of the southern California high desert my health began to decline, I have systemic lupus and it is trying to overfix existing back issues so that I ended up in a wheelchair from disc deterioration and herniation. I can't work and am fighting to get disability. My landlord has carried me as long as he can and now needs the rent I am down to the only utility left, the electric. Water has been off almost four months and I no longer can fill gallon jugs from the neighbours as they are gone now. I have made due but now I need help. Asking is out of character for me and not because of pride, but shame. A dear friend who is a fellow lupus sufferer encouraged me to set up an avenue for help, so here I am. I look to God as my source and am extremely grateful and humbled by whatever assistance I receive. Thank you

Please Help A Fellow Lupie

Most lupies find the economics of illness kicks in at some time.  We have decreased capacity to work and earn income, and increased expenses with doctors, medications, etc.

A few years ago, just as I went from employment to a disability pension, my rent was increased to an amount more than my income. I didn't know how I was going to survive or how I could provide a home for my children.  Some wonderful friends helped me out. I still don't know what I would have done without them.

Now, I'd like to ask you to help me help someone else who is in a dire situation.

Lovely lupie Ruby is in the USA (where doctors and medications are not subsidised by the government in the way they are here.)

I've been talking with Ruby on line for a while now, and I really don't know how this amazing lady keeps going.

As I write this, she has not had running water for four months. She's been collecting water from a neighbour's place, and the taking it home.  The neighbour has now moved, and she just has the water she's already got stored.

She needs a water pipe fixed, and to pay for reconnection. She has a number of other needs to care for herself and her children, but this one is both very important, and urgent.

I think if everyone who reads this blog could give five dollars, we could get Ruby running water again. (If you're also in a terrible financial position, don't make it worse by contributing - only give money if you can.)

Because it's urgent, let's make the cut-off for this really soon.

So send me a fiver if you can, and whatever money I've collected by the 10th of November, I will pass on to Ruby. Let's see what we can achieve in three days.

UPDATE: 

It's just been pointed out to me that this counts as a fundraising appeal under Queensland law, which means I can't ask you for money for me to give Ruby.  I will give her the $30(Aus)  I've already received, and a gift from myself, and suggest she set up a page on gofundme or something similar.  If she does, I will share the link with you.

I had been thinking in terms of a group of people just getting together to give someone a gift they really needed - but it's clearly not that simple.

To the two people who have already given money thank you so much and I have passed that on to Ruby now.

New update:   Ruby's gofundme campaign.  https://www.gofundme.com/py95k69h

Money, Money, Money

My little granddaughter has just discovered money.

She just got a little purse, and her mother and I searched our own purses for 50c pieces (being big enough that a toddler can't swallow them) and found seven of them for her.

For days, she's been getting out her purse and asking for people to count her "monies" for her.

I'm fairly sure no-one else could feel as rich with $3.50 as she does.

I've been thinking a bit about money these days, money and how it relates to chronic illness.

It's not just how it affects me, but others with chronic illness as well.

Being sick costs money.  Even here in Australia, where we have Medicare, the Pharmaceutical Benefits Scheme and Health Care Cards provided by the government as safety nets for people with lower incomes, being sick is still expensive.   The more medications someone's on, the worse it is.

A lot of our disposable income gets disposed into the healthcare industry.  That often leaves people short in other areas.

At the same time, many of us can't work, or can only work part-time, so incomes are low.

One of the fastest growing groups of homeless in Australia is middle-aged women, and a number are homeless partly because of the cost of managing chronic illness.  (There's also an issue with rents being unmanageable.)

Lately, I've been more and more aware of things I wish I had money for.  There's a couple of modifications I'd make to my home to make things easier.  But there's also lots of other things, I've noticed.

You see, my network of friends, and social media friends, includes an increasing number of people with chronic illnesses.

I know some people who can't afford their medications, and it breaks my heart I don't have money to help out.

Someone else I know urgently needs some home repairs.

Others are struggling to raise young children on their own, while coping with illness.

These things aren't my problem. Not really.  And none of these people have asked for my help. But now that I at last have what I actually need (if not everything I would like to have), it really bothers me how many other people still don't have that much.

Money could never solve everything.  What we really most need is a cure.  I know that. But I still wish I could help with these obvious and important needs I see everyday.

Revisiting The Business Directory

My necklace and earrings made
by Annie at Bracelets Beads and Bling.

When did you last look at the  Lupus Business Directory?

It's worth checking it out when you're looking for unique handcrafted gifts, from jewelry to artworks, to scarves, to toys, and the range keeps increasing.

All of the businesses listed have one important thing in common: each is owned/run by someone with a chronic illness.

