Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

In the 1970s and early 1980s, the words managed care meant something good. I was privileged to work with a forward-thinking group of benefit administrators, self-funded and Taft-Hartley trust health plans, researchers, and university and federal think-tank types who pioneered the concept and the benefits that accrued to the plan beneficiaries: the patients. Back then, case managers were expected to make sure the patients received the type of care, treatment and services they required, even it if cost the health plan more money. Second surgical opinions, additional days of hospital stay, additional lab services, health care and equipment in the home to accommodate the wishes of patients with terminal diseases - that was all part of the managed care matrix.

During this time, patients didn't know that the interventions that our claims examiners, nurse case managers, and medical consultants ran on their behalf was called managed care. They just knew that positive things happened, like their health plan paying for second and even third surgical opinions. A woman dying of ALS (Lou Gerhig's Disease) didn't know what it meant, but she and her family knew what it did: it provided all of the equipment and services she needed so that she could spend her last days at home with her family, rather than in the hospital. For my husband and I, it meant that, when he was diagnosed with terminal lung cancer, given a couple of weeks to live, and was discharged from the hospital with no supportive services or care discussed with either of us, the case manager went to work and got him re-admitted to the hospital for critical and terminal care that I could not have provided for him at home because I was too ill myself.

Initially, insurance companies and provider groups, such as health care maintenance organizations, fought the idea. Not a big surprise when you think about it. But then something insidious began to creep into their plan language. They began using the language of managed care, but perverted it into what we see today when it seems the only care being managed is the insurer, health care plan, health maintenance organization or perversely named managed care organization's bottom line.

Now, for example, instead of keeping an elderly, sick and injured patient in the hospital or send her to a skilled nursing facility, they release them to go home, as happened to a friend of mine's mother. My friend, too ill to care properly herself, told her mother's Kaiser doctors this, but they sent her frail, 80+ year old mother, sick with pneumonia, 4 fractured ribs and clavicle from a fall at home, home. She required constant care, which my sick friend was expected to provide without any home nursing visits. After they tried this the second time, my friend's personal physician told her to tell Kaiser that if they again tried to send her mother home that she would not be there, she would leave to stay with friends, something that bothered my friend deeply but she felt she had no choice: trying to care for both her failing, very ill mother would very likely kill both of them. As it was, her mother, finally hospitalized by Kaiser, died a few days later.

Now, while they will let their staff put up signs saying "Scent-Free Area", HMOs treat patients suffering from MCS as psych cases.

Now, rather than appropriately treating a patient with iron overload disease, the patient is told that nothing can be done until the organs fail and, when the patient has the temerity to object to that, asks the patient, "Are you sure yellow isn't your natural skin color?"

Times they are a-changing
The years 2000 and 2001 are seeing much needed changes being wrought in today's managed care plans. In California and other states, codes are being proposed and adopted as part of the various state codes that protect patient's rights and permit the suing of HMOs and other managed care entities when their denial of services harms or kills the patients.

Patients and their advocates still have to do a lot of work do document the problems, take appropriate steps to try to achieve desired outcomes, etc., but there is an increasing body of work, online and off, that can help. A number of consumer organizations are addressing these problems as well, and facilitate patient/advocate education and complaint filing.

Online Patient Guides

The California Patient Guide: Your Health Care Rights and Remedies (FTCR)

The Kaiser Papers

Information and Filing Complaints

Foundation for Taxpayer and Consumer Rights: Health Care

California "Duty of Ordinary Care" To Provide Medically Necessary Services (HMO Liability Act)

California Patient Access To Medical Records

California Department of Corporations - Request for Assistance

HMO Patient Self-Defense Kit

California Consumer Health Care Council

California Medical Association: Making A Complaint

HMOs - State Regulatory Agencies

Help In Fighting Managed Care And Hmo Abuses

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