I had an email back from PHARMAC which said as follows:
Dear Mrs Jefferies
Thank you for you comments about the Pharmacy Guild pamphlet regarding PHARMAC’s proposal that would see 70% of dispensings issued three monthly rather than the current monthly.
PHARMAC has continued to receive correspondence from concerned mothers and members of the public, like yourself, since the introduction of monthly dispensing in 1996. PHARMAC is currently consulting on a proposal that if implemented, would make it easier for people to get most commonly used medicines ’stat’ or in one lot. Not all medicines are included because of safety or financial concerns. PHARMAC is seeking the views of the public and submissions will be received until 30 May 2003. The full list of medicines that PHARMAC is proposing to have routinely dispensed three monthly is available on the PHARMAC website www.pharmac.govt.nz. In addition, the proposed wording of a new Section F is also included in the consultation material. PHARMAC would be interested to know your thoughts on whether these changes would meet your concerns regarding ease of access and convenience for your family. I would encourage you to have a look at the material and welcome your feedback as part of the consultation process.
Thank you again for taking the time to express your views on this issue.
Stuart Bruce
Manager, Communications and External Relations
PHARMAC
Level 1 Old Bank Chambers
Cnr Hunter St & Customhouse Quay
Wellington
Here is my response:
I’ve been to the web site and I cannot find the article that you refer to
with a list of drugs. (It was difficult navigating the site) My son is taking Floudrocortisone and Hydrocortisone tablets. As many people taking these medications need to increase their
medications if ill with a cold or such and it isn’t necessary to visit a
Doctor on those occasions as long as they increase their medications, I
would expect them to be on the list of drugs where availability in three
months lot’s is concerned. If they are not then I certainly would make
further complaint about that as it is more dangerous I feel for patients not
to have their medications at home where any steroid is concerned than it
would be for it not to be. This is because anyone taking those medications
could find themselves in adrenal crisis if they are unable to get to the
pharmacy to collect any balance due them.
My thoughts are not so much which drugs you should be allowing in this
category, but the fact that many people are on such drugs indefinitely and
are perfectly capable of managing their drugs at home without pharmacist
intervention. There are many disabled people out there that are not being
treated equal to the people that are allowed to collect their script in a
bulk lot. They are no less intelligent than the folks that find it
difficult to get to the pharmacist. By just changing the type of drugs that
you allow, you are virtually allowing anyone on a drug short term for a
period of three months only to access their drugs this way--when they may
have LESS knowledge of the drug they are taking. Atleast with people whom
have an ongoing disability and whom have been taking their med’s for
extended periods and for a long time to come, they naturally educate
themselves on their medications and therefore know all the safety aspects
about handling of their drugs. So even if my sons drugs are covered
within your new proposal, in a sense to me if there is anyone out there that
has a life long condition that facilitates being on a medication for the
rest of their life, but whose drug is not contained within your proposed
schedule, the point is is that they will still have the frustrations that I
have had since 1996 and other parents or patients like my son. That is not
good. It means there is still a small minority of people unable to access
their scripts easily when people who are perhaps on a drug short term
ironically can. I feel you are totally going about this in the wrong way
for that reason. As I have said no one with a disability or caring for
someone with a disability should have to collect a script monthly due to
their life already being made difficult in having or caring for a
disability/disabled person.
If my sons drugs where on that list, and others out there were still having
difficulties then that to me is a travesty. I wouldn’t want to have the
attitude that "I am alright Jack and it’s tough for the other’s."
The whole reason I complained was because I was complaining from the
perspective of any disabled person who has to get their Doctor to tick the
certificate exempt. It simply isn’t fair. I am no less intelligent than
others who have difficulty getting to the pharmacy and deserve to have my
life made as easy as possible where provision of my sons drugs are
concerned. Like wise when he grows, I want him to have the same privileges
and ease of managing his condition.
