doc w/ Pen

How do you decide between potentially life-saving cancer treatment (sell your bicycle) and your children’s education (keep your bicycle)? That’s precisely the decision one patient I met had to make. He kept the bicycle, pictured here hanging from the wall of his home.

Quick, decide: your health, or your children’s education?

No one should have to make that choice. Yet that’s exactly the choice one of the Naggalama Hospital palliative care patients had to make when he was told he had cancer and needed treatment at Mulago, the government hospital in Kampala. He said the only way he could afford this potentially life-saving cancer treatment was to sell his bicycle. But without the bicycle, his children couldn’t attend school. This father made his choice last year — his children’s education — and this year we saw that his cancer has spread.

This is a common story among patients I’ve met here. Someone is diagnosed with a serious illness. The disease has often already progressed because people here frequently don’t seek medical attention when first becoming ill (the subject of my research project). Once diagnosed, the person is usually referred for treatment at Mulago. Often, they don’t go. Or they delay. The reasons for this are complex, I’m learning.

Some people fear Mulago, and not without cause. For starters: it’s an enormous hospital, 1,500 beds, I’m told, with a census that can reach 2,500. Those extra patients sleep on the floor. (Although renovations are now underway in an attempt to fix the overcrowding, and when I visited Mulago I didn’t see any patients on the floor.) Lines are long. Drugs are often out of stock, so the patients’ attendants have to search for medications elsewhere in Kampala. There are few doctors, fewer nurses, and many mosquitoes.

People’s fears are sometimes based on misunderstandings, though. I heard one woman say that she was initially afraid to go to Mulago for a mastectomy because she had seen other women get the same treatment and die soon after. It is likely that those women died because they presented late for surgery and their cancer was too advanced — not that they died from the surgery itself. Because of such fears, people may seek treatment from local herbalists first. When that doesn’t work, they finally go to Mulago. By then, it is often too late.

Beyond the fear, many patients simply can’t afford the treatments at Mulago. One woman told me that after she was diagnosed with breast cancer, it took her family two years to gather the funds so she could have surgery and appropriate chemotherapy at Mulago. I heard about another woman who barely scraped enough money together for her chemotherapy treatment, only to be told after the treatment that her funds covered only one dose. She would need many more doses, the Mulago doctors said — something she hadn’t understood. She couldn’t afford it. So she just stopped going. Her cancer has now progressed too.

Like so many things here, I don’t know what the solution is. Medical care here is cheap compared to in the United States. So it’s easy to say “I’ll pay for this patient’s chemotherapy” or “I’ll pay for that patient’s surgery.” Obviously though, one person or one group can’t pay for everything and everyone. I know being here makes a difference in some people’s lives. The patients all say that. They are grateful beyond belief. But it’s hard to avoid a sense of frustrated futility sometimes.