SCV NEWSMAKERS OF THE WEEK:
Colleen Shaffer
and Jordana Capra

Circle of Hope

Interview by Leon Worden
Signal Senior Editor

Sunday, September 10, 2006
(Television interview conducted August 28, 2006)

    "Newsmaker of the Week" is presented by the SCV Press Club and Comcast, and hosted by Signal Senior Editor Leon Worden. The program premieres every Wednesday at 9:30 p.m. on SCVTV Channel 20, repeating Sundays at 8:30 a.m.
    This week's newsmakers are Executive Director Colleen Shaffer and Media Director Jordana Capra of Circle of Hope. Questions are paraphrased and answers may be abbreviated for length.

Signal: What's with the hat?

Capra: We are having our third-annual theatrical afternoon tea (on) Sept. 30 and Oct. 1. It's very British, and very mah-velous, although you don't have to speak British to come. We speak American.


Colleen Shaffer
Colleen Shaffer
Shaffer: It is a very fun program. Not only are you given a three-course tea, from scones and sandwiches to desserts; you're entertained. The minute you walk in, we have magicians, we have singers, comedians, we even have a harpist. A little bit of everything, plus you get to enjoy the garden.
    It is a fundraiser, and this is why we're here. Circle of Hope is a 501(c)(3) nonprofit that helps uninsured and underinsured individuals who live, work or receive treatment in Santa Clarita — anyone who has breast cancer, men or women.
    What people don't realize is, this community is very much underinsured. We make co-payments, we pay COBRA, we make medical payments — anything that's needed that deals with the cancer. This is how we help out.

Signal: What is Circle of Hope?

Shaffer: Circle of Hope started off — I'm known as the Angel of Hope. I dress up in a pink wig, a long satin gown with lots of sequins, and I started that to show that breast cancer is not a death sentence; it's a chronic disease.
    The reason is, three years ago, my cancer came back. It's metastatic, which means that it has traveled all over. It's in my liver and in my spine, and I was told that I had six months to a year to live; treatment didn't work. I'm on chemo for the rest of my life, which also means that I know what medical bills are.

Capra: How long ago were you diagnosed?

Shaffer: I was diagnosed first in 1999, so I've been dealing with this for seven years.

Signal: What about you?

Capra: I, knock on wood, have not battled breast cancer, but I beat cervical cancer 10 years ago.
    My part in this crazy production — Colleen and I met in 99, doing a three-day walk for breast cancer, and we have been fast friends ever since. I now serve on her board of directors; I'm the vice-president of Circle of Hope and I'm the media director, which means I get to accompany her to interviews like this.
    For the tea, we put on quite a show.

Shaffer: Yes, we do.

Capra: One of the magicians who will be there has performed at the Magic Castle. We have musicians who cover everything from harpists and cellos to country to rock to Celtic music. We have stand-up comics and jugglers. The entertainment — I just go through my Rolodex and twist the arms of all my actor and musician friends, and they show up.

Signal: What's the phone number for more information?

Capra: 661-254-5218. You can also go on our Web site, www.circleofhopeinc.org, and that will also tell you.

Signal: Colleen, when did you start Circle of Hope?

Shaffer: It has been almost three years now.

Signal: Where did you get the idea you could help other people?

Shaffer: It started off with a boob hat.

Signal: A boob hat?

