The New Partnership Paradigm: What Patient Advocates Seek From Pharmaceutical Partners

Dramatic changes in U.S. healthcare over the last few years have forced a rethinking of the partnerships pharmaceutical companies form with groups representing patients and families. Syneos Health™ interviewed dozens of patient advocacy organizations to understand how they view the changes and what they seek from their pharma partners.

Partnerships between patient advocacy groups and pharma companies play a unique role in assuring that new medications arriving on the market meet the needs of people with devastating diseases. To both sides, these relationships bring value. For advocacy groups, partnerships provide both capital and information about treatments in the pipeline that may have life-or-death implications. Drug companies gain a window onto the patients’ desires, their interactions with doctors and insurers, their willingness to participate in clinical trials and whether they will go to bat for a new drug when it comes to reimbursement and formulary placement.

Despite these mutual advantages, in the five years since the Affordable Care Act (ACA) was signed into law, partnerships have come under pressure and, in some cases, veered toward disappointment or discord. To cite just one flashpoint, rising co-insurance in many health plans under the ACA, as well as narrowing formularies and physician networks, have exposed patients with rare cancers and other orphan diseases to more burdensome costs. Pharmaceutical partners aren’t always able or willing to alleviate their pain. When drug companies fail to respond to cost concerns, patient groups feel abandoned by their pharma partners.

This spring, Syneos Health Communications conducted in-depth interviews with 43 patient advocacy organizations based or operating in the United States. The objective for Syneos Health Communications, which has strong ties to patients and their support organizations, was to discover how these industry/advocacy relationships are weathering the stresses caused by a fast-transforming healthcare landscape, and where the patient groups sense a need for change. Most of the organizations we interviewed were focused on oncology, rare diseases, mental health and Parkinson’s disease. We asked them to describe actions they would like their industry partners to take, and how they envision themselves operating more effectively in an increasingly competitive environment. Their responses to these questions have enormous significance for the pharma sector, for insurers and other healthcare stakeholders, and for the trajectory of U.S. healthcare evolution and innovation.

Narrow networks may end up limiting patient opportunities to take advantage of the most advanced therapies, and physicians can feel compelled to put patients on treatment pathways under pressure from insurance companies.

For years, pharma companies have strived to present themselves as “patient- centric.” But some advocacy groups worry the drug industry’s goals may trump activities that would bring more concrete benefits to the patient groups. Leaders say industry often doesn’t know enough about the lives and illness narratives of health consumers and their families to claim the patient-centric mantle. “If pharma is going to enter into a disease space, they need to be open to hearing directly from patients,” says Christine S. Brown, executive director of the National PKU Alliance — a group organized around a rare, inherited metabolic disorder called phenylketonuria. “They need to hear [patients’] stories and connect with them.”

Emphasizing the importance of patient- centered needs and concerns, Amy Copeland, director of medical outreach at Lung Cancer Alliance, America’s oldest nonprofit organization for the disease, notes: “Your clients are the people you serve, not industry. There are companies out there who will push you to not be authentic and to be more loyal to companies than patients,” she says. “You have to discuss as an organization what your boundaries are and stay true to them.” There’s a risk, Copeland adds, that beliefs or values could be compromised in a partnership. “We’re very loyal to our patient population. We won’t agree to things we don’t feel good about. This approach helps with partners in respecting us and in maintaining the trust of the people we serve.”

Transparency goes hand in hand with authenticity. In pharma, the word calls to mind the Sunshine Act, regulations governing transactions among pharmaceutical reps and physicians finalized in February 2013. But in industry/patient alliances, “transparency” means timely and detailed updates — whether the news is good or bad — on products in the pipeline. And it means clarity around what pharmaceutical companies expect from advocacy groups in return for financial support. “Industry needs to involve patients more in the beginning conversations with researchers — in all aspects of clinical trials, not just the end and the testing,” says one oncology organization focused on prevention and early detection efforts.

