With the deadline upon us for states to decide whether to set up their own health insurance exchanges under the Affordable Care Act, I find myself thinking about Sofia.
Sofia first noticed the mass on her arm when it was the size of a walnut. Over the next four months, it didn’t disappear, as she had expected; instead, it grew, pushing up at her skin until it was the size of a large grapefruit. But still she ignored it.
Sofia, whose name I have changed to protect her privacy, is uninsured, like 49 million of her fellow Americans, and she couldn’t see the point of paying hundreds of dollars to see a doctor for a pesky bump. It didn’t hurt, it didn’t bleed and, when she wore long-sleeved shirts, you couldn’t even see it. It was only when she could no longer climb two flights of stairs without losing her breath that she began to worry about what this could really be.
She arrived at San Francisco General Hospital’s emergency room expecting to wait a few hours for someone to tell her the lump was nothing and send her home. Instead, she got devastating news: a chest X-ray revealed too many masses in her lungs to count, and a CT scan of her arm showed a mass eating through her muscle. It was not a question of whether Sofia had cancer but which type and how it should be treated.
Other than some mild difficulty breathing, Sofia felt fine. But the emergency room physicians worried how this woman who had no primary care doctor and no insurance would get an appointment with a cancer specialist. I was the physician on duty that day, and they called me to admit Sofia to the hospital so we could figure out how to get her care. If she’d had insurance, she would have been able to go home with outpatient follow-up.
When I told Sofia her diagnosis, she looked down. She told me how she had been forced to choose between buying health insurance and paying for food and housing for herself and her three children. She was a healthy 40-year-old with no medical problems, and was hoping to get insurance through a permanent job in the future. Cancer had not been a part of her calculation.
She then told me that it was her daughter’s 16th birthday, and the entire family was waiting for her to cut the cake. She couldn’t break this sort of news over the phone, she said. She wanted to go home for the party, but she promised to get back to the hospital in two hours. I hesitated, unsure how she was handling her new diagnosis and wondering if she would ever return, but I couldn’t turn down the request.
Sofia kept her promise and returned later that night. She had a biopsy the next morning, which revealed a rare and aggressive type of cancer. Her case was more complicated, however, and not because of the cancer. As I tried to arrange Sofia’s follow-up to discuss surgery and chemotherapy, I discovered that although her house was 10 minutes from the hospital, she technically lived just outside San Francisco County. This made her ineligible for any treatment in our county hospital system. She would have to go to her own county hospital and start the process over.
There is no class in medical school that covers telling someone she has metastatic cancer and, in the same breath, telling her there’s nothing you can do — because she doesn’t have insurance. I struggled to find Sofia a follow-up appointment, but waiting times in public clinics approach months for new patients, and I knew her cancer was spreading rapidly. Two days and multiple phone messages later, I found an oncologist in her county hospital who promised to squeeze Sofia into her clinic. I sent her home with a packet of records and biopsy results, and told her to come back to the emergency department if she did not hear from the clinic. Fingers crossed. I haven’t heard from her since.
President George W. Bush once noted that people have access to healthcare in America. “After all,” he said, “you just go to an emergency room.” But even Bush didn’t see that as a sensible approach to healthcare. For patients like Sofia, emergency rooms are often the only option for healthcare, but they are a very poor substitute for basic medical care.
People need insurance because physicians (and patients) are poor fortune tellers. We can’t tell who will get sick. And for diseases like metastatic cancer, emergency care is woefully inadequate. I have hope that President Obama’s healthcare law will give patients like Sofia a chance.
On Friday, states must announce whether they will set up their own health insurance exchanges or rely on the federal government to do so. Some states, like California, have already made great progress. Others have dragged their heels. Additionally, some states have already announced that they will opt out of the Affordable Care Act’s Medicaid expansion, something a Supreme Court decision earlier this year allowed them to do.
I’m not a fortune teller, but I can predict that tragedies like Sofia’s are inevitable without universal insurance coverage. States that resist doing everything in their power to facilitate that goal should expect people like Sofia to keep turning up in their emergency rooms.
Palav Babaria is an internal medicine physician at San Francisco General Hospital and UC San Francisco.
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