ALS Association invests $3M to bring access to care closer to home
New funding aims to help underserved, geographically isolated communities
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- The ALS Association is awarding $3 million in grants to expand access to specialized care in the U.S.
- The new funding targets underserved, geographically isolated communities lacking multidisciplinary care.
- New clinics will be established in New Jersey and Kansas, with expansions in Hawaii and Alaska, among other states.
The ALS Association has awarded $3 million to help expand access to specialized amyotrophic lateral sclerosis (ALS) care in underserved and geographically isolated communities across the U.S.
The funding comes from the organization’s Hoffman ALS Clinic Development and Capacity Awards programs, established through a historic $58 million donation from the late philanthropist Hugh Hoffman, whose father died from ALS.
These two grant programs are intended to support the creation of new certified ALS clinics or the expansion of services from existing clinics that facilitate access to multidisciplinary ALS care — a team-based model shown to extend survival and improve patients’ quality of life, according to the nonprofit.
“We know that multidisciplinary care extends survival and improves quality of life — that’s not aspirational, that’s proven,” Jen Hjelle, chief community engagement officer at the ALS Association, said in a press release from the nonprofit detailing the awards.
“Right now, there are far too many people around the country who cannot access multidisciplinary care because there is not a clinic near them or it is not financially feasible for them. These grants are how we close that gap — one clinic, one community at a time, until everyone living with ALS has access to the care they deserve,” Hjelle said.
For more than two decades, the ALS Association has been building a nationwide network of ALS Certified Treatment Centers of Excellence and Recognized Treatment Centers that provide high-quality, evidence-based multidisciplinary care to people with ALS. Clinics can become certified when they meet high standards for care.
Nonprofit aims to expand access to care from Alaska to Texas
The Hoffman ALS Clinic Awards span two categories. Clinic Capacity Awards provide as much as $360,000 over three years to help existing clinics expand access to care by adding clinic days, offering telehealth services, and reducing financial barriers. Clinic Development Awards give recipients a maximum of $900,000 over three years to establish new certified ALS clinics, or as much as $450,000 to help existing clinics achieve certification status.
The ALS Association noted that this year’s awards “target rural, underserved and geographically isolated Americans living with ALS.”
Among the capacity award recipients is the University of California, San Francisco (UCSF), which received funding for two projects to expand ALS care in Hawaii and Alaska.
The Hawaii initiative will combine UCSF-led virtual multidisciplinary clinics with partnerships involving local health systems, including The Queen’s Medical Center and Hawaii Pacific Neuroscience. The goal is to reduce challenges caused by travel between islands, the limited number of trained neurologists, and delays in diagnosis and insurance approval.
In Alaska, where there are no certified ALS clinics, UCSF plans to establish a multidisciplinary satellite clinic that combines annual in-person visits with specialists and ongoing telemedicine care. The long-term goal is to create a sustainable local clinic connected to ALS research networks.
The University of Chicago is also receiving a capacity award, to establish a center of excellence in Crown Point, Indiana. That new center will serve patients in Southern Illinois, Northwest Indiana, and Southwest Michigan. Among the range of services offered will be neurology, respiratory care, physical and occupational therapy, and speech therapy. Social work support, palliative care, and access to clinical trials also will be provided.
Other capacity award recipients include the Austin Neuromuscular Center in Texas, which plans to expand staffing and reduce patient wait times, and the University of Kansas Medical Center. That center’s BRIDGE ALS Care program will expand telemedicine and remote multidisciplinary care for people in rural and underserved communities.
2 grants to help establish new clinics in Kansas, New Jersey
The association also announced two Hoffman Clinic Development Awards.
Cooper University Health Care in Camden, New Jersey, will receive funding to establish a multidisciplinary ALS clinic for underserved communities — to include Medicaid patients and residents of rural counties — in the southern part of the state.
Neurology Consultants of Kansas in Wichita was granted a development award to relocate and expand its clinic. The clinic plans to double the number of in-person visits each month and increase telehealth services. For many patients in rural Kansas, the nearest certified clinic is more than 200 miles (about 320 kms) away, making travel difficult and expensive, the nonprofit noted.
According to the ALS Association, “these awards represent meaningful progress — but the gap remains significant, [with] millions of Americans [living] far from certified ALS care.” To the nonprofit, “every mile between a patient and a multidisciplinary clinic is a barrier that affects survival and quality of life.”
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