Greater clarity about the company’s commitment to the advocacy organization is the essence of this request. “A year or two before their medication heads to generic status, the companies too often pull back from their support of the community,” says Elizabeth “Eli” Pollard, executive director of the World Parkinson Coalition. In doing so, companies haven’t fulfilled their commitment to treat advocacy groups as true partners. “[They] don’t have a sense of their corporate social responsibility. As soon as their profits are about to wane, they jump ship from supporting the community that helped make them loads of money. If they really support the community, they would make an effort to stay in the space somehow, not have their involvement only tied to profits,” Pollard says.

Advocacy groups, for the most part, recognize that some of the obstacles they face are of their own making. Several advocacy leaders said duplicative efforts by multiple patient groups in the same disease area is a liability. “People forget that we all really have the same mission — to eliminate the challenges of rare disease. What differentiates each organization is their approach to pursuing that mission,” says Nicole Boice, founder and CEO of Global Genes, a global rare disease advocacy organization.

The rare disease sector comprises some 7,000 distinct illnesses. Together they affect as many as 30 million Americans, though each disease, by definition, strikes fewer than 200,000. “The approach we recommend is to look at each group’s core competencies, identify overlap, and determine where there are gaps. Then try to eliminate the overlap and figure out how to move forward addressing the gaps, and work to do this collaboratively.” says Boice. “The community needs to remember our common mission, and try to to play in the sandbox together. There is certainly enough work that needs to be done.”

Marcie Reeder, executive director of the National Comprehensive Cancer Network Foundation, says that while most organizations recognize the need for collaboration, some may not. “Traditionally, collaborative efforts were not a strategy employed to strengthen non-profit organizations and the potential benefits realized through strategic collaboration were not embraced,” Reeder explains. “Leadership worried that they may lose charitable support to other like organizations, or that brands would be confused with perceived competitors focused on a similar mission.” Yet, this is an “old school” thought process, Reeder contends. “Slowly this is changing for the better.”

Some advocacy leaders say industry could be the change agent, by incentivizing collaboration through the use of tools such as RFP and grant-giving processes. Janine Guglielmino, senior director of programs and partnerships at Living Beyond Breast Cancer, says drug companies could “give preference on funding decisions to organizations that collaborate.” Indeed, companies could “encourage organizations to do it by awarding higher scores to groups that cooperate.” Guglielmino wouldn’t mind receiving resources from industry that could help address the thorniest parts of collaboration among nonprofit organizations, she says, including guidelines on co-development of content, strategies for decisions on the voice used in the material and whether the organizations exchange money. “There’s a greater chance of success if such issues are discussed up front.”

Syneos Health thanks all of the organizations that gave freely of their time and their insights that contributed to this report. Please note: the opinions and conclusions in this report do not necessarily reflect the opinions of each group interviewed.

In some interviews, advocacy leaders warned pharma partners against “mission creep” as these alliances evolve in response to rapid change in the healthcare environment. “You’re in the business to provide a product. Provide a really good one,” says the Hemophilia Foundation’s Haugstad, addressing her point to the pharma sector at large. Social media give drug companies new channels of interaction with patients. But this frontier, still a regulatory gray area despite recent rulemaking, may create the illusion that drug companies can provide full support systems for a patient community. Proceed with caution, says Haugstad. “Allow the patient advocacy community to provide that, [and] instead, provide really good information about the drugs.”

Wendy Selig, the former CEO of the Melanoma Research Alliance, strikes an optimistic note. She told us some individuals in the pharma industry “get” the changing face of corporate/advocacy alliances. “They’re very forward thinking and totally understand the shift going on.” Still, she added, “while we’re making progress within companies to change the culture and make this new partnership model work, there are some companies behind the curve.”

Patient advocates say they understand that they can’t simply wait for pharmaceutical companies to catch up. Many of the groups interviewed by Syneos Health agree this is a critical moment for decisive action.

“Non-profit groups can’t just sit back and wait for industry,” Selig says. “We have a job to do to present our value proposition and what it will take to be good partners.”