Blacks Live Longer, Not Necessarily Better, With ALS
FRIDAY, April 5, 2019 (Pharmacist's Briefing) -- Black Americans with amyotrophic lateral sclerosis (ALS) tend to live longer than whites with the disease because blacks are more likely to have a procedure called a tracheostomy, a new study shows.
But that may not always be a good thing, the researchers noted.
ALS, also called Lou Gehrig's disease, is a progressive neurodegenerative disease that destroys nerve cells that control voluntary muscle movement. In the end stages of the disease, patients are totally paralyzed.
In a tracheostomy, an opening is made through the neck into the windpipe to provide ALS patients with an airway to breathe and to remove secretions from the lungs.
"Once you have a tracheostomy and a ventilator, patients can live longer, but unfortunately with this disease that is not necessarily a good thing," said study author Dr. Michael Cartwright, a professor of neurology at Wake Forest Baptist Medical Center in Winston-Salem, N.C.
Only about 2 percent of ALS patients in the United States receive a tracheostomy, the researchers said.
In this study of 49 black and 137 white ALS patients, the researchers found that three times as many black patients had a tracheostomy as white patients.
"Although we couldn't pinpoint why African Americans had more tracheostomies in our study, we do know that earlier interventions, such as breathing masks, can slow down the rate of decline and help patients deal with the disease," Cartwright said in a Wake Forest news release.
"We think it is very important for people dealing with the disease to think about their quality of life and decide what interventions are most important to them," he added.
"As doctors we can advise and help them make these decisions beforehand rather than in emergency situations, as is often the case with tracheostomies," Cartwright concluded.
The findings were published online recently in the journal Neurology.
The U.S. National Institute of Neurological Disorders and Stroke has more on ALS.