Establishing a Grassroots Advocacy Base
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Holmes Report

Establishing a Grassroots Advocacy Base

Sudden cardiac arrest (SCA) – a potentially lethal disturbance in the heart’s electrical system – is a leading cause of death in the U.S., taking the lives of up to 450,000 people each year.

Paul Holmes

Sudden cardiac arrest (SCA) – a potentially lethal disturbance in the heart’s electrical system – is a leading cause of death in the U.S., taking the lives of up to 450,000 people each year. Despite these grim statistics, little has been done to identify and treat at-risk patients (those who have had SCA, heart attack or heart failure). But, at least one-third of SCA deaths are preventable with a medical device called an implantable cardioverter-defibrillator (ICD).

ICDs are 98 percent effective, but at $25,000 for the device and procedure, no one understood the value of these “emergency rooms in the chest.” Additionally, the long-awaited results of the government-sponsored Sudden Cardiac Death in Heart Failure Trial (SCD-HeFT) were due, which had the potential to double the total number of ICD candidates. While Medicare is required to make coverage decisions based on medical evidence, cost is becoming an important consideration.

It was widely believed that Medicare would try to deny ICD reimbursement for some/all of the SCD-HeFT patients despite the fact that ICDs currently account for less than one percent of the Medicare budget. In response to this challenge, GCI and Medtronic developed a public affairs campaign that included strategies in media relations, government relations, grassroots advocacy and lobbying. An internet site,, was a critical component of this overall effort, as it served as the campaign’s primary patient advocacy and lobbying arm.

In the past, industry had mishandled this issue, directly criticizing Medicare without understanding how to influence the Agency or the importance of subtlety impacting change. While consumers have little or no influence on Medicare, they do have influence over Congress and, in turn, Congress has the ability to influence the debate and spotlight key political issues. Therefore, to ensure that members of Congress rallied around the issue and persuaded Medicare to implement a more favorable reimbursement decision, it was crucial to engage (among other stakeholders) a politically motivated constituency of advocates to lobby Congress for preventative therapy.

MDT/GCI worked with Grassroots Enterprises to develop an innovative Internet plan designed to mobilize a politically active SCA constituency – the first undertaking of its kind. The plan attracted, educated and mobilized more than 14,000 advocates – the largest group of consumers devoted to SCA issues ever. Advocates successfully communicated the life-saving value of ICD therapy and the immediate need for ICD reimbursement to members of Congress/Medicare by sending more than 1,100 letters over the course of six months.

As a result of this and other efforts, Medicare issued a positive coverage decision, which expanded reimbursement of ICD therapy to include 85 percent of SCD-HeFT patients. Today, if all eligible patients received an ICD up to 150,000 American lives could be saved from SCA each year.

Despite SCA being a leading killer most Americans have no idea what SCA is, often confusing it with a massive heart attack. Fewer still realize that many SCA deaths can be prevented. Unlike cancer and other politically charged healthcare issues, 95 percent of SCA victims die, leaving few survivors to advocate for preventative therapy. Few professional/patient organizations focused on SCA prevention. Those that did typically advocated for increased access to external defibrillators, not ICD therapy.

Four thousand SCA/ICD advocates were needed in a month’s time. Without existing groups dedicated to the prevention of SCA, the Internet provided a cost-effective recruitment solution, but we needed to rapidly educate site visitors and convert them into advocates. It was important that MDT have control over site content while remaining largely “behind the scenes.” Any direct links to lobbying efforts could potentially put the company in a tenuous position.

The campaign’s overarching goal was to expand Medicare ICD reimbursement for patients with risk factors like those in the SCD-HeFT trial; however, the Internet component had several measurable sub-objectives:

Establish a grassroots community of 4,000 – 10,000 politically active advocates with a vested interest in SCA prevention and ICD advocacy by March 2004 (prior to the announcement of SCD-HeFT results at a major medical meeting) and mobilize grassroots constituency to send 700 letters to members of Congress as a “call to action” for ICD reimbursement at key campaign milestones (100 letters at SCA Forum; 300 letters at Prevent SCA Day; 300 letters at CMS decision)

Given tight deadlines, it was decided to redesign an existing educational Web site operated by Medtronic (, to identify, educate, categorize and mobilize SCA/ICD advocates nationwide. MDT/GCI worked with Grassroots Enterprises to develop a reconfiguration plan that would shift the site focus from education to recruitment in order to better foster information exchange and issue advocacy. A combination of interactive design, content changes and sophisticated tracking software were proposed to attract attention and create a compelling call to action. Finally, it was agreed to rename the site to ensure consistency of message, underscore the campaign’s call to action and create a connection to the condition (most people didn’t realize that a fast heart beat led to SCA).

Life-saving ICDs had been available for 12 years with virtually no public awareness and support. MDT/GCI conducted two rounds of research with ICD patients and potential victims of SCA to refine ICD messaging. Findings from this seminal research shaped MDT/GCI positioning and are reflected in all campaign resources/materials and Web site content.

MDT/GCI identified four key milestones as measurement markers to evaluate success and provide motivational landmarks for the team – the ACC data release in March, SCA Congressional Forum in July, Prevent SCA Day and the preliminary Medicare reimbursement decision in September. The goal was to finish recruitment by March and then have advocates send letters demonstrating support to their members of Congress at the three remaining campaign milestones.

Although sheer numbers were important, mobilization of advocates from key targeted Congressional districts was essential. As part of an overall lobbying effort, MDT/GCI identified key members of Congress who had more influence on Agency, e.g. they held positions on Medicare Congressional committees/leadership positions in Congress, and targeted advocate recruitment in those districts.

As a result of this effort (in concert with other tactics), Medicare issued a positive coverage decision, which expanded reimbursement of ICD therapy to include 85 percent of SCD-HeFT patients. More than 1,300 of these advocates were self-identified heart attack or SCA survivors; these advocates were the most likely to take action because they are at highest risk for SCA, and many have a personal stake in Medicare issues. Grassroots constituency communicated the immediate need for ICD reimbursement to members of Congress and Medicare that shaped the positive coverage decision.

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