Sandra Coney: Wrong diagnosis in attack on Pharmac committee

Sandra Coney

The recent article (link below) by John Forman, of the Organisation for Rare Disorders, made unfounded claims about the Pharmac consumer advisory committee discussion paper on health industry sponsorship of consumer groups.

The paper was circulated by the committee, under its letterhead, not that of Pharmac. It was instigated by myself, as the committee chairwoman, and developed by the committee. Neither Pharmac's staff nor its board played any part in its genesis or writing.

In January, the paper went to the Pharmac board, which agreed the committee could circulate it under its own name. The board did not request any changes to the content, therefore the paper was entirely the work of the committee.

The committee is not a patsy group, as Mr Forman seems to believe. I think that I have a reputation for independent advocacy for consumers, and the rest of the committee consists of an experienced group of community advocates with backgrounds in health.

The paper in no way suggests interfering with the autonomy of groups, as Mr Forman implies. Neither the committee nor Pharmac have any power to do this. For Mr Forman to read this into the paper is imaginative indeed.

A covering letter set out the committee's desire to stimulate discussion on this issue, and asked for feedback on whether consumer groups would support the committee developing a checklist or voluntary guidelines that groups could use in assessing whether to accept industry funding.

In developing this paper, the committee was picking up on an international debate on pharmaceutical funding of consumer health groups that has appeared in many overseas health journals. This is part of widespread concern about the pharmaceutical industry's influence on patient information, research, publication of research results, and regulation of medicines.

The committee was aware this debate had not occurred here, where it seems especially important because, unlike consumers anywhere except the United States, New Zealanders are exposed daily to direct-to-consumer advertising of prescription pharmaceuticals.

As there is no national consumer health body, and no other consumer group had instigated this discussion, the committee saw value in starting the debate.

Consumer health groups here do have problems accessing funding, as Mr Forman says. There is no regular, reliable source of funds, but there is growing recognition of the important role such groups play in civil society.

Industry funding can look attractive, but there are pitfalls if groups are influenced by the donor, and then compromise the independence and credibility of the group.
Reputation is, after all, what the community values about non-government agencies that provide advocacy, support and information. Consumers want to know that the information they receive from groups is unbiased and provides options, rather than just promoting a particular company's product.

There is no information about the extent of industry funding of local consumer health groups, nor how they handle this subject, but there is information from overseas.

Email news service Health and Social Campaigners News International reported that between 50 and 82 per cent of European Union patient groups received pharmaceutical company funding for projects. It recently surveyed funding of 125 groups worldwide and found that donations by pharmaceutical companies to non-government organisations were led by marketing rather than being motivated by philanthropic reasons.

In almost all cases, pharmaceutical companies seek associations with patient organisations that specialise in one or more of the therapeutic areas in which the companies market or develop products.

Only four of the 125-strong sample of groups specified in their annual accounts which pharmaceutical company was funding them and by how much. Greater transparency in disclosing industry funding is being promoted overseas, and the consumer advisory committee paper gives examples of how this can be done.

For example, the large British Long-Term Medical Conditions Alliance has developed a guideline for itself and constituent groups. It states the relationship with corporations must be transparent; consortiums are favoured over single companies; corporations cannot coerce or over-influence policy or actions either implicitly or explicitly; and the alliance will not endorse products because it wants to ensure its members have access to the widest range of treatments.

Other strategies are for the groups to disclose sources of funding in annual accounts and on websites; to have clear conflict-of-interest and statement-of-funding policies; to put "firewalls" between funds and activities; and to monitor donors' ethical standards.

There are also many examples of groups that decline to accept such funding at all, about a quarter in the EU survey.

The committee is encouraging groups to consider their own policies and strategies, not in the spirit of telling anyone what to do but so groups are better equipped to deal with the dilemmas that can emerge, and keep the trust of the public.

The Medical Council has a statement about corporate funding for health professionals. It seems desirable that consumer groups who deal with the public are similarly accountable.

In raising the issue and providing practical strategies, the committee is promoting ethical and honest relationships between consumer health groups and the public.

* Sandra Coney chairs Pharmac's consumer advisory committee. She is responding to John Forman's view that Pharmac is out of order in canvassing restricted corporate funding of consumer health groups.