Guaranteed Healthcare

Juanita Anderson, a retiree living in Los Angeles, never imagined that in her later years she would suffer from an incurable disease, nor that she'd be so afraid of losing her healthcare benefits. Even with retiree healthcare, she spends almost all her financial resources on managing her disease. Yet she knows life would be even worse if she lost her retiree health -- a very real possibility for millions of Americans as companies cut costs by reneging on promises to former employees. Check out Anderson's story as published in the April 2008 issue of Registered Nurse magazine.

Shock to the System

Retiree Juanita Anderson doesn't just fear the rare disease that attacks her organs and sends her to the ER, she also fears the insurance companies who can change her coverage at any time and destroy her finances.

By Lucia Hwang

This is not how Juanita Anderson imagined retirement.

The 62-year-old Los Angeles resident stopped working last year after decades of service with Southern California Edison, the power company. But Anderson didn’t really have a choice. She’s been so ill that she hasn’t really been able to work for almost eight years.

Anderson’s world turned upside down when she learned in 2000 that she suffered from systemic mastocytosis, a rare and incurable disease of the body’s mast cells. As she describes it, “my body has become allergic to everything, even my own body,” and she can suddenly be hit by overwhelming attacks of histamine on her body that restrict her breathing, jack up her blood pressure, and send her to the nearest emergency room.

But it’s not just the attacks that make Anderson feel vulnerable. She, like millions of other retirees and people with disabilities who can’t work because of their illnesses, lives on a fixed income and has watched health insurance premiums, copays, deductibles, and prescription drug costs eat up a bigger and bigger portion of her household budget each month – so much so that she had little money left for anything else.

As a result, Anderson’s stuck at home a lot and her world has narrowed, seeming to revolve only around keeping her disease at bay: doctor appointments, emergency room copays, bills in the mail, picking up and paying for drugs at the pharmacy. “My medical bills take a big chunk out of my retirement,” said Anderson recently from the living room of her West Los Angeles apartment, which she suspects of harboring irritating mold. “It’s a financial stress. I want to get out of here, but financially it’s hard.”

Anderson first got the inkling that something was wrong when, at the beach one day in 1992, she scratched what she thought was a freckle on her leg and the freckle swelled up. “Oh no, I’ve got skin cancer,” thought Anderson. A trip to the doctor and a few tests later, they learned she had urticaria pigmentosis, a form of dermal mastocytosis. For years the symptoms were limited mostly to itchy skin. But on New Year’s Eve in 1999, Anderson was standing in line at the supermarket when suddenly she felt like she was dying. She felt a terrible squeezing of her chest. She fought to breathe. She couldn’t talk. She felt incredibly hot, as if burning up from a fever. She ran out of the store and was eventually rushed to the hospital. Finally, after a bone marrow biopsy, Anderson learned she had full-blown systemic mastocytosis, which assaults her organs.

From then on, her daily challenge was to avoid triggering one of her “attacks,” as she calls them. At one point, she was taking 35 different medications; now she’s down to 13. She constantly drinks children’s Benadryl to keep her histamine levels low. She’s found that because her body is so sensitive, brand name drugs (which are more expensive) work best for her, and she must be careful about what kinds of foods she eats, selecting mostly organic, but costlier, vegetables and meats. As a result of the steroids she sometimes takes to lower her body’s inflammation, she said she’s developed medication-induced diabetes.

All these expenses add up. Anderson said that she used to enjoy life more, often going out to the movies and theater, or to different music shows and concerts. These days, she holds her breath until the end of the month, hoping there’s some money left over for anything beyond the bare necessities. She survives on about $1,500 a month – a mix of Social Security, pension, and family help. Usually for the first three months of the year, she goes into deficit, putting her medical tab on credit cards until her prescription drug coverage starts.

Though Anderson is one of the lucky Americans who receives retiree healthcare, a fast-vanishing benefit, she still lives in constant fear that the premiums and plan can change at any time, or be eliminated altogether. “You’re at the mercy of the company,” said Anderson. “There’s no guarantee.”

It’s already happened to her. Last year, Anderson received a letter from Southern California Edison saying that her retiree health insurance premiums through Blue Cross were going to be about $89. Then she received a second letter saying that as of Jan. 1, 2008, that amount would be almost double. She decided to switch over to Health Net, which is about $30 to $40 cheaper, to save every penny she could, but is unsure if the coverage will be as comprehensive. She also noted that she used to have a choice among 10 different plans, but the options have now been slashed to five. Since the beginning of the year, Anderson has needed to be admitted to the hospital four times, and she estimates that she pays thousands of dollars out of her own pocket just to meet the drug deductible before coverage kicks in.

To keep going, Anderson focuses on the things she’s grateful for: her son, her three grandchildren, and the community of systemic mastocytosis patients both nationally and in Los Angeles that she’s helped develop. She wishes, however, that the United States could implement a single-payer national healthcare program so that the costs of living with her disease weren’t such a burden.

“Lots of people who have this disease have no insurance,” said Anderson. “They’re prone to die. It’s still a financial stress, but I’m blessed.”