Inequalities in medication access: Ondansetron. AKA If you want to not vomit be prepared to pay with your left kidney and first born.

(source)

It's the wave first. The rolling wave of warmth. The clench in my abdomen. Foul saliva that fills the mouth. It passes for a second and I think I'm okay. I take another bite. And it hits again. Harder than last time. And gone. Play the rookie and believe that it's over. Momentary. Fleeting.  Hope. Delusion. That lovely little fantasy land where nausea doesn't exist. Nor vomit rising in my throat. The sweat that doesn't come thanks to anhidrosis but my body still tells me is there. Phantom sweat? The limb equivalent in a body that just as stubborn as it's resident, likes to pretend it's still like all the other kids. Place a little minty wafer on the tongue. Feel it dissolve. Let the hope be absorbed into the oral mucosa....

....Sitting in the loo down the alley way next to the cafe. Focus on the hole in the scuffed plasterboard and the wad of old dusty newspaper used to fill it. Try to read the words in the creases. Wave on wave hits and I am forced to put my head between my legs. Raise my head and it hits again. Open up my bag grab another wafer in it's little foil pack. This time. This one....

....Sitting in the car in the carpark waiting for my youngest to get out of the university open day. Spitting out a frantic “I'm going to vomit!” as my eldest looks on helpless. I've done too much. I know it. I knew it in the cafe and the specialist's room before. On the drive down and in the shower before we even left home. But what can you do? Life doesn't stop because you're ill, because your body forgets how to hold food. Another wafer. A last gasp....

....Four's the limit for the day and here I am on number three already. A three hour car trip awaits while I weigh up taking another tiny wafer or simply stapling a puke bag to my face....

Nausea is debilitating.

It affects eating.

Sitting up.

Walking.

Talking.

Simply getting through the day.

I have tried home remedies. A plethora of options from the chemist. And many prescription medications.

It is a daily symptom. A combination of a malfunctioning digestive system and periodic blood pressure issues. Dehydration adds it's own joy to the mix and suddenly even the thought of food, or water, has me running for the loo or grabbing a puke bag.

Eating is now a chore. I feel sick before I eat, while I eat and after I eat. Vomit and I meet up on a regular basis.

I am losing weight. Far more than I should. I am unable to absorb my food properly so that the small amount I force in still doesn't give me all the nutrition or calories I require. Even when I can get it to stay down, I still fight to maintain a weight that wont budge from the underweight range.

I have dealt with this particular issue for 9 years now.

After much trial and error I have finally found a drug that can help. It takes the edge off and allows me to eat a little more and have a better chance of keeping it in.

Ondansetron.

I am not alone in loving this little wafer. For many in the Dysautonomia and Gastroparesis communities it is the only drug that even comes close to taking the edge off the nausea.

The only problem? Cost.

Ondansetron is subsidised on the Pharmaceutical Benefits Scheme (PBS) for the following:

Management of nausea and vomiting associated with radiotherapy being used to treat malignancy.

Management of nausea and vomiting associated with cytotoxic chemotherapy being used in the treatment of malignancy which occurs within 48 hours of chemotherapy administration (May be extended for up to 7 days.)

For patients with other conditions also undergoing chemotherapy there is no subsidy.

For those with unremitting nausea due to others conditions such as Gastroparesis or Dysautonomia there is no subsidy. Not even women experiencing Hyperemesis Gravidarum during pregnancy can access the subsidy.

This is what a 4mg $3 wafer of Ondansetron looks like.

(Green jelly bean for size comparison. Green jelly bean promptly eaten after photo taken.)

On a bad day up to 4 can be taken or $12 a day, or $84 a bad week.

My dietician suggested I take it before each of 6 small meals a day or $18 a day, or $126 a bad week. (Luckily, I can't stomach 6 small meals a day)

It can only be bought in 10 packs. Or 2 ½ days worth if you're in a bad patch. Unless you have a doctor who will give you 5 repeats on the script. Even then you can't stock up. One repeat at a time.

So patients put up with nausea and vomiting. Lose weight and end up malnourished. Relief and potential functioning is put aside thanks to financial constraints.

Loopholes and less legal means are employed by some desperate patients. I am ecstatic when I present at ED and as part of my overall stabilisation, a shot of Ondansetron is injected into my cannula. One less dose I have to pay for.

By comparison, in New Zealand fellow patients pay roughly $5 for 50 of the same drug at 4mg and roughly $6 for 50 0f the 8mg version, and some even less. It is also routinely prescribed in the US under the name Zofran, yet here we continue to struggle with access.