Shaffer: As I said, I met Jordana doing the Avon Walk. I had no hair. I looked like Uncle Fester's niece. I lost both my breasts. I had a double mastectomy. I lost my hair, my eyebrows; you couldn't tell what sex I was. So I decided to use humor. So I had my boobs up here (indicating the top of her head) — fake boobs with a sign saying, "Malibu or Bust," because we walked from Santa Barbara to Malibu.
    I wanted people to know. "Have you had a mammogram?" I found people were afraid. I got very active in the American Cancer Society; I was on their council for five years. ... Reach for Recovery is a very good program, but the problem is, there was no financial help. The American Cancer Society is great in giving information, even providing rides, wigs, whatever, but there is no financial assistance. And I'm sorry. If you ever had a medical problem and you're trying to deal with insurance, or trying to figure out where the funds are, you're not going to be concentrating on healing.
    I literally was getting more frustrated, trying to help. I ran into someone in Orange County — it's called Breast Cancer Angels. We (modeled) our program after theirs. And we started. I started selling Circle of Hope pins, which I designed. That's how we started (raising) funds. From that, I roped in Jordana. We did the tea three years ago, as our very first fundraiser. And we're getting known.
    We have eight clients right now whom we're assisting. We've just finished helping a single dad of a 3 1/2-year-old who had no medical insurance and needed chemo. And for those who don't know what medical costs are, you're going to spend, with breast cancer, $150,000 to $250,000. Someone's going to have to pay that bill. Chemo alone can cost you anywhere from $3,000 to $7,000. And you're not talking about the other drugs they give, or the doctor appointments or anything else.
    It's expensive to be a survivor, and it's because of that that we help (with) all the medical aspects — co-payments, COBRA, prescriptions not covered.

Signal: Is the problem that most people's company insurance policies don't cover it? Or are we talking about mostly unemployed or low-wage workers?


Jordana Capra
Jordana Capra
Capra: Uninsured definitely is a concern. People are simply completely uninsured. But even a relatively good insurance plan has a ceiling. They have a cap, they have a limit as to what they will pay out each year. The costs of chemo can shoot right through that ceiling very, very quickly — not to mention that some insurance plans do not pay for a second opinion unless you wait, for example, 90 days from your first opinion.
    In the case of breast cancer, 90 days can be the difference between a successful outcome and not.

Shaffer: It also depends on insurance. HMOs, PPOs — big difference how they treat it.
    We started this year a second opinion program because a lot of companies — HMOs — they delay. You can get a second opinion, but you delay or you can't get outside your network. You need to have a place that has a different philosophy. We're very blessed in Southern California to have UCLA, USC, City of Hope. These are technical, top-of-the-line institutes that allow us to get top-of-the-knowledge of what's going on.
    You need to have a second opinion for a lot of reasons. First of all, if the cancer is more advanced, you need to know what options you have. You wouldn't buy the first car you see; why would you choose the first doctor you see? They are human beings (with) different personalities, different beliefs. Some believe in integrated medicine; some won't even allow you to take a vitamin. It all depends on your philosophy and how you want to approach it.
    Now, add the factor that Newsweek just came out an article in November stating that in the last five years for a family of four, medical insurance has risen 25 percent. You have your co-payments; they are constantly going up. You have medicines that are constantly going up. Those new medicines that are saving my life are expensive! My chemo alone, my co-payment is $150. But if I had to pay for it retail, it's $3,500 every three weeks. Who has that type of money?
    You get a lot of people who are retired. They're on a fixed income, and unfortunately, breast cancer is one of those cancers as the older we get — one out of seven women will get breast cancer in the United States, and by the time you're 50, you have a 50 percent chance of getting that disease.
    Now you have men getting the disease. Fifteen hundred men just in California will get the disease (this year). It's rising because of obesity, because fat stores estrogen, and a lot of times, breast cancer is estrogen-positive.
    You also have a lot of people who are self-employed, sole proprietors, which means that they may have high deductibles. All of a sudden, you get diagnosed with breast cancer (and) you've got to start chemo. Well. You've got to make your $10,000 deductible or your $6,000 deductible; otherwise you're paying a percentage.

Signal: How does Circle of Hope help bridge this gap? You're talking about a phenomenal amount of money.

