What is ALS
ALS, or amyotrophic lateral sclerosis, is a progressive and fatal neurodegenerative disease that robs a person of their ability to move, speak, swallow and breathe.
The lifetime risk of being diagnosed with ALS for adults is 1:400. Women and men of all ages are diagnosed with ALS; 10% of ALS is considered to be hereditary. For unknown reasons, veterans are at twice the risk of being diagnosed with ALS than civilians. Life expectancy for a person with ALS averages about two to five years from the time of diagnosis.
Today there is little known about the causes of ALS and there is no effective therapeutic treatment or cure. Significant social and economic costs associated with the medical care, equipment, and caregiving required to support those living with ALS takes a tremendous toll on the entire family.
Evidence shows that robust, proactive, expert multidisciplinary community-based care helps people live longer and better than the two FDA approved drugs for ALS.
ALS in Hawaii
People with ALS and their families who live in Hawaii were, until recently, faced with very limited local care and support services to address their complex needs. ALS Ohana of Hawaii, a volunteer-driven effort, was established in 2014. ALS Ohana of Hawaii partnered with The ALS Association Golden West Chapter in early 2014 to help address the needs of the ALS community throughout the state. At that time, it was estimated that close to 3,000 people in Hawaii were at risk for being diagnosed with ALS.
Today, people living with ALS throughout Hawaii have access to a wraparound model of care designed to address the medical, social, emotional and financial challenges of ALS. The approach emphasizes coordination among expert caregivers, social workers, and health care providers in clinical, community and home-based settings. That continuum of care also includes opportunities to advance ALS research and public policy initiatives that benefit the entire community.
Specifically, Hawaii’s ALS ohana has access to the following, all services are provided at no charge to people with ALS and their families:
· professional care management
· multidisciplinary clinic care
· support groups
· equipment loan program
· general educational and professional training opportunities
· community outreach events
· organized volunteer in home support and meals
· grants for support including respite care, transportation, medical care, equipment, etc.
Since launching programs in 2014, there has been tremendous growth in the services available to the ALS community. Last year, the Chapter served 75 people with ALS and their families and documented approximately 330 home visits and 1450 engagements with people living with ALS. The Chapter conducted 35 support groups that took place on Hilo, Kauai, Kona, Maui, and Oahu; those support groups were attended by approximately 200 people.
Our continued goals in Hawaii include:
· Increasing the number of people with ALS served
· Improving and expanding care and support for the ALS community, including care management, support groups, telemedicine, etc.
· Expanding access to durable medical equipment and augmentative communication devices
· Raising awareness of services for people living with ALS
· Exploring opportunities for additional multidisciplinary and satellite clinic programs
· Developing a robust state public policy program
· Engaging Hawaii’s research community in ALS research