The Important Role of Advocacy in Keeping Care Before Cost

Connecting with patients and groups representing their therapeutic and psychosocial needs has long been essential for biopharma innovators. After all, who yearns for better treatments more than patients and their caregivers and their medical team? With better disease detection tools and medical advances that improve and extend life, the urgency and support for early diagnosis and specific product choice has grown. But with emphasis more on cost, advances in patient-physician dialogue are challenged—and advocacy groups play a more critical role than ever in keeping the focus on care.

Where outcome data remain uncertain, payers chart new ways to influence the conversation through varied control mechanisms—whether “pathways,” “step therapy” or “prior authorization.” In theory, these checks and balances create good, thoughtful approaches to balance care and cost.

Cost of Payer Delays

But in debilitating illnesses—cancer, heart disease, hepatitis and many others—delay to treatment may accelerate disease progression. Now physicians’ prescriptions—the result of important patient-provider dialogue—are confronted by payer “rejection” at the pharmacy. Biopharma innovation and patient empowerment are rapidly devalued.

One of the more discouraging examples of this fragmented health system phenomenon are the new oral anti-virals that tackle hepatitis C—taken in pill form, not as injections—that clear the debilitating virus from the liver in more than 95% of people in 12 weeks. However, cost challenges greater use, as payers require multiple administrative and pricing hurdles before patients can receive the drug. Outpatient and in-patient costs often come from different budget pots. What about the cost of injectables and tolerating current treatment side effects? Older therapies lead to hospitalizations and lost productivity. Here, solid data for the newer therapy is not lacking. The eyebrow-raising limitation is a narrow, short-term definition of “cost.”

Advocacy and Access

Advocacy organizations have a renewed—not new—role to play in ensuring patient access. Third parties are credible voices in confronting health challenges. Transcending personal anxiety about health concerns and “speaking with your doctor” remain step one to getting treatment. However, step two, gaining access to the recommended treatment, is the objective.

Historically, pharma companies viewed patient advocacy groups as key partners in “raising disease awareness”—from women and heart disease to skin cancer risk and overcoming depression—and saw them as transactional connections. That’s changing. Long ago, groups such as NABCO drove the conversation around breast cancer diagnosis, drug discovery and treatment. NORD brought together countless rare disease groups under a common umbrella and spearheaded legislation and investment. Industry was a partner at their table.

Today, strong, independent patient groups are powerful voices for patient needs. Large national third-party groups have DC staff and experts looking at outcomes data and cost—placing patient care at the forefront. The mid-sized and smaller patient groups do incredible work, but they don’t have the bandwidth to study health economics and state-by-state product access challenges. Pharma companies must review their relationship priorities with advocacy groups to share more background about access importance and brainstorm around what benefits patient care.

The most successful endeavors are no longer transactional. Sharing our common challenges and hearing more about the patients is essential to partnership. The health system remains fragmented. The path to getting on track: Focus on patients. Advocacy groups help us all keep our eyes and activities on what matters most.


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