The Price of Trust
On Friday, the Kaiser Health Network (KHN) unveiled “Pre$cription for Power,” a database of 12,000 donations from large pharmaceutical companies to US patient advocacy groups. KHN has done everyone a favor by making this information easily accessible. In addition, it has reminded us of the importance of disclosure at a time when confidence in the drug industry is at an all-time low. On the other hand, by stating that companies only support patient groups to buy their influence in Washington, KHN misses the boat.
Pharmaceutical companies and patient organizations find common ground in advancing disease awareness, education, research and development, and support. They work hard to prevent favoritism or promotion. Collaborations are vital to meeting patients and families’ needs. Unfortunately, there are inevitably companies and patient groups which poison the well and everyone suffers as a result. All responsible community members must ensure the conversation doesn’t focus on the bad behavior of these outliers.
Our experience is that patient groups strive to remain neutral, credible sources of information. Everyone benefits when patient groups educate, support and advance their constituents’ needs. We agree that patient organizations should not be in the business of lobbying for manufacturers; their core mission is compromised when they do. Because this issue is so important, we advocate for three ways of confronting this challenge before Congress mandates action:
First, disclosure. By disclosing their contributions, 14 of 20 drug companies in the S&P 500 found in the database help clear away suspicion about ulterior motives. We support our KHN colleagues’ call on the six remaining companies to make their data public now. Sunshine is inevitably the best medicine.
Next, company policies that respect independence. Smart industry partners know that preserving the integrity of patient groups is paramount. They never attempt to compromise partners’ independence. Smart companies also know the importance of boundaries on grants and contracts. They have policies in place that state when, how and to what level cash and in-kind contributions are appropriate. They answer sensitive questions like: “What percentage of a group’s budget can be funded?” or “How long should we support an organization with few if any other donors?” These policies and practices protect the company and motivate patient groups to work harder for a diverse funding base.
The third step is for every patient organization to have a board-approved policy on industry relations and support. The groups are the best guardians of their reputations. The National Health Council in the US, Eurordis in Europe, and other leaders offer model policies and practices ready for the taking. Gone are the days when association leaders can say only industry is interested enough to provide financial support. According to Giving USA, the reputable report on charitable giving, in 2017 only five percent of all American generosity came from corporations. Patient groups have a responsibility to attract support from patients, families, foundations, planned giving, and other means. Additionally, patient groups derive more from their ties with industry than direct financial support. MK&A’s STAR reputation report shows that scientific information exchange and sharing of business expertise are examples of how strong relationships provide benefits that for some groups have an even bigger impact.
In the longer term, all community members must remember that the core mission of many patient groups includes some or all of these programs: awareness, education, patient and family support, research and public policy. KHN refers to these groups as “advocates” and then equates advocacy with public policy, all to bolster its claim that companies only partner with patient groups to further their own commercial interests. Policy is only one of many ways patient groups seek to meet the needs of the patients they serve.
Patient groups that lobby to the extent permissible under IRS regulations or shape policy in other ways have a responsibility to keep their constituents’ needs at the forefront, even when they diverge from industry. In fact, patient advocacy sometimes means challenging industry, providers, and payers. Responsible and respected companies accept that patient groups may disagree with their policy platforms. A healthy dialogue, including open discussion about areas of disagreement, combined with full disclosure and appropriate policies and practices may prevent more regulation.
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