Arthritis Foundation's 'Live Yes!' leverages patient input to enhance arthritis trials, potential therapies
The Arthritis Foundation is more than 70 years old, but its newest theme — Live Yes! — is in its infancy. Historically, the organization has zeroed in on key pillars, including access to care, advocacy in government and attention to the often-overlooked juvenile arthritis. Yet, the Foundation also understood the importance of interpersonal connections and support networks to patient well-being: An idea that laid the foundation for an online community that simultaneously educates and empowers patients, while cultivating their input to develop solutions for issues common to the arthritis population.
In an interview with Healio Rheumatology, Cindy McDaniel, senior vice president of Consumer Health and Impact at the Arthritis Foundation, stressed that the Foundation remains committed in their efforts to champion advances in arthritis research, a commitment that the Live Yes! initiative could also bolster with insights from the patient population.
The Arthritis Foundation aimed to capitalize on the utility of social media as a tool for physicians and patients to connect with one another. The Live Yes! initiative focuses on communication and community among patients with arthritis and offers them the ability to share not just information about clinics and therapies, but personal stories of their disease.
“This theme evolved because patients with arthritis, for so long, have traditionally had to say ‘no’ to so many things because of their disease, and the way it made them feel every day,” she said. “We wanted to find a way for them not just to start saying ‘yes,’ but to actually live yes.”
Arthritis impacts more than 54 million adults and 300,000 children nationwide. McDaniel believes that the Arthritis Foundation, with its long history and broad scope, is one of the few organizations equipped to tackle the big challenges facing this patient population, and the clinicians who treat them. “Our nationwide footprint is what might differentiate us from other groups,” she said. “We have 80 points of service across the country.”
Each year, that size and scope pays off in quantifiable results. The Foundation has logged more 100 legislative victories since 2014, includes 130,000 advocates and 1,200 ambassadors, and counts 146 members as part of the Congressional Arthritis Caucus. What the organization wanted to do, then, is personalize these numbers.
The combination of hard outcomes and patient-centered care is seen most clearly in their advocacy agenda. The elimination of pre-existing conditions is an ongoing effort, as is the elimination of caps on insurance spending. Provisions to allow children to remain on their parents’ health insurance until age 26 years are being pursued, along with those that ensure continuous coverage in any health reform replacement legislation. And, of course, efforts are always underway to keep the cost of drugs down.
Yet these accomplishments were not enough, according to McDaniel. “Community-based outreach connections was an area that we are increasingly trying to emphasize,” she said. “We want our patients to be more empowered, to become more likely to believe that they can do something about their arthritis.”
Live Yes! blends data on treatment centers and therapies with a platform to make personal connections. “We felt that our approach needed to help patients come to terms with the powerful emotional issues that come with arthritis,” she said. “It is for these reasons that we rebranded and adopted the Live Yes! theme. The Foundation has always been about research and patient education, and we have always been about advocacy — we have just expanded on all of those components in recent years.”
McDaniel stressed that Live Yes! is largely led by volunteers from the patient community. “Our pillars will remain what they have always been, and research has always been important,” she said. “But there is a really powerful community developing.”
To meet the research goals, the Arthritis Foundation funds both the Arthritis Internet Registry (AIR) and the Childhood Arthritis and Rheumatology Research Alliance (CARRA), which are themselves pillars of the arthritis community.
“We have a long history of being a respected peer-reviewed research funder with a robust method of soliciting investigator-initiated study proposals,” McDaniel said, noting that the group was foundational in the evolution of biologic therapies. “How Live Yes! fits into the paradigm is that we have a much more substantial understanding of how patient-reported outcomes can and should impact how research is done.”
Live Yes! allows investigators to listen to patient needs, which not only translates into clinical trials and novel therapies, but into guideline development for those therapies, as well.
In addition to the Live Yes! theme, the Arthritis Foundation website offers viewers a wealth of information and resources, from advances in therapy for OA to juvenile arthritis. New patients may find out how to become an advocate and join the Foundation, while existing advocates can gather tools to broaden their impact on the disease and the patient community. The Ambassador Program allows patients and advocates to move into the policy sphere and potentially create legislation, results which viewers may also read about.
Another way that an organization like the Arthritis Foundation can impact both policy and the patient experience is to offer position statements. The leadership at the Foundation has weighed in on step therapy, prior authorization, out-of-pocket costs, formulary changes, biosimilars, transparency in both the insurance market and broader health systems, network adequacy and market stabilization.
“We have looked at some of the models used in other disease states in terms of helping rheumatologists and patients use this learning system approach,” McDaniel said. She acknowledged that the health care system is challenging to navigate even for the most experienced administrators. “All of these are ways to not only help doctors and patients work together toward improved outcomes, but also to monitor therapies and plans in real-time.”
One other key component of the organization is the recruitment of the next generation of rheumatologists in an ever-dwindling field, according to McDaniel.
“The manpower shortage is a big issue that is on our minds,” she said. “We primarily exist in all of the major markets around the country, but it is important to understand that shortage of rheumatologists is even felt in these major centers.”
Patients often have to wait 6 months or more to get an appointment in big centers, according to McDaniel. “Thinking about smaller markets and rural areas, this is where the volunteer-driven model and online communication component of Live Yes! can be so useful,” she said. “We are trying to build those areas now, with volunteers holding community forums. This can draw patients in, but we are also hoping to draw physicians to these areas to speak and meet patients.”
In speaking about the core pillar of juvenile arthritis, McDaniel stressed that this is a compelling need. “This is where the manpower shortage is so heartbreaking,” she said. “There are some states without a single rheumatologist, let alone one who treats juvenile patients. In other cases, patients — and, of course, their parents and families — sometimes have to drive 6 to 8 hours just to see a doctor.”
The Foundation is open to any solution to these problems. “One thing we think about is better use of registered nurses, physician assistants and other ancillary health care workers to administer care to these patients,” she said. “We are trying to understand patient attitudes about the use of this personnel.”
Telemedicine is another potential approach to dealing with the shortage of pediatric rheumatologists. But the mainstay strategy remains simple: “We fund a fellowship program as a way to attract bright young medical students to choose rheumatology and stay in rheumatology,” McDaniel said. “This is becoming a crisis that we need to address.”
“If there is anything else I would like to add, it is that we are trying to foster patient voices at the right place and at the right time,” McDaniel said. She noted that the Arthritis Foundation has externally led two FDA patient development meetings. “One was for osteoarthritis, and one was for juvenile arthritis.”
The need is clear: new drugs. “There are just not enough approved, effective therapies for the 31 million patients with OA,” she said. “We are working with the FDA to speed up the pathway to approval for drugs that show effectiveness, and we have gotten great feedback from both the osteoarthritis and juvenile arthritis communities. We are proud of these accomplishments, as we are with so many of the others from our 70-year history.” —by Rob Volansky
For more information:
Cindy McDaniel can be reached at 1355 Peachtree St NE, Suite 600, Atlanta, GA 30309; email: firstname.lastname@example.org.
Disclosures: McDaniel reports no relevant financial disclosures.