Aside from the obvious physical issues that come with having a chronic illness, we also face a serious financial issue - our capacity to earn a living is reduced along with our physical abilities, while the costs of medication and doctors increases our expenses.

My grand-daughter's "ugly
duckling" made by Anne
at Miniature Monkey Creations.

So when you buy from a business listed in the directory, you don't just get some amazing products you couldn't get anywhere else. You also get to help someone with a chronic illness to pay the bills, buy the pills,  have a just that little bit extra financial freedom.

Our little small and micro-businesses won't make any of us rich, but every time someone buys something we produce, it does make a difference.

So if you haven't looked at the directory for a while, why not take a look now? I'm sure you know someone having a birthday some time soon, who would just love something they can't find in the local shops.

What Lupus Takes Away

A little while ago, ABC's 7.30 program had a story on a new growing group of homeless people: older women.

It didn't surprise me at all that the first person interviewed in the story had lupus.

You see, I came very close to being one of those homeless women. A couple of years ago, I had to stop work completely because of lupus at the same time as my rent increased to an amount more than my income.  I had a miracle that Christmas - a home I could afford to rent became available just as I most needed it.

It was almost a year after that before my superannuation fund finally put me on permanent retirement, with a payout that finally enabled me to buy a house.

Many women's stories don't end as well as mine.

So here's the basic problem spelled out:

• Most people with lupus (and a number of other similar conditions) are women.
• Women tend to have less superannuation than men, because of time out for the workforce to have children, etc.
• Relationships are under extra stress when you add chronic illness into them, so quite a number of lupies don't have a partner to "support" them.  
• The unpredictable nature of lupus means that even part-time work can be hard to maintain.
• Many lupies are unable to convince their superannuation funds that they are sick enough for retirement on medical grounds.  (We usually don't look as sick as we are.)
• Many lupies are unable to convince Centrelink that they are sick enough to require a Disability Support Pension because of their illness. (Again, we usually don't look as sick as we are.)
• Rents keep going up to ridiculous levels.
• Lupies have the added expense of managing our illness, on top of everyday life expenses.

I don't have a solution to the problem.  I wish I did.  It weighs on my mind a lot, that I was saved from this additional problem, when so many others aren't.

The only thing I have been able to do so far to help is to establish the Lupus Business Directory on this site. Many of us have set up small or micro businesses. We have hobbies (eg writing, beading, etc), which produce saleable things.  The Directory is a place for people with lupus and other chronic illnesses to advertise our micro businesses. I don't say that buying one beaded bracelet will save a lupie from homelessness, but it will help a little.

Oh, if you're a lupie (or someone with another chronic illness) with a small or micro business, and you're not already on the directory, please email me the details. There's no cost to be listed.


Reference: ABC 7.30 story on Older Australian Women and Homelessness

Related posts:
My Christmas Miracle
Money, Money, Money
A Moving Experience

The Lupus Business Directory

Disability Support and Lupus

Right at the moment, there's a lot of discussion going on over the review of the Welfare system here in Australia.

There's a 176 page report available. (You can see a copy of it on the ABC news story about it.) There was a time I would have been able to read it, translate and summarize it for you.  That was before lupus brain fog.  Now, I'm settling for reading and watching news and making as much sense as I can of what journalists have already read and interpreted. (In research, that's called using secondary sources instead of primary sources, which is of limited value, but let's make do for now.)

One of the things being talked about is the Disability Support Pension.  According to news reports, the report is recommending simplifying all Centrelink Payments (which I'm sure nobody would argue with.) But it's also recommending moving a number of people off the DSP if they are determined to be not permanently disabled.  People would be on other benefits the same as job seekers, and would be expected to be looking for work.

For the most part, there seems to be some awareness of the reality of disability, but what shocked me, was seeing a copy of the Courier Mail in a shop, and seeing this headline glaring from the front page:

Disabling rorters: Planned Disability Pension Scheme overhaul could force thousands of Australians into workforce

You can read the Courier Mail's whole story (on-line version) here.

I guess you can tell what I'm objecting to here.  There's some kind of assumption that people on welfare are all part of a scam. We're taking advantage of the workers.  Even the Federal Treasurer Joe Hockey, when talking about the need for welfare reform said that Australian workers were working one month of every year to support welfare recipients.

Was that designed to make everyone with a job resent those of us who can't work?  My guess is yes, it was.

So what's the reality here?

I've worked part-time for a while since I began receiving the DSP. (And of course, the DSP was reduced accordingly for that period of time.)  Then my cognitive dysfunction (brain fog) became worse, and it reached a point where I just couldn't work.

I can write, because I do it at times when my mind is working. Having an actual job would require me to have a functioning brain at set times.... something I can't guarantee.  I can't even guarantee a functioning body at a set time.

