Lakeesha was already sick when I met her. Her concern was fatigue and weight loss. She had just turned 40, and although she looked perfectly healthy, a quick glance at her chart showed that she had indeed lost about 15 pounds over the past few months. My first thought was diabetes—African-American, overweight, it wasn’t much of a stretch. But a quick office test revealed a perfectly normal blood sugar. Her thyroid proved normal as well. Liver and kidneys—all normal.
Lakeesha had come to see me at the free clinic where I work in South Los Angeles. Some of our patients are undocumented immigrants, but many more are uninsured Americans, naturalized and native born. Lakeesha was born and raised in South L.A. In the past, she had been covered under Medi-Cal, the California Medicaid Program, but now she was no longer eligible. Enrollment requires a Social Security number plus either a qualifying medical diagnosis or a minor dependent in the household. Lakeesha had neither.
Over the next few months, the weight loss proved steady and insidious. She continued to look well, but at each visit she had slipped another few pounds. Her only other symptom was irregular vaginal bleeding, but she refused a Pap smear, the yearly cervical cancer–screening test. Her previous Pap, just over one year before, had shown a minor abnormality. I referred her for a CT scan of the abdomen and pelvis, but without insurance, I knew it would be a long wait.
As the lost pounds added up, I ran every test I could think of to diagnose Lakeesha’s condition. I recommended that she go to the emergency room to get that CT scan, but after waiting eight hours to be seen, she left without an evaluation.
Lakeesha hugged me the day that I told her she didn’t have HIV. “You just made my day, Dr. Rothman,” she said.
“I almost wish you did, Lakeesha,” I remember telling her. “HIV has good treatment that I could start today.”
Then she just disappeared. Her sister works at my clinic, and I would periodically ask about Lakeesha. “Tell her to come see me. Tell her I’m worried about her.”
“I sure will, Dr. Rothman. I’m pretty worried, too.”
When I saw Lakeesha again about nine months later, the change was drastic. She was not gaunt, but thin. Her chart revealed a 70 pound weight loss. She told me that in the interim her boyfriend had been in a serious motorcycle accident. He spent several months in intensive care, and she had spent the time at his side. On a more positive note, she had stopped bleeding, she said, and was even feeling a little better. I re-referred her for the CT scan.
During the intervening months, she had developed a profoundly low red-blood-cell count—anemia. We sent her to the ER, and the physicians transfused her and then discharged her without pausing to wonder why an otherwise healthy 40-year-old woman would develop such severe anemia. The discharge paper noted merely, “follow up with primary doctor.” Meanwhile, when I checked back with my referral coordinator, I discovered that her CT scan request had been rejected because the scanned referral was deemed illegible. We resubmitted the request for a third time.
Finally, one afternoon, Lakeesha relented to have a Pap smear. As I began the exam, blood spurted from her vagina, pumping, drenching the exam table and pooling on the floor. “Oh, don’t worry about that, Dr. Rothman. That’s just what it always does,” she reassured me as I packed gauze to quench the bleeding. “It’ll stop in a few minutes.”
I told Lakeesha that she had cancer. She had to go to the emergency room immediately, perhaps by ambulance if the bleeding didn’t stop. But Lakeesha estimated that the ambulance ride would add at least $1,000 to her bill. She was too busy to go that day anyway, she told me, what with her family reunion that weekend.
Then Lakeesha disappeared again. This time I was afraid to ask her sister what had happened. “It is not good,” her sister told me one afternoon recently. “Lakeesha has cancer, uterine, I think. She’s in hospice now.”
Tamika paused a moment. “But you know what’s the worst of it all? When the doctors first diagnosed her, they said it was too advanced. There was nothing more they could do. But then, when her Medi-Cal came through, they said, ‘How about trying some chemo?’ I mean, what is that? First there’s nothing they can do, and then, when she has insurance: ‘How about chemo?’ I thought there was nothing they could do.”
Lakeesha got caught in the catch-22 of California safety-net health insurance. To get insurance, you need a diagnosis. To get a diagnosis, you need insurance.
To me, the greatest disappointment in Lakeesha’s story is not the system, but the doctors. We have become disempowered by this crazy system—bullied by the financial reimbursement within which we work. How terrible for Lakeesha’s family to be left with the thought that if she had had insurance, her outcome would have been different. But how much worse that in all her interactions with physicians, myself included, none of us was able to make a difference.
After two rounds of chemo, Lakeesha’s kidneys failed and the treatments were stopped. “Jesus is good. You never know what tomorrow will bring,” Tamika said, willing herself to put a good face on Lakeesha’s tragedy. “You have a blessed day, Dr. Rothman.”
Ellen Rothman, HMS ’98, practices at a community health center in Los Angeles.
The opinions expressed in this column are not necessarily those of Harvard Medical School, its affiliated institutions or Harvard University.
