Emergencies and disasters can strike quickly and without warning. For the thousands of Americans living with ALS, emergencies such as fires, floods and acts of nature present a real challenge. June 1 marks the official start of hurricane season and with the coronavirus pandemic, it’s more important than ever to make sure you are prepared.
It is critical that people with ALS and their family members be proactive and make plans to protect themselves in the event of a disaster. Making the conscious decision to be prepared takes work, but it is worth it. The more you do, the more confident you will be that you can protect yourself when the time comes.
As states begin easing some of the stay-at-home orders put in place in response to the COVID-19 pandemic, people who are high-risk of exposure to the coronavirus are still urged to remain safely at home and to take continued precautions to distance themselves from anyone who may have been exposed to the virus.
The Centers for Disease Control and Prevention is also encouraging people who are high-risk – like people living with ALS – to manage the increased stress that comes with this time of isolation – including finding ways to regularly connect with others, limit news consumption, and unwind when anxious feelings are looming.
As the COVID-19 pandemic spreads throughout the country, the Centers for Disease Control and Prevention recommends putting together plans for your household and community. The ALS Association has resources available to help our community put together plans tailored around the needs of people living with ALS.
When a person living with ALS requires urgent or ongoing treatment in a hospital setting, they face a unique set of challenges. To assist with making your needs and wants known, and to support health care providers in their roles, there are some tools available for people living with ALS.
In response to congressional action, The Centers for Medicare and Medicaid Services notified providers of a new option for expanded Medicare coverage for telehealth visits. These changes temporarily remove originating site and geographic restrictions from coverage of telehealth under Medicare fee-for-service. This coverage applies to all Medicare-approved telehealth services.
The government temporarily waived restrictions on telehealth in Medicare fee-for-service to enable more seniors to access care from their own homes during the public health emergency brought on by the coronavirus. The provisions were included in the Coronavirus Preparedness and Response Supplemental Appropriations Act.
The telehealth waiver applies to treatment of all diagnosis during the Public Health Emergency, not just COVID-19-related visits.
I want to provide you with an update on how The ALS Association is serving the ALS community as COVID-19 progresses. We know this is a concerning time for many and we want to assure you that we are continuing our urgent mission to find treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.
Today, The ALS Association launched the ALS Focus survey program. The goal is to recruit people living with ALS and their caregivers to capture their experiences and preferences. Data will be collected in a scientifically rigorous way through quarterly surveys. ALS Focus will provide a deep and evolving understanding of disease burden and experiences of people with ALS and their caregivers.
The program is a stakeholder driven and collaborative program run by people with ALS, caregivers, academics, industry, government, and ALS Association leadership. Together, they will ensure a unified and truly representative “voice” for the ALS community. This information is critical to ensure that the voice of people living with the disease directly informs research, clinical, regulatory, and drug company decisions.
Learning that you should consider a feeding tube can be overwhelming. It is a lot to take in, particularly in combination with the many medical issues that come with an ALS diagnosis. It is common for patients to be hesitant about it, but often, once they see the benefits of tube feeding, they often regret not making the decision sooner.
As part of the ALS care planning process, it is important for patients to discuss options with their multidisciplinary care team, weighing the pros and cons and understanding how their decision will affect their life while they are capable of making these decisions with the least amount of stress and difficulty.