Shaffer: We are not total assistance. We are there to help. This is why, if you've lost your job and you qualify, we will pay for the COBRA. If you need someone to make your co-payment — we just got a phone call in June from UCLA, from one of the nurses. She had a client who just lost her job. She couldn't pay the co-payments. If she couldn't make the co-payments — it was only $25 — she would die, because she needed to have the chemo to fight the disease.
    People don't realize, survivorship is expensive. Medicines. We also have complications. Lymphoedema — anytime you have lymph nodes taken out, for the rest of your life your arm can swell, depending on circumstances. That needs immediate treatment. Bandages, physical therapy, that's all part of cancer.
    You start off with having either a lumpectomy or a mastectomy. Then you have chemo, radiation or both. Then you're on high-risk medication for five, and now it's going 10 years.
    Technology is great. It's keeping me alive. But at the same time, we're also finding out, by doing different types of medicines, by doing different types of programs, protocols, we have a longer survivorship. That's great, but it takes money to do that. Thirty-five years ago, the only way they could treat breast cancer was to do a radical mastectomy. And what I mean by that is, they take the breast along with pectoral muscle. There wasn't any chemo, and cobalt radiation was just starting.
    We have come a long way, but we still need to (focus), and right now, if you're concentrating on survivorship — if you're going through chemo — you've heard of the chemo brain? There are days that you can't even focus. How are you supposed to call and find out why this wasn't paid? Where's the money coming from? A lot of people have to go on disability. Everyone knows that disability doesn't pay full price of what your salary was.

Capra: So, what do we do to help all of this? A big part of it is, we micro-manage. We look at what your needs are, what your insurance isn't covering, what your job isn't covering, what your income can't cover, and we will give you that second opinion, or we will cover a percentage of your chemo or we'll cover your co-payments. We look at specific needs.

Signal: Do you work with doctors to provide services, such as a free second opinion?

Capra: There are doctors' offices in the Santa Clarita Valley who will work with us in terms of a reduced cost to the clients.

Signal: And are there philanthropically minded business leaders in town who provide money to help bridge some of these funding gaps?

Shaffer: You want to know something? In the three years that we've gotten all of our donations, the highest amount we've ever gotten is a $1,000. So that tells you that we have done a lot of scurrying around, asking, begging, to get our money to help these individuals.
    We do have a good relationship, I'm thankful, with UCLA. They work with us. We also have to deal with HIPAA (Health Insurance Portability and Accountability Act). We have to provide privacy acts for our clients; we have them do authorization releases so we can talk to the medical facilities. Everything is confidential. There's nothing that goes out to anyone else. It's for the patient's safety, and it's also for their own self-interest. The bottom line is, it's a team effort, and the more the community knows that we're out there, the more they're likely to help.
    As I said, someone in your life is going to be touched by breast cancer, sooner or later. If you figure one in seven in your lifetime is going to get breast cancer, that means that your mother, your lover, your sister, your wife, even your husband can get breast cancer.

Signal: Does it run in the family?

Shaffer: Ninety-eight percent of the time, it does not. And that's a scary thing. I had no family history. I was a personal trainer. I was in good health. I was younger. I was 48. Normally it's 50 or older.
    The younger it is, it tends to be more aggressive, and we're finding more and more about that. As technology improves, we're able to find the cancer quicker, and that's why we insist on doing mammograms and make sure that you follow a routine.
    There are ways to help the community. I'm involved with Zonta; Zonta has Healthy Women's Day for free mammograms. I can get information from the American Cancer Society. It's a team effort. I'm a firm believer — we're a small, grassroots nonprofit — that as a nonprofit in this community, I have to help other nonprofits. I'm one of those old-fashioned (people who), scratch my back, I'll scratch yours. We have to help each other. I'm not like, "Oh, you're taking money from (my charitable organization)." That's not the point. The point is that we can work together in one form or another and help everyone. This is my home. Santa Clarita has been my home since 1968. That's why I wanted to start this nonprofit, because I wanted to give something back.
    I'm alive for a reason, and my reason for survival is to help anyone to go through chemo or radiation, because I had to do it myself. My husband lived overseas. He was stuck. He had to change jobs after 26 years. I was stuck here by myself. That's how I met Jordana, and she became a very close friend. I never knew her, and thank goodness I (know her) now. But the main thing is, I know what it's like to be alone. I know what it's like to have the financial — my son was born on welfare — I know what it's like not to have the money, not to pay the bills. I see my bills going up. I pay $50 every time I go see a doctor, and I've been seeing a doctor two to three times a week.
    Even middle class, that hits hard. And that's what this community doesn't realize — that as soon as you think you're covered, you (aren't), and with the rising cost of insurance — new medications. Some of the newest drugs coming out that can save our lives cost $4,000 for one injection. And you need six to eight. You can't pocket this stuff. Other cancers are just as expensive, except that I know about breast cancer. I'm living it. I've also been a hospice caregiver. My father-in-law died of lung cancer. I understand both sides of the situation. I know what it's like.
    I just had someone call me because her sister-in-law had breast cancer, and it's going hospice. She asked me questions; I gave suggestions. We have a program that we just started, it's called Compassionate Angel Program (CAP), where we help those who are going through chemo, who have low immune systems, and (we are) providing a goodie bag for them to make their life a little bit easier. Maybe balloons (to signify) that they finished one session of chemo, maybe a cap because they're bald-headed. Anything that makes their life a little bit easier.

