John Forman: Pharmac offered a ready remedy on sponsorship

Pharmac's consumer advisory committee has just made public a discussion paper on industry sponsorship of consumer health organisations. It is sure to have raised eyebrows. What has possessed Pharmac to embark on this crusade? And what is their mandate for it?

Pharmac's role is to get pharmaceutical treatment for those who need it from the budget the Government gives it. Its consumer advisory committee's role is to provide Pharmac with input from a consumer or patient point of view.

Nowhere in legislation or terms of reference does it state the committee is to be a tool in Pharmac's battle of wits and wills with the pharmaceutical industry.

So why is it putting out a discussion paper that seems designed to restrict industry funding of support groups?

Why has it assumed that its chosen group of advisers in the committee have the authority to represent consumer perspective on this matter?

And why has it 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 its 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 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 naive 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.

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 its patient group, yet denied it 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 to increase the 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, such as 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 lifesaving drug Glivec because no resources would have been available for the very effective campaign it waged a couple of years ago.

I would 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 committee's discussion paper would only weaken some support groups and ensure others never become more effective.

You could well wonder if Pharmac is playing straight in this exercise and if its consumer advisory group has been naively caught up in its game.

It is time to diagnose the problem and prescribe a remedy for the many difficulties with pharmaceutical access right now. My prescription for Pharmac is:

* Stick to your core business of getting pharmaceuticals for those who need them.

* Send some very clear messages to the Government that you need more money to ensure your main 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 of Health, who has the power to direct you.

* Clean up your act and ensure you cease using non-decision-making as a budget management tool.

* Stop trying to be the referee as well as a player.

* 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, by the way, 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 this year?

* John Forman is the executive director of the New Zealand Organisation for Rare Disorders. It has received one grant of less than $500 from an overseas pharmaceutical company that does not market drugs here.