Diabetes Advocacy

Preface

Ann Albright PhD, RD, Guest Editor

Advocacy is an essential component of diabetes care. At first consideration, it may not be immediately apparent why this is so. But consider the following situations:

• Your patient is having difficulty dealing with her diabetes, and you would like to enlist the services of a diabetes educator, but this benefit is not covered by her insurance.
• Your patient wants to become more involved in his care by performing home blood glucose testing even though he does not use insulin. Again, this self-management tool is not a covered benefit of his insurance plan.
• Your patient is managing her diabetes well, but she is being denied the opportunity to hold a job for which she is capable strictly because she uses insulin.
• Your patient is a child who is denied the opportunity to participate in a school activity because he needs assistance using his blood glucose monitor or may require glucagon.
• You are a diabetes researcher, but funding for diabetes research is so insufficient that important advances in the study of this disease are being seriously hampered.

No matter what your professional or personal contact with diabetes, it is highly likely that you and your patients have experienced some inequity due to diabetes. What do you do about these and many other advocacy-related diabetes care challenges? Become involved in and support advocacy efforts.

By advocating for improved health care coverage, clinicians can do a better job of caring for patients with diabetes, and those with the disease can have access to the necessary tools and training that allow them to live with diabetes while research advances continue. By advocating for the elimination of discrimination, we can help those with diabetes be productive citizens and enjoy a quality of life that diabetes should not be allowed to take away. By advocating for increased research funding, we can help ensure continued advances in understanding, treating, and eventually preventing and curing diabetes.

Although the word advocate conjures up different images, it is defined as a supporter or defender. Supporters or defenders of those affected by diabetes need to come from a variety of places and backgrounds. Those who live with diabetes and their family members, health care professionals, policy makers, and legal and advocacy professionals must all be participants in diabetes advocacy. Each type of advocate plays a different role, but the contributions of each are vital to achieving success.

This From Research to Practice section is intended to provide a thoughtful discussion of a selected number of diabetes advocacy issues. The topics included are:

• The use of legal advocacy to reach important achievements in eliminating discrimination.
• The history and current state of health care coverage, including state legislation and Medicare coverage.
• A discussion of advocating for children as they navigate through day care and school settings.
• A letter summarizing the activities of the Congressional Diabetes Caucus.

In addition, in the Special Report department of this issue of Diabetes Spectrum, you will find a related report on the status of research funding for diabetes and the Diabetes Research Working Group (DRWG).

The reach that diabetes advocacy can have is enormous. And while this is not an exhaustive presentation on advocacy, the topics covered provide a stimulating and thorough discussion of this vital element of diabetes care.

The use of legal advocacy to reach important achievements in eliminating discrimination
The legal system is a crucial forum for creating policies (laws) that have a far-reaching impact on those with diabetes. The elimination of diabetes discrimination will not occur by silence, but rather will come through bringing issues to the forefront. In order to do that, there must be legal support to protect individual rights.

It is important to remember that those with diabetes are not and cannot be requesting preferential treatment, but instead should expect and demand fair and consistent treatment. In order to achieve fair treatment, all people with diabetes must realize their responsibility to practice good care, and the legal system must be accessed when necessary to defend against injustice.

The American Diabetes Association (ADA), under the leadership of attorney Michael Greene, is working to protect the rights of those with diabetes. ADA is the only organization working on legal advocacy specifically for diabetes. In his article on legal advocacy, Greene describes the function and role of legal advocacy and provides direction on how to accomplish this important advocacy effort. A crucial element that is also addressed is the institutionalization of this work within the structure of the ADA.

The history and current state of health care coverage, including state legislation and Medicare coverage
The political system is also a crucial forum for creating policies that have a far-reaching impact on those with diabetes. There is a significant gap between the necessary components of diabetes care and what is being received by the majority of people with diabetes.¹ Ann Daly, MS, RD, LD, CDE, and Carolyn Leontos, MS, RD, CDE, discuss the history of the need for legislation aimed at increasing access to necessary diabetes supplies and education and offer state specific examples of how this state legislation has been accomplished. These authors also describe the recent expansion of Medicare benefits for diabetes and efforts to obtain coverage for medical nutrition therapy.

A discussion of advocating for children as they negotiate through day care and school settings
The advent of blood glucose monitoring and the use of multiple daily insulin injections have allowed better management of blood glucose.² However, these advances have created challenges for children with diabetes and their parents that necessitate advocating on their behalf. In his article, William Clarke, MD, describes why, how, and by whom advocacy for children should be done. He provides examples of specific cases to illustrate crucial features of advocacy for children and to underscore the important role of health care professionals in these advocacy efforts.

A letter summarizing the activities of the Congressional Diabetes Caucus
In 1995, an important event occurred that has propelled legislative advocacy for diabetes to a higher level: the formation of the Congressional Diabetes Caucus by Rep. George R. Nethercutt, Jr. (R-WA). This letter from Rep. Nethercutt describes the issues the Caucus is addressing and provides important information with which anyone involved in diabetes care should become familiar.

Today, the Diabetes Caucus is the largest caucus in the House of Representatives, and recently a Diabetes Caucus has been formed in the Senate, as well. As diabetes advocates, we need to continue to ask our elected officials about their position on diabetes issues and to provide positive feedback and support when they contribute to eliminating the burden of diabetes on our behalf.

A report on the status of research funding for diabetes and the DRWG
Diabetes research has been woefully underfunded, especially when considered in light of the significant public health burden posed by this serious disease. In response to advocacy efforts, a congressionally appointed work group, the DRWG, was formed to develop a report identifying promising areas of research in diabetes. The DRWG report not only identifies extraordinary opportunities for making tangible progress in diabetes, but also provides justification for the significant increase in research funding that diabetes warrants.

Elsewhere in this issue of Diabetes Spectrum, Steve Smith, vice chair of the board of ADA and a member of the DRWG, provides an overview of the topics covered in the report and a discussion of the ways in which the report is being used as the centerpiece for research funding advocacy efforts. It is imperative that all who want to see research funding for diabetes increase make a strong commitment to achieving the funding levels recommended in this important report.

The authors who have contributed to this research section are all stellar examples of diabetes advocates who make significant contributions to improving diabetes. In addition to the valuable information these authors provide, their own efforts serve as motivation for each of us to consider how to become involved or to increase our efforts in diabetes advocacy. As health care professionals in diabetes, we all have the opportunity and responsibility to be advocates for diabetes.

References
¹The Diabetes Control and Complications Trial Research Group: The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent mellitus. N Engl J Med, 329: 977-86, 1993.

²Harris M: Diabetes in America. 2nd ed. Bethesda, MD, National Institutes of Health, 1995, p. 1-13.

Acknowledgments
The guest editor would like to thank Mike Mawby, Gerry Lynam, Shareen Arent, and Joe LaMountain for their helpful suggestions and dedication to diabetes advocacy.

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Last updated: 12/99
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