In a sense, I am doing very well. I did get approved for the DSP.

  I know of other lupies who have been refused DSP, even though their doctors have told them they can't work. They're left in limbo.  As far as their doctors are concerned, they're too disabled to work. As far as Centrelink is concerned, they haven't proved themselves disabled enough to stop work.  Some of them are going without their medication because they just can't afford it. Going without medication will mean they get sicker. Eventually that will lead to extra costs in the healthcare system - which will prove to be a false economy for the government.

I won't write a response to the report and send it in to my local member of parliament.  My brain just won't do anything that difficult any more. But I hope people who are healthier than I am will.


Further information.
ABC News: Blueprint for overhaul of welfare system recommends simplifying payments, extending income management.
Courier Mail: Disabling rorters: planned Disability Pension scheme overhaul could force thousands of Australians into the workforce.
Sydney Morning Herald: Thousands to lose Disability Support Pension under changes flagged by government.

It's The Worst

Lupus bites!

It just does.

I hate all of it: the pain, the fatigue, the limitations on what I can do, the constantly swallowing pills, the risk that any organ could suddenly fail, the avoiding sunlight, etc, etc, etc.....

But for me, the absolute worst, the one thing that just tops everything else for horror, is that my brain doesn't work the way it should.

I've always considered my brain to be the best part of me. I'm intelligent, I'm creative, I've always had a great memory.

But now....

Now, I do and say stupid things. I was holding the baby the other day, talking to her, when my daughter interrupted: "Ah Mum, that's not me, that's Johanna."  I knew that, right? I know that my daughter is 22, and the four month old is her daughter. Well, I do right at this moment.  At that exact moment I was a little lost.

I hate not being able to lead worship - and worse I hate that the last time I did, the sermon I'd written suddenly didn't make sense and the words all seemed to be gobblydegook and I didn't know what to do about it.

I'm not particularly keen on hallucinations, either.  Seeing a strange woman without a face in my flat was disconcerting, to say the least.

Writing is just a part of who I am, and it has been since I started writing stories as a child. But now, half the time I can't spell, have trouble with punctuation, and write ungrammatical sentences.

I have trouble organizing my thoughts, and even more trouble organizing myself to do anything.

So that's the absolute worst for me.... messing with my body was bad enough, but once lupus started messing with my brain, things just became far too frightening.

But that's just my experience.

The one thing that's consistent with lupus is its utter inconsistency, so I asked some lovely lupies on social media what was worst about lupus in their experience.

For lots of people, the pain and fatigue were the worst thing.

For others, it was things they had lost: their jobs and income, their homes, their independence, the ability to do things they used to love, even some friendships.

For some the worst is the cost of managing lupus, some with insufficient health insurance or no health insurance at all.

For some the worst was the unpredictability of lupus - of not being able to plan because there's no way of knowing in advance what will be a good day and what will be a bad day.

For lupie mums, feeling that they're not able to care for their children the way they want to, even being in too much pain sometimes to hold their own babies, is the worst.

Some lupies have other health issues as well, throw in cancer or something equally horrible, on top of the horribleness of lupus and you have a nightmare Stephen King couldn't have scripted.

For some lupies, the vampire life of avoiding the sunlight is a huge sacrifice, especially if they have children who want to do things outside.

Some have found the mental health issues that are often a part of lupus - anxiety and depression - are the worst thing.

For a number of people, the worst thing was becoming isolated.

One lupie who answered, said the worst was when she wasn't diagnosed and didn't know what was happening to her.  Knowing what was wrong and beginning treatment had come as a huge relief.

Some of the people who responded were friends of lupies, who found the worst things were:when their friend forgot they'd been there for them; when they had to watch their friend go through the pain and fatigue; or when they lost a friend to lupus.


As I said at the beginning, lupus bites.

With bodies that don't bend where they used to, pain in places we'd never known we had places, fatigue that makes Sleeping Beauty's 100 year nap seem reasonable, the uncertainty of whether or not we'll be able to do tomorrow what we can do today..... there's a lot that's bad.  But the absolute worst? That's different for all of us. And it's different on different days. Because that's how lupus is. The only thing that's consistent about it is its utter inconsistency.


Want to join in the conversation?
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Money, Money, Money

My process for permanent retirement has gone through, and suddenly for the first time in my life I was faced with the issue of what to do with a lump sum of money.

Obviously, the first thing was to clear all my debts.  Not paying interest on debts will make a huge difference to my regular budget. 

Next was to lock away the majority of it in a long-term investment that will pay me some interest. 

