A recent New York Times piece on a study that “found that more than 80 percent of [patient advocacy groups] accept funding from drug and medical-device companies” provides a case study of this approach to advocacy.
Patient groups are important voices in our health care system. They help ensure debates over medical treatment remain tied to the real world, patients can help regulators and health care professionals better understand the human trade-offs involved in treatments, and patients can report on the effects of drugs and devices in ways computers and modelling cannot. The importance of patients in health care is one reason their input was mandated in the 21st Century Cures Act, bipartisan legislation President Obama signed into law shortly before leaving office.
But there are lots of patients, and they suffer from lots of ailments. There are also lots of doctors, researchers, labs, and drug and device companies trying to cure those ailments. But there is a finite amount of money and time to devote to that research. There are also a finite number of people who can review that research to ensure the drugs and devices work. Who gets heard while others do not? Which diseases get marches and ribbon and ultimately treatments, and which get ignored? The answer determines how millions of people live, and can drive hundreds of millions of dollars to those who make the drugs and devices used in those treatments (the pharmaceutical giant Pfizer had nearly $50 billion in revenue in 2015).
One way to get to the front of the line for research dollars and drug approval is by lobbying the funders and reviewers directly — calling members of the House Appropriations Committee, researchers at the National Institutes of Health, and regulators at the Food and Drug Administration, and saying “fund this, research this, approve this.” Such an approach can work, but on its own has limited utility. It’s like saying “now that you’re at Disneyland, you should buy Mickey Mouse ears with your name on them” when the real power over a vacation is deciding to go to Anaheim rather than Yellowstone in the first place.
Enter the drug and device companies funding of patient groups. If those who determine funding, research, and approval are hearing about a specific disease they are more likely to be open to the company that can provide the cure. The challenge isn’t proving diseases are bad, it’s proving that this disease merits more attention than that disease — the challenge is one of focusing finite attention and funding toward and thus away from. As such, smart drug and device companies do not start by selling the cure, they start by selling the problem — a problem to which they happen to have a solution. They fund patient groups to raise the profile of children in desperate need, of families straining under the emotional and financial burdens of care-taking, and the hopeless fear of watching a loved one suffer from the condition the company can help cure — which is necessarily at the expense of another child and another family.
The suffering is real. The fear is honest. The pain and burdens true. But policymakers cannot pay attention to all suffering, burdens, fears, and pain. Recognizing that time and attention are zero-sum, smart drug and device companies invest in drawing that attention to medical conditions to which they have promising responses. Some of that attention is drawn through the patient groups the companies help fund. Having secured that attention, the companies don’t need to sell their cures, that their cures will be purchased is nearly a foregone conclusion. The first time you go to Disneyland, you buy mouse ears with your name embroidered on them, Disney doesn’t have to sell them to you because you already bought the ticket to their theme park rather than going on a hike.