Profile: Pearl Johnson

What was once a manageable disease has become a financial and time-consuming nightmare.

by Brian Burke

In 1989, diabetes caused both of Pearl Johnson's kidneys to fail, but luckily, she was able to get a transplant. Before the operation, doctors told her that the organ would work only for a certain period of time; that deadline passed eight years ago. Today, Johnson is well aware that she's living on borrowed time.

"This is cool," she says of the thought that comes to mind when she wakes up in the morning. "I'm awake. I'm alive."

She's lived with diabetes for 30 years now, and has managed complications such as high blood pressure, asthma and heart trouble that come with it. But now, she's learning how to manage without health insurance, too.

Johnson, 58, lost her benefits 11 months ago when she was fired from her job as a social worker after a dispute with a client. What was once a manageable disease has become a financial and time-consuming nightmare. Unable to continue seeing her former doctor, Johnson makes frequent trips from her home in West Oak Lane to Philadelphia Health Care Center No. 10 at Cottman and Bustleton avenues in the Northeast. Every 90 days, she goes for a battery of eight tests to monitor her blood and kidneys. She also must pick up medications there every month and return after her tests to obtain the results. In addition, she sees a nephrologist, or kidney specialist, every three months.

While Johnson can't complain about the cost of using the Health Care Center � it's free � she's worried about the length of time it takes to get care. She usually has to wait two hours just to see a doctor, and it takes three weeks to get her test results.

"If there's something wrong," she says, "I could be dead in three weeks."

Johnson remains frustrated with the bureaucratic runaround. She says that every time she visits, she encounters a problem, ranging from lost paperwork to patients who arrived after her being seen before she is.

Granted, she isn't the only one in need. Center No. 10 handles 56,000 patient visits annually, and treats 225 to 235 people per day, says Jeff Moran, Department of Health spokesman. The center has the equivalent of 4.5 full-time physicians for adults, two pediatricians and 13 nurses.

Trips to No. 10 cut into Johnson's work hours as a temporary intake coordinator at Pennsylvania Mentor, an organization that finds foster homes for children. (Johnson is also a member of the Philadelphia Unemployment Project, an organization of low-wage workers and the unemployed that advocates for more jobs, increased health care and other social issues.) Johnson earns $15 an hour, but estimates that she spends "in the low thousands" on health care annually.

She pays for only one of the seven medications she takes, but her nephrologist visits cost her $100, which translates into losing about a day's wages four times a year. Additionally, she must purchase special shoes, food and other items such as insulin, which she buys herself if her former doctor cannot provide it.

"Health insurance is a major need," she says. Not only is queuing up at No. 10 a nuisance, but Johnson says her blood sugar rises as she waits, endangering her health and skewing test results. She says universal health care should be a higher priority for the federal government.

"We're dropping million-dollar bombs on $10 tents over there [in the Middle East]," while some Americans lack health insurance, she says.

Johnson has managed to stay out of the hospital for some time and she hopes to keep it that way. Making the most of her borrowed time, she is looking for employment as a social worker � with health coverage � so she can get back to caring for others while having her needs taken care of, as well.