Recent moves by some in Washington show the current public health establishment places public relations ahead of real work. It’s “performance care,” and it sadly trumps “elder care,” “pediatric care,” or even “cancer care.”
The problem is, sick patients aren’t helped by the short-term dopamine and polling boosts that politicians get. Their rhetoric and fight-picking don’t help one sick child or help discover one breakthrough treatment.
Performance care is all Washington prescribes these days, preening for camera time and speaking poll-tested words instead of making actual improvements in medical care.
What do I mean? I’ll give you three examples:
One was the dog-and-pony show the Centers for Medicare and Medicaid Services (CMS) put on last fall after being directed by the Inflation Reduction Act to annually determine a price the government will pay for select drugs. Theoretically, this would lower the costs for Medicare beneficiaries and advance Americans’ health interests.
Yet they sought input from patients – the actual people who need these medications – only after the decisions were made. In other words, rather than first learning how their actions would affect people, they made their choices without hearing from the people who required those drugs to live.
CMS did invite some input, but only a little and way too late. Of the ten drugs chosen in 2023 for price “negotiation,” I was selected to participate in nine of the sessions. As the founder of the nonpartisan patient advocacy organization Survivors for Solutions, I felt it was important to speak up on patients’ behalf about the need for developing of new drugs. In addition, I thought it was vital that CMS understand the risks government price controls pose to the attempt to discover life-saving medicines.
This was a serious issue with serious consequences. Millions of lives and billions of dollars hang in the balance. So how does the federal agency charged with gathering the patient experience and thoughtfully consider the actual experience of actual patients do this?
Here’s how: one-way Zoom calls lasting no more than 90 seconds. Oh, and limiting testimony to 10 or fewer patient witnesses for each medication. Not considered. Not thoughtful. Not a two-way exchange. Just a box-checking display.
That was performance care.
If you need another example of policymakers reducing life-and-death issues to popular entertainment, there’s a real blockbuster about to drop. The Senate Health Education and Labor Policy Committee (HELP) is holding a casting call for antagonists to play opposite their leads and supporting co-stars as they try to strong-arm drugmaker CEOs. This committee is supposed to investigate how to advance American healthcare for the American people. You would think that looking into rising cancer rates, rural access barriers, or mental health issues related to social media could all be logical topics.
But instead, they are setting up a televised cage match to grill companies who dared defend themselves in court and warn against government overreach’s impact on future cures and research.
Lastly, we learn that those performing on the biggest stage are the most out of touch. As West Wing policymakers tell patients they are just as angry as we are about drug access, an inspector general’s report shows the White House can’t even manage its own pharmacy and medical staff. According to reports, they actually hand out brand-name drugs for free with little oversight and have been asked to dose out controlled substances as “parting gifts.” These disclosures show us just how far removed those closest to power are from the reality of our problems. How can people getting free drugs and healthcare understand the hassle and expense felt by ordinary Americans?
As a disabled person with an incurable disease, I — like millions of patients — rely on the work of medical researchers to keep me upright and the hope that comes from their discoveries. These people don’t just pound the table in some hearing room and demand a new miracle drug. They buckle down and create one.
Their work in laboratories isn’t for show. Their clinical trials aren’t stagecraft. Their efforts help patients like me fight my illness and provide my family and children with the hope that a cure is possible.
Today’s healthcare policymakers have chosen to perform rather than produce, wasting taxpayer dollars and time many of us don’t have.
John Czwartacki is the Founder and Chairman of Survivors for Solutions, a nonpartisan, nonprofit patient advocacy organization that seeks to preserve and protect the medical innovations that give patients hope.
The views and opinions expressed in this commentary are those of the author and do not reflect the official position of the Daily Caller.