The role of patient advocacy programs is a broad one — from supporter, to sponsor, to campaigner, to spokesperson and beyond. Indeed, patient advocacy means different things to different stakeholders, says Keri McDonough, senior team leader, Biosector 2, a Syneos Health company.

When patient advocacy groups talk about advocacy they typically mean systems-based activism at the state or federal level, most often related to access or research funding, she says. When pharmaceutical companies talk about patient advocacy, they are typically referring to the full spectrum of how a company interacts with nonprofit patient communities, activities that range from co-created educational efforts and community events to patient-focused giving and elements of government affairs. For an individual patient, advocacy starts much closer to home. It’s about self-advocacy first.

Patient advocacy programs at its best focuses on a patient’s entire life, the reality of living his or her best life while battling illness, says Jack Barrette, CEO of WEGO Health. Advocacy helps with the messy, organic part of a patient’s life, which is at least 95%, that’s not spent in active treatment.

According to Bari Talente, executive VP, advocacy, for the National Multiple Sclerosis Society (NMSS), patient advocacy can be both personal and community-based.

Personal-based patient advocacy programs is when individuals advocate for what they personally need to live their best lives, while community-based patient advocacy is about making sure the voices of people with a particular illness or need are heard in larger scale decisions — by a healthcare stakeholder or an agency of a legislative body, Ms. Talente says.

At a personal level Patrick Stone, VP of government relations and advocacy for the National Psoriasis Foundation (NPF), says advocacy is about patients sharing experiences, telling their unique story, and speaking out about the things — including policy or legislative change — that will have a meaningful impact on their health.

Patient advocacy organizations also encourage patients to make their voices heard by educating their elected officials about the impact of their condition on individuals and their families, says Stevan Gibson, president of the Lupus Foundation of America.

We want to make lupus personal for members of Congress, make our cause their cause, and make them understand that this is a potentially fatal disease, Mr. Gibson says. In fact, we founded the Congressional Lupus Caucus, which is a group of more than 50 members of Congress who are dedicated to the fight against lupus.

Collective Help

Crucially, patient advocacy programs groups can help individuals to navigate a confusing system of treatments and services and are able to promote the development of new and better treatments and interventions, says Marc Boutin, CEO of the National Health Council.

By addressing systemic issues such as access to care, treatment innovations, and healthcare policies, the voice of the patient in policy and treatment development is raised, Mr. Boutin says.

In addition, healthcare costs shifting more to the individual has led to the rise of consumer patients, prompting those involved in healthcare to respond to the patient’s needs, he adds.

Advocacy organizations can help patients and their families understand the importance of self-advocacy. With rare diseases, where the diagnostic odyssey can take five to seven years, organizations such as NORD can help with everything from the practical — preparing for medical appointments, fighting for health insurance access to the specialists needed, appealing insurance claims, advocating for a specialist team under emergency situations — to helping to raise awareness, education, and support networks.

The challenge of learning where to start and how to advocate can be daunting to any patient, but this is particularly true for the rare disease community where there are very few medical experts familiar with their disease and little opportunity to connect with others facing a similar diagnosis, says Debbie Drell, NORD’s director of membership.

For its part, the Lupus Foundation has a team of educators to help patients navigate their disease and provides education tailored to specific audiences in English, Spanish, and Mandarin using various formats including video, audio, slideshows, downloadable materials, etc.

The Patient as Advocate

Advocacy starts close to home. In fact, many advocacy organizations are founded by parents or individuals impacted by a condition, and are responsive to what the patient wants, Mr. Boutin says.

An example of this would be Parent Project Muscular Dystrophy, which advocates on behalf of children with Duchenne muscular dystrophy, he says. The group was founded in 1994 by its current president and CEO Pat Furlong and a group of parents and grandparents who were frustrated by the lack of investment in Duchenne research. PPMD was one of the first patient advocacy group to gather systematic data that is actionable for regulators and companies seeking to develop treatments.

Groups founded by an individual or small group are now evolving into larger organizations that can raise a lot of money for research and for patient care and help with patient care that sometimes may not be reimbursed, Mr. Maslowski says.

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