A Journey Begins with the First Step

Dr. Daikh

As clinicians, researchers, and healthcare providers, we know the importance of communicating with our patients. Communication plays a vital role in our ability to provide better care and develop new treatments, but it also helps us understand the impact of rheumatic disease on those individuals and families affected by it.

The ACR Research and Education Foundation (REF) launched the new Journey to Cure campaign last year with the twin goals of advancing patient care and accelerating discoveries. We did so with the understanding that these ambitious goals cannot be accomplished without the input and support of patients and families affected by rheumatic disease.

To that end, at the same time Journey to Cure was getting underway, we also launched the Action Alliance network. This program calls on rheumatologists, investigators, and health professionals to join us in asking patients and families to be a part of the conversation.

The Action Alliance consists of two programs working together: our From the Field Speakers Bureau and Patients and Families for Progress. Members of From the Field present a series of nationwide informational sessions called “Coffee & Conversations.” These are events intended to garner focused conversations around the critical need to continue investigator-driven research and to mobilize interested individuals to support our mission in the future.

A rheumatologist, an investigator, and a health professional will speak at the “Coffee & Conversations” events. These From the Field speakers will share with patients and families their perspectives regarding the latest developments in research, treatment, and care.

At the same time, members of Patients and Families for Progress will provide important feedback and continued support of our efforts.

A perfect example of this kind of collaboration can be found in the story of Louise Pinter, a member of the REF Patients and Families for Progress program. Pinter had eight joint-replacement surgeries due to complications from rheumatoid arthritis (RA). Her family doctor referred her to a rheumatologist, John Goldman, MD, and he was able to find a treatment that worked for her. Since 2006, Pinter has had relief from her symptoms. “I will knock on wood and say I haven’t had to have anything since,” she says.

During an appointment in early 2007, Dr. Goldman invited Pinter to get involved with the REF. “He said, ‘You appear to be doing better and want things to do, and so I think it would be a good idea for you to get involved,’ ” Pinter says.

As Pinter learned more about the REF, she realized that it was a good match. She mentions “innovative research” and “getting more doctors to be rheumatologists” as REF goals that she wants to support.

“The REF is the only one concerned about setting the goals and guidelines to find a cure for rheumatoid arthritis,” says Pinter. “I look to participate with the REF to make the general public aware of what is being done and what they can do to help. I think everybody ought to know about RA and the potential of its being solved.”

In addition, she says that giving back has been an important part of her recovery process. Participating in the program, Pinter says, “gives me a reason to get up and know I can feel good.”

The REF’s disease-targeted research initiatives have accelerated the pace of discovery by funding promising new lines of scientific investigation. This innovative research can provide hope and inspiration to the millions of patients with rheumatic disease who need our support and care.

The continued success of Journey to Cure is dependent on the collaborative efforts of everyone impacted by rheumatic disease—from those who provide care and develop research to those whose lives are affected by chronic illness every day.

I invite you to take the first step and join us on our journey by participating in our From the Field Speakers Bureau or by asking interested individuals to enroll in our Patients and Families for Progress network. Together, we can make huge strides in providing better treatment and care while developing research to find cures.

Dr. Daikh is president of the ACR REF; associate professor of medicine and director of the rheumatology fellowship training program at the University of California, San Francisco; and chief of the arthritis section at the San Francisco VA Medical Center.