Health Care and the Chronically Ill

Ms. Hodson resides in New York City.

Thelo health plans currently floating through Congress, which would financially coerce our poorest and sickest chronically ill into HMOs, will prove an unmitigated disaster. I have been a lupus patient for 27 years; for six years I served as a certified Lupusline counselor at the Hospital for Special Surgery in New York City. My own personal experience, as well as that of my many clients, has convinced me that HMO medical care causes unnecessary suffering and physical harm to the incurably ill.

Lupus is characterized by a totally unpredictable course which will vary greatly from one individual to another. Therefore, each patient’s treatment must be individualized to their specific needs and symptoms. Our physicians are constantly on alert and respond whether it is 2:00 in the morning or during a Sunday football game. We develop close, long-term doctor/patient relation ships, with an arsenal of specialists woven into a tight-knit care group. This care team must be specially trained in their specific disease area and be aware of all the numerous medications their patient is receiving. It takes years of trial and error to bring this team together.

With each illness progression, our doctors face the fact that their previous treatment is no longer working. They then truly practice the art of medicine—searching for the cornbination of medications which will save their patient’s life. After the crisis passes, they must then find a way to help us adapt, not only to the damage done during the latest episode, but also to the side- effects of the drugs we now need. Our physicians are at the forefront of medical research, with each treatment a double-edged sword, requiring them to constantly balance its risk/benefit ratio.

So, what is my experience at HMOs and why am I so terrified that my fellow lupus patients and others with chronic ailments will be forced into them?

First, I have repeatedly found that HMO physicians and allied health providers lack a basic knowledge of lupus and other complex disorders. They often fail to diagnose these diseases, and when they do make the diagnosis, they fail to institute appropriate treatment. They routinely refuse to give referrals to specialists, because in their ignorance they deem it unnecessary. In addition, they misprescribe drugs, seemingly unaware of the vast array of dangerous medications their patients use.

Secondly, the ten minutes HMOs allow for appointments is insufficient for almost anyone, but especially the seriously ill. In this hasty encounter, the doctor must do his review of patient history, ask any questions, conduct his examination, make his decision for appropriate treatment, and explain it all to the patient. With an incurable illness, this cannot be done. Yet I have been told by HMO doctors that ten minutes is all the time they are allowed—regardless of medical need.

Lastly, there is uniformly a lack of continuity and consistency in care. I enlisted in an HMO eight years ago. During this period, I have never seen the same physician twice. In dermatology alone, I’ve had eight different doctors. I gave up any hope of ever receiving competent medical attention at this HMO last July. I called saying I had a rash on my face and was developing a bald spot on my head—symptoms indicating lupus activity and the need to see a dermatologist. With full knowledge that I have lupus, but lacking the ability to care for a lupus patient, I was given the first available appointment, three months in the future. I called my private-practice dermatologist who has cared for me for 23 years. He saw me that day, gave me asteroid shot and free samples of the prescriptions I needed.

Since my diagnosis, my team of private-practice physicians have responded daily to my many medical needs. Never have I had to wait for an appointment. Never have they failed to institute appropriate treatment. It is only because of this kind of dedicated care by my team of independent physicians that I am alive today. Had I been restricted to HMO care, I would not have survived. If medical care for the low and moderate income chronically ill is restricted to HMOs, I fear for my life and for the lives of those I counsel and care for.