Achieving Better Advocacy Group Relationships a Critical Piece of Resurgent Disease State Awareness Drive in Pharmaceutical Industry


When it comes to informing physicians and patients about new therapies, disease awareness programs have experienced a rebirth in the pharmaceutical industry.

For decades, disease awareness campaigns were a part of the playbook for educating physicians and patients about new products. But, awareness programs receded in the long shadow cast by Direct-to-Consumer (DTC) marketing after the FDA, in 1985, explicitly allowed TV drug advertising.

Television DTC ads still consume most of the marketing budget of pharmaceutical companies – more than half of the $5.2 billion the industry spent on prescription drug advertising in 2015 went to TV ads, according to Nielsen. But, the industry in recent years has re-invested in disease awareness programs – in part because launch leaders recognize the value of a well-executed disease awareness program and in part because of more stringent regulations and increased FDA scrutiny.

As a part of a study of current trends in disease awareness, research and consulting leader Best Practices, LLC recently surveyed leaders from 16 pharma companies with deep experience in disease state awareness programs. The research, which included executive interviews, produced our new report, entitled Disease Awareness Program Excellence: Structure, Activities & Resources Needed for Effective Pipeline Support.

The study found that 79 percent of participants felt it was highly important to create alliances with patient advocacy groups as part of a disease awareness program.

For pharmaceutical organizations bringing a product into a therapeutic area that’s new to the company, it is especially critical to establish relationships with advocacy groups. There is no better way to introduce yourself to a community of patients who are unfamiliar with your organization than through a group that supports and informs those patients.

Patient groups are seen as trusted sources of information – much more so than pharma drug manufacturers – so they can not only advise on disease awareness issues but also share information with patients.

“Advocacy groups are important because they tend to be pretty sensitized to new therapies that are going to open the door to better treatment for patients,” said a senior director of market research who participated in our study. “You want them to be aware of and know that there are other options coming and they potentially open some doors once the product launches if you have a good relationship with them.”

Most companies work with patient advocacy groups on disease awareness activities during the year prior to launch and launch year, especially on costly activities such as building generic websites for advocacy groups to help inform patients about their disease state. It is worth noting, however, that a quarter of participants begin creating alliances and partnering with advocacy groups at the end of Phase II – years before a product launch.


Advocacy Groups Disease Activity timings

Timing of Disease Activities with Patient Advocacy Groups


“When first establishing a relationship with a patient group, it’s important to be transparent and to not over-promise and under-deliver,” one study participant said.

“It’s also important to meet in person, especially when a pharma company is first attempting to build a relationship with an advocacy group,” another participant said.

“I think [to build relationships] it needs to be in person, I really do. I think they need to see you are committed,” said a senior vice president of strategy. “I’m sure everybody says that, but if I were them, having been an advocate, I’m leery of drug companies that just call me and talk and then you never hear from them. They don’t come back with ideas and don’t share their patient research with you.”

“So when building out a strategy for a disease awareness program for a new product, don’t under-emphasize advocacy groups – and get an early start on building those bridges!”

To learn more about what leading pharmaceutical companies are doing to raise disease state awareness and build better bridges with critical advocacy group, go to:


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