My Word's Worth: a weekly column by Marylaine Block

vol. 5, #25, January 24, 2000

TRY TRUSTING US

Gina Kolata's book, Flu : The Story of the Great Influenza Pandemic of 1918, is a book I would recommend to anybody just because it is a fascinating story about a forgotten human catastrophe. But it occurs to me that its main value may lie in the lesson it offers on the obligations and limitations of government.

In three months the 1918 pandemic killed more people than World War I did, at least twenty million worldwide. Unlike previous flu strains, this one didn't concentrate on the very young, the very old, and the very vulnerable, but killed millions of adults in the prime of life (including my grandfather, a small-town pharmacist). Unlike flu strains before and after, it killed an unusually high percentage of its victims. When it vanished, as quickly as it struck, it took with it our memory; the epidemic is hardly even mentioned in our history texts, or in encyclopedias.

That's probably what made the possibility of a recurrence in the 'seventies such a difficult issue for politicians and policymakers. When a couple of soldiers died of a swine flu nearly identical to the flu strain of 1918, the only people who knew exactly how deadly an epidemic could be were the medical researchers, and even THEY could not agree on what to do.

True, IF the few documented cases they had discovered became epidemic, it could kill millions of people. Yes, they could work flat out and develop a vaccine in time to ward it off. Yes, they probably could mount a huge public relations campaign to convince most Americans to get the vaccine in time.

On the other hand, nobody could be sure an epidemic was likely. Moreover, if the government mobilized a massive vaccination program,

• it would be a major gamble for vaccine companies to produce that much vaccine that fast, especially since they'd have to stop producing vaccines for other strains of flu that were also present,
• the companies would only do it if the government assumed liability for illnesses people would believe were caused by the vaccine, and
• if no flu materialized, the government would be left with egg on its face

What you have here is a classic no-win situation for government: the probability of epidemic is low, but the risk if it does occur is catastrophic. If many people die when the government could have prevented it, it will be reviled. But if it pours money into preventing something that turns out to be no threat at all, it faces death by a thousand Jay Leno jokes.

Y2K posed similar alternatives for government: assume the threat is overstated, don't spend money preparing, and pay the price if necessary after the fact; OR act boldly and expensively because the threat might well be as overwhelming as the most pessimistic analysts fear. The choice is the same: possible disaster versus possible egg on your face. No matter what happens, the government, already held in low esteem, loses more legitimacy. Which means it loses some of its power and will to act when other preventable disasters loom.

That's why I think issues that can affect us so dramatically should not be decided by government alone. It's OUR lives that are on the line. WE, who will pay the costs and suffer the consequences, should be allowed to know what the risks and probabilities are, what the costs might be, and who will bear them. WE should have a voice in deciding what to do.

At this point, some will predictably argue that only experts should make these decisions because ordinary people don't know enough, aren't smart enough, and don't reason well enough.

To which I reply that given this many imponderables, we have as good a chance of being right as the experts do. More to the point, if we know what is going on and have a voice in the process, we will be more willing to live with the policies we arrive at.

I'm sure of this because that's how the Oregon Health Plan came about. A panel of doctors and citizens devised a preliminary ranking of health care services in order of greatest benefits to the greatest number of Oregon's citizens, considering factors like cost, how well the procedures worked, and how much citizens cared about specific diseases or conditions.

These guidelines were used during public discussions all over the state, where people had a chance to weigh the costs and benefits of medical procedures ranging from vaccinations through organ transplants, and alter the priorities for the kinds of care all Oregonians should receive. The original rankings were then revised to place "primary emphasis on the ability of treatment to prevent death and relieve symptoms and on costs, with adjustments made in accordance with perceived citizen values (e.g., raising the rank of preventive care)." [History of the Oregon health Plan, http://www.ohppr.state.or.us/About/history.htm]

Not only did Oregonians get to weigh in on medical procedures and standards of care; they also got to make sure decisions were not made without considering their values. Telling their own stories of care given and care denied, they forced government to understand that medical and economic decisions affect the lives of real people, like poor 90-year-old Aunt Edna, chronically ill and miserable, whose nursing home forces care on her when she develops pneumonia. They demanded answers for questions like: What is equitable treatment? How do you deal with intractable pain? Do you sustain life against a patient's will or when patients are unable to speak for themselves? Who decides on treatment?

Does this mean there is no grumbling in Oregon about the health plan? Of course not -- bitching about government is our birthright. But it does mean that Oregonians understand why some kinds of care are available and some are not, because even if they didn't attend the meetings, they heard about them, on TV and radio and around the vending machines at work. More importantly, Oregonians grant legitimacy to the system in a way they would not have if it had been imposed on them by politicians and experts.

What did Oregon's government do right? It trusted its citizens. It asked for their opinions. It publicly altered its original guidelines because of those opinions. And it built continuing citizen participation and review into the system itself. By doing that, it gave itself permission to make an occasional mistake without incurring public wrath -- which is important because any human system WILL occasionally do stupid, indefensible things.

If something like the swine flu ever comes up again, I hope our government will learn a lesson from Oregon. I'd like them to tell us what the problem is, share their uncertainties with us. Let US evaluate the expert testimony. Let US remind our government that there is always more at stake than money and statistics: the decisions we make are also about who we are and what we value.