E-drug: Meeting for those with GBP 1173.83 to spare (cont'd)
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Dear e-druggers,
The problem is whether such guidelines for funding arrangements
between a company or an industry association and a patient group
can ever be enough. There is a fundamental conflict of interest
involved in accepting funding subsidies from a company that is in the
business of selling products to one's membership. Patient groups
presumably act as advocates for people with a specific health
condition, as well as providing a source of information, support and
mutual aid. Beyond the problem of whether information provided on a
funder's products and those of its competitors is independent or
promotional in nature, there is the problem of silence, when something
needs to be said.
If you look at the pharmaceutical marketing literature, you will find a
much more honest presentation of the aims of industry funding of
patient groups. This funding is often tied to a specific product or
product line.
To give you an example: a group representing patients with
Alzheimer's just held a public meeting in Vancouver a couple of weeks
ago. A clinical expert had been asked to speak, and provided a
glowing presentation on a promising new treatment: donepezil
(Aricept). This drug is not covered by the provincial drug
reimbursement plan, which pays for prescription drugs for elderly
people, chiefly because of concerns about limited evidence of
efficacy. During the discussion period following the presentation,
people in the audience stood up and presented testimonials about how
well the drug had worked for them. Someone who attended this
meeting said he was sure that these testimonials were not chance
events, they must have been planned in advance. Of course this is
pure conjecture... The conclusion of the meeting was that everyone
should contact their Members of the Provincial Legislature to press for
this drug to be reimbursed.
One of the problems with promotional events held by patient groups
funded by drug companies is that this is an area of drug promotion
very poorly covered by regulation of promotion in most countries. For
example, at meetings such as the one described above, the patient
group does not have to declare funding sources to the audience. Their
public information materials similarly do not need to specify this
information.
Many patient groups do excellent work and are started by people
who've experienced a serious health problem and are trying to ensure
that support and better health care is available for others in the same
situation. It's clear that many have gone to the pharmaceutical
industry not because they would especially like to sell products but
because their public funding sources have dried up and they would
like to continue the work they are doing and need funding from
somewhere.
There is a need for broader solutions than guidelines between
individual groups and a company funding them. One suggestion made
by David Gilbert, Andrew Chetley and others in the UK is to set up
blind trusts that could have money contributed to them from a variety
of sources, private and public, and would be administered
independently. If the pharmaceutical industry is interested in funding
patient groups out of a desire for philanthropy, this type of solution
could offer a means to maintain a high degree of credibility, contribute
to community life, and avoid any suggesting that they are directly or
indirectly buying the services of a patient group.
Health Action International held a seminar in December in Paris on
sponsorship of patient groups, a first step towards looking at policy
solutions. HAI will be publishing a report of this seminar. If you're
interested in a copy you can contact the HAI-Europe office at:
hai@hai.antenna.nl
With best regards,
Barbara Mintzes
e-mail: bmintzes@compuserve.com
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