Yes, Patients Can Shape Public Policy . . . But Will Anyone Listen?

When I was a newbie in Washington, DC in the 90s working for US Department of Health and Human Services (HHS) in the Office of Organ Transplantation (DOT), one of my jobs was organizing public hearings to finalize organ allocation policies — in other words, identifying which factors (age, geography, race, blood type, waiting time) the federal government should use to determine who received a scarce organ and in what order.

The most contentious policy involved liver transplants, made all that more difficult with the transplants of Larry Hagman, Mickey Mantle, and children who showed up on Oprah. Public out cries of unfairness and “jumping ahead on the list” were at an all time high.  After nearly ten years of internal debate, HHS held a public hearing on the issue at the National Institutes of Health.  Over 120 individuals requested to testify and it was my job to put them in panels of seven, rank the panels according to priority, and develop an agenda for the two-day hearing.

The weeks before the hearing I received calls from no less than 50 on the list asking that they be put on a panel that “testified on the first day,” “went just before a break,” “didn’t come right after lunch,” etc.  All wanted to be front and center so their opinions and data would receive priority viewing.

This hearing has stuck in my mind now for nearly 20 years of policy making in Washington because I did what many feds did in my position in the 90s: I put the patient panel last. There were only nine of them, all of them waiting on a list that had hundreds of names ahead of theirs. None of the hospital administrators, nurses, surgeons, economists, technicians, pathologists, or payers wanted to be on a panel with patients so I created two panels for the patients — one with five, one with four  — and gave them extra time.

By the time the patients came to the table to testify, there was no one left in the auditorium, only the federal officials sitting at a long table in the front taking notes. I remember vividly two things from that day. First, when the patients started to speak the officials all put their pens down, leaned back in their chairs, held a steady gaze of empathy, and listened. The stories of financial ruin, lost employment, days and weeks of doing nothing but reading stacks of medical forms and filing insurance appeals, watching their skin turn yellow, not being able to bathe alone, and worse consumed the empty chairs. Their stories were heart-wrenching and brought tears to people’s eyes (well, to those still in the room).

But more than that, I noticed that the federal officials never wrote a single word. They took no notes, never picked up their pens. At the time, and probably for a few years to come, I thought of that as an expression of empathy or compassion on their part.  They gave the patients their undivided attention.

But what I’ve come to realize in the past many years walking the halls of Congress and sitting through hearings at CMS and FDA and watching advocacy groups arm-twist to get a seat at the table is that no one expects the patient’s testimony to evoke anything other than an ubiquitous “OMG, I can’t believe that happened to you” reaction.

So, health policy wonks, please weigh in here.

When have you worked with a patient or witnessed a patient whose public testimony added credence or a meaningful difference to the policy outcome.  Was it on the Hill? At an agency briefing?  At a media briefing?

What about their story not only had officials sitting back and listening, but picking up their pen as well?

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