And then to have an "emergency fund" for those crises that in the past a credit card would have covered, things like medical expenses that I hadn't counted on and emergency trips to the vet with my animals. (No more credit cards for me.)

My son came with me for the run around to the banks, sorting things out. He made notes for me, and understands my whole financial plan probably better than I do.  He says he's not looking out for my interests, he's just protecting his inheritance. My daughter's also been told all of the details. So if my cognitive function gets worse, there's people around me who know what I'm doing (even if I don't).

So that's all good news for me.  

Along the way, I learned a few things that might be useful for other people who've had to give up work because of illness. (Some of which may also be helpful for people who are still working.)

When I went from working to being on a Disability Support Pension, I didn't think to notify the bank of the change.  I should have.  If you're on a DSP and still using a regular bank account, it's a good idea to go to the bank to change over to a specific pension account.  Centrelink has a "deeming" process.  They deem your savings to earn a set interest rate, and count that as your income, whether or not you actually earn that interest. In response to this the banks have set up pension accounts, which earn the "deeming" rate.  This is higher than the regular savings account rate.  You will need to show your pension card to get your new bank account. 

It's important to ensure your bank has your Tax File Number. I hadn't even thought of this.  I had a bank account long before the time when banks started collecting tax file numbers.  (OK, I'm clearly getting old.) If the bank doesn't have your tax file number, it has to withhold tax from your interest at the highest possible rate.  

Have a plan for what happens if you get too sick to manage your money. You need to decide who you trust to manage your affairs if you can't manage for yourself.  This applies to health and personal decisions as well as financial decisions. Are you going to make a formal Power of Attorney? Are you just going to give a close family member or friend the access code and password for your on-line banking (and trust that next-of-kin will manage personal/medical choices appropriately)?

Further information:

Centrelink Deeming Rates http://www.humanservices.gov.au/customer/enablers/deeming

Australian Taxation Office information on taxation and bank accounts http://www.ato.gov.au/Individuals/Investing/Bank-accounts-and-income-bonds/

Queensland Department of Justice information on Enduring Power of Attorney http://www.justice.qld.gov.au/justice-services/guardianship/power-of-attorney/enduring-power-of-attorney

Help Find A Cure

You may remember my earlier post Towards A Cure about the work of Professor Carola Vinuesa and her team at the Australian National University's John Curtin School of Medical Research.

I promised you a link where you could donate to support their work.  At long last, I have it.

If you want to support this research you can do so here: http://philanthropy.anu.edu.au/philanthropy/donate-online/make-a-general-donation/?cause=lupus-research

The link has been added to the right-hand column of sometimesitislupus.com and will stay there permanently.

The Price of Pills

My son came with me to the chemist on Monday.  He hasn't been there for a while.

He was OK with the chemist pulling out my file of repeats and watching us go through all of them and look at what I was low on. And he was OK with the basket of boxes and bottles of pills that she handed over - after all, he's seen my medication drawer.

What shocked him was the check-out, where it all added up to $175.

"Holy sh..! Does it always cost that much?" he said.

Actually, sometimes it costs more. Plaquenil and methotrexate last me a long time, so I don't need them every month.

Being on a pension, I have a concession card. That means my PBS (Pharmaceutical Benefits Scheme - federal government subsidy for prescription medicines) prescriptions are only about $6 each. I know of at least one other lupie who has missed out on a concession card because her husband earns a couple of dollars a week too much for the health care card limit. That means she has to pay the full PBS scheduled fee for each drug (up to about five times what I pay.) Of course, even at the full scheduled fee, the government is subsidising medications to some degree.

In other countries, subsidies and supports for people on lupus medications don't cover everyone in the way the PBS does here.

American lupies report some get assistance, and some don't. Some have health insurance that covers prescription medication and some don't. Some have been able to "shop around" and find cheaper retailers. Some have gone directly to the drug companies for assistance. (Thankfully, the drug companies have been known to give discounted or even free drugs for patients who are desperate.)

The frightening thing, is that I do hear from lupies who go without medication because they just can't afford it. Money stands in the way of them having their lupus kept under any kind of control.

The Economics of Illness

Lupus, or any chronic illness for that matter, changes a lot about life. It affects our financial situation as much as anything else.

For most of us, being sick interrupts our working life.  It stops some people from working all together, it limits the amount of time others can work, and the kinds of jobs they can maintain.

It's simple logic - a life-long illness, affects our income life-long.

There are a number of forms of Government assistance for people with chronic illnesses, and these really do make a difference.

For various reasons, not everyone who has to stop work because of illness is able to receive a pension or other assistance. A partner's income may, or your assets may put you just outside of the range of receiving government support at all,  even if the additional expenses of having a chronic illness, then reduce what is left to live on is far less than the income limit.

