A self help organisation or patients' organisation risks its credibility if it becomes identified with one or more companies. Its independence and good name are best protected by explaining its sources of funding, for what purposes each funding stream is used, and any competing interests. At present many voluntary health organisations volunteer minimal information about their structure and funding, and some are reluctant to discuss the subject. Charities that solicit funds from individuals may fear that knowledge of large contributions from industry could undermine appeals to prospective donors.
The Long Term Medical Conditions Alliance's guidelines “favour the use of funding consortia composed of two or more companies from the same industry” but do not consider whether industry funding should be limited to some modest proportion of a voluntary health organisation's total funding. If industry directly or indirectly funds a large part of the budget, say over 20%, the organisation comes to depend on it and this, if nothing else, will influence policies.
An interesting case is the Lymphoma Association, a charity that is somehow linked with Roche. The portal www.lymphoma.org.uk
leads to two sites: www.lymphoma.org.uk/healthcare.htm
for professionals and www.lymphoma.org.uk/support
for the public. The first is password protected, “is made possible by an educational grant from Roche Products,” and links to a Roche site. The second, which is freely accessible, nowhere mentions Roche. One consultancy firm manages both sites.
There have been instances of companies or their public relations agents creating new “patient groups.” In 1999 Biogen set up Action for Access in their effort to get the NHS to provide interferon beta for multiple sclerosis.5
The Medicines Control Agency stopped this as unlawful promotion. In the United States, activities that are more veiled have succeeded. The National Alliance for the Mentally Ill, “a grassroots organisation of individuals with brain disorders and their family members,” between 1996 and 1999 received almost $12m from 18 drug companies, led by Eli Lilly.6
The organisation promotes the nationwide expansion of PACT (Program of Assertive Community Treatment), which includes home deliveries of psychiatric drugs backed by court order.