Surviving on the other side of care

The nonmobile, hard lump had been on my sternum (the bone in the center of the chest) for many months. As a physician, I had figured it was costochondritis – an inflammation – from years ago that had hardened with age.

A CT scan, however, stated otherwise: “Consistent with metastatic carcinoma or lymphoma… . ” That meant the lump was likely due either to a cancer that had spread throughout my body or to a cancer of the lymphatic system, which manifests in different locations.

Because the medical group with which I am associated has HMO coverage, I followed the organization’s rules as I began to explore my options. At first, I considered this process to be simply an inconvenience. After all, I take care of patients in this system, and I’ve never compromised the care I administer. Once in a while, I’ve had to fight on a patient’s behalf to offer a medicine or procedure, but I never put those fights in perspective – nor had my professional treatments refused.

But the delays began almost immediately, when my internist referred me to a surgeon for a biopsy. He demurred. “I won’t touch that. You need a thoracic surgeon.” Fortunately, a thoracic surgeon immediately squeezed me into his schedule. The pathology disclosed lymphoma. My brain shook into reality. I was now a patient. And I needed to take this patient seriously.

The next step: treatment. I called professional friends to discuss treatment options, then anxiously waited – for more than a month – for my oncology appointment.

My mind raced: Was it OK to wait this long to start treatment? Would the tumor progress? Would this delay make recovery impossible?

Because I was so impatient, the thoracic surgeon referred me to an oncologist friend simply so I could ask questions and gather information while waiting. My wife and I paid for this consultation.

At last, the appointment with the HMO’s thoracic surgeon arrived. But the doctor’s office was in a less-than-desirable part of town. During chemotherapy sessions, which last six to eight hours, how would my wife function here, I wondered? Then, after the oncologist botched and repeated my bone marrow biopsy (which is very painful), my wife looked up his qualifications. He had graduated from, and trained at, a foreign medical school. For a condition so serious, I would have preferred that my physician be the graduate of an American medical school. Other problems followed. Before chemotherapy was to begin, I called the oncologist repeatedly in an attempt to have specific questions answered. Finally, he responded.

No, he would not schedule me for treatment that would allow me to continue working during chemotherapy.

And no, he wouldn’t be including the newer monoclonal antibody specific for my disease that other specialists and my own literature search had suggested was appropriate.

He also added that I had a “leukemic” component to my disease. My white-cell count, tested in his office, had been 10 times normal. This meant an even worse prognosis, which alarmed me – and surprised me. I had had five previous normal counts. His response: “Well, in my office, your tubes had your name, so it must be so.” I responded, “I shall repeat it tomorrow.” The count was normal. I had been given someone else’s lab data.

Finally, I lost patience. I scheduled chemotherapy with the other oncologist. Because he isn’t in my health plan, I have to pay for it. The monoclonal antibody, the most essential and expensive part of treatment, was not offered by the oncologist. Yet this is the standard of care – the treatment widely regarded as the most appropriate.

But as frustrating as my experience has been, my story raises more questions about other people’s care than it does about mine. I have the education and training to question my experience. What of the typical patient?

I can pay for outside healthcare. What about the typical patient?

Not everyone can afford the highest level of healthcare, but should not everyone be considered equal?

One chemotherapy session can cost thousands of dollars, but we’re spending millions of dollars per day in Iraq. Shouldn’t we be caring for our own citizens first?

I am sick of hearing the insurance-plan comparison from colleagues, physicians, nurses and administrators who echo: If you purchase a Cadillac, you get a Cadillac; if you purchase a Yugo, you get a Yugo.

We should and must finance a medical care system that is fair and caring to everyone. We should not have people denied healthcare because they are uninsured or under-insured.

As for me, I am currently in remission due to appropriate medicine and care. I wish I could say the same for our current system of healthcare.

Dr. Joseph B. Michelson is an ophthalmologist practicing in the Los Angeles area.