Letter from my pharmacy: McCraes Pharmacy 100 Fergusson Street Feilding We have a prescription here from Dr Brown at the Children's Clinic at Palmerston North Hospital for Ashley Mayor, for Hydrocortisone 5mg tablets. The dosing instructions for this are as follows: 5 mg in the morning 3.25 mg in the afternoon, and 6.75 mg in the evening. There is no practical way of obtaining such a dosing regime by using the 5mg tablets while still assuring complete accuracy of the dose. Breaking a tablet in half will obtain 2.5mg, and one quarter of a tablet will obtain 1.25mg. 3.25mg equates to 65% of a tablet, and 6.75mg requires 1 whole tablet and 35% of another, effectively requiring some tablets to be broken into thirds. Assuming that the Hydrocortisone is evenly distributed through the tablet breaking the tablets in thirds will provide only an approximate dose at best. I can appreciate the fact that you would like to have the dosage at the exact amount that the Doctor has prescribed for you. While the variation in dose obtained by breaking tablets into approximate thirds may not be large it is still understandable that you wish to have the dosage as exact as possible. The best way of doing this would be for us to make the Hydrocortisone up as a suspension and using a graduated syringe (or similar) to measure an exact dose. The only problem with this approach is that there is not such a proprietary product available in New Zealand. Any suspension produced by us would not be eligible for subsidy from the Health Department, as Hydrocortisone powder is only subsidised when added to a dermatological base (used for topical application). Hydrocortisone injection is fully subsidised, however the bioavailability of the injectable form, if used orally, will not likely conform to the bioavailability of the Hydrocortisone from the tablet, which would result in altered blood levels of the Hydrocortisone and some further alteration of the dosing regime. Funding for a suspension could possibly be obtained from PHARMAC under "exceptional circumstances" but I am not sure as to the criteria for acceptance for such funding. At this stage the only subsidised product I can supply to you is the Hydrocortisone tablets for you to break as well as you can in order to obtain a dose close to that prescribed. Thank you Clinton Hercock Then a letter from the Exceptional Circumstances Panel: 24th October 2001 Exceptional Circumstances Panel Panel Co-ordinator Room 28 Level 4 Building 13 Green Lane Hospital Phone (09)630 9943 x4949 Fax (09) 631 0753 Email ecpanel@adhb.govt.nz Dr Jeff Brown Paediatrician MidCentral Health PO Box 2056 Palmerston North Dear Dr Brown Name of patient: Ashley James Stewart Mayor Address: Witheld DOB: 27/01/92 Medication Hydrocortisone Syrup/Suspension The exceptional Circumstances Panel has examined your application for the above named patient. The conclusion they have reached is that this case does not meet the criteria for Exceptional Circumstances. The purposes of the Exceptional Circumstances Scheme is, in rare and unusual situations, to supplement the decisions made by PHARMAC through the Pharmaceutical Schedule. Rare and unusual situations are considered to be those: 1. Where the condition affects less than 10 people nationally OR 2. Where the person has experienced an unusual reaction to alternative funded treatments (in this case an unusual reaction is considered to be a reaction experienced by less than 10 people nationally) OR 3. Where the combination of circumstances is so unusual that it would be appropriate to fund this person in these circumstances and decline all others also seeking finding for the medication. All applications must meet one of these initial entry criteria. In the case of this application there is no evidence to suggest that one of these is met. This patient’s condition must meet one of these initial entry criteria. In the case of this application there is no evidence to suggest that one of these is met. This patient’s condition is not rare, and the response to alternative treatments is not unusual. There is nothing to suggest an unusual combination of circumstances such that it would be appropriate to fund this case and decline all others seeking funding for this medication. In these situations funding may be available from WINZ as a disability allowance. Should you wish to provide additional information to demonstrate that one of the above criteria is met, please do so in writing. Yours sincerely Exceptional Circumstances Panel Co-ordinator Cc Mrs A Jefferies Now this is a vital medicine that even babies need---suspension!!! Since the liquid cortef recall I presume that this has not been subsidized EVER in this country. I went to the PHARMAC site last night and noted that they have a separate division for dealing with the claims. I'd say that there cannot possibly be more than 10 children Nationally that have had the problems Ashley has had the last 7 years. Most were only put on tablets a year ago after the recall. For the NZ Government to even register this form of the drug (HCT powder--which was the recipe that the consultant faxed to McCraes our pharmacy) with PHARMAC for consideration for a subsidy it will cost $11,000 I found out. That I think is why they have not subsidized such. There is a 1 yo with swcah under the same consultant that has had the meds approved! He was dosed: 1.5mg 1mg 1.5mg All odd doses to get to splitting tablets. I felt that a 9 yo child had a right to closer titration of meds too, and expecially if he had been on tablets for years and not controlled well enough on such as a child. My local MP has written to the Minister of Health several weeks ago but nothing has come of it at all. Today, I finally receive this from the head of the hospital whom I complained to about my sons health care by e-mail and was blocked: 13 November 2001 Mr and Mrs Jefferies 10 Fitzroy Street FEILDING Dear Mrs Jefferies I wish to reply to your letter received by MidCentral Health on the 7th November 2001 in regard to your email being blocked by the mail marshall. As this type of question is beyond my computer expertise I sort a response to your comments from the Information Systems Manager at MidCentral Health. His response is as follows. “Emails larger than 3mb are blocked but are able to be released once it is confirmed that the correspondence is business related. Your correspondence was deemed as a large message. Any correspondence that is blocked is also automatically removed from the system after five (5) days if it is not confirmed as business related. ‘Junk mail’ is identified by phrases in the text. ‘Send to everyone’ ‘make money fast’ etc. This mail is able to be released if incorrectly detained. MidCentral Health does not block email by specific address, although the system has the capacity to do this.” Further from the Information Systems Manager’s report. “I can confirm that MidCentral Health has not blocked any email except for correspondence that exceeds our size limit (3mb), containing computer virus, contains phrases which seem to identify chain letters, get rich quick schemes, video, sound and some other file extensions which may be a threat to the computer network.” I trust this explains the issue of the correspondence block and the failure to ensure access. I understand you have an appointment with Dr Hofman on Friday at 2.30 pm. It is expected the issues of monitoring and medication will be resolved. Yours sincerely Lesley Yule Customer Relations Co-ordinator The e-mail only had medical content in it. It was e-mailed to the consultant in Auckland and my family GP and was not blocked by either of those people. The only block was at the place where my sons health is dealt with. Our appointment on Friday was for a long over due health check for Ash. Now it will be spent it is flying from Starship Hospital. We will have Advocacy Network Services with us and hopefully at the very least, this hct suspension will be approved. The other day the pharmacist asked if we would like it chocolate flavored? I said frankly, you could flavor it 'liver' (he hates that!) and I would not care as long as he is dosed properly!