As the most intense health care reform effort in 15 years approaches a vote in Congress, the 46 million Americans without health insurance seem to have gone missing.

To be sure, examples of actual families or individuals without health insurance still pop up regularly in various news reports, although the frequency has declined as the focus turns from the need for reform to the politics of getting a plan passed. But the politics of reform is precisely the point.

What should be the roaring of a mass movement demanding that Congress act on its members’ behalf is in reality little more than background noise. While opponents of health reform have taken to the streets, and supporters are now readying their own rallies and high-profile bus tour, the uninsured themselves function as little more than stage props.

To be blunt, if the drive for universal health care should be seen as a civil rights issue, as Newsweek’s Jonathan Alter and former Sen. Tom Daschle, D-S.D., have both suggested, then it cannot succeed unless citizens of the only developed nation in the world to deny that right stand up as a group and speak out loudly on their own behalf.

The need for the uninsured to come together to put thousands of names and faces on their plight is starkly clear. At a health reform hearing held by Sen. Tom Coburn, R-Okla., and reported on CNN, a lone, sobbing, middle-aged woman spoke of being unable to afford care for her brain-injured husband. Coburn, a physician, glibly told her that “government is not the answer” – and was roundly applauded by the crowd.

Oklahoma has one of the highest rates of uninsurance of any state, with one in eight residents going without coverage. Would Coburn have dared the same answer if 50, 100 or 200 of the 640,000 Oklahomans without insurance had been in that same room to talk about their mothers and fathers, husbands and wives? Would he have changed his answer if just 640 of those 640,000 had shown up at his district office the next day to protest his response?

When one sees conservative religious groups beginning to mobilize against health reform because they genuinely believe opposition is “pro-life,” it is not an indictment of those groups’ compassion. Rather, it reflects the failure of reform advocates to communicate the stories of real pain suffered day in and day out by neighbors in their own communities. It is a cruel irony that the Urban Institute estimates that 400 Americans die each week because of lack of access to care, yet the imagination of the public has been inflamed by the prospect of “death panels” falsely alleged to be set to deny care to the elderly.

Some of the possible reasons for the failure of the uninsured to mobilize can be seen by examining Kaiser Family Foundation data. (KHN is part of the foundation.) Most of the uninsured are working families. During a deep recession, they might fear the impact of complaining that benefits are inadequate. Two-thirds are low income, and as a group they tend (unsurprisingly) to be in worse health than those with insurance. That might not leave much energy for more than getting through life a day at a time.

Then there’s the delicate matter of race and ethnicity. While whites constitute the largest number of uninsured, racial and ethnic minorities are represented disproportionately. Minorities constitute about a third of the U.S. population but comprise more than half of the uninsured. Perhaps 20 percent of the uninsured are undocumented workers – not a prime group to draw attention to itself through demonstrations and not a group that liberals necessarily want front-and-center when seeking middle-class, white support.

Finally, there’s the age factor. According to the Commonwealth Fund, 29 percent of young adults between 19 and 29 lacked coverage, the largest segment of the U.S. population without it. But the numbers alone hide an inconvenient fact: many of these “young invincibles” don’t think they need insurance and don’t want to buy it.

Put these factors together and you have a group that is in many ways the opposite of, say, white seniors angry over escalating payments for prescription drugs.

Yet even when taken together none of these reasons for inaction is truly convincing. The movement to bring equal rights to black Americans confronted economic and social barriers far more daunting, not to mention outright physical intimidation. The same could be said of efforts to organize Mexican grape pickers and other migrant workers. Moreover, whatever the perceived stigma of health and financial problems, the social ostracization of homosexuality was vastly more significant when the gay rights movement began.

What the uninsured are missing, plain and simple, is a group of individuals with the passion to organize them around this issue. Not someone to collect their stories to enliven a health policy white paper. Not someone to bring a handful along on a media interview or a lobbying trip bus. What the uninsured need is someone to organize them to speak, demonstrate and demand for themselves, en masse, in a way that cannot be dismissed, demonized or distorted by those who believe universal coverage can wait and wait and wait some more.

If there’s anyone who should understand the difference between, “We will do this for you” and “We will do this for ourselves,” it is a black man who began his career as a community organizer on the South Side of Chicago and rose to the presidency of the United States on the slogan, “Yes, we can.” It is time for Barack Obama to help 46 million Americans find their voice.

Michael L. Millenson, a Highland Park, IL-based consultant, is also a visiting scholar at the Kellogg School of Management and the author of
Demanding Medical Excellence: Doctors and Accountability in the Information Age
.