Patient Advocacy Groups are Banding Together – Why That’s a Good Thing
Lindsey Wahlstrom-Edwards is Director of Partnerships and Distribution at Antidote. She works with health nonprofits and patient advocates to connect their communities with research.
Last week I had the pleasure of joining the Coalition of Headache and Migraine Patients (CHAMP) members for one of their two annual meetings in Phoenix, Arizona. This network of patients and advocacy groups came together to ensure the voice of headache and migraine patients is heard clearly in policy and care decisions.
The meeting discussion centered around important issues like access to treatments, including the development of new options; reducing stigma against individuals who are perceived to be reporting pain to access opioids; and understanding just how many individuals are impacted by headache and migraine. The amount of work the coalition members accomplished, much of which will be announced soon, was impressive.
The meeting brought to mind other coalitions of patient advocacy groups we work with who have leveraged the power of collaboration for the benefit of the individuals they serve. For example, last year, Lupus Foundation of America, Lupus Research Alliance, and Lupus and Allied Diseases Association worked together with the FDA to complete a patient-focused drug discovery process, the results of which were released earlier this year.
Similarly, the Melanoma Action Coalition members work together to drive melanoma awareness, education, prevention, and research forward, all while maintaining the integrity of each individual member organization’s work.
One of the benefits of this trend toward centralization in the advocacy group space will drive progress faster. By aligning key messages and amplifying their reach through shared engagement and advocacy efforts, these coalitions ensure relevant decision makers – from patients, to legislators – get the information they need, at the right time, and through the appropriate channels.
Rather than competing for resources, the groups are collaborating in key areas while maintaining sufficient autonomy that the individual work each coalition member remains important. It’s a delicate balance, but these successful examples seem to have taken an approach that will not only improve the lives of patients, but also will allow them to achieve their own individual missions more effectively. I’m excited to see what they accomplish.