NZORD Newsletter 2005 #6 - 30 May 2005

Hello everyone,

In this issue:
1 - Support groups respond to Pharmac committee paper on industry funding.
2 - Health Research Council grants announced - a record allocation.
3 - NZORD submission on Pharmac Operational Policies and Procedures.
4 - Clarification of NZ Herald article about industry funding.
5 - Submission to the Bioethics Council on Xenotransplantation.
6 - An unfortunate feast of spam emails.
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1 - Support groups respond to Pharmac committee paper on industry funding.
A recent meeting of support groups, meeting under the Access to Medicines coalition, called on groups to respond to the Pharmac consumer advisory committee discussion paper on industry funding, by rejecting the mandate of Pharmac to lead such a discussion. Pharmac was seen as lacking objectivity and had a clear bias in the way things were presented. You can click here to read the Pharmac CAC paper, and check out this link to see the response made by NZORD. Responses are due by 3 June 2005.
A conference on Consumer Health Information was held about 18 months ago. A repeat of a similar event would be a much better way of dealing with all of the issues concerning information about medicines and access to subsidy of them, rather than one interested party leading its own campaign on one half of the debate.

2 - Health Research Council grants announced - a record allocation.
The best health research news in ages showed immediate fruit when the budget announcement of an approximately 50% increase in health research funding, led almost instantly to the HRC announcing 75 grants worth $62 million. Check this link for a press release and full list of grants on the Health Research Council website.

3 - NZORD submission on Pharmac Operational Policies and Procedures.
Pharmac plays a very important role in our health system, and has won many collective benefits for us all in managing pharmaceutical expenditure. Yes!! Despite problems experienced by many patients and support groups, if Pharmac did not exist it would be a high priority to invent them as soon as possible. But the many problems certainly do need serious scrutiny. Pharmac recently reviewed its Operational Policies and Procedures, and NZORD submitted several points for consideration by the Pharmac board. Click here for the link to our submission. Let us hope the recent spate of criticisms of Pharmac does not result in a siege mentality, and that they are able to take on board the many criticisms levelled at them, and the solutions proposed.

4 - Clarification of NZ Herald article about industry funding.
In my Dialogue article of 16 May 2005 Pharmac offered a ready remedy on sponsorship, I made a statement that could infer that the Leukaemia and Blood Foundation received direct support from the pharmaceutical industry for its successful lobby campaign a couple of years ago to get subsidy of the life-saving cancer drug Glivec.
I was aware from discussions with the Foundation at the time that no industry funds were received for that campaign. My comment in the Dialogue article was a reference to support that is needed to maintain viable patient advocacy groups, and that limited industry funding in the past had helped their existence, and so some capacity to undertake such a campaign. However some misinterpretation is possible from the way this was expressed.
Given the current debate about industry support to patient advocacy groups, I appreciate the opportunity to clarify that the L&B Foundation campaign over Glivec was funded entirely by donations and fundraising by the Foundation.

5 - Submission to the Bioethics Council on Xenotransplantation.
This discussion led by the Bioethics Council was notable for the absence of a highly-charged political agenda surrounding the discussions, and some very good on-line commentary by various people about many aspects of safety, ethics, culture and spirituality, in using live cells or tissue from animals for treatment of human diseases. For the first time in many years the public was not being pressured to take a stand against a technology, then seek arguments to support the conclusion.
NZORD made just a brief submission that took an overview based on careful analysis of reports and the online discussions. Click here to read our submission. We also gave endorsement to the submission of Diabetes Youth New Zealand, who produced a detailed and well argued case for clinical trials of this technology to proceed.

6 - An unfortunate feast of spam emails.
Many groups have received a flood of emails in recent weeks that appear to have come from NZORD email addresses and which generate a multitude of “could not deliver” responses. Please be assured these did not come from NZORD nor do we have any virus problem affecting our server. It is the latest in a series of spam emails generated by mischief-makers who “spoof” addresses (send their message but take another genuine address as cover) to cause maximum inconvenience to all. Similar attacks have been made on several government departments. We can only hope the offenders eventually grow up from their puerile pursuits, and that Telecom and other internet agencies find effective ways to shut them down.

Regards, John

John Forman
Executive Director