Clarian Ovarian Cancer Story Transcript
ORIGINAL RADIO SCRIPT FOR OVARIAN CANCER STORY, AIRED MAY 8, 1997
By the time a woman discovers she has ovarian cancer, it's usually too late. There are no obvious symptoms until the cancer reaches its last stages. The survival rate is between 10 and 20 percent. However, high dosage chemotherapy can increase the odds for some ovarian cancer patients. But this treatment is complicated and expensive and some insurance companies refuse to cover it, although many do. Blue Cross and Blue Shield of Vermont is one carrier that does not. A Brattleboro woman is trying to get Blue Cross to change its policy before time runs out for her. VPR's Steve Young reports:
SOUND SCENE: (Garden "We have raised beds...")
1) At age 44, Karen Dieninger shows few signs that she has a fatal disease. There's perhaps a little slowness to her walk, an occasional slight tremble in her voice. She's naturally rather slim. but a year ago, she noticed she was gaining weight. Her gynecologist thought she might be pregnant. It turned out to be a tumor in her ovary. She underwent chemotherapy and lost all of her hair, including her eyebrows and lashes, a common side effect of chemotherapy. She's in remission now and her hair is back, a little grayer than before. But the remission is most likely a temporary respite. So while her appeal against her insurance company is being reviewed, she resorts to home remedies. She believes, for example, that green vegetables help keep her alive.
(MORE GARDEN, in the clear "...phyto chemicals..."
2) This year, Karen and her husband Jim went on a macrobiotic diet and began growing their own Chinese greens and vegetables in a terraced garden behind their house in Newfane, Vermont, a few miles north of Brattleboro.
(MORE GARDEN, listing vegetables)
3) But it's doubtful that greens alone will prolong Karen's life. This is her second bout with cancer. Ten years ago, she developed breast cancer and had a mastectomy, which saved her life. This time the procedure her doctors urgently recommend involves high dosage chemotherapy, or HDC, drugs so powerful, they wipe out the patient's bone marrow, requiring a complete bone marrow transplant, and the harvesting of new stem cells to replace the lost ones. The procedure costs $100,000. In April, when Karen's insurance company, Blue Cross/Blue Shield of Vermont, denied her request for coverage of this radical procedure, they deemed it "experimental." Karen was devastated.
(KAREN 1 "I felt totally robbed of hope. Here was this treatment that I felt should be covered and my two oncologists had recommended for me. ItÆs the best thing for me. If my cancer returns, the most powerful weapon isn't going to be available to me.")
4) The company's position is controversial for a number of reasons. Insurance carriers in forty states already cover the procedure. Blue Cross itself covers it in five states, including Karen's home state of Massachusetts, about an hour's drive from where she now lives. Bob Opel is a Vice-President at Vermont Blue Cross.
(OPEL 6 "It would be no more appropriate for us to decide topay because five other plans have decided to pay than it would be for us to deny because the other fifty-five Blue Cross plans had decided to deny. We make our own decisions based on the criteria in our contract. ThatÆs our agreement with our subscribers.")
5) Opel says the ovarian treatment is experimental because it hasn't undergone lengthy clinical trials, meaning scientific studies under controlled conditions. But according to the medical director at CHP, another Vermont insurance carrier, such "blind" trials are difficult with diseases which have such high mortality rates. There's the ethical problem, for example, of assembling a control group. These are patient. In 1990, Sue Jackman of Shelburne was refused coverage for HDC to treat her breast cancer. She mounted a highly visible campaign in the media and won. In doing so, she set a precedent, the first breast cancer patient in the country to be covered for HDC. Many credited her vocal advocacy for the company's change of heart. Bob Opel has a different explanation.
(OPEL 6(b): "Sue Jackman happened to be right. The time had really come to make a change.")
7) Karen Dieninger feels that Sue Jackman, who died recently, six years after her HDC treatment, was a special case, unrelated to hers.