Signal: Jordana, what compelled you to get into this? You didn't have breast cancer; you said you met Colleen walking in Malibu with her boob hat and you said to yourself, "I want one, too?"

Capra: Well, who doesn't want a boob hat?
    My mother's mother died from breast cancer. My mother died from pancreatic cancer. My mother's sister died from lung cancer.

Signal: So you're the 0.2 percent of the population where it runs in the family?

Capra: Well, but that's just it. They're completely different, unrelated cancers. Four different cancers, four different women in my life. (One type of cancer) does not open you up to susceptibility to another. No. Smoking — that stuff will kill you.
    It was the amount of cancer that was in my family that made me, first of all, do the three-day walk, and then when I met Colleen, she's a force to be reckoned with. You don't say "no" to Colleen easily.

Shaffer: I have a passion, and my passion is to make sure that anyone out there who has breast cancer will never have to go through the things that I go through. If that means I help financially or help emotionally, then I'm still on this Earth for a reason. And Jordana makes it easier.

Capra: I also live in Santa Clarita, and I like the idea of giving back to the community — of keeping the funds that we raise, in the community. Now, we'll raise funds anywhere, anytime, any way we can. But all of the funds that we raise do go to assist people who, as she said, live or work or receive their treatment here in Santa Clarita, and I think that's important.

Signal: Has the Sheila R. Veloz Breast Imaging Center made a difference?

Capra: Oh, a huge difference.

Shaffer: Yes. First of all, it's technology. Tom Veloz, bless his soul, his wife had to actually suffer and wait two weeks to get an answer. The one thing that Tom stressed that Sheila wanted was that you had an answer that you had breast cancer by the time you left that building.
    Uncertainty is the worst that anyone can have. There's nothing worse than (not knowing). They have a great system in providing that (knowledge) in a nice, relaxed atmosphere. There are other imaging centers just as comparable; the fact that they have some of the top-notch equipment in the United States that a lot of other facilities don't have, makes it less chance of error.

Capra: We're very lucky in Santa Clarita that we have many different medical facilities, many different offices that deal with breast cancer, specifically, and different cancers. And like Colleen says, there are many offices that can do any kind of X-ray and can do mammograms, that are very, very capable, but we're very lucky to have the Sheila R. Veloz Breast Imaging Center — that's a mouthful — because they not only do film mammography; they (also) have the capacity to do ultrasound, and they have the digital mammography which, like taking a picture with your digital camera, you see it immediately—

Shaffer: They can also blow it up. Which — film mammography, when you have an area that's tricky, you don't quite have that. And Terry Bucknall, who is the director, has assisted us and we've assisted her. When she got a couple of individuals who were diagnosed, she called us: "Can you send us paperwork?" Can I give them out an application? And this and that. We have contacted other centers like UCLA; Providence just opened up a cancer ward, and we're working with them. I don't play favorites. My favorite is that client who's got breast cancer — no matter where they get the treatment, as long as it's in Santa Clarita or if they live in Santa Clarita, then I can help them. That's the only restriction I have. I try to be fair on everybody. I've actually done breast seminars for Henry Mayo hospital. I've been on programs to help educate.
    I totally believe that if you have the education, the fear is not going to be there. Again, that's why we decided to do a second opinions program, so people had a choice. They can make a decision.

