One More Reason Why We Need Health Care Reform

edithspeed.thumbnail.jpgIn 2003 right before her wedding to one of Los Angeles’ up and coming chefs, my friend Edith Speed was diagnosed with intraductal and infiltrating duct carcinoma, a type of breast cancer. Within weeks she had a lumpectomy, and then, even before she could adjust

[t]he bills began to arrive, from 10 different entities, my surgeon, her assistant (whom I’d never even met, and who I learned was not a preferred provider for my health plan), the anesthesiologist, the hospital, radiology, the lab, you name it, they’re billing me. I learned more than I ever wanted to know about the adversarial relationship between hospitals and the insurance company, I learned that there are many necessary procedures that the insurance company won’t pay for, leaving the patient holding the bag after the fact, I learned that my deductible which on paper is $2,500.00 per year, is actually a $5,000.00 per year maximum out of pocket expense. My 2 hour procedure cost $35,000.00.

I was glad I had kept my insurance, which I’d had for over 10 years. I’d never had occasion to use it and had been thinking it was a huge waste of money, only a month before, I’d considered dropping it.

Edith put one of the two cars up for sale, cashed in the U.S. Treasury bonds left to her by her aunt, and began to dip into the savings account she’d started towards a down payment on a home with her beloved.

Then on November 19, 2003, a breast MRI caught a some suspicious looking areas in Edith’s left breast and one just beneath the surface of her right nipple.

We decided the radical bilateral mastectomy would be the best plan to avoid future recurrence…I’ve prided myself on having a sparkling credit rating, on being a responsible person who pays her own way in the world. The tests I needed added more to my already daunting pile of debt, and now I would be adding to that another surgery. As a self employed individual, I pay my own health insurance premiums 100%, I have no paid sick leave or even vacation days. I felt as though I were running trying to catch up to where I’d left off in May, and falling farther and further behind…

Then my insurance company sent me a letter to say not only would my premiums go up each month, but my maximum out of pocket deductible would be going from $5,000.00 to $7,500.00 in 2004. I felt my dreams of ever owning a home were gone, and I felt paralyzed by the fear of bankruptcy, and the confrontation with my own mortality.

Edith, a stunning tattooed brunette entrepreneur, rallied her friends, including the Go-Go’s Jane Weidlin and threw herself a benefit called Bowling for Boobies which helped offset the costs not covered by insurance. In 2005 and each year since, she staged another Bowling for Boobies for women in a similar situation. Out of that came the Busted Foundation ("You get the bump, you get the bills, you’re busted" is their sassy slogan) and more Bowling for Boobies annual events in other states.

I saw Edith on Mother’s Day this year when my best friend and I went to the restaurant where husband was executive chef. Edith knew we were coming and showed up to be the always perfect hostess, glorious in a vintage black cocktail dress. I hadn’t seen her in a few years, though I had donated to B4B and stayed caught up with her via the internet.

She told us her cancer was back, but she was going to do the herbal program that had worked before to shrink her last tumor before it was removed and then have surgery, which would involve a whole new double masectomy and more reconstructive surgery. And lots more expenses.

On June 5th I unexpectedly and happily ran into Edith at a rally to protest Gov Schwarzenegger’s cuts to HIV/AIDS funding. We chatted about an upcoming party I was having which she planned to attend, her herbal program and how much she missed steak, desserts and wine–but it was "only for three months." She was warm, witty and charming, the essence of Edith.

In late April 2009, before she went in for the needle biopsy that would tell her the cancer had returned, Edith had written about her earlier experiences in the financial wilderness:

I have a great deal of fear and shame around not being able to pay my own way in the world. I’ve always had immense pride about my credit rating, always paid bills as soon as they landed in my mailbox. I never wanted to depend on anyone else to help me make ends meet, more the opposite, I was proud to be able to give a hand up to someone else who might need it.

Of all the things I had to confront in facing my cancer (my mortality, the disfiguring surgery) the hardest by far was facing the fact that I would have to reach out for help financially. I had to admit to myself and then to the world that I was not capable of taking care of my own medical responsibilities. This is still very challenging for me to admit, it has taken me about an hour, four espressos, and a couple of procrastination breaks to write this down…

Until the medical bills were more than I could pay with what my husband and I had in our checking accounts, more than what we had left over after household bills, until we had to look at each other and decide to use our savings, until even that was not enough. I hadn’t thought death would be an easier choice until I saw how incredibly quickly all of our money was spent. Death looked like a real option when I had to pay for groceries on a credit card because there was no money left in our checking account. I felt like a burden on my husband and friends and I felt ashamed and like I was somehow not good enough because I didn’t have the money to pay for my medical treatment. I felt like I was foolish for choosing medical care beyond my means, as if truly excellent care is a privilege that I did not deserve.

Six years later, I am glad to have made the choices in care that I did, happy to be well and so immeasurably grateful to have had the support network that I do. Still, six years later, my husband and I have not recovered from the financial hit. Our savings remains depleted and I have come to terms with the fact that we may never own a house.

Time has passed, my life has gone on and while I am happier than ever, a dark cloud looms in the distance of my consciousness.

On June 7th that dark cloud became overwhelming and Edith killed herself.

