Today, patient advocacy groups flush with more industry dollars fly patients in for testimony and training about how to lobby for their drugs.
Some years ago, as the groups increased in number, Dr. Zuckerman said, she started getting email invitations from advocacy groups to attend so-called lobbying days explicitly sponsored by the pharmaceutical industry. The hosts often promised training and usually some kind of keynote speaker at a luncheon in Washington – plus a potential scholarship to cover travel. Now, lobbying days involving dozens of patients from a single group are part of the landscape.
Dan Boston, president of lobbying firm Health Policy Source, said, “It would be naive to think these people on a Tuesday afternoon just happen to turn up in XYZ places,” adding that the money isn’t necessarily a bad thing. Money tends to flow toward citizen groups that already have the same priorities as their funders, he said.
Marching into the future
Patient groups have been successful at campaigning for drug approvals, at times sparking controversy.