A true story. My late sister Deb lived her life as a very responsible American. To take care of herself and her young daughter, she had a responsible job at a big company, which meant that she had about the best insurance an American can have unless you are in Congress.
One day she woke up with a terrible headache and her arm numb. She went to the ER and discovered she had a rare form of leukemia. This meant immediate treatment and vast amounts of time in the hospital.
She could no longer work, so she kept getting paid until her vacation and sick time elapsed. Then she was on her company's employee list until her American's With Disabilities time elapsed. Then she was fired.
This meant she could keep her insurance as long as she made COBRA payments, which are wildly expensive even if you have a full income. She didn't qualify for financial aid from most sources because they looked at her yearly income before she got sick. So literally she was forced to beg for money to live, pay for her insurance, pay for drugs from her family, friends, church and internet.
When I asked the financial aid people at the hospital what happens to people in this circumstance who don't have families, the lady told me that they die.
She survived chemotherapy and a stem cell transplant. But it left her with a compromised immune system, complications from the transplant, unable to work. She moved back with our parents at age 40.
And COBRA insurance only lasts for
36 months [UPDATE: Correction 18 months. Gah, blocked bad stuff from my head, I guess] When that elapsed, she was uninsurable. Uninsurable patients only qualify for what is called "high risk pools." This is also very expensive, and has less coverage than a lot of insurance. There's a great deal of paperwork involved with joining these pools, and sadly, in the rush and messed up paperwork to get my sister signed up, she was uninsured for a period of time (not her fault). And it happened to correspond to the time her leukemia relapsed.
She spent the last days of her life worrying about insurance. At the end of her life, when she knew she was dying and was in unspeakable pain, we tried to get her in-hospital hospice care to ease her suffering because she couldn't be transferred. I was told it was impossible, that her risk pool insurance wouldn't pay for it.
I spent years after her death sorting out five tons of her medical bills, and getting angrier and angrier.
I've posted a reprint of her last blog post before, where she is giving her final word advice to her friends, family, interweb friends, and she had this to say about insurance in 2009:
Support sensible health insurance reform. I'm not sure what that ends up looking like, but injuries and illnesses shouldn't fate people into a life of insurmountable debt and bill collectors. I spent the last “healthy” months of my pre-hospital stay, worried and scrambling to find insurance because my COBRA insurance ran out. Patients should be able to focus on getting better and not crushingly large mountains of papers telling them that their credit is forever screwed.
I'm not sure what sensible health insurance reform looks like or whether anyone is brilliant enough to sort it out such where people with catastrophic injuries or illnesses aren't "forever screwed."
I'm not a terribly political person. Because I'm a person voter and not a party voter, and the divisiveness of American politics wounds me. But my sister's experience left me scarred and frightened. I've tried to follow what the Patient Protection and Affordable Care Act aka "Obamacare" says (a brief descriptive here and interesting discussion), and what alternatives are to it, and it isn't terribly comforting.
I'm guessing my sister would not be very happy with these Romney quotes as excerpted that seem to minimize the concern folks have in being uninsured or underinsured. Deb postponed doctor's visits as long as she was able because she had no insurance despite being wildly desperate to have it. (She joked about marrying people for their health insurance).
I sometimes wonder if her insurance situation was better, she would have received an earlier diagnosis of her relapse in time to treat it better. She was one of the rare people who had a stem cell match. Often, the earlier the diagnosis of leukemia, the higher chances there are for survival.
Every once in a while, I re-read my sister's Twitter stream and inspirational blog (only part of it still exists due to hackers–the pictures and comments are gone). I can *hear* her talking. I looked at Deb's Twitter again after reading this interesting blog post by Amanda Palmer (@AmandaPalmer) and her idea for the #InsurancePoll hashtag. Went through her Twitter feed and pulled out some tweets that allows Deb to tell her #InsurancePoll story after her death because I know she'd participate if she were still alive. She wanted to help people. She wanted to make a difference.
Her Twitter stream starts after he leukemia diagnosis and stem cell transplant, and her panic when she knows she needs to see doctors but doesn't have insurance.
Though you get a sense of Deb's anger and sadness, I'm not a good enough writer to convey her abject horror and fear at realizing that she might be relapsing without insurance.
Deb’s end-of-life struggle with health care insurance
Deborah Greer-Costello spent the days of her life worried about health insurance. She had leukemia, beat it with a stem cell transplant, but always worried about relapse. During the last months of her life, she lost her insurance after her COBRA insurance ran out.
Storified by Stephanie Stradley · Tue, Oct 16 2012 11:47:08
I try to honor her memory by supporting blood drives and encouraging others to join the bone marrow registry. And sharing her story because she wanted it shared.