Part IV: Between Us Goes to Florida
Taft Monthly Portfolio
(formerly the Fund Raising Institute Monthly Portfolio)
Volume XXXVIII, Issue 5 May 1999
Chronicles of a Fledgling Nonprofit
After landing in Jacksonville, the drive to Gainesville was an abrupt culture shock from walking the concrete canyons and bustling streets of Manhattan. The miles and miles of converted swamplands, beautiful oaks laden with Spanish moss, boiled peanut stands, and strawberry fields, handmade quilts hanging on fences outside ramshackle wood frame houses, Baptist churches on cement blocks - all provided a sharp contrast to the modern gleaming new breast centers popping up across the state. We chose Florida as our next tour area, because with 12,000 cases of breast cancer diagnosed each year, Florida has one of the highest rates in the nation. Whether a result of demographics or casual, there is a concentrated population of patients needing emotional support and survivor mentorship.
Our Progress
Driving across the disorienting flat landscape, I thought about our progress so far. Our web site is up and running, providing immediate access to patients and health-care providers. This saves us printing and mailing costs, and allows others to see photos of us in action - a wonderful personal touch. Three hundred kits are set to go out the door to Legacy Hospital in Portland. Alaska has announced the re-order of another 200 kits and flew Joanne Singer and me to Alaska to receive the check at the annual Breast Cancer Focus Luncheon in April. Alaska Blockbuster Video stores carrying copies of Between Us report waiting lists three deep, so Joanne is approaching the national office of Blockbuster Video to carry them in their community service sections nationwide. The print shop owner for our "healing journals" called after receiving the custom cover photo we have submitted and praised its quality, saying he'd like to print an extra 4,000 to sell separately, sending us royalties. Internet exposure on the Breast Cancer Newsletter has generated responses from several cancer centers. The brief article in SELF Magazine's February 1999 issue has netted calls from 20 states. Patients are hand-carrying kits into their own treatment centers requesting that they provide them. Calls from London, Winnipeg, and Argentina have spurred us to think about international distribution and a Spanish-language version. Continual affirmations that our product is needed and appreciated come our way every single day.
Our Challenges
But along with these steady strides forward come more challenges:
A Rude Awakening
At a luncheon graciously hosted by Mary Ann Marsazalek of Zeneca Pharmaceuticals at Shands Hospital in Gainesville, I became more educated about the realities of today's medical treatment. Forty hospital workers were expected at the screening of Between Us, but three quarters of the staff came in, filled their plates, and left without waiting for the video to start. At first, I was feeling as though I had never witnessed anything quite as rude. Then, while walking through the halls after starting the video, I noticed that each person was hard at work dealing with patients, answering phones, hustling between exam rooms, and grabbing bites off his or her plate in between - in short, too busy to even sit down to eat lunch. I witnessed one woman in her 50s crying while her husband helplessly draped his arm around her shoulder, and I wished I had more than one kit with me. All the more reason our "comfort in a box" is needed, I decided. Fortunately, Shands' patient-oriented breast surgeons agreed that anything extra they can offer the patient will be beneficial.
The problem, it seems, after another successful presentation in Tallahassee, is funding. Every place I introduced Between Us, the Staff wanted the product. However, not only are patient loads increasing, but reimbursable fees are dropping. Our final presentation in Florida, was at the 16th Annual Miami Breast Cancer Conference and we were able to speak to over a hundred surgeons. We were quite surprised to hear that fees for lumpectomies have dropped 150 percent in just the past five years. Radiologists reported fees of $44 for reading a mammogram. As one doctor jokingly put it, "I'm the one who deserves a $50 present."
Should We Compromise?
Joanne, Janet, and I immediately began discussions of how we could address this concern. Janet has put much effort into her conscientious approach to getting the best quality products in our kits, sampling over 60 candle scents for instance, sniffing out the right balance of pleasant, not too overpowering, taking into consideration the patient's condition during chemotherapy and the doctor's office as the kits are stored waiting for distribution. Joanne has years of experience in marketing children's products. We brainstorm options. We simply cannot provide top of the line products for bottom prices. Deluxe, standard, and custom versions seem like a possible option. The "deluxe version" would include everything, while the custom version would basically be a video, tote box, tissue, and notebook - hospitals could then add their own things. The most expensive item is the 100-minute phone card. It is like pulling teeth as we try to decide what to eliminate in the scaled down version, because so much thought has gone into choosing each one. We ponder whether or not we should stop going to hospitals, now that we've established the need and desire for our product, and concentrate once again on finding the right corporate sponsor or perhaps even, personal "angel."
These gleaming modern breast centers look more like art museums or luxury resorts than hospital facilities their valet parking, marble floors, and brass fixtures in the bathrooms. Chemotherapy rooms look out on the blue ocean. Cappuccinos are served in the waiting rooms. Instead of hospital white cafeterias, bistro cafes with wood floors and ceiling fans serve tasty Italian dishes. Boutiques with highly coifed representatives present the latest wigs, bras, makeup, and health food snacks. While at one cancer center boutique, I saw a "Softie," which is basically a camisole made of flannel with breast pockets, selling for $80. I asked the manager how anyone could pay that, and she said, "Oh, Medicare covers it!" When I got back home, I dug out old medical files and saw that prescriptions for tranquilizers ran $60 to $90 per script; a trip to the flexologist would be $70; vitamins, $100 per month; each visit for mental health therapy ran about $125; a breast prosthesis costs around $250 to $350; and chemotherapy drugs another $7,000. Most costs were covered by insurance of one form or another.
Is Breast Cancer out of Vogue?
One wing of a Stealth Bomber costs more than all the funds currently delegated to breast cancer research, almost none of which goes for emotional support. We approached the military to see how we might become a vendor through suppliers, the same as bandages or surgical bras are provided now. In response, we were told the "trend" of supporting breast cancer is falling off. Mammomobiles are gathering dust in parking lots, and staff has nine months to find other positions within the military. Still we are certainly diagnosing as many women now, if not more, as we are a few years ago when Department of Defense Breast Cancer funds of $200 million were cut loose. Every single year, death rates continue to surpass the toll of the entire Vietnam War. How do we face the "fashion" aspect of in and out causes? Can we even use it to achieve our goal of providing emotional support to the 186,000 women who will need it this year?
When patients called in response to the SELF Magazine article, only one of the chose not to donate the requested $50 to receive her kit. A husband of one patient said he was grateful there was something he could give that not only cost less than a dozen roses, but lasted a whole lot longer. So, perhaps our problem is one of educating consumers of the value, rather than lowering our price.
When hospitals decide they want our kits, but come up blank with options for resources to underwrite them, we have encouraged them to write a letter stating how many they would use if cost were not an issue.
We now have over 38,000 pending requests of this nature.
In the Next Installment: The response to Our New Pricing Options; Planning the Next Trip: Chicago, Salt Lake City, San Antonio, Las Vegas, Who Knows? And Who is Building All These New Centers? The Answers May Surprise You.
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