by Weyman T. Johnson, Jr., chair, National Board of Directors
An invitation to join a national discussion
In January the new federal administration will begin asking questions about how to address our national health-care crisis. The impact of under-insurance, uninsurability, lack of coverage for maintenance or off-label therapies, disparities in quality and availability of care - especially of long-term services - and the consequences of inconsistent and expensive medical record-keeping are all harmful to those in the MS world.
Last May, the National Board unanimously adopted a set of seven health-care reform principles to guide our active participation in the national discussion. Find the complete text at nationalMSsociety.org/healthcareprinciples (PDF), or by calling 1-800-344-4867. I urge you to get it, read it, talk about it with family, friends and associates, and to send copies to your elected officials.
To learn more about the Society’s health-care reform activities and to join in, call your chapter or go to nationalMSsociety.org/advocacy.
We believe meaningful health-care reform must involve these seven principles:
- Accessible health-care coverage
- Affordable health-care services and coverage
- Standards for coverage of specific treatments
- Elimination of disparity in health care
- Comprehensive high-quality health care available to all
- Increased value of health care
- Access to high-quality long-term supports and services
Under the leadership of noted neurologist Victor Rivera, MD, the Society’s National Hispanic/Latino Advisory Council has established bold goals for the next three years. They include:
- Promoting more participation by Hispanics and Latinos in clinical trials.
- Promoting studies on the experiences of Latinos and Hispanics with MS.
- Developing more resources to educate health-care professionals about this community.
- Increasing the number of Hispanic/Latino volunteers on chapter boards or as participants in Society fund raising, programs, and events.
- Including Hispanic/Latino outreach dimensions in the proposed federal study of MS prevalence by the CDC.
Currently, Dr. Ron Duran, a council member and a professor at the Alliant International University, is doing field work in collaboration with the Society to identify the unique challenges faced by Hispanic/Latino families living with MS. And Dr. Debbie Victor, an occupational therapist and recent graduate of the University of Illinois at Chicago, developed a set of action steps for outreach to Hispanics and Latinos to be distributed to all chapters in the new year.
Left, Dawn Russo, Program Manager, Home LINKS. Right Jamie Berg, Home LINKS Care Manager of the Year.
Jamie Berg was recognized as the Home LINKS Care Manager of the Year at the Chapter’s 5th Annual Home LINKS Education Day, held November 17 in Waltham. Ms. Berg works at Neuro-Rehab Management and has provided care management for four individuals with MS this past year.
For the second year, the care managers were joined by nurses and social workers from the chapter affiliated MS clinical centers. Dr. Barry Feldman, Director of Psychiatry Services in Public Safety for the UMass Memorial Medical Center in Worcester, presented a special workshop titled Suicide Intervention & Prevention: Current Standards of Care. During the day, attendees also learned about the extensive catalog of Chapter Programs, reviewed amendments to Home LINKS procedures, and had time to network with the clinic staff. Thank you to all of our care managers for providing superb service to 163 individuals this year.