(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.
....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 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.
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.
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.
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.
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
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!
Yes. I had to have it throughout my pregnancy, multiple times a day. In the end I had to wangle a someone-who-knows-someone urgent referral to a public hospital outpatient clinic, where I got hospital prescriptions for $15 for a months worth. This of course meant hauling myself to the public hospital outpatient clinic every month while hurling into an icecream container, but it was better than the many hundreds of dollars I'd have to find otherwise (while unable to work).
ReplyDeletei had the same issue with allergy tablets for angioedema. They cost $30 for a month's worth for a normal person and I was meant to take 4 a day. The only way I could get them cheaper was through a trip to the ED dept during angioedema hit where they'd give me my month's worth for $30.
ReplyDeleteI have dys, gastroparesis and am severely allergic to maxalon and stemitil...and even I cant access this beautiful, heavenly wonderdrug that makes my nausea disappear almost completely. Maybe we should start a petition for the Govt to change the guidelines...to include dys/gastroparesis/allergy to other anti emetics under the PBS subsidy. I KNOW this has worked for other drugs...Lyrica and Visanne are just two examples. There has to be something we can do to have the guidelines broadened...
ReplyDeleteWonderful writing again... you've such a talent. I find the access to drugs between countries deeply frustrating - there are all sorts of things used for dysautonomia in the States (and i'm sure other places,but most the forums seem to be US based) that Dr's in the UK simply won't consider prescribing (IV saline, stimulants of any kind etc). Sometimes I want to weep with frustration.
ReplyDeletePeople who are very ill are not in a position to advocate within the broader system either and so the rationing goes unchallenged because there isn't anyone with the capacity to speak truth to power. I've been in many a health consumer reference group over the years and one thing I've always wondered is why that burden lies with the consumer/patient? Where is the study of lived lives and how access that is timely and affordable keeps us active in our families, work and communities and less dependent. The medical model strikes again. I also think that the vomiting and nausea you describe is not understood - people judge it by their own experience of a little gastro here and there. I also think there is a particular response when it is women presenting with these issues that leads to the impact being discounted.
ReplyDeleteWonderful writing again... you've such a talent. I find the access to drugs between countries deeply frustrating - there are all sorts of things used for dysautonomia in the States (and i'm sure other places,but most the forums seem to be US based) that Dr's in the UK simply won't consider prescribing (IV saline, stimulants of any kind etc). Sometimes I want to weep with frustration.
ReplyDeleteMy doctor prescribing ondansetron completely changed my life and I couldn't imagine the frustration I would feel if I lived outside the US. An old flare could carry on for weeks but now can be shortened to a few days using that little pill to help me absorb what nutrients I can. As a result I am almost fully functional on a day-to-day basis. Keep advocating.
ReplyDeleteI'm in Canada and when I first started taking ondansetron only the brand name zofran was available and it was 173 dollars for 10 tablets...17 dollars each! There is now a generic disintegrating film available that is 1/4 of the cost, but it's still just over 4 dollars each, and I don't find it nearly as effective. I too get excited by the IV zofran you can get in the hospital - now that stuff is magic!
ReplyDelete