Life Before and After the 1996 Congressional Testimony
An Update by Linda Peeno
I began work in the health care industry through a part-time job, which I thought would be temporary while I took a couple of years to care for my children. When I realized that something called “managed care” was beginning to radically change the nature of medicine and the care of patients, I left the clinical practice of medicine to concentrate on public education and patient protection. In the early 1990’s, few people understood how deadly the “system” of managed care had become. Corporations created “black boxes” of hidden tactics, schemes, and processes designed to put profits over patients into which few could see. As an “insider,” I tried to use my knowledge to help others with power to make change. Initially it was difficult, for few people listened or cared. Slowly, though, the stories of harm and death to patients began to break through and the public, professionals, advocacy groups, media and policy-makers began to take note. The first major Congressional hearing on “managed care” was held in May of 1996, and I was fortunate to have the opportunity to share my experiences.After that hearing, I felt an increased urgency about the need for change. With the rising attention to the problems, more people came forward to tell about their plights. I threw myself into the work, sinking every bit of energy, time and other resources into as much education and assistance as I could possibly give. I knew that with each passing week, more people suffered. At every turn, it looked as if we might achieve some change. Congress might pass effective patient protection or rid the industry of the ERISA loophole (that protects managed care companies from legal accountability for some of their decisions). States might protect patients or help the uninsured. Health plans and other organizations might become more patient-centered. Health care professionals, especially doctors, might revolt. I dreamed big dreams, but watched as one thing after another failed to materialize in ways that made significant differences to the real lives of patients. Meanwhile, I have watched the health industry increasingly turn us all into “consumers” and medicine into a commodity, casting us all into the marketplace in which our health and life becomes something we are expected to buy and sell like cars, computers, or any other commercial good. We now get what we can pay or fight for, which means many of us don’t get what we need, and many others are discovering that even with money, they suffer. Money isn’t enough to buy a caring, competent nurse at the bedside, a doctor who puts patients first, a safe hospital or patient-centered organization, or all the other ways of providing compassion, care, attention, tenderness, and value as a human being.
The years since 1996 became increasingly tough and often dispiriting, especially as I witnessed thousands new stories of harm and death, watched a system grow more sophisticated in its profiteering and cruelty, and faced my own limitations (as well as those of others) to make a difference. However, despite moments of deep despair and sadness for the prices that have been paid by many, many people, I have never given up hope that we would eventually wake up collectively and say “enough.” Health care is a universal medium. We are all mortal and vulnerable. We need one another. There are some things money cannot buy and the market cannot sell. During the past couple of years, I have experienced these lessons directly and I have been both humbled and transformed in ways statistics and theories could not achieve.
Though we desperately need radical health reform and urgent patient protections, a change in policy will not be enough. We need a change of heart and spirit with equal urgency. We need to create a culture of care, compassion, and connection – not just for health care, but for all our ways of need for one another.
The year 1996 marked a threshold – a time when a few patient stories ceased to be only anecdotes and became evidence of a well-designed, evolving system of potential harm and death. Now 2007 marks another threshold – a time when the breakdown of medicine and health care is evidence of a more fundamental breakdown in our societal and cultural values. Little happened in 1996, and things became unimaginably worse and many more people suffered. If little happens now, we are going to find that life from this point on will be shockingly unbearable for more and more people in more and more ways. Who of us will give a life this time for inaction? For me, 2007 marks a new phase of life-commitment, one that has now broadened beyond health care. We cannot have a care-centered health care system until we have a care-centered society, and I am personally committed to another round of sinking whatever I have – energy, time and other resources – into that work. At least, in this next phase, I don’t think I am going to feel quite so alone in the struggle.
