FARAI CHIDEYA, host:
From NPR News, this is NEWS & NOTES. I'm Farai Chideya.
It's Breast Cancer Awareness Month, and many of us have lost friends or family to the disease or know other loved ones who've been treated and are healthy. But not only do women with breast cancer have to fight for their lives. Many also have to fight to maintain their finances.
That's why Edith Speed, who had a radical double mastectomy three years ago, helped found Bowling for Boobies. The name of this annual fundraiser at a Los Angeles-area bowling alley might make you blush. But for breast cancer patients struggling to pay medical bills, it's a lifesaver.
I sat down with Edith in our NPR West studios. She told me she had already lost her youngest sister and her godmother to breast cancer. So she didn't waste time when doctors found her first lump.
Ms. EDITH SPEED (Founder, Bowling For Boobies): We immediately went into doing ultrasound and doing a needle biopsy. And all those things were really, really scary to me because I had never ever even been in a hospital, I never had my tonsils out, never broken any bones. So, for me, all this medical world is like being on the Sci-Fi Channel or something. It was really scary. And I thought I was going to die, because of my previous experience with my relatives.
CHIDEYA: Did you have any problems? You know, getting the care that you needed?
Ms. SPEED: I was pretty frustrated with it. I pay for my own - I'm self-employed, so I pay for my own health insurance. And so I have a PPO, and it was kind of sold to me under the idea that you can pick your own doctors and you can go anywhere, you don't need to have the referral and all that from your primary.
So I went to where I was diagnosed. And I went to the doctor that they sent me to. And, you know, I don't like to say this about a person, but this guy was really kind of pompous and he had that I'm better than you attitude, and he was telling me what I needed to do. And I just thought his attitude was so bad. And I know how much I'm paying for my co-pay and I know how much I'm being billed, and I just fired him.
And I told him, I'm the customer here, and the customer is always right. And he was like, you're not my customer, you're my patient. And I'm like, not anymore. So then I went and did a lot of research. I went on the Internet. The best hospitals, the best doctors, and I ended up at Cedars-Sinai under the care of Kristi Pado, who is the director of the Breast Center over there.
And she was awesome. I interviewed probably in person five surgeons. Kristi sat down next to me, next to me as opposed to across the desk, and answered all my questions, drew little diagrams. I mean I felt like I was talking to a woman and someone who understood and identified with what I was going through. And I felt really confident being under her care.
CHIDEYA: So with all that going on, were your finances depleted?
Ms. SPEED: They were certainly beginning to. And what happened with my insurance is that I - because I never was sick - I had a pretty high deductible. The first year it was a $5,000 deductible. But there's some weird little loophole in there that made it actually $7,500. That being the case, yeah, I was like spending money really fast. And that's when, you know, I was kind of freaking out and telling my friends about it. And that's when I decided to start doing fundraising efforts.
CHIDEYA: Does it kind of make you crazy or angry or sad that you have to raise money for medical care? You know, you had to do it for yourself, and now you're doing it for other people?
Ms. SPEED: It makes me extremely angry. Because right now my insurance is up to about 300 a month - or it's more than 300 a month, it's getting close to four. I can't go anywhere. Like no one else is going to underwrite me, because I've had breast cancer. And…
CHIDEYA: Pre-existing condition.
Ms. SPEED: Exactly. And I talked to Blue Cross Blue Shield, because I've seen the commercials where they say: If you're self-employed, there are options that are affordable. So I call them up and called them on that. And they're telling me that if I want to reduce my monthly, I can raise my deductible. That doesn't really help me at all, because then I'm looking at more than 7,500-dollar deductible?
CHIDEYA: You were very strong about choosing your own care, but you also had resources. Maybe not endless financial resources, buy, like you said, a network of friends, a husband, who are all willing to just go the distance for you. What are you trying to do with your charitable efforts for women who might not have as big of a social network?
Ms. SPEED: At this point, with Bowling For Boobies - this, like I said, was our third year, and I'm really, really proud to say that we've raised - every year we've raised probably almost $10,000 more than the previous year. And promoting that and the sort of like cuteness factor of the name and everything, it's really fun. People get all into the theme. They make up cool bowling team names and they dress to go with the theme. And we have prizes for the breast-dressed team and the breast team name and all that fun stuff.
CHIDEYA: If you had to distill the wisdom that you've gotten from being a breast cancer survivor into, say, a sentence or two, what would it be?
Ms. SPEED: Well, that's a tough one. After surviving and after feeling relatively intact, I feel that every day of my life is a gift. And I wake up and I appreciate it. And I'm not overly religious, but I'm spiritual and I feel much more spiritually aware. And all humans are connected, and we can help each other and that's what I really want to do.
CHIDEYA: Edith, thanks a lot.
Ms. SPEED: Thank you, Farai.
CHIDEYA: Edith Speed is one of the founders of Bowling for Boobies and a breast cancer survivor. She beat her cancer with the help of friends and family.