(KAREN 4 "When Blue Cross/Blue Shield offered to cover Sue Jackman, I believe they were the first to do so in the country. I don't feel I'm the first person asking this.")
8) Recently, Karen and Jim began a petition and letter-writing campaign of their own to convince the company to change its mind. The letter writers include Governor Howard Dean and all three members of Vermont's congressional delegation. Blue Cross's Bob Opel says these efforts will make no difference in their decision-making process.
OPEL 1: "Our obligation is to act for the benefit of our subscribers. We have limited resources. If we spend money on benefits that are not of proven benefit, that money isnÆt there to spend on proven benefits. Then either premiums go up, or we lose money. In either case, weÆre dis-serving our subscribers."
9) Karen's husband, Jim, points out that Karen is also a subscriber:
JIM 1 "They made a purely business decision. For us it was a medical decision."
10) Karen and some of her advocates, see the insurance company's decision as a portent. They believe that under the banner of managed care, insurance companies, not doctors or patients, will increasingly make life and death decisions based on cost/benefit analysis, not on medical need. Former state senator Peter Welch is offering free legal advice to Karen Dieninger..
PETER 1: "Paying for this treatment puts Blue Cross at a competitive disadvantage to other insurance carriers. Managed care worships at the alter of the bottom line, that's one of its downsides. And I do expect that there will be a lot more people in Karen's position.ö
11) Bob Opel denies his company's position represents any new trend or has anything to do with managed care.
OPEL 7: "We've been struggling with these decisions for years, long before there was anything called managed care. It has always been the case that there have been things that werenÆt covered. WeÆve always had to struggle with where these lines are drawn in particular instances."
12) It's been five months since Blue Cross denied Karen's coverage. It's unclear why it's taken the appeal board, an internal company entity, so long to review the case. Doctor Letha Mills, one of Karen's cancer specialists at the Dartmouth-Hitchcock Medical Center submitted two promising studies reported in medical journals to support Karen's case. Both report significant positive responses in ovarian cancer patients to the HDC/bone marrow treatment. According to Doctor Mills, time is of the essence. Remission for ovarian cancer patients rarely lasts more than a year.
(KAREN 2 "I feel like I've been given time to fight this. But if I go out of remission - and statistically, given the nature of ovarian cancer, thereÆs certainly a large chance that I will - then IÆll need this treatment immediately."
HOUSE TOUR 1, Karen: "This is the living room. Like many Vermont houses, it has a lot of spare rooms. We really love this flagstone fireplace and the bay window that looks out on the garden."
13) The Dieningers live in a renovated farmhouse shared by Karen's 16 year-old daughter Erika and a few blue-eyed Siamese cats. Erika is taking voice lessons. She sings a Mozart aria when she arrives home from school, accompanied by a CD.
(aria in clear)
14) The family tries to keep their spirits up, but it's difficult, particularly for sixteen year-old Erika.
DAUGHTER 1: "I really need her as part of my life and I love her very much and I can't imagine life without her."
15) Karen's husband Jim:
JIM 2: "Ever since last August, life has been hell. I canÆt tell you the emotions you go through and your loved ones go through. ItÆs turned this household upside down. And poor KarenÆs been through so much. But sheÆs so strong and she keeps going."
16) When asked what he would say to Karen and others in her predicament, Bob Opel replied that he hoped Karen understood that the company wrestles everyday with these decisions.
OPEL 9: "We really do try to understand the position you're in. We try to give you every opportunity to participate in the process. We take these cases very seriously and we work on these cases as hard and as diligently as we can."
17) Karen and Jim say they will sue the company if they lose their appeal, but the odds are against Karen living long enough to see the case go to court. While she awaits the appeal decision, she relies on green vegetables and the support of her friends and family.
KAREN 7: "That's what you learn as a cancer patient, that very quickly you need to define your life in terms of whatÆs really important to you. And whatÆs really important is family and people."
18) For Vermont Public Radio, I'm Steve Young