Big Pharma and advocacy groups
Although patients seldom know it, many patient groups and drug companies maintain close, multimillion-dollar relationships while disclosing limited or no details about the ties.The Inquirer singled out NAMI in the field of mental health. But pharmaceutical company funding is also flowing into the National Mental Health Association (see page 12 of their annual report) and Bazelon Center for Mental Health (see page 18 of their annual report).
At a time when people are making more of their own health-care decisions, such coziness raises questions about the impartiality of groups that patients trust for unbiased information. It also poses a challenge for groups trying to hold patients' trust and still raise money to serve them.
An Inquirer examination of six groups, each a leading advocate for patients in a disease area, found that the groups rarely disclose such ties when commenting or lobbying about donors' drugs. They also tend to be slower to publicize treatment problems than breakthroughs. And few openly questioned drug prices.
TAC is sometimes wrongly accused of accepting money from pharmaceutical companies, but we have had a policy since we first opened our doors that we will not accept such funding. That certainly makes fundraising more difficult, but it is our policy. TAC operates on a modest budget for a national organization, but our lean and mean approach has resulted in many successes.
We agree that additional regulation is not necessary – whether or not to accept pharmaceutical funding is a decision that individual organizations should make. But, the pitfalls are great when there is not adequate transparency or independence.
And many patients expressed surprise at the ties [between big Pharma and advocacy groups]. "I don't think that would make a difference as far as taking a drug," said Gloria Antonucci, 65, leader of a Montgomery County pain-support group that relies on Arthritis Foundation advice. "But I think it would make me, maybe, 250 percent more skeptical about what the group is saying."