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What on Earth has Possessed Pharmac?

Pharmac’s Consumer Advisory Committee put out a discussion paper early this week on health industry sponsorship of consumer health organisations. (See http://www.pharmac.co.nz/pdf/090505.pdf) This is sure to be raising eyebrows among many readers. What has possessed Pharmac to embark on this crusade? And what is their mandate for doing it?

Pharmac’s role is to get pharmaceutical treatment for those who need it, from the budget the government gives it. And their Consumer Advisory Committee’s role is to provide Pharmac with input from a consumer or patient point of view. The Pharmac website gives more details of how the CAC is to carry out this function. But nowhere in the Act or the terms of reference does it state that the CAC is to be a tool in Pharmac’s ongoing battle of wits and wills with the pharmaceutical industry.

So why are they putting out a discussion paper that seems designed to restrict industry funding of support groups? Why have they assumed that their chosen group of advisors in the CAC have the authority to represent consumer perspective on this matter? And why have they covered only the benefits to industry, and the risk and benefits to support groups, yet conveniently not mentioned the benefits to Pharmac of a more restrictive regime implied by the options in their discussion paper?

Clearly there is a potential for industry funding to influence support groups, and at the extreme this could possibly compromise the independence of the groups. If there is no disclosure to make things clear enough, any biased behaviour on the part of a group would certainly become apparent to anyone who is more than a casual observer of the process. I have observed some things that certainly have raised my eyebrows on the part of a very small number of groups. But we are all big boys and girls. Should all be restricted because of the possibly unwise choices of a few? And do Pharmac think we are so naïve as to assume the companies do not have sales promotion as one of their objectives?

We can see the other side of the coin too. Support groups are often very poorly funded. With fewer resources they might not have enough staff to note that the “best treatments” website promoted by the Ministry of Health last year, actually recommends many pharmaceutical treatments that Pharmac does not fund here in NZ. Others such as the Prader-Willi Association may not have had the energy and persistence to take Pharmac to the Human Right Commission to get discriminatory and illegal wording struck out of its criteria, and then continue the battle to get the growth hormone treatment that is clinically indicated for their patient group, yet denied them by Pharmac. The Lysosomal disease group may not have pursued Official Information requests to get details of the Gaucher expert panel’s recommendations of April 2003 (yes that’s right 2003, and reconfirmed in 2004) to increase dose level for three patients, and may have given up trying to get Pharmac to make a decision on them. There are more issues and problems like this sitting “below the radar screens” that seem to pick up only high profile topics like flu vaccine supply problems, when they scan Pharmac.

Without past industry support, perhaps the Leukaemia and Blood Foundation would still be hoping for Pharmac funding approval of the life saving drug Glivec, as no resources would have been available for the very effective campaign they waged a couple of years ago.

We’d actually like to see more industry funding on the basis that corporate giving to poorly funded groups can help them fill their important roles in informing, supporting and advocating for patients and families. Our health budgets are not capable of providing enough money for these groups. Giving from industry would be good corporate citizenry in action. If only there were excessive levels of corporate funding available to support groups. What a wonderful problem to face. The restrictive options promoted by the Pharmac CAC’s discussion paper would only serve to weaken some support groups and to ensure others never become more effective.

You could well wonder if Pharmac is playing straight with us in this exercise, and if their Consumer Advisory Group has been naively caught up in their game. It is time to diagnose the problem and prescribe a remedy for the many difficulties with pharmaceutical access in New Zealand right now. My prescription for Pharmac:
• Stick to your core business of getting pharmaceuticals for those who need them.
• Send some very clear messages to government that you need more money to ensure your prime objective can be met.
• Recognise that there are political realities in health decision making and support groups have a legitimate right to try and influence you, and to influence the Minister who has power to direct you.
• Clean up your act and ensure you cease using non-decision making as a budget management tool.
• Cease trying to be the referee as well as a player in the game.
• Then when you have completed those core tasks, raise your concerns about the implications of industry funding in a more appropriate venue where Pharmac, industry and support groups are equals in the discussion. Do not try to be the final arbiter of what is acceptable.

Oh, and a couple of by-the-ways…..

A decision on the two-year old Gaucher panel recommendations would be really nice, or will more unanswered phone messages and more unreplied-to emails be the way things continue in 2005, as for 2003 and 2004.

The other 100 support groups you didn’t send the paper too are listed in the Support Groups Directory of our website at www.nzord.org.nz

Disclosure note.

NZORD has received one grant of less than $500 from an overseas pharmaceutical company that does not currently market drugs here. We accepted that money, as we would money from ANY legitimate source, after discussing with them our view of the marketing, regulatory and subsidy problems for rare “orphan” drugs in New Zealand. We took it as an unconditional contribution toward fulfilling the objectives of our organisation. Two years ago our approach to six major companies in New Zealand seeking industry support for our organisation resulted in “Dear John” responses from all of them.

NZORD received around 35% of its total income since its establishment in 2000, from Ministry of Health grants, and 25% from Lottery Grants Board. The balance we raise from individuals, Charitable Trusts and Foundations. Late in 2004 we completed a three year contract with the Ministry of Health that will generate about 40% of our annual income.

We note that the Consumer Advisory Committee is 100% funded by Pharmac.

ENDS

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