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Nelson Kull, executive director of Pathways, sees an additional benefit to consumer employment: it provides patients with a first-hand look inside the system, and this can help defuse the sometimes antagonistic relationship between consumers and caregivers. "Some people criticize doctors and pharmaceutical companies for making a lot of money," says Kull, "but they gave me back my life. I once told meeting [attendees] that yes, psychiatry and medical care cost a lot, but your car costs a lot. I can't drive my car without my medications, so which comes first?"
Communal helplessness and outrage at the changes in mental health care have left my colleagues and me dazed. If I feel so powerless, I can only imagine how much worse it is for those vulnerable people who are denied the treatment they need to survive.
Three years ago, I became the media chairperson for the National Coalition for Mental Health Professionals and Consumers. Lead by Karen Shore, Ph.D., and Ivan Miller, Ph.D., the goals of this grassroots organization are to educate the public about the problems of managed mental health care and to develop alternative health delivery models. I signed up enthusiastically, despite having no experience working with the media. I saw a chance for patients who had been denied care to speak out about their experiences, if interested reporters could be located and patients coaxed into speaking out.
Today, newspapers, magazines and TV regularly apprise us of the difficulties with managed care: how patients don't get what they need while corporate salaries and profits soar. Three years ago, there was very little coverage of these drastic changes in health care delivery. I wasn't sure how to interest reporters, so I fell back on what I knew how to do-build relationships. I contacted local journalists and asked them what they knew about managed care and whether they were interested in writing about patients who had run into difficulty with their managed care organizations. Some were interested, others weren't. Some were smart and perceptive, others just didn't get the issues. I discovered that journalistic balance could easily be tossed aside due to ignorance or personal bias.
Through the National Coalition's contacts of professionals and patients all over the country, I began the search for patients willing to speak openly about their experiences with managed care. Many were reluctant to speak out. The fear of retaliation and the shame of being "mentally troubled" were insurmountable barriers for the majority of people.
Many doctors felt they couldn't ask their own patients to speak out because of their therapeutic relationship with them. As the coalition became known, therapists realized they could advise their patients to get in touch with us. After a solid year of contacting journalists and developing relationships with them, the once hesitant and skeptical reporters became more willing to dig into these stories and use them to illuminate a pattern of systematic denial.
Three years ago, people were not in HMOs and managed care organizations in the huge numbers they are today. With downsizing, their eyes on the bottom line, employers have shaved many benefits from their employee packages, including the higher premium health insurance plans. Consequently, the numbers of people in managed care plans have exploded and so have the problems. With this increase, more and more people who are sick are enrolled in managed care.
One of the more poignant stories came from a young woman whose sister had taken her own life after a managed care doctor had abruptly changed her usual medication to a cheaper brand that fit the managed care company's drug formulary. I talked with the surviving sister over the telephone for hours to help her through the shock of this loss, and I encouraged her to talk to the press.
This story and others like it fueled my efforts to reach for the most influential news outlets available.The height of media coverage of managed care disaster stories was reached last fall and winter with the airing of two stories on "Nightline" in the fall, and one on "60 Minutes" in January 1997. All the patients who had participated in these pieces and all of the experts who had given their time to speak out were richly rewarded in being heard by millions of people. The fact that our stories had reached the most prestigious members of the media in the country gave our voices legitimacy in the public eye. A kind of media contagion spread from these airings, and has created what some would call a backlash against managed care abuses. This focus continues because the expedient business values that drive managed care and treat people as commodities are frightening and fundamentally at odds with the core values of quality medicine.
Where does this leave us now? I think greater media coverage has spawned greater awareness of the difficulties with managed care and has provided legislators with vital information. Certainly sharing their stories has made many people feel less alone and isolated within a system they find frustrating and depriving. I think media advocacy has helped doctors find support for their right to stand up to these abuses and band together in greater numbers to fight for integrity and quality in mental health care delivery.We must remain reliable information sources for the press, especially about issues of the validity and reliability of research data and about satisfaction surveys that managed care touts in substantiating claims that quality care has been maintained. The media consistently gives these managed care claims coverage without detailing the data on which they are made. For instance, satisfaction surveys are often based on questions such as, "Did you find the waiting room satisfactory?" or, "Was there available parking?" and not on whether or not the actual care given was effective. In other areas, such as in evaluating long-term outcomes for schizophrenia or manic depressive patients, or evaluating cost containment for them, the data from managed care isn't there. How is it possible to know how brief, repeated hospitalizations will affect the course of schizophrenic or bipolar illness five or 10 years from now? How valid are outcome results reported by therapists if these reports are a part of their own job evaluations and are tied to getting referrals?
We must help reporters understand the basics of research design or they will pass on managed care's meaningless claims about quality and "scientific evidence."
I only hope that at this point in media advocacy, people feel freer to speak out both about their satisfactions and difficulties with the managed care system. The goal: that everyone will care enough to work toward a system of health care delivery that is based on the core values of quality, integrity and fairness.