Publications
APS Bulletin • Volume 9, Number 2, March/April 1999
Patient Advocacy Groups
Myra Glajchen, DSW, Department Editor
Alliances in Political Advocacy: Lessons from the Front
Kimberly Calder, MPS
Rapid changes in the American healthcare system have proved to be a focal point for political advocacy for patients and healthcare professionals alike. If the American Pain Society (APS) is successful in forging alliances with patient and consumer organizations, the society's leaders and members are likely to learn firsthand the extent to which their goals are similar to those organizations, and how they can unite to pursue projects of mutual interest. The following examples are drawn from my personal experiences with advocacy campaigns and coalitions. They are but some of the success stories that have shaped and will continue to shape the healthcare system. Important conclusions and lessons can be drawn from these illustrations, which I describe in the hopes of stimulating additional thought and involvement in these efforts on the part of the APS's leaders and members.
When New York State's "insurer of last resort" faced bankruptcy in the early 1990s, more than 20 organizations whose constituents faced the loss of insurance banded together to craft legislation eliminating the most discriminatory, but legal, practices of insurance companies. Impassioned by the simple message of fairness, these groups, allied as New Yorkers for Accessible Health Coverage (NYFAHC), succeeded in negotiating precedent-setting changes in state insurance law. Collectively, the group spent less than $7,200 on the campaign, compared with more than $1 million by the health insurance industry. As a result, chronically ill and disabled people were given the right to purchase insurance from all companies doing business in their communities.
In 1991 three nationally recognized breast cancer advocates acknowledged that their passionate desire to eradicate breast cancer required the marshaling of forces far surpassing those of their respective organizations. Since its inception in 1991, the National Breast Cancer Coalition's membership has grown to 450 organizations and 58,000 individuals. The coalition's campaigns for increasing federal appropriations for breast cancer research have increased funding sixfold to a level of $595 million. In addition, Project Leadership, Education, and Advocacy Development (LEAD), a boot-camp-type training course in epidemiology and basic and clinical science, has earned a place for breast cancer survivors on numerous research review panels, study sections, and scientific advisory boards.
As dramatically successful as these two examples are, both continue to be driven by patients and their advocates but with little involvement of healthcare professionals or their associations. Although professionals exclusively have led equally successful campaigns, an increasingly successful trend has been developing among healthcare advocates from the professional and patient ranks alike to seek each other out and join forces in both individual campaigns and coalition building.
In the pain community, the wisdom of forging patient and provider coalitions has already been demonstrated in the successful campaign to oppose the Lethal Drug Abuse Prevention Act. The Coalition to Improve Pain Management, consisting of more than 50 consumer and professional provider groups, including APS, continues to work together to offer the 106th Congress a constructive agenda for promoting palliative care. Like the New York-based groups described above, this coalition's success illustrates the power of a policy crisis to bring like-minded groups together.
The further example of the Cancer Leadership Council provides an excellent opportunity to examine the issues of trust and professionalism that can challenge, and even frustrate, the best efforts to forge alliances between patients and healthcare providers. When legislative attempts at federal healthcare reform became a reality, several leading cancer patient groups began meeting in Washington to discuss their common concerns and priorities. Their comfort in working together encouraged the groups to continue meeting on an ongoing basis to review and respond to federal legislative and regulatory matters affecting cancer care. The group's increasing importance as a force in shaping cancer-related policy led others to seek a seat at the table, and the American Cancer Society, American Society of Clinical Oncology, and Oncology Nursing Society joined in their efforts. Considerable time, debate, and effort to preserve the original group's core ethic of patient-centered advocacy, as well as legitimate worry about maintaining its well-deserved reputation for professionalism, have made its recent expansion to more than 20 groups a process of extreme caution.
Clearly, the need for patient and provider groups to trust each other in the political arena is as vital to a campaign's or a coalition's success as is the need for trust between an individual patient and his or her healthcare provider. If APS is to succeed in forging such alliances, the individuals involved must establish and maintain trust in the belief that the experiences and expertise each brings to the effort are of equal value, and that working together will only enhance the reputation of all the players. Patients and their advocates will have reason to walk away if they feel condescended to or patronized, and professional associations will have reason to walk away if they experience a sense of threat to their individual and professional reputations.
It is important to recognize that among the legitimate reasons for coalitions to cease or alliances to fail is a lack of momentum or urgency in ongoing work. However, it is far easier to rally support from an established group than to struggle in the face of a crisis with an urgent deadline. Therefore, even if there is no longer a compelling legislative issue, it is important to identify other activities on the larger policy, education, media, and research agendas that it behooves the groups to pursue.
In fact, there are many measures of success for political advocacy campaigns, coalitions, and alliances. Failed legislative campaigns often bring like-minded groups together, and even strange bedfellows can find themselves collaborating on the next piece of legislation or educational or research initiative simply because they came to know and trust one another through the course of a campaign. APS will do well to articulate where patients and patient groups can assist in efforts to advance research in pain and pain medicine, and to promote pain management within managed care organizations and, particularly, in consumer and professional-education efforts.
Kimberly Calder is vice president of public policy at the American Cancer Society, Eastern Division.