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Home > Press Room > Interviews & Features > 1999 M C & C Interview > Page 3

Managed Care & Cancer Interview (continued)

MC&C: Could you describe the information in your patient database?

Ms. Davenport-Ennis: To add credence to our testimony in legislative arenas, we have developed a patient database report. From all patients we have served, we collect all the specifics of their cases, including the diagnosed disease, the insurers, the particular denial confronted, the specific problem, and the actual steps we've followed to reach a resolution. Once each quarter, we take the data from these cases and create a patient data analysis report.

Essentially, there are four sections in the report: the first one shows the number of complaints by state, the second one by disease, the third one by health plan, and the fourth one by ERISA complaints. For each section, we list all 50 states alphabetically and show how many complaints were resolved by our case managers and how many were resolved by our attorneys.

We use these reports routinely during visits on the Hill, and we find that they command a lot of attention. If we are sitting in an elected official's office and we can show him how many complaints we have received from his state as well as a list of the insurers against who their constituents have a complaint, the elected official is interested. If our data supports their similar experience from constituents calls, they often offer support in negotiating improvements with health plan representatives or the state insurer in their state. This process affords a productive environment for improvement through consensus.

MC&C: Is such damaging information regarding specific companies made available to others?

Ms. Davenport-Ennis: Because we do not want to hamper our ability to negotiate for coverage for more than 6,000 patients a year, our information is confidential and not available for public distribution. Every day, we attempt to resolve patient's complaint on a one-on-one basis, and we maintain a positive relationship with the payers.

MC&C: To resolve such complaints, how have you established an open dialogue with individual insurers or managed-care companies?

Ms. Davenport-Ennis: Perhaps the most effective approach is performed by our case managers; every single day, our case managers negotiate with members of various organizations and work with them cooperatively to find resolutions to the cases. Now that we have established a rapport with representatives of many health plans, they know who we are, what we are trying to accomplish, and that we are reasonable in our negotiations; sometimes, the changes that we may negotiate on behalf of one patient actually are reflected in the treatment received by other patients in their plans.

Another way that we try to effect reform with individual members is through national meetings with representatives from the health insurance plans that participated in what we called our National Clinical Trials Demonstration Project. The American Association of Health Plans and Patient Advocate Foundation hosted a meeting with key leaders from various employer groups across the country and representatives from ASCO, ASH, and ACCC as well as ONS and select advocacy groups to develop a program to encourage each insurer to voluntarily find the patient portion of the cost for clinical trials. Consequently, our working group created a national demonstration model for voluntary funding for clinical trials.

On December 11, 1998, a tentative agreement was reached by members of the American Association of Health Plans and each of the institutes of the National Institutes of Health regarding voluntary funding of clinical trials. As of September 1999, NIH and AAHP mutually agreed they could not reach agreement on a process of implementation. Our working group will reconvene in 2000.

MC&C: How did you personally become involved in legislative reform on behalf of patients with cancer?

Ms. Davenport-Ennis: While I was recuperating from my first breast cancer surgery, I met a young, divorced mother who had recently moved to our community because she became engaged to a very good friend of my husband's. Over the course of several months, Cheryl Grimmell underwent surgery for a ruptured disk, which, in fact, was caused by a metastatic tumor from undiagnosed breast cancer. At this time, I learned that I had cancer in the opposite breast and required more surgery. To say that I was in shock would be the understatement of the century. But I think it was God's way of getting my attention, very candidly, because I never slowed down or changed my life one bit since the first surgery, continuing to be on the road about 180 days a year with my career.

While Cheryl was recuperating from disk surgery, she learned she had stage IV breast cancer, and the doctors were giving her no hope. I pleaded with my doctors to do something for Cheryl, and they agreed to see her. They concluded that she would be an ideal candidate for bone marrow transplant. Covered by a good insurance plan, Cheryl was approved insurance for the procedure. Four days before the transplantation, her insurer withdrew preapproval for the procedure; therefore, in order to be admitted to the hospital, a $50,000 deposit was required. Needless to say, she did not have the resources to get that kind of money and was in complete panic.

With great but misguided confidence, I told Cheryl that I would negotiate with her insurer to pay for the procedure. I was unsuccessful in my attempts, and the state insurance commissioner told me that if I did not like the law the way it was for my friend, then I should come up to Richmond and try to change it. So, I formed a task force consisting principally of physicians who had battled legislatively for patient's rights, attorneys who had done the same, state legislators from Virginia who had a passion for health-care reform, and members of grassroots organizations who had worked through that process.

This task force met every 3 weeks for 8 months, and when the General Assembly convened in January 1994, we were prepared with our bill, which was called a mandate in offering. With no dissenting votes in the House or Senate, the bill passed and the governor signed it into law. Once our law had become front-page news, we had many states requesting our help. All of this activity was a result of Cheryl and her case, and I really think that had I not been touched with the disease twice, I would never have slowed down long enough to realize that there was a problem.

Incidentally, Cheryl did undergo her bone marrow transplant. For 3 1/2 years, she required no medication, returned to work, and enjoyed a normal life with her son. She died December 26, 1994.


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