With or without assistance, what people with a chronic illness are able to earn or receive as unearned income (eg a pension), is usually far less than they would be able to earn if they were healthy.

Expenses include medication, doctors visits, physiotherapy, and other ancillary medical services.  Those are the obvious things.  There's things other people don't think about as well.  For example, I had to change cars: I'd been driving a manual car that didn't have power steering, but changing gear and turning an unpowered steering wheel got too painful for my left shoulder.

If hanging clothes on a line is too difficult, using a clothes dryer uses extra electricity and is expensive. LED lights are more expensive than fluorescent lights, but are safer for people who react to ultraviolet light.

Gluten free foods are often more expensive than their non-gluten-free counterparts, but for quite a few people with lupus, gluten can cause inflammation, and irritable bowel. Also with regard to food, fatigue and pain can make cooking too difficult, but eating out or buying pre-packaged food is more expensive and usually less healthy.

Many people with lupus react to changes in temperature; for example heat makes my fatigue worse and cold makes my pain worse.  Air conditioners are expensive to buy and to run.

The nett result is that people with chronic illnesses are usually in a far worse economic state than they would have been if they'd not become sick.

Queensland Government gives $1.25 Million to Research

So thrilled when the following media release was forwarded on to me.

The State Government has given $1.25 million to an arthritis researcher who is working on Rheumatoid Arthritis (RA) and tuberculosis (TB).

Hopefully advances in understanding RA will also help people with lupus and other forms of arthritis.

Following on from the recent decision to join in with the rest of the country in Disability Services Australia, this government is starting to look like it might actually care. (Of course, there have also been cut-backs in Queensland Health, but we can't have everything.)

I'm reproducing the media release in full (not the kind of thing I used to do as a journalist) because this is something I think is quite important to all of us.

JOINT STATEMENT Premier The Honourable Campbell Newman Minister for Science, Information Technology, Innovation and the Arts The Honourable Ian Walker

Premier’s Science Fellow to help arthritis sufferers An expert on genes that increase the risk of common human diseases was today awarded the Queensland Premier’s top science prize. Professor Matthew Brown from the University of Queensland Diamantina Institute was awarded the prestigious $1.25 million Premier’s Science Fellowship to advance the diagnosis and treatment of rheumatoid arthritis and tuberculosis (TB). Premier Campbell Newman congratulated Professor Brown on his award and thanked him for his remarkable work that was positioning Queensland as a global leader in genetic research and diagnostic testing. “This Fellowship allows Professor Brown to progress his gene-mapping research in ways that will benefit not only our health but also Queensland industry,” Mr Newman said. “He already has three patents for tests to diagnose a related condition, ankylosing spondylitis (AS)—a severe type of arthritis affecting more than 80,000 Australians—and his genetic findings have led to trials of new treatments for AS.  “Over the next five years Professor Brown will use the fellowship to identify the genes underlying the causes of rheumatoid arthritis and tuberculosis and develop better diagnostic tests to screen for them.” Professor Brown said it was a great honour to win the Premier’s Science Fellowship. Professor Brown trained as a physician specialising in rheumatology but was unhappy with the limited treatments he could offer patients so he switched from clinical practice to researching the condition. “The techniques we are developing have real commercial possibilities and healthcare benefits. We expect to roll out affordable diagnostic tests within five years, paving the way for new treatments targeting the root cause of the diseases,” Professor Brown said. “Rheumatoid arthritis affects 2.5 per cent of Queenslanders and more than 513,000 Australians and there are no treatments to prevent the disease or induce remission.  “The increasing incidence of tuberculosis is also a concern, particularly the cases of multidrug resistant TB arriving in Queensland from Papua New Guinea and the Torres Strait islands.” The Queensland Government’s $1.25 million investment, which is matched by The University of Queensland, reinforces the government’s commitment to working with universities to support scientific research that delivers real benefits to the community. [ENDS] 16 May 2013

Support for Chronic Illnesses

It may be a while before we find out what (if any) services are available to people who are disabled by lupus
and other chronic illnesses under the new Disability Services Australia legislation.  So, I thought it might be good to have a wrap-up of what Government support is already available.

Income Support

For those of us who can't work because of lupus, a Disability Support Pension is available (but if you have a partner who earns too much, you can't get this.)

The amount of pension paid is reduced for people who have other sources of income. So it's possible to work part-time (up to 12 hours per week), and still receive a part-pension.

Even a part-pension has the benefit of a Pension card. A Pension card can help gain all sorts of concessions on medical and other services as well.

For those who do have incomes, but low incomes, a Health Care card can make some medical and related services, and Pharmaceutical Benefits Scheme (PBS) medications cheaper.

