In setting the record straight, Joanne Rule, CEO of Cancerbackup, has
misquoted me. I made no general statements about Cancerbackup’s policies.
I referred to the lack of balance and disclosure of funding links to Roche
in the organization’s campaign supporting trastuzumab (Herceptin) in early
breast cancer. I am not alone in raising these concerns: a Lancet
editorial critiqued Cancerbackup (then CancerBACUP)’s actions  and
there were critical press commentaries.
If these critiques have contributed to better disclosure of funding
and greater attention to balance in information provision, Cancerbackup
should be applauded for its response. This does not eliminate the note of
caution evoked by the initial trastuzumab (Herceptin) press campaign,
Jean Mossman, of Cancer United, disagrees with my characterization of
the coalition as a patient group. Cancer United is not unlike many patient
groups in defining itself as, “a coalition of patients, patient groups,
doctors, nurses, researchers, industry, policy makers and major
institutions involved in cancer research and care.”  However, in this
case I stand corrected.
The Imperial College study that Mossman cites castigates regulatory
slowness in approval of new cancer drugs, without any attention to the
quality of pre-market data nor of regulatory decision-making, as well as
criticizing delays in access due to the time taken for reimbursement
decisions for licensed drugs.  The assumption is that all licensed
cancer drugs should be reimbursed. The only comment on health technology
assessments or pharmaco-economic analyses is a concern that they may limit
access and discourage product innovation. Nowhere is there a hint that
systematic reviews of the benefits and harmful effects of new drugs can
benefit patients, in helping to distinguish real therapeutic advances from
new drugs without any advantages over existing therapies in terms of
survival, quality of life or the frequency or severity of adverse effects.
Finally, Peter Martin of Norgine pharmaceuticals raises doubts about
Health Action International (HAI)’s status as a patient or consumer group
because of government funding and limited reliance on membership fees.
Health Action International (HAI) was founded in 1981 under the
umbrella of the International Organization of Consumers Unions (IOCU), now
Consumers International, to promote consumer interests in drug policy. HAI
is now an independent network with a focus on improving access to
essential medicines and rational drug use. Regional HAI networks in
Europe, Asia, Latin America and Africa have individual and organizational
members. Only HAI-Europe charges membership fees, and these are often
waived in Eastern Europe. Most of HAI’s funding, as Martin points out, is
from the Dutch Ministry of Foreign Affairs. Funding is obtained in open
competitions and earmarked for programmes of work jointly defined by the
four regional networks.
A lack of democratic membership structure or insistence on
professional qualifications as a prerequisite for membership would raise
questions about HAI’s status as a consumer group. It is hard to see how
public financing – ultimately from tax revenues – make it less of a
 Slevin M. Funding of patients' groups. Lancet 2006;368:202.
 Cancer United. Wide disparities in cancer care across Europe
affect patients’ chance of survival. Press release. Brussels: October, 19,
2006. Available at http://www.cancerunited.org/-media-centre.html.
Accessed May 22, 2007
 Afat R. Burden of cancer and variations in cancer care in Europe:
a review of published literature. Imperial College, London. Tanaka
Business School, 2006. Available
Accessed May 22, 2007
[This is an author's reply - no change from article]
Competing interests: No competing interests