Signal: Do you run into women who don't go for mammograms because they simply don't want to know?

Capra: (Yes.) They live in fear — "Oh, I don't want to hear the word cancer, so if I don't get the mammogram, then I won't hear the word." Which of course is nonsensical.
    I say, "Wake up sister, and get off your butt and go get your mammogram."

Signal: Isn't ignorance bliss?

Capra: No. Not when it can kill you.

Shaffer: The American Cancer Society has actually done studies showing that a mammogram does not stop (you from) getting breast cancer, but it can find it almost a stage earlier.
    You have four stages of breast cancer. I'm stage 4; it means it's metastasized throughout my body. Stage 1, very little, may be encapsulated. The earlier they find it, you have more options. You also have a higher percentage of survival rate.
    If I had cancer, I'd want to make sure I got (a mammogram) as soon as possible because I have more chances. You also have more options. If you catch it earlier, you don't have to lose your breast. You might do a lumpectomy. The longer you have it, the more it can grow and the fewer options you have.

Signal: Do you think you caught yours early?

Shaffer: As much as I could, under the technology that we had back then. Digital mammography wasn't out at that time, back in '99. That's how far (it has come). It was just starting to develop. They may have caught it. I have dense breasts, fibristic breasts, normally doesn't go into breast cancer. It was hard to find. In fact, I had a doctor tell me that I didn't have breast cancer—

Signal: Boy, were you happy you got a second opinion.

Shaffer: Yes. I would not be here, to this day.

Signal: Why are you here? You were given six months, three years ago. Do you attribute it to the technological advances that have been made in that short time?

Shaffer: The drug that I'm on, the chemo that I'm on, has only been (around for) eight years.

Signal: Then it's the current treatment methods, as opposed to simple chance?

Shaffer: No, I think, education. The public is not afraid of this cancer. In our grandparents' age, if you used to say the "c" word, "cancer," it was, "Shhh." "Oh, I'm not going to sit next to you, I might catch it." It was believed that way. Also the idea of saying "breast," heaven forbid, it was not something you talked about.
    We tried to break down the barriers. One of the reasons why I dress up as the angel, honestly, is to get attention, but it's attention in a good way. I want to show them that a cancer patient — you get this picture of someone who's almost dying, can't do anything. Well, I was on heavy chemo and I trained to do a 60-mile walk, and I did it, two weeks after I had six rounds of chemo — which is 18 weeks of chemo and six rounds of radiation.
    I'm still doing things. Just because you have cancer, just because I'm on treatment, doesn't mean you can't do anything. The worst thing that someone gets about cancer besides the fear of dying is the restrictions. There's nothing worse than when you're restricted and you (believe you) can't do something. If you can break through it — walking, for example. If you walk seven to 14 hours per week, you will reduce your chance of getting breast cancer by 26 percent. If you are a patient, you can increase your survivorship up to 38 percent.

Capra: So, yes. Medical, emotional, spiritual — it all plays together to help you beat any kind of cancer.

Signal: Why should people get involved in Circle of Hope?

Capra: We're an amazingly great bunch of gals, although men are welcome, and men certainly are welcome at the tea.

Shaffer: They can call 661-254-5218, to find out more about the tea and other functions that we do or to get involved. Our volunteers are all called Angels. We also have a Web site, www.circleofhopeinc.org. We are all-volunteer, nonprofit. Anyone who wants to donate an hour to three hours, come by. We have not only other survivors, patients, but you also have co-survivors or caregivers who have been on the other side, or people who just believe in the program. Get involved.

    See this interview in its entirety today at 8:30 a.m., and watch for another "Newsmaker of the Week" on Wednesday at 9:30 p.m. on SCVTV Channel 20, available to Time Warner Cable subscribers throughout the Santa Clarita Valley.


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