Medical and Allied Health Services

Many doctors will bulk bill Medicare for services for people on Pension or Health Care cards. If your doctor doesn't bulk bill, the Medicare rebate will be higher.

For those who don't have a concession card, there is a Medicare Safety Net.  After a family has spent a set amount (the amount changes from year to year), the Safety Net cuts in and a number of medical services will be cheaper for the rest of the year.

People with chronic illnesses will be able to get some Allied Health services paid for by Medicare. Discuss a GP Management plan with your General Practitioner.  Your doctor can refer you to up to two allied health professionals, with Medicare assistance, under a Team Care Agreement as part of managing your condition. (There is a limit of five allied health services/appointments per year under this program, and sometimes there will be a small out-of-pocket fee.)

Medication

Medication is always expensive for people with lupus.

In Australia, the Pharmaceutical Benefits Scheme limits the upper cost of most prescription medications. Those of us with Pension cards or Health Care cards, have an extra discount, bringing the cost of each medication to a bit over $5.00.

Like Medicare, the PBS has a Safety Net.  After a set number of prescriptions for a family, people on concession cards get their PBS medications free - and people without concession cards will have their cost of medications reduced to the concession level.

If you take more than 12 medications, you may be eligible to have a free Med Check - ie your pharmacist can do a review of your medications, how they're taken, etc.  Not all pharmacists do this.



References:

Australian Government Department of Health and Ageing Chronic Disease Management Medicare Items: http://www.health.gov.au/internet/main/publishing.nsf/Content/mbsprimarycare-factsheet-chronicdisease.htm

Australian Government Department of Human Services Chronic Disease Management Plan: http://www.humanservices.gov.au/customer/services/medicare/chronic-disease-management-plan

Australian Government Department of Human Services Concession and Health Care Cards: http://www.humanservices.gov.au/customer/subjects/concession-and-health-care-cards

Australian Government Department of Human Services Chronic Medical Condition Assistance: http://www.humanservices.gov.au/customer/subjects/chronic-medical-condition-assistance

Australian Government Department of Human Services Disability Support Pension: http://www.humanservices.gov.au/customer/services/centrelink/disability-support-pension

Australian Government Department of Human Services Medicare Safety Net: http://www.humanservices.gov.au/customer/services/medicare/medicare-safety-net

Australian Government Department of Human Services MedsCheck Program: http://www.humanservices.gov.au/customer/services/medicare/medscheck-program

Australian Government Department of Human Services Pharmaceutical Benefits Scheme: http://www.humanservices.gov.au/customer/services/medicare/pharmaceutical-benefits-scheme

Budget Night

Here in Australia, it's Federal Budget night.  So I've been glued to the television, watching to see how the government's financial plan will affect lupies.

I'm not an economic analyst, and I don't have a crystal ball, so upfront let me say I don't know exactly how these things are going to affect us, but a few things in the Treasurer Wayne Swan's speech presenting the budget stood out to me as having a potential impact on us.

You can get the full details of the budget here.

The two big things for us, should be the establishment of DisabilityCare Australia, and the National Health Reform Agreement.

On the downside, a lot of health funding is being targeted especially at cancer research and care and treatment, so autoimmune diseases are the poor neighbours yet again. Hundreds of million of healthcare dollars will be specifically for cancers. (Mr Swan talked about his own experience with cancer. Maybe we need a senior politician to have their life threatened by lupus or another autoimmune disease.)

A potential downside for lupies who are still in the workforce, is that this budget will phase out the net medical expense tax offset (tax reductions for spending more than $2000 in the year on medical expenses.) At the same time, the point at which the Medicare Safety Net cuts in, increases from $1221.90 to $2000.

Relevant sections of Mr Swan's speech are included below:

DisabilityCare Australia

The Australian Government will provide $19.3 billion over seven years from 2012‑13 to roll out DisabilityCare Australia across the country. This brings this Government's total new investment in DisabilityCare Australia to $14.3 billion over the period.

This investment in DisabilityCare will ensure all Australians with significant and permanent disability get the support they need. This is compared to the current approach where limited funds are rationed and people who get funding often have to accept a one‑size‑fits all approach.

Rigorous assessments will be conducted to ensure funds are targeted where they are needed most.

Core principles

DisabilityCare Australia will look beyond immediate need, and will focus on what is required across a person's lifetime. At its core will be:

A Lifetime approach — as funding is long term and sustainable, people with disability will have peace of mind that the individualised support they receive will change as their needs change;

Choice and control — people choose how they get support and have control over when, where and how they receive it, including the option of managing their supports themselves;

Social and economic participation — overall life goals for participation will be a central focus of supports; and

Focus on early intervention —# the scheme will invest in people to maximise their independence.

