#USA #Arlington #ALS Association #ALS care #ALS Better Care Act

The ALS Better Care Act Reintroduction

The ALS Association has expressed its strong support for the recently reintroduced ALS Better Care Act. This legislation marks a significant step forward in improving access to comprehensive, high-quality care and clinical trials for individuals diagnosed with amyotrophic lateral sclerosis (ALS). Given that ALS is a devastating neurodegenerative disease, the need for such initiatives is pressing.

Understanding ALS

ALS is known for its rapid progression and fatal nature, with most patients facing a life expectancy of just two to five years following their diagnosis. The implications are dire, as those affected often lose vital abilities such as movement, speech, and even the capability to breathe. This is where immediate access to specialized multidisciplinary care becomes essential. Studies reveal that patients receiving comprehensive care not only enjoy a longer lifespan but also a significantly improved quality of life.

Challenges Facing ALS Clinics

Despite the critical importance of ALS clinics, many are struggling to remain operational due to insufficient Medicare reimbursement. Existing payment structures fail to acknowledge the intricate, frequent, and team-oriented nature of ALS treatment. Consequently, even highly regarded clinics are often underfunded, leading to limitations in patient intake, delayed diagnoses, and restricted access to potentially lifesaving clinical trials.

Melanie Lendnal, Esq., the senior vice president for policy and advocacy at the ALS Association, emphasized the urgency of this issue: "For those living with ALS, access to specialized care is not just beneficial—it's vital to extending life and improving day-to-day living. The ALS Better Care Act aims to overhaul a flawed payment system, allowing clinics to deliver timely, coordinated care essential for enhancing life quality and survival rates."

Key Features of the ALS Better Care Act

One of the standout features of the ALS Better Care Act is the proposed supplemental Medicare add-on payment of $800 per visit. This will ensure that providers are appropriately compensated for the multidisciplinary care essential to ALS treatment.

What is Multidisciplinary ALS Care?

Multidisciplinary care integrates a host of specialists, including but not limited to:

• - Occupational and physical therapists
• - Respiratory care experts
• - Speech and communication professionals
• - Nutrition and dietary advisors
• - Palliative care providers

Typically, individuals with ALS require check-ups every two to three months, which has been shown to enhance life quality, alleviate caregiver stress, and mitigate preventable issues like falls and hospital stays.

Call to Action

The ALS Association is fervently urging Congress to advance this critical legislation. By doing so, they can guarantee that individuals living with ALS receive the urgent care and resources necessary to navigate their condition effectively.

"We invite everyone to communicate with their representatives to co-sponsor the ALS Better Care Act. Every moment counts for those battling ALS," stated Lendnal.

About the ALS Association

The ALS Association stands as the largest organization for ALS globally, dedicated to funding research, supporting patients and their families through a nationwide network of certified clinical centers, and advocating for improved public policy initiatives concerning ALS. The ultimate aim of the ALS Association is to make ALS a manageable condition while striving for a cure. For further information, please visit ALS Association's official website.

Conclusion

The reintroduction of the ALS Better Care Act holds substantial promise for enhancing the lives of those living with ALS. For many, this means not just hope but also tangible improvements in health outcomes and quality of life. As we anticipate the progress of this legislation, the call for support and action from all stakeholders remains crucial in making a meaningful impact.