ICER’s review process now moves to a public hearing of the Midwest Comparative Effectiveness Public Advisory Council (Midwest CEPAC), which ICER defines as a core program comprised of health care officials from throughout the Midwest.
The ALS Association filed formal objections with the Institute for Clinical and Economic Review, commonly known as ICER, over their flawed draft report on the cost-effectiveness of AMX0035 and oral edaravone.
Every year, hundreds of people with ALS, their caregivers, friends and family come together to discuss progress in the fight against ALS and how we advance ALS research, accelerate the drug development process and make it possible for people with ALS to live their lives as they want by engaging policymakers to support the ALS community. Registration is now open for our annual advocacy conference, which will be held June 14 -16 from 3:00-4:30 p.m. ET. Due to visitor restrictions at the U.S. Capitol Complex, the event will be virtual again this year.
Today, more than 230 organizations sent a letter to all 50 state governors urging them to maintain and expand licensure flexibilities enacted at the start of the pandemic for the duration of the federal public health emergency, to better address patient needs during the ongoing pandemic.
The ALS Association endorses the strengthened Accelerating Access to Critical Therapies for ALS Act (ACT) for ALS Act (H.R.8662/ S. 4867) as an important step in bringing promising new treatments to people with ALS as quickly as possible. The bill accelerates the fight against ALS by authorizing $100 million for ALS research and creating the first federal entity explicitly charged with developing treatments for neurodegenerative diseases.
Historic changes in telehealth were made in response to COVID-19 that marked a big step forward in the use of digital technology to deliver health care. We need Congress to pass legislation to ensure expanded use of this vital health care tool is permanent. Send a letter to your members of Congress today urging them to support permanent access to telehealth.
The ALS Association strongly supports initiatives to enable people with ALS to access promising treatments as soon as possible, including prior to FDA approval. Our primary goal is to facilitate the development of effective treatments and help support delivery to everyone with ALS as soon as possible.
A coalition of patient, clinician, and provider groups – including the ALS Association, the American Association for Respiratory Care (AARC), the National Association for Medical Direction of Respiratory Care (NAMDRC), American Association for Homecare (AAHC), and the Council for Respiratory Care (CQRC) – today commend Representatives Morgan Griffith (R-VA) and Peter Welch (D-VT) for introducing legislation to protect Medicare beneficiaries’ access to critical home ventilation therapy. The Safeguarding Medicare Access to Respiratory Therapy (SMART) Act of 2019 would delay the inclusion of ventilators from the Medicare durable medical equipment competitive bidding program for five years, and establish a technical expert panel (TEP) to update that national coverage policies for home mechanical ventilator devices so that they reflect technological advancements and peer-reviewed science.