For most of us this is only one out of many prescription medications we take. The financial burden of management always at the forefront of our minds. (Between over the counter, supplements, and prescription medications I take 14 different medications. 11 every day. The other 3 are break through medications. Plus a medical grade food supplement drink when I cannot stomach solids at all.) Costs and symptom/illness management must be weighed up. Frequently, even for patients who are vomiting multiple times a day, the financial burden is too great. Leading to poor illness management and more frequent ED and hospital admissions. For a government who espouses a need to cut costs, a costly ED or hospital stay and increased disability and care needs, hardly equates to the best financial option when weighed across subsidising a medication like Ondansetron for patients who have unsuccessfully trialed multiple other antiemetics and antinauseants.

I, like many others, take Ondansetron sparingly. Quality of life is reduced. Ability to function is reduced. But the cost, which as it is not on the PBS other than the situations mentioned above, cannot count towards the PBS Safety Net. A double hit for patients already struggling. A subsidised script is also not covered by Health Care Card, for those on pensions. A small change to the access criteria would allow Australian residents to access a very effective medication option that our fellow patients access with comparative ease overseas.

With no cure in sight and treatment only in the form of symptom management and off label prescribing, this is a burden both financially and functionally, that patients should not have to bear. Ondansetron is not a drug for all patients and like all medications should only be prescribed based on individual need. But it is hard to understand why the exact same disabling symptom, nausea and vomiting that doesn't respond to other medical options, should only be subsidised if you meet two very specific criteria. I don't begrudge those who qualify a single mg, but I do want a word with the bureaucrats who make the decisions. I am tired, exhausted and malnourished. And my tolerance for health care bureaucracy and the taste of bile is waning at an accelerated rate. 

….So I lay down in the car for the trip home. I kept swallowing down the vomit and riding out the waves of heat and phantom sweat. Breathing through the worst of it. Willing my body to quiescence. A fourth wafer the bridge too far financially. Ride it out. Hold the puke bag. Prepare the family that we may have to stop suddenly. “Now” means NOW. Throw up on the side of the road. In the rancid loo at the petrol station where the doors don't lock and the floor is always wet, or the one where the lights don't work and plastic seats are met with a combination of hope and desperation. So familiar. Too familiar.

Michelle

*I have recently discovered that if your doctor writes a prescription for 30 wafers at a time it saves you a considerable amount ie it comes down to about $2 a wafer rather than $3. Equalling about a $30 saving overall, compared to the usual $30 for 10.

**Then if you have private insurance most will cover the gap in costs from the standard PBS price (around $37) which brings the price down to about $1. But like everything there is usually a limit to how much you can claim.

***Ondansetron is only one example of similar discrepancies in access to medications for the same symptom but different aetiology affecting Dysautonomia patients in Australia. For example, Octreotide is subsidised for 3 set criteria. Cost outside of those criteria is quoted as approximately $4,000 a month, making it effectively inaccessible. But the whole vomit/nausea mess is making access to Ondansetron very salient at present.

***8UPDATE: my local member has written to the Health Minister Susan Ley on my behalf. Will let you know when I hear more. Thank you to Darren Chester MP for taking the time to read my letter, this post and contacting the Health Minister. 

You might also want to check out:

The Price of Health
Pukefest 2011: The Most Craptastic Event of the Year.
Accessing IV Saline: A lesson in futility.
Six Months in Chronic Illness

Goyte's song Thanks for Your Time, about the ridiculousness of automated bureaucracy and phone cues just seems appropriate.

You have been placed in a queue

But your call is valuable

It's very valuable

We hope this doesn't inconvenience you

Because you're valuable

You're so very valuable!

Pukefest 2011: The most craptastic event of the year.

Well it's on once more.  Yes that's right.  Bob and Jeff have been hard at work getting this project back off the ground.  I was hoping it was canceled this year, but no, it was not to be.  Pukefest  is back, as was evidenced by the big bag of carrots I had to squish down the shower drain with my big toe this morning.

(Every event needs a t-shirt. 

Especially when it has a unicorn with rainbow coloured puke.)

(Are 'carrot bags' an international phenomenon or are they purely Australian, like Vegemite?  I don't think Oprah discussed it on her recent tour, and given she was impressed by fornicating koalas, I'm pretty sure she's the kind of gal who'd be amused by, and would discuss, 'carrot bags'.  For those unfamiliar with the term, every person has a bag somewhere deep inside their bodies that is filled with a never ending supply of carrots.   Even if you haven't eaten a carrot for two years, when you puke, you will expel a bags worth of little orange carrot pieces, hence the existence of a 'carrot bag'.  Come on international readers, I need an answer.  These are the questions that consume me in my post puke haze.  And before you ask I already know that the meaning of life, the universe and everything, is 42, so I am down to pondering the big issues, such as the epidemiology of carrot bags). 

