Amyotrophic Lateral Sclerosis (ALS), also called Lou Gehrig's disease, affects the nerve cells that control voluntary muscles, eventually leading to paralysis. It prevents people from talking, walking, and, eventually, breathing. Typically, patients diagnosed with ALS die within three to five years of their diagnosis from respiratory failure. However, some live longer. We provide estate planning services for every stage of life.

Approximately 20,000 people in the United States live with ALS. Around 5,000 new cases appear annually.

The Food and Drug Administration (FDA) approved a new ALS drug on September 29, 2022. It’s encouraging for patients and advocates pushing for the medication. However, some experts voice concerns over the treatment and its effectiveness.

Important Information About Relyvrio

Relyvrio is a newly approved therapy designed to slow the progression of ALS. It protects nerve cells in the spinal cord and brain that the disease often destroys.

The drug contains two major components – a nutritional supplement called taurursodiol and a prescription drug called sodium phenylbutyrate. The medication comes in powder form. The patient can swallow a packet of the powder dissolved in eight ounces of water or receive it through a feeding tube.

The most common side effects include:

• Nausea
• Diarrhea
• Upper respiratory tract infection
• Abdominal pain

The ALS Therapy Development Institute raised $115 million in 2014. The institute gave $2.2 million of the money raised to help fund testing.

Studies Show Promise for the Treatment of ALS

According to Amylyx, the biotech company that manufactures the drug, a long-term analysis shows patients lived longer while taking Relyvrio compared to individuals given a placebo. A randomized, double-blind study involving 137 patients showed patients treated with the new drug experienced a slower decline rate of 25 percent compared to patients taking the placebo. They were able to continue performing basic tasks, such as walking, talking, and cutting food. Additionally, a longer overall survival rate occurred in participants treated with Relyvrio.

The FDA expressed concerns over the effectiveness of the medication due to limitations in the data. However, the agency also acknowledged the need for treating ALS due to its serious and life-threatening nature. The director of the Office of Neuroscience at the FDA stated the importance of providing a treatment option for a disease without a current cure.

An associate professor of neurology and director of neuromuscular clinical trials at Columbia University also applauded the drug. She diagnoses ALS in new patients every day and plans to begin prescribing the medication when it’s available.

Amylyx hopes to make the drug available to ALS patients as soon as possible.

Additional Aspects of Planning for ALS Patients

Preparing for future financial, legal, and medical challenges is critical if you or a loved one has ALS. By planning ahead and creating a comprehensive long-term care and estate plan, you can empower your caregivers and ensure access to the treatment you need without burdening your family.

Contact our New Haven will and trust lawyers immediately to learn how to protect yourself and your family. We are here to help you start the process of getting your affairs in order in a straightforward and easy-to-understand way. Simply contact our law firm at 203-877-7511 to schedule an appointment.

Contact our estate planning lawyers located in New Haven and Harford, Connecticut.