One More Reason Why We Need Health Care Reform

edithspeed.thumbnail.jpgIn 2003 right before her wedding to one of Los Angeles’ up and coming chefs, my friend Edith Speed was diagnosed with intraductal and infiltrating duct carcinoma, a type of breast cancer. Within weeks she had a lumpectomy, and then, even before she could adjust

[t]he bills began to arrive, from 10 different entities, my surgeon, her assistant (whom I’d never even met, and who I learned was not a preferred provider for my health plan), the anesthesiologist, the hospital, radiology, the lab, you name it, they’re billing me. I learned more than I ever wanted to know about the adversarial relationship between hospitals and the insurance company, I learned that there are many necessary procedures that the insurance company won’t pay for, leaving the patient holding the bag after the fact, I learned that my deductible which on paper is $2,500.00 per year, is actually a $5,000.00 per year maximum out of pocket expense. My 2 hour procedure cost $35,000.00.

I was glad I had kept my insurance, which I’d had for over 10 years. I’d never had occasion to use it and had been thinking it was a huge waste of money, only a month before, I’d considered dropping it.

Edith put one of the two cars up for sale, cashed in the U.S. Treasury bonds left to her by her aunt, and began to dip into the savings account she’d started towards a down payment on a home with her beloved.

Then on November 19, 2003, a breast MRI caught a some suspicious looking areas in Edith’s left breast and one just beneath the surface of her right nipple.

We decided the radical bilateral mastectomy would be the best plan to avoid future recurrence…I’ve prided myself on having a sparkling credit rating, on being a responsible person who pays her own way in the world. The tests I needed added more to my already daunting pile of debt, and now I would be adding to that another surgery. As a self employed individual, I pay my own health insurance premiums 100%, I have no paid sick leave or even vacation days. I felt as though I were running trying to catch up to where I’d left off in May, and falling farther and further behind…

Then my insurance company sent me a letter to say not only would my premiums go up each month, but my maximum out of pocket deductible would be going from $5,000.00 to $7,500.00 in 2004. I felt my dreams of ever owning a home were gone, and I felt paralyzed by the fear of bankruptcy, and the confrontation with my own mortality. 

Edith, a stunning tattooed brunette entrepreneur, rallied her friends, including the Go-Go’s Jane Weidlin and became the first benefciary of a benefit called Bowling for Boobies which helped offset the costs not covered by insurance. In 2005 and each year since,  Bowling for Boobies staged a fundraiser for women in a similar situation. Out of that came the Busted Foundation ("You get the bump, you get the bills, you’re busted" is their sassy slogan) and more Bowling for Boobies annual events in other states.

I saw Edith on Mother’s Day this year when my best friend and I went to the restaurant where husband was executive chef. Edith knew we were coming and showed up to be the always perfect hostess, glorious in a vintage black cocktail dress. I hadn’t seen her in a few years, though I had donated to B4B and stayed caught up with her via the internet.

She told us her  cancer was back, but she was going to do the herbal program that had worked before to shrink her last tumor before it was removed and then have surgery, which would involve a whole new double mastectomy and more reconstructive surgery. And lots more expenses.

On June 5th I unexpectedly and happily ran into Edith at a rally to protest Gov Schwarzenegger’s cuts to HIV/AIDS funding. We chatted about an upcoming party I was having which she planned to attend, her herbal program and how much she missed steak, desserts and wine–but it was "only for three months." She was warm, witty and charming, the essence of Edith.

In late April 2009, before she went in for the needle biopsy that would tell her the cancer had returned, Edith had written about her earlier experiences in the financial wilderness:

I have a great deal of fear and shame around not being able to pay my own way in the world. I’ve always had immense pride about my credit rating, always paid bills as soon as they landed in my mailbox. I never wanted to depend on anyone else to help me make ends meet, more the opposite, I was proud to be able to give a hand up to someone else who might need it.

 Of all the things I had to confront in facing my cancer (my mortality, the disfiguring surgery) the hardest by far was facing the fact that I would have to reach out for help financially. I had to admit to myself and then to the world that I was not capable of taking care of my own medical responsibilities. This is still very challenging for me to admit, it has taken me about an hour, four espressos, and a couple of procrastination breaks to write this down…

Until the medical bills were more than I could pay with what my husband and I had in our checking accounts, more than what we had left over after household bills, until we had to look at each other and decide to use our savings, until even that was not enough. I hadn’t thought death would be an easier choice until I saw how incredibly quickly all of our money was spent. Death looked like a real option when I had to pay for groceries on a credit card because there was no money left in our checking account. I felt like a burden on my husband and friends and I felt ashamed and like I was somehow not good enough because I didn’t have the money to pay for my medical treatment. I felt like I was foolish for choosing medical care beyond my means, as if truly excellent care is a privilege that I did not deserve.

Six years later, I am glad to have made the choices in care that I did, happy to be well and so immeasurably grateful to have had the support network that I do. Still, six years later, my husband and I have not recovered from the financial hit. Our savings remains depleted and I have come to terms with the fact that we may never own a house.

Time has passed, my life has gone on and while I am happier than ever, a dark cloud looms in the distance of my consciousness. 

On June 7th that dark cloud became overwhelming and Edith killed herself. 

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