Update: The memorial service for Melanie has been changed from Saturday to Sunday. It is next Sunday, Feb. 13, 2:30, at Central Reform Congregation, 5020 Waterman.
Would it be too much to say that our broken health care system killed Melanie Shouse? No one could prove it in a court of law. But the system certainly drove her to put off seeing a doctor when she first discovered a lump on her breast, and the system too often put its profits ahead of treating her cancer. Last week, after being in treatment for four years, she died.
When she first noticed the tumor, she and Steve Hart, her business partner of eighteen years, owned Sweet Meat Stix. It was a small business that left them with few pennies to spare, so Melanie only carried catastrophic health insurance, which had a $5,000 deductible–what she called “‘hit by a bus kind of insurance'”. That constituted a huge sum for a struggling entrepreneur, so she put off seeing a doctor. Meanwhile the breast cancer grew. And metastasized. By the time she saw a doctor, she said, “‘I could have been diagnosed from across the street. It wasn’t a surprise.'”
Because she was diagnosed with terminal cancer, she was eligible to be on Medicare. But that took two years to kick in. Meantime, she became too weak to work and had to go on Medicaid. The Suburban Journal wrote an article about her last September, which included this information:
Shouse is now on her third round of chemotherapy to fight off the bone cancer and liver tumors. That treatment did not keep her from becoming bedridden for a month this spring. She was then given Avastin, a biologic therapy that costs $6,500 for a two-week supply. Since then she has been able to keep food down and “get off the couch.” Her insurance provider has since sent her a letter saying it won’t pay for Avastin.
“The insurance bureaucracy shouldn’t stand between me and my doctor and treatment,” Shouse said. “Like they know more than a world-renowned oncologist.”
The last time I saw her was at a rally outside Lacy Clay’s office in mid-November. She was wearing an eye patch because of the cancer. She joked that it made her look like a pirate, and she liked that because she preferred looking dangerous to the opposition. Here’s the video I posted of her inveighing against the obstacles to reform–in the persons of Congressional Republicans:
“These prehistoric creatures are known for acting only on short-sighted, self interested greed in the service of powerful interests which refuse to relinquish the impunity they have enjoyed over the last six decades.”
She spoke from firsthand knowledge about how deadly that impunity is.
Another health care activist, LaDonna Applebaum, recounts seeing Melanie at a planning meeting in October for a candlelight vigil. Melanie wanted to stop with the nicey-nice vigils and go more outrageous, the better to get the media to pay attention. She suggested dressing up for Halloween in death costumes to illustrate what health insurance companies are doing to people like herself. That idea was nixed by some at the meeting as being insensitive to people currently struggling with terminal illness. They had a point, but as one of the doomed, Melanie was less concerned about offending the ill than about fending off the same fate for others.
Melanie paired that feisty outlook with depth of knowledge. She wasn’t just a cancer patient at Siteman Cancer Center, for example. She was, in her way, a researcher about cancer. She attended an annual symposium on the subject, last year traveling to San Antonio with oncologists from Siteman. Her friend and fellow activist, Kathy Geldbach, says her house is filled with boxes of research–about cancer, about factory farming, about proper nutrition, about renewable energy.
Steve says that their company sells 12 inch beef kabobs made from humanely raised cattle. Melanie hated what factory farming was doing to the environment and made sure that the product she and Steve sold was top quality. He joked: “Everything she did was top quality. I’m not sure how she ended up with me.” Like Kathy, he saw how involved Melanie was in learning. He says she watched health care hearings on C-Span and told anyone who was interested that the Republicans conducted 112 filibusters in the 2009 Congressional session.
But she’s gone. She faced the inevitable by planning her memorial service with the help of Rabbi Susan Talvi of Central Reform Congregation. Melanie chose to be cremated, wearing her Obama t-shirt. The memorial service will be at Central Reform Congregation, 5020 Waterman in St. Louis, on Saturday, February 13 at 3:00; and Melanie wanted those who attend to wear their activist t-shirts.
LaDonna has done something else that Melanie would approve of. She has sent e-mails to Claire McCaskill and President Obama about Melanie’s death. In an e-mail to local activists, LaDonna wrote: “I hope anyone reading this will call their lawmakers and scream that the Health Care bill is not dead but our dear friend is. I know Melanie wants us to keep fighting as she did.”
Please make those calls.