Pharma's Advocacy Dance

October 1, 2006
Michæl Durand
Successful Product Manager's Handbook

Some advocacy groups will not endorse one product over another. companies need to determine boundaries early to avoid getting in trouble.

If it takes two to tango, then no one wants a clumsy partner. In this collaboration, movement should be fluid, and steps should be in line. And like the tango, pharma companies that partake in the advocacy dance need to carefully count every move, keep rhythm, and not miss a beat.

Mapping the Issues

The relationship between pharma and patient education groups can be as delicate as it is productive. On the positive side, companies can aid in clinical-trial recruitment and educate consumers about disease issues; advocacy groups win support for their critical missions and can use pharma companies as sounding boards for issues and concerns. But what happens when pharma companies clumsily attempt to prod advocacy groups into product endorsement and sharing mailing lists? These efforts rarely work and can backfire with long-lasting consequences. Clear-headed partnership isn't a quid pro quo—pharma companies can't expect big returns from grateful non-profits just for writing a fat check.

Instead, the most successful collaborations have come out of understanding and finding common ground. The best alliances have been Sanofi-Aventis's diabetes awareness campaign, Amgen's support of oncology organizations, and Merck's alliance with osteoporosis women's groups. These examples have worked because they don't use tactics to achieve limited marketing goals—they think of long-term strategies. The best advocacy-relations programs position a company in a therapeutic area and demonstrate that the company is concerned about the patient community—not just market share.

Make a Checklist for Great Advocacy Relations

Years before a new drug is launched, pharma companies and advocacy teams should map out how strong ties can advance corporate goals and brand objectives. Here are some rules of the game.

Read the Road Ahead

Product managers see advocacy groups as allies to help advance brand objectives, like increasing disease awareness, building demand for new treatments, and helping facilitate FDA clearance of their drug. It works for short-term solutions, but this approach misses the opportunity to strengthen long-term ties—alliances between companies and nonprofits are not spigots to be turned on and off. Rather, healthy relationships have to make a commitment for the long haul; a company cannot walk away from an alliance if a Phase III trial fails. Unfortunately this has happened, leaving the advocacy group feeling like it was used.

To avoid these situations, a "time horizon" should be delineated. Nonprofits need to realize that a company's commitment is not open-ended, but only for a specified period of time. Both sides should discuss the "what ifs," including the plan for handling programs should the drug trial fail.

When dealing with leadership, is it the brand manager's responsibility to take charge? The answer is no. Brand managers are responsible for commercial success, so companies' communications departments should be advocacy contacts. And third parties should be used judiciously. Public relations agencies can play the role of matchmaker, but that's it. Advocates want to discuss programs and ideas directly with company representatives, not just their surrogates. "Creating one key point of contact that coordinates across the organization," says Kathryn West, Amgen's advocacy relations director of the oncology business unit, "is helpful in maintaining consistent relationship management."

Map the Issues

Pharma companies and advocacy groups won't agree on everything. Pricing issues, for example, are sensitive topics and patient advocates may be uncomfortable siding with pharma. It doesn't mean advocacy groups are being difficult—it's important for both sides to have honest, dispassionate dialog about the most critical concerns, and agree to disagree on other matters. "When you can find this common ground," says Kathleen O'Donnell, communications consultant and former employee of Bristol-Myers Squibb and Biogen, "great things can happen."

If one party staunchly opposes the other, however, mapping potential issues can resolve future conflicts. For example, after the National Organization of Rare Disorders (NORD) asked the US Patents and Trademark Office to prohibit patenting of gene sequences, biotech companies wouldn't take NORD's side—the position conflicted with their mission. But instead of discarding the partnership, NORD made up for its opposition by being extremely supportive of biotech's efforts to find treatments for rare disorders. It also has partnered with biopharmaceutical companies on education programs and drug-access plans.

It's crucial to prioritize areas of common interest and conflict (see "Mapping the Issues," right). Advocates and pharma should consider all opinions and find a happy medium.