After a very pleasant two months of no nausea or puking post-angioplasty, it's back.  I sort of feel like the morning was was all very "Here's Johnny", except instead of an axe wielding Jack Nicholson, it was my breakfast saying an insane hello.  All this was accompanied by a rather elegant fall from my shower chair.  Naked, pasty, marshmallow body flailing under the falling water, landing legs akimbo, twisted like a pretzel, with a sound akin to a dead squid being slapped on the table at a fish market.  All accompanied be a lovely rendition of, "FRAK!* Frak me. Owwwww.  Frakking stupid shower chair.  FRAK! FRAK! FRAK! Owww. Fraking universe. Frakking useless body.  FRAKKKKKKKKKK........"  Halcyon days my friends.  Halcyon days.

YAY.  WOO BLOODY HOO!  Let me do the traditional 'Return of the Puke' dance of joy.

Slowly the nausea has been creeping back.  A little bit worse each day.  So slowly that for a while I could dismiss it as, 'it's just something I ate', 'it's just the stupid humidity and heat', 'it's not really coming back'.  You can convince yourself of anything if you say it often enough.  Hell, I still believe that Johny Depp is going to turn up n my doorstep offering to give me a back rub any day now.  Not delusional in the slightest, right?

I do wonder what this all means for Jeff, especially as my headaches have also been returning bit by bit.  I'm still not back to the soul crushing, insanity inducing migraines of old, but it is getting worse.  I've had to go out and buy my first lot of poppy derived drugs since my angioplasty, which is rather depressing.   I have a feeling that it all means that Jeff has once more turned my jugular into a dodgy rat infested squat. 

I knew his return was a risk, especially given his fractious nature and resistance during the procedure.  Many others who have the procedure have to have it done again as the veins re-stenose.  My bestie who put me onto the whole CCSVI idea has had it done three times now, so I'm not overly shocked that it may have collapsed again.

Not sure how I feel about it all or what I'll do.  Is two months nausea and migraine free worth the less than pleasant nature of the procedure or the stupidly long time it took me to recover?  I'm still tossing that up.  I have enough medical appointments on the cards as is, so I'm not sure if I want to add in another trip to the thumping tube of death, or The Balloonman at this stage.  If the 'two months' was instead 'two years' I may be more inclined to go back for round two.  If I hit frequent migraines again then maybe.  At present it's all very grey.

For those who live with nausea/puking everyday, you'll know how precious those two months of freedom were.  I have had nausea 24 hours a day, 7days a week since 2006.  Prior to the angioplasty I had not had even a single day's break.  The only thing that varied was the degree.  Was a I slightly nauseous, very nauseous, swallowing down mouthfuls of vomit, or riding the porcelain bus for hours on end.  It was like someone had snuck into my room in the middle of the night and flicked a switch in my body to the 'PUKE ON' position and it stuck.  So two months free has been like winning the lottery.

It's hard to explain what it's like to someone who is rarely ill.  It doesn't get better and you never get used to it.  It's the one symptom I've never learnt to tolerate.  The overall malaise, yes.  The feeling of dizziness every time I stand, yes.  The need to wear a bikini in Winter, yes.  A myriad of other symptoms, yes.  But not the nausea and puking.  It is continually foul and at times rather distressing.  Not to mention the cramp it puts on my social life and potential outings.

To give you an idea.  I went to the supermarket the other day with Mr Grumpy and half way through I thought I was going to throw up next to the bin bags and birthday candles. It was an overwhelming feeling.  The whole body stuff is horrible in itself, but the idea of throwing up in public, the hassle, the people watching, the poor staff having to clean it up, the fact you know you have no control over your body, that all goes through your mind and leaves you rather stressed and anxious.  I managed to get to the disgusting public loos to dry retch and had the joy of swallowing down mouthfuls of vomit on the car ride home.  You don't get used to that.  It never gets better, or easier to deal with, and there is not much in the way of respite.

I can prepare as best as possible, ie I always carry puke bags (see pics below).  I can tell myself it's out of my control.  It's part of Bob.  I can give myself pep talks and shout out positive affirmations till the cows come home, but in reality it sucks.  And each time it's simply 'Craptastic' (thanks Miranda for my new favourite descriptor).

(The cartoon of someone puking makes it all cute and fun right?  

Personally I think the addition of my pink sparkly feather boa really makes it special)

(Who thought it was a good idea to put cartoons on the bag?  

Who has the time, or inclination, to look at witty cartoons whilst they are blowing chinks?)

(Okay, I do like this one.  

There's nothing like a little cartoon puker to sum up the joys of a technicolour yawn).

So yes folks, Kermit was right, it really isn't easy being green.

Pukefest 2011 is truly the most craptastic event of the year.

The bleech Michelle

* Yes I am a sad geek.  The origins of 'frak'.

At least Pukefest 2011 does have a funky little theme song.  Beck, Nausea.