The second panel for the One Voice Summit, moderated by David Zook, focused on Quality of Care and Quality of Life issues. Kathryn Wagner, Mark Swanson, Katie Bushby, and Craig McDonald were panelist joined by a committee with Jerry Mendel, Katherine Mathews and Jen Garofalo.
The panel took turns addressing aspects of the MDCC Action Plan addressing programs such as the MD STARnet, comparing and contrasting the Plan to efforts undertaken with TREAT-NMD which is a European Union neuromuscular collaboration, an assessment of the Plan and comments on how elements of the plan can be used along with Natural History information to improve the understanding of characteristics of DMD. Highlights from the discussion include the fact that certain short term recommendations such as developing strategies to improve physician effectiveness were not yet achieved and that using the MD STARnet along with natural history to develop outcome measures, update the CDC Care Considerations and review secondary conditions such as contractures and obesity in DMD. Additionally it was stated that responsibility to affect change would come from legislative efforts including increased funding for relevant programs, medical centers to take responsibility for improving care, families who will need to prepare their sons from adult life and for the patients to push for change and also take responsibility to prepare for further education and employment and socialization.
The Committee asked additional questions of the panelists urging them to expand on their earlier comments, provide direction on how families who coordinate their son’s care can establish a network of specialists who can assume this role, where the funding will come for some of the interventions mentioned and how the CDC Care Considerations can be updated and expanded to enhance the quality of life for both children and adults living with DMD.
There was a brief question and answer period which focused on topics such as who should train physical therapists to identify DMD, how to improve diagnosis in military clinics, looking at possible “holistic” interventions, providing support for siblings and surviving affected boys upon the loss of brother who has DMD and looking at long term effects of steroids in other indications as well as looking at plans for preparing for adult living for those affected by a progressive degenerative disorder.
Joel Wood from the Foundation to Eradicate Duchenne was the lunchtime Keynote speaker who talked about the history of his involvement with PPMD due to the diagnosis of his son James in 2000. Joel entertained the audience with stories about how he roped Senator Wellstone and Senator Wicker to become the early champions for the DMD community and how they led the effort for the passage of the MD CARE Act and later how to have an effective meeting as a parent advocate.
Stay tuned for more.