Answer the Need

The most obvious intersection between pharma companies and advocacy groups is disease education. Why? Because there is need for it. People with certain diseases seek information and may not openly share their condition with people close to them. The forums pharma companies and advocates create for these people can expand a network of trust and education. Here are examples of successful collaborations:

  • Biotech company Cephalon worked with the National Sleep Foundation (NSF) in the late 1990s to raise awareness about narcolepsy, an often-misdiagnosed disorder. In order to identify people who may have clinically defined narcolepsy, Cephalon and NSF invited consumers to call a toll-free number to participate in a quick interview. Based on responses, people who potentially had narcolepsy were given the names of specialized sleep centers; others—who were simply burning the candle at both ends—were given information about the importance of adequate sleep.

  • Sanofi-Aventis partnered with the Prostate Cancer Foundation (PCF) to develop and publicize a "Report to the Nation," a summary providing prostate cancer information. Additionally, Sanofi-Aventis and PCF partnered with The Washington Post to conduct an online forum for men.

  • "Aim. Believe. Achieve: The Diabetes A1C Initiative," also sponsored by Sanofi-Aventis, was an example of how pharma and third-party organizations can achieve common goals. Through the initiative, patient advocacy and professional groups, including the American Diabetes Association and the International Diabetes Centers, joined forces to help people with diabetes get control of their disease. "The program allowed diabetes groups to take a leadership position on a serious public health problem that, up until that point, had received little attention," says Peter Modica, a medical writer who worked on the campaign while at Burson Marsteller.

Done right, this level of collaboration is a win-win-win situation: first, patients become informed; second, advocacy groups can get help with fundraising and developing business plans from pharma companies; and lastly, pharma companies can get advocacy quotes in a launch press release praising new patient therapies.

But there are a few things to remember: Some advocacy groups, especially the more established ones, will not endorse one product over another. Companies need to determine boundaries early to avoid getting in trouble. FDA does not regulate non-profit organizations, but it can find the company in violation of the Food, Drug and Cosmetic Act if the drug company encourages the advocacy group to make statements outside of labeling.

Pick Your Battles

Tango dancers won't settle for any partner and neither should drug companies. They should assess an advocacy group's infrastructure and standing within medical and patient communities before embarking on any collaboration.

When finding the right fit, there's also a choice of big versus small. Well-established organizations, like the American Heart Association and the Arthritis Foundation, have deep wells of experience but require significant financial investment (sometimes more than $1,000,000) before collaboration. Their decision-making process is often long and full of red tape. Smaller advocacy groups (such as the cancer support group Vital Options) are more flexible in their financial requirements, and rely on volunteers or "quasi-professionals"—those who have had the disorder or may have first-hand experience through relatives or close friends. Passion and commitment may be higher here because it's personal. But for companies that decide to collaborate with small advocacy groups, there's a trade-off: High-profile organizations can reach large numbers of patients.

Which group size is better to work with? It clearly depends on the brand objectives, your time frame, budget, and audience. If pharma companies are targeting colorectal cancer patients—a small community of about 300,000 patients—it may be more efficient to work with niche cancer groups than large organizations like the American Cancer Association (see "Make a Checklist," right).

Be Transparent

But despite all the good they do, pharma and advocacy partnerships can get a bad rap. The news media in the United States and abroad have published articles critical of the ties. The prevailing theme of these articles is that companies are "subverting" nonprofits by underwriting patient and public-education programs.

This criticism is unfair. Organizations dedicated to disorders like colon cancer could not exist without the help of the pharma and biotech industries. It's no secret the reason is financial—companies can supply up to 50 percent of the agency's funding. But nonprofits are sensitive to these news accounts. Advocates are tightening their disclosure requirements and eschewing activities that may hint at product endorsement. To further insulate industry and agencies from criticism, it's essential to disclose the ties between company and non-profit groups in public testimony, in press releases, and Web sites. There's less scrutiny with paper trails.

At its core, there is nothing wrong with creating and nurturing ties with advocacy groups. These alliances have helped the medical community identify new patients and have helped patients cope with disorders. Pharma companies must remember, however, the advocacy dance is more than just fancy footwork. Careful attention to long-term goals and common ground will ensure that pharma companies and advocacy groups find the perfect partner.

Michael Durand is managing director for healthcare strategy and planning for Ogilvy Public Relations Worldwide. He can be reached at michæ