Sustainable funding

From 1 July 2014 the Government will raise the Medicare levy by half a percentage point to provide a strong and enduring funding stream for DisabilityCare Australia.

This will raise $20.4 billion between 2014‑15 and 2018‑19, to be spent on DisabilityCare Australia. The States and Territories will also contribute to DisabilityCare Australia, and will be allocated $9.7 billion over ten years from the increase in Medicare levy revenue.

DisabilityCare Australia will be fully funded.

DisabilityCare Australia launch

DisabilityCare Australia will commence operations from July 2013 across four jurisdictions and from July 2014 in a further two jurisdictions.

Launch locations will be established in the Hunter region of New South Wales, the Barwon region of Victoria, in South Australia for young children and in Tasmania for young adults from July 2013, and in the Barkly region of the Northern Territory and the Australian Capital Territory from July 2014.

National roll out

The Australian Government is committed to the full national roll out of DisabilityCare Australia in 2018‑19.

The Government will provide funding of $11.7 billion to DisabilityCare Australia in 2019‑20, the first year after full national rollout.

New South Wales was the first jurisdiction to commit to full scheme, followed by South Australia, the Australian Capital Territory, Tasmania, Victoria, Queensland and the Northern Territory.

The roll out of DisabilityCare Australia in these jurisdictions will cover around 90 per cent of the total Australian population.

The Government will continue to work with Western Australia to achieve national coverage by the end of 2018‑19.

The Government has taken action to address the challenges facing our health care system including an ageing population and rising health care costs.

Access to new medicines

We are investing a further $691 million over five years in new medicines in the PBS, including ground-breaking drugs for the treatment of chronic nerve pain, chronic hepatitis C and Parkinson's disease.

The Government has realised savings from the price disclosure reforms to the Pharmaceutical Benefits Scheme (PBS) agreed with industry in 2010. This has increased capacity to fund new and innovative drugs.

Better healthcare

The Government is investing a further $2.2 billion in the Medicare Benefits Schedule across five years with a higher than expected number of Australians visiting doctors. In addition a further $33.8 million is being invested into the General Practice Rural Incentive program in 2013‑14 to encourage medical practitioners to move to regional and remote communities.

An additional $2.2 billion over four years will go to assisting individuals and families to meet the cost of private health insurance through the private health insurance rebate. A further 120,000 people have taken up private health insurance cover from July to December last year

In 2012, the Government announced funding of $4.1 billion to improve access to dental services and boost the dental workforce, including $2.7 billion for a Child Dental Benefits SchemeGrow up Smiling.

Historic national health reform

In 2011, the Government and all States and Territories signed the historic $16.4 billionNational Health Reform Agreement. These reforms are critical to preserving Medicare and universal healthcare in Australia.

Improving cancer care

In this Budget, the Government is investing a further $226 million to deliver world leading cancer care for Australians.

The Budget provides $18.5 million over four years to fund the new Australian Prostate Cancer Research Centre, as well as support the two existing Research Centres.

The Budget delivers $42.1 million over four years in funding for bone marrow transplants and for the Youth Cancer Network program run by CanTeen, providing access to life-saving medical procedures and necessary support services for people living with cancer.

The Government will also invest $5.9 million over four years to improve the treatment and outcomes for people affected by lung cancer.

Recognising that smoking is a major cause of cancer, the Government has taken ground-breaking steps to introduce plain packaging of tobacco products. This Budget includes funding for the enforcement of plain packaging.

Early detection

The Government has also committed $92.2 million over four years to expand the target age range for the BreastScreen Australia Program and to continue funding the processing of Pap smears for early detection of cervical cancer.

Bowel cancer screening will also be funded with an additional $16.1 million over four years, which builds on previous investments in this area.

An additional $29.6 million in 2012‑13 and 2013‑14 will be provided to support the dispensing of chemotherapy medicines to ensure the supply of these drugs to patients.

Improvements in cancer care will also flow from additional funding for national cancer data collection which started in 2009‑10. These initiatives build on the $1.1 billion invested by the National Health and Medical Research Council in cancer research since 2007.

Reference: 2013-14 Commonwealth Budget http://www.budget.gov.au/2013-14/index.htm

My Christmas Miracle

The house I'm leaving....

I'm getting ready to move house.

I can't afford to do it, and if I don't sort out someone to take over my lease here I'm in trouble, but I'm doing it anyway - because the new home is perfect, and it becoming available is nothing short of a miracle.

Less than a month ago, my doctor told me to put in an application with the Housing Department, because I couldn't continue to live in the house I'm in.  It's too big for me to look after now, and the rent is too much for me now that I'm not working.

