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Home > Press Room > Interviews & Features > 1999 M C & C Interview > Page 4

Managed Care & Cancer Interview (continued)

MC&C: What did the mandate-in-offering law actually provide?

Ms. Davenport-Ennis: It provided that insurers had to offer to the consumers in their health plan coverage for bone marrow or stem-cell transplantation with high-dose chemotherapy in the treatment of breast cancer. The law, however, was tightly drawn so that specific medical criteria must be met. We believe that the foundation of out law is based on free enterprise. If there is a product available that will improve the lives of citizens, and those citizens are willing to pay for it, then you have to offer it. If a citizen decides he does not want it, he is accountable for that decision.

Two days after the bill was signed into law, the insurance industry in Virginia opted to make it a standard feature of the plans. There was no additional change for full coverage for this benefit unless the employee was in a company with more than 50 employees; then, the additional cost was 50 cents a month. In addition, when we were invited to go into another eight states to introduce similar legislation, the same price structure was used.

With our success in Virginia, we then assembled sponsors and organized a task force to pass similar bills involving coverage for such therapy for breast cancer and in some cases non-Hodgkin's lymphoma in Tennessee, Missouri, Florida, New York, New Hampshire, New Jersey, and California.

MC&C: What other types of legislative bills have your foundations lobbied for?

Ms. Davenport-Ennis: When we are now invited to participate in state reform, we respond with our support and intervention. This past year, we have been involved in external appeals passage and clinical trials in the state of Virginia at the invitation of legislatures in California, New York, New Jersey, Connecticut, Nevada, Texas, and Washington. We also were invited to participate in a leading role to get the omnibus patient bill of rights passed in Virginia.

In 1999, we introduced an ERISA resolution in 41 states asking each state's General Assembly to pass it. It asked Congress to provide specific relief for remedy and regulation of the ERISA law of 1974. We were pleased that four General Assemblies have passed it to date, including Virginia, Tennessee, Missouri, and California.

Because it has become apparent that our involvement is being increasingly required on the national level, we now have representatives in each of the 50 states. Their role is simply to keep a watch on what is happening in legislation. If legislation is being proposed that we feel will be harmful to the community, we become involved; likewise, if positive legislation is being proposed in the community, we can send letters of support or make a few calls on key legislators in that state.

Furthermore, we serve as a resource for states that are interested in certain legislation. For instance, in North Carolina, we have been working with a group of representatives for about 4 months on legislation that they want to introduce this year. We are reviewing their language and offering counsel regarding the key people in their state who may be helpful. We have some of our advocates in North Carolina participating in this process, and certainly I have offered my support, with North Carolina being my home state.

MC&C: Do you see lobbying as the only way to enact coverage, or are other more targeted programs worthwhile?

Ms. Davenport-Ennis: Up to this point, it seems to us that it takes a combination of both approaches to be effective. We certainly prefer that reform come as a result of reasonable people reaching reasonable consensus about ways to improve coverage. So, when we can have open dialogue that leads to reform with insurance industry leaders, we do that. When we can support policy discussions in an agency such as HCFA, which has a broad influence on the coverage that all of us ultimately end up having, we have those conversations and offer constructive suggestions. In the past, when the National Association of Insurance Commissioners was trying to improve the recommendations being made to its members about coverage issues, we were invited to serve on the committee that helped with that process and provided information to the insurance commissioners to distribute to their members.

So, we think the ideal way to enact legislative reform is through conversations, exchange of data, and mutual agreement of improvement. When that does not happen, and consumers' needs are not being met, it is time to move to the next step, which in this country means some type of legislative reform.

MC&C: Because education is part of the mission of the Patient Advocate Foundation, could you describe some of your educational programs?

Ms. Davenport-Ennis: Two educational programs that can be found on our website are The Managed Care Answer Guide and The Patient Pal. Designed as an easy-to-use reference book for consumers, The Managed Care Answer Guide is available in both English and Spanish. The first chapter provides definitions of 150 commonly found words in any health insurance plan. It explains the seven types of managed-care plans and how they differ from an HMO. What an indemnity plan is and how it works is explained. The second chapter has a list of necessary questions to ask before enrolling in any health plan. In the third chapter, question specifically geared to a diagnosis of disease are provided. Information on how to file a grievance or an appeal is also included.

The Patient Pal is a pocket reference of toll-free numbers to help patients confronting insurance issues, job discriminations, and/or debt crisis. One section of The Patient Pal focuses specifically on fund-raising activates and how to use the media effectively to tell a patient's story in order to obtain needed funds.

Three other pieces of educational material are currently in the developmental stage. The first one, The Appeals Process, offers specific information on how to file an appeal, sample letters, and steps to document the process. The second one, Your Financial Resource Guide, takes the information in The Patient Pal to a more defined level by state and suggests ways to obtain financial aid.

Additionally, we convene a national legal symposium annually at Loyola University in Chicago, targeting its attendance to attorneys across the country with an interest in health care as well as preauthorization case managers from hospitals, clinics, and voluntary health agencies. We also invite every member of the Cancer Leadership Council (CLC), a national organization of voluntary health agencies, to attend the program, with no enrollment fee charged. Videotapes of the program are provided to law schools related to Loyola University, specifically for use by fourth-year law students who are interested in going into health care law. Much of the symposium is dedicated to ERISA law and cases. Attorneys from the Department of Labor as well as federal judges are included in the faculty.

We also focus on the educational needs of patients. Every patient who calls into the office, for example, receives a personalized package of educational material. About 150 different resource materials from the National Institutes of Health, the National cancer Institute, and pharmaceutical companies are provided to patients as needed. A newsletter has also been added to our list of resources, distributed for the first time in November 1999. It is called The Patient Voice. This publication focuses on three areas: legal news and notes, patient news and notes, and legislative updates and how the consumer can become involved. In addition, handouts provided by other nonprofit organizations as well as information on living ills are available. Additionally, we help out first Patient Congress in Washington, DC, this past July, bringing 200 patients to the Hill to meet legislators and to hear speeches by many scientific researchers. The second one is scheduled for September 20-22, 2000, in Washington, DC.

MC&C: What are the future goals of your foundations?

Ms. Davenport-Ennis: Our primary goal is to continue to empower patients to be well informed about insurance matters, there by becoming effective advocates for themselves as they try to achieve the best coverage they can. Through the National Patient Advocate Foundation, we are dedicated to continued involvement in the policy process, particularly as it relates to policies set by Health Care Financing Administration and the proposed changes as the population ages and the cost of health-care delivery through Medicare escalates.

This year, we also have an opportunity to provide scholarships to patients who have survived cancer and now want to obtain their degrees. For every partner who made a commitment of $50,000 per year to this organization, 10% is designated for a scholarship for a survivor of cancer.

Another goal of ours is to continue to be available for one-on-one counseling; to that end, we plan to add a chat room to our website. A counselor will be made available for a specific number of hours each day of the week, 7 days a week.

Finally, moving very aggressively into patient education within the Spanish-speaking populations is a tops priority for us for the years 2000 to 2003. Taking part of the grant commitments that have been made to us for this year, we have developed a campaign to attempt to distribute our information not only to patients in Spanish speaking populations, but also to their medical establishments, so these patients can learn of our services.

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