NZORD Newsletter 2005 #4 - 30 April 2005

Hello everyone,

In this issue:
1 - Can we have confidence in Pharmac?
2 - The 2005 Influenza vaccination programme is confirmed.
3 - National Health Committee paper on people with chronic conditions.
4 - Now that the PGD guidelines are confirmed, what was all the fuss about? - and where is the money?
5 - Cox-2 inhibitor decision a victory for the voices of patients.
6 - The Boy Whose Skin Fell Off - Emmy award winning documentary on Epidermolysis Bullosa.
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1 - Can we have confidence in Pharmac?
Pharmac is regularly criticised for its restrictions on access to pharmaceutical treatments for New Zealanders, and some of its processes are very frustrating for groups to deal with. But there can be no doubt that Pharmac has also done a great deal to reduce the overall cost of pharmaceuticals, and they deserve praise for that. Lately however there have been increasing concerns with the processes Pharmac use for tender and supply, as starkly demonstrated by the problems getting adequate flu vaccine stocks. Click here to read more.

2 - The 2005 Influenza vaccination programme is confirmed.
The problems with vaccine supply have now been resolved for those normally offered the free vaccine, but there may a lot of confusion because of the extensive media coverage of supply problems. Details of this year’s influenza vaccination programme can be found at this link on the Ministry of Health website. [Link no longer active.] The programme will start later than usual but for all those eligible for the free vaccine, there should be plenty of supplies available of the appropriate vaccine, from the beginning of May.
Support groups are encouraged to publicise the availability of free influenza vaccine for those over 65 and for those younger people with chronic health problems. Influenza is a serious disease that kills many people each winter, and causes serious illness requiring hospitalisation for many more. NZORD encourages the fullest possible uptake of vaccine protection, especially in vulnerable people the programme is targeted to.

3 - National Health Committee paper on people with chronic conditions.
This one sounds bland enough in its title, but the executive summary talks in terms of a major reorientation of health services to meet the growing numbers affected by such conditions. It is also a topic that should resonate with the vast majority of support groups as it is an opportunity to have input into how the system deals with, or doesn’t adequately deal with, the needs of many we support. There are lots of discussion documents and consultations to deal with each year, but we tip this one as needing very close attention by all patient support groups. The discussion paper can be found on the Publications page on the National Health Committee website [link no longer active].
If you don’t have time or resources to make your own group’s submission, simply send a summary of your issues to us, and we’ll consider incorporating them in our submission.

4 - Now that the PGD guidelines are confirmed, what was all the fuss about? - and where is the money?
To read the words of some activists and commentators, you could be forgiven for thinking the end of civilisation was nigh as we went through the debates on guidelines for pre-implantation genetic diagnosis, and the passing of the Human Assisted Reproductive Technology Act. Now that the guidelines are in place here, you could be forgiven for wondering what all the fuss was about. There are many couples in New Zealand who know they are at risk of having a child with severe disease and disability, and they are absolutely delighted that new prevention measures can now take place here through our fertility clinics. A huge burden of stress is being lifted from those families. And hot off the press in this New Zealand Herald article, the British Law Lords are reported to have finally given approval for a British couple to use PGD procedures in the hope of having a HLA matching baby for a very sick child they already have. Click here for more commentary on the difficult process of getting these guidelines approved, and the big question of whether the government will pay for the procedure.

5 - Cox-2 inhibitor decision a victory for the voices of patients.
It is pleasing to note that Medsafe, the government drug safety body, has agreed that the group of pain relievers known as Cox2-inhibitors that include Vioxx and Mobic, will not be withdrawn following the safety concerns noted in various studies, but instead will continue to be available to patients with stronger precautionary advice to prescribing doctors, and clearer warning details on the content labels for these drugs. Click here for Medsafe’s announcement. This decision by the regulators has specifically acknowledged the influence that patient and support group submissions had on this decision. It is one more positive indicator that patient views are being taken more seriously in the decision making process.
There is no doubt that the studies on this group of drugs did show an increased risk of cardiovascular events such as heart attack or stroke, but many people who depend on them for pain reduction and quality of life have considered that an extra 4 chances in 10,000 of such an adverse event, is a risk they are willing to take. There is clearly more scope for informed decision making by patients on many aspects of health and disability issues, including drug safety, and the decision on the Cox-2 drugs is a welcome sign that patient and support groups’ voices are being heard and responded to. Medsafe’s final position of continued but restricted access through precautionary prescribing advice, is sound and sensible. It protects all our interests against possible risks but allows access to those whose quality of life is severely compromised without them.

6 - The Boy Whose Skin Fell Off - Emmy award winning documentary on Epidermolysis Bullosa.
This stunning British documentary on EB, the condition that causes skin to blister and peel off at the slightest abrasion, will screen on Prime TV at 8.30pm on Tuesday 3 May 2005. It will be preceded by a Holmes Special at 7.00pm on the same channel. Both items are well worth watching out for.

Regards, John

John Forman
Executive Director