About a week ago, a friend contacted me and asked if I was still looking for a new home - because the granny flat under her house is going to be available next month, her current tenants are moving out.

It's much cooler than this house - because it's insulated by having a whole house on top of it. It's the perfect size, being big enough for my son and me, but small enough for me to be able to clean it.

There's even a cat-flap for Bumpy. And I can afford the rent.

It's perfect, and it's available now that I most need it.  I'm accepting that as a gift from God.

lupus.cheezburger.com

When I found out about the costs of breaking my current lease, I almost decided against going. But then I had my fortnightly check up with my doctor.  I am a fair bit healthier than I have been lately, but still suffering a lot because of the heat. Her recommendation was beg, pray, do whatever it takes to get out of the lease - but move to the new flat.

So I've asked the real estate agent to ask the owners to waive the fees for breaking the lease - after all, I've been here for years. And I'm asking everyone I know to ask around and see if anyone they know might want to take over the last few months of my lease here.

Financially, it's going to be a shock to the system - not just getting out of the lease, but the cost of moving.  I honestly can't afford it, but am trusting it will all work out somehow.

Physicially, moving is going to be exhausting.

We're going to have to cull a number of our possessions, so I'm throwing out things, and setting things aside for a garage sale. Hopefully, as well as cutting down the number of things we have to move, the garage sale will make us some money to cover the expenses of moving. I'm trying to start the packing and throwing out, while still getting ready for Christmas.  I have to keep a balance still, sleep as much as possible, and do minimal things through the heat of the day. It's a challenge - do do everything in time, and yet not push myself to the point of becoming more unwell. It's especially challenging in the heat of a Queensland summer! (Heat leaves me exhausted to start with.)

lupus.cheezburger.com

Going through what I want to keep and what I want to sell/throw out/give away is an interesting experience.  For me, it's quite a spiritual experience, realising that the material things I've gathered around me are not all that important. Getting rid of things that no longer have a use, assessing what I really want to keep, helps make me more aware of my priorities.  (If you want to see what it's like: look around your home, imagine you were moving to somewhere half the size, and decide what you need or want enough to keep and what you can live without.)

Then there's packing and moving.  I suspect I won't be able to afford a removalist, so it will be a matter of hiring a ute, the same as my daughter and her boyfriend did for their move. I will be counting on the family, and any friends who have time and energy helping.

And after the move, is cleaning the house.  It's a job I've been struggling with while living here. I hope it will be easier with the house empty. Again, I'll probably be looking for help.

After the move, and the clean-up, I'm going to need a lot of rest to recover.  Hopefully, as this flare is starting to ease, it won't come back and hit me as a result of the move. But, I'll have a cooler home that's easier to care for to recover in.

Moaning About Money

lupus.cheezburger.com
(No, this is not Mr Bumpy - who uses home brand
cat litter, and does not have to make his own.
When he shreds paper, it's for fun.)

Every now and then something circulates on email or social media about how someone who is well-dressed, have make-up on etc, asks for a pensioner discount. The self-righteous people who pen these missives then claim that this proves our pensions are too high, or that we're helping people who are wasting money and using it badly.

I'd like to answer these things - (feel free to copy and paste freely as needed.)

Dear person who thinks pensions are too high,

I would like to suggest to you that if you can't tell the difference between:

• Your $30 a time professional manicure that lasts two weeks if you're lucky, and my $5 bottle of no-name brand nail polish that lasts me six months or even more,
• Your $150 hair style, and my home hair cut done with a $20 pair of hair cutting scissors that has lasted me five years, (and my six-monthly treat of a $15 home hair dye),
• Your $50 per 200ml bottle of expensive moisturiser and my $5 per litre (or less) bottle of sorbolene,
• Your $20 make-up remover, and my same bottle of sorbolene,
• Your clothes that are discarded and replaced every season or so, and my clothes that were bought on special (I try not to spend more than half the original price), and then cared for so they last,
• Your $25 eyeshadow and my $5 eyeshadow (and prices are similar for foundation, lipstick, etc),
• Your expensive shoes, and mine, bought on sale and repaired numerous times,
• Your $5 shower gel and my $1 cake of soap,
• The home-made snacks I carry in my handbag, and the ones you buy at a coffee shop,
• Your dog's professional grooming, and my dog's home bath, hair cut and nail clip,
• Your name-brand everything, and my no-name brand everything,
• Your things that are thrown out when damaged and mine that are repaired, reused, recycled wherever possible,
• The things you bought new, and the things I was given second-hand,

...then I really have to agree with you. One of us definitely has too much money, and is clearly wasting it.

Kindest regards,

A disabled pensioner.