I don’t know who makes these decisions, but you really need to go from the
perspective of people who have these disabilities and alter the criteria for
exemption, not the type of drugs that can be accessed because that is rife
with possibilities for discrimination to still be a problem.
It’s ok to make the excuse that some
drugs should not be dispensed in a bulk lot, but like I said anyone can buy
panadol over the counter and a month supply of that is AS deadly as three
months supply and it is over the counter medication. Also, it is a poor
excuse to use when it is the responsibility of the people taking the
medications home to make sure they store them correctly. This schedule has
only been in place since 1996 and all over the world they allow ANY drug to
be dispensed in this quantity I assume except for New Zealand? It’s like I
said, some will take the drug home and not be used to storing it or taking
it and have three months supply when they perhaps need their pharmacist’s
guidance--and other’s will have to collect their script every month even
when they are on that drug day in day out for years. This is the
frustrating part really. I refuse to have someone inflict regulations
around the drugs my son is on just because they feel the odd person will not
store them properly or handle them correctly. It’s up to the individual.
Also if a patient is being prescribed a drug for the first time, maybe they
need to have their hands held for the first three months until they get used
to this. So altering the exemption part to say that anyone on a drug OVER
six months can get this by just ticking the box in my opinion is much better
than adding a few drugs to the "allowed" list of drugs that can be collected
in bulk. ANY drug in TOO much of a quantity is going to be dangerous
here---so where do you start even deciding which drug can be put on the list
and which cannot.
I’ve had anti depressants restricted in a months quantity before 1996 and
the ironic thing is, I could have STILL taken a months supply and dropped
dead with an overdose. :) Unless a drug has a short shelf life and has a
life of six months and more and the person needs it at home because they are
disabled and been on that drug for longer than six months to my mind there
is absolutely no reason why they should not be allowed that privilege.
Please visit this URL here and you’ll see what I mean. My son get’s 90 5mg
Hydrocortisone tablets per month and 30 100mcg florinef tablets then they
have to be divided up into four daily doses as follows:
3am:
5mg HCT - 50mcg florinef
7am:
5mg HCT -
12.00noon
3.75mg HCT - 25mcg florinef
5.30pm
2.50mg HCT - 25mcg florinef
Now I am the kind of parent (busy mother of 5) that needs to have him take
responsibility for taking his medications. So every month I split all these
pills up into containers as below.
I want you to look at this page I cut and pasted here off my web site and
see that once I have done this with his months worth of tablets there
technically would be none left. You’ll see how I am very organised with his
medications because he has had this condition since birth. We are very
precise with dosing right down the way cortisol is made in the body because
those 90 tablets are just for "replacement" of what his body would normally
make. Now when sick, adrenal glands normally make more cortisol, but his
cannot. So that leaves me with NO extra tablets on a months supply to
double or triple his HCT doses. I literally have had to open up all the
packs and put doses back together or double them here. This is where
mistakes happen if a parent is tired or run down or stressed. Please look
at that page. To me it is MORE dangerous for me to be treated the way I am
with the current schedule than it is for me to have three months supply
here. Now this is not the only medical condition where people do this.
Most people would do this as it is difficult to just cut the pills as you
need them. having them already cut and ready and loaded up in a pod for the
month makes life easier here for me.
Initially people will need educating but eventually, they learn all about
the drug they are on. That’s maybe after a period of 6 months from starting
the drug and then by that stage they know they don’t have side-effects and
that nothing needs changing and it is just a case then of making life easier
in the above way.
