Earlier this month, Kaiser Health News launched “Pre$cription for Power,” a database that tracks Big Pharma contributions to patient advocacy organizations along with a report about the corrupting influence of this money.
The report found that 14 of the largest pharmaceutical companies provided a total of at least $116 million in funding to 594 patient advocacy groups in 2015, the most recent year for which data was available. The list of patient organizations includes Global Genes, publisher of Rare Daily. It notes this figure “dwarfs” the $63 million those companies spent on federal lobbying that same year by these companies.
Though Kaiser Health News produces plenty of good healthcare reporting, the effort here is unfortunately sensationalized. The “$” is more fitting for a New York tabloid headline. Rather than inform an important public policy debate over the pricing of prescription drugs, it appears to seek to influence it. The comparison between the money pharmaceutical companies spend on lobbying and their funding of patient advocacy organizations conflates the many things patient advocacy organizations do with lobbying. It creates a false equivalency.
The irony here is that the very logic underlying the report—patients groups are not honest actors in the public policy arena because they accept funding from drug companies—could be used to discredit the report itself. Kaiser Health News acknowledges at the bottom of its story that its coverage of prescription drug development, costs, and pricing is supported by the Laura and John Arnold Foundation. A March 2018 report in STAT identifies a network of groups the billionaire couple backs through its foundation with millions of dollars to influence the debate on drug pricing.
We need a robust debate on drug pricing in the United States. What should trouble patient advocates, though, is that while the report seeks to call attention to the influence the pharmaceutical industry exerts on the pricing debate, the database and report is an assault on the credibility of patient groups.
As they say in the world of science journals, correlation is not causation. There are many ways that pharmaceutical companies and patient advocacy groups have aligned interests. For instance, both drug companies and patients want to see new therapies brought to market as quickly as possible. Their interests may diverge, however, if there are questions about the safety of or efficacy of a therapy under consideration by regulators for marketing approval. They may also have divergent interests when it comes to matters of pricing.
Nevertheless, patient groups would be wise to take seriously the underlying potential for conflicts of interest that accompanies the funding they accept.
Just because a group takes money from a drugmaker, doesn’t mean that they are doing its bidding. However, because drug companies are ready and willing contributors and can represent a relatively low barrier to funding for patient groups, it is essential patient groups safeguard themselves against drug companies having undue influence on their activities.
In simple terms, patient advocacy groups have a core responsibility that should drive everything they do. They should act in the best interests of the patients they serve.
An important part of ensuring that is transparency. They should not only be transparent about funding sources, but the terms under which the funding is accepted. Is a grant unrestricted? Is it to fund a program or event? Is it to have patients support a company’s agenda on Capitol Hill or before regulators?
Patient groups should take the lead in setting the ground rules for interaction with drug companies rather than waiting for industry. They should set policies that clearly spell out how they will interact with industry and on what terms they will accept funding.
There’s not a one-size-fits-all solution for this. What will be the right answer will vary from group to group. A good starting point for organizations would be to review the Orphanet Journal of Rare Disease article “Principles for interactions with biopharmaceutical companies: the development of guidelines for patient advocacy organizations in the field of rare diseases.” The guidelines presented in the piece are based on work by the International Fibrodysplasia Ossificans Progressiva Association to establish guidelines for itself.
The value of doing this is not only to send a clear message to patients and funders alike, but to also think through these issues before they arise so that when they do, they can be recognized and addressed with clear thinking.
As patient groups have fought their way to have a greater voice with researchers, drug developers, regulators, and legislators, they have elevated their visibility and the role they play. But as evidenced by the Kaiser Health News report, flawed or not, the price of that greater visibility is greater scrutiny.
April 16, 2018