CaseStudy: Patients Get Last Word on Controversial Medical Research

Campaign Overcomes Anti-Abortion Challenge to Preserve Federal Funding

When the National Institutes of Health ruled that stem cell research could be legally funded last year to explore its potential for curing a long list of debilitating diseases,
the decision spurred an ethical and political debate because of its use of aborted fetuses. The cells, which are derived from excess human embryos from in vitro fertilization
procedures and aborted fetuses, show promise for curing diseases like cancer, Alzheimer's, diabetes and Parkinson's. But the issue of advancing this research with federal dollars
also promised to be a lightening rod of controversy among anti-abortion activists and politicians. The NIH decision prompted 70 members of Congress to write to Health and Human
Services Secretary Donna Shalala challenging the ruling because it conflicted with the congressional intent of a 1995 ban. The ban prohibited federal funds from being used for
research using human embryos. NIH's position was that the research does not violate the ban because stem cells are not embryos and can never grow into a human.

The stage was set for lawmakers to make some tough decisions about whether federal funds should be used to support this research.

The Alliance for Aging Research recognized that the only way to counter the emotive language and tactics of anti-abortion activists was with patients who could articulate the
benefits of the research and communicate the hope it brings. To develop this patient focus, AAR worked with Hill & Knowlton in Washington, D.C.

Using compelling patient scenarios for a series of congressional briefings, media roundtables and other editorial outreach efforts to argue the merits of the research, the
campaign eventually struck a chord with politicians. In September, an anti-stem research amendment was prevented from being considered by the House of Representatives. And
although the Senate considered an amendment, it was defeated. At this point, the NIH is moving forward with guidelines pertaining to federal funding of stem cell research.

This campaign earned an honorable mention in HPRMN's Best Campaigns of 1999.

Leading the Debate

Early anticipation and planning was key to the campaign's ability to generate political support and neutralize opposition from the anti-abortion community. With a budget of
$160,000, the campaign relied on broad coalition support from patient advocates and was named Patients' Coalition for Urgent Research (Patients' CURe).

It communicated key messages about the research's patient benefits before anti-abortionists could blast it, says Krista Donahue, H&K's account supervisor. "The abortion
side had to react to the crisis campaign we created."

To identify the best patient-focused messages, H&K conducted four focus groups and AAR commissioned Opinion Research International to take the national pulse on embryonic
research. The national survey found that more than 70% of Americans favored federal funding for embryonic research.

In press conferences and media briefings, three patients - a 16-year-old diabetic, a paralyzed veteran and a Parkinson's patient - brought these messages to life by discussing
the hope stem cell research offers them.

Strange Bedfellows

To extricate the stem cell research from the abortion debate, the campaign demonstrated that it had support from two unlikely corners - pro-life politicians and religious
leaders. Media roundtables that targeted newspapers like USA Today, the New York Times, Bloomberg and the Washington Post highlighted the pro-life backing from Sen. Strom Thurmond
(R-S.C.) and Rep. Brian Bilbray (R-Calif.). H&K also generated a Patients' CURe letter campaign that targeted Congress and included the signatures of four prominent
theologians representing the Catholic, Jewish and Islamic religions.

In addition to the patient appeals, these efforts helped the campaign achieve its ultimate goal - they helped convince Congress not to support the amendment last fall.

This victory also made Perry 25 cents richer. At the beginning of the campaign, the head of AAR's government relations taped a quarter to Perry's desk as a wager that the
campaign would not be able to land this Congressional support. "It would have been so easy for Congress to maintain the ban [from 1995], the cards were really stacked against us,"
says Perry.

(AAR, Dan Perry, 202/293-2856; H&K, Krista Donahue, 202/944-5108)

Spotlighting Patient Benefits

Armed with research from focus groups that found consumers were moved by the patient benefits of stem cell research, H&K crafted campaign messages that resonated with
lawmakers and the media. They included:

  • stem cell research gives hope to millions of Americans and their families;
  • federal funding will enable more scientists to study stem cells, thereby finding cures more quickly; and
  • federal funding will ensure oversight and public accountability.

Hill & Knowlton (Washington, D.C. Office)

Employees: 100

Healthcare Focus: pharmaceutical, hospitals, medical schools, HMOs

Web Site: http://www.hillandknowlton.com