Whereas MORE wastage would occur by allowing people to collect a drug in a
three month lot when they don’t know if they will settle on it or have some
reaction and need a change. people on them in the long term don’t usually
need change. NO wastage in that case. See the page below:
There are several recommendations for dosing a CAH child. One is to dose with suspension and the other is in tablet form. Due to the in availability of small dosages in Hydrocortisone tablets at present though, many younger children are maintained on suspension made by their local pharmacy or their 5mg or 10mg tablets are split. There are two worries with this suspension method of dosing though. One is the instability of the suspension. It is natural for the contents to settle over time and unless shaken well this can make each dose inconsistent. That may lead to sickness in the child. The second problem is that suspension made in this way often only has a shelf life of seven days at the most and therefore this means a parent collecting weekly prescriptions of their child’s medications and also the Pharmacy spending a great deal of time preparing the medication carefully. The average cost in New Zealand for a bottle of Hydrocortisone supension to be made up is around $15 per item. Most children with CAH also have Florinef/Floudrocortisone once or more per day also which means also another medication being made up per week. So that cost is elevated to some $30 per week for medications. This cost is claimed back from the Government by means of exemptions.
The cost of tablets are much less than this. Also tablet’s keep for more than 6 months in a cool, dry place and if stored well. The only reason that CAH children have to use suspension as a newborn baby to toddler is because of the in availability of 1mg tablet’s Internationally. Tablet’s can be dissolved quite easily in luke warm water and then sucked up into a syringe and given to the baby. Typical doses for a newborn generally start around the 1mg mark. If smaller it is easy to split a 1mg pill into half or quarter. It depends how often the baby is dosed. Some may be dosed 12 hourly, but it is preferable to dose every 6-8 hourly (three times per day) which means those doses get smaller as they are spread out more.
Currently in New Zealand we are awaiting the approval of a batch of 1mg tablets by Medsafe. The tablets were made by Douglas Pharmaceuticals after I brought this to their attention. It can take up to 12 months for some drugs to be approved and this is seen as a new medication. However, Medsafe has assured us that they will deal as promptly as possible with the testing of the new medication. This will benefit many parent’s because it will give them a whole new freedom from collecting suspension on a weekly basis.
Splitting tablets is very easy with the aid of a pill cutter. Here is an example of a pill cutter:
I have had this one for many years and it was given to me by another CAH parent. I have seen them very cheap in the shops though on my travels. They cut the pills very accurately down to a quarter. This is illustrated below with mine:
Here the pill is placed into the pill cutter. It doesn’t matter if there are no lines on the pill. Just insert it as far into the "V" of the pill cutter as possible and then bring down the lid quickly. This will slice the pill clean in half.
Once the pill is cut in half it is extremely important to line the half tablet up in the pill cutter. The straight edge of the half pill must be at right angles to the sides of the pill cutter container. This will ensure as clean a split as possible. If one quarter is slightly larger than the other quarter then this will not be a big problem. The whole point of the exercise for me a lot of the time has been to increase, reduce or tweak my son’s doses in as small an increment as possible. Before cutting was approved by Doctor’s the only dose we had to give was 5mg (the lowest dose that Hydrocortisone tablets are available in) so I am sure many will appreciate that cutting back saves a child suffering side-effects.
This technique is recommended where dosing with tablets are concerned for children with CAH in the meantime until smaller doses in whole pills are available. I spend one day in the month slicing pills and then I put each pill dose in it’s own slot in a specially designed pill container. This means that older children can literally dose themselves. They just need to open up the MORN/NOON/EVE/BED container and take the relevant dose to the time of day. It saves time.
Parent’s of small babies can load syringes up for the whole day just by spending a short time the evening before loading up syringes. This saves fiddling throughout the day. These can then be popped into the refridgerator to keep them fresh and taken out just before they are needed, or taken out when traveling or going out for the day.
Because I do this one a month, I have a large plastic clear top container to pop all the weekly pill containers pod’s into and this keeps everything secure and in one place and easy to find. It makes life much easier doing things this way. It looks like this:
from every type of ongoing disability there is so that I can see that no one
else is going to have difficulty. I could not find it on the site and I’d
like to suggest that the buttons on the site have text on them when you run
your cursor over them instead of just pictures---it would make it quicker
for people to navigate.
My two cents worth...
Sincerely
A Jefferies