They need a ventilator to stay alive. Getting one can be a nightmare

"On vacation in Mexico last year, Michael DiPlacido passed out twice while scuba diving and again in his hotel. Back in St. Louis, Mo., doctors diagnosed him with amyotrophic lateral sclerosis, or ALS, an incurable disease that often requires mechanical ventilation. When his son Adam DiPlacido tried to find a permanent place to care for his father, who now needed a ventilator to breathe through a tracheostomy tube, he discovered none of Missouri's nearly 500 nursing homes could take him."

"A KFF Health News investigation found widespread flaws and gaps in care for some of the country's most debilitated people: those who cannot breathe on their own. Spinal cord injuries, strokes, chronic obstructive pulmonary disease, and neurological diseases such as multiple sclerosis have left tens of thousands of Americans permanently dependent on ventilators. The barriers these patients face offer a stark example of how the United States' disjointed health care system makes dealing with severe illness so much harder."

"The investigation found patients are frequently stymied in efforts to get their insurers to provide appropriate home ventilators. They can end up spending hundreds of thousands of dollars for private nurses to make sure they don't die overnight. Those who need to be in a nursing home or other health facility sometimes must move to another state, far from their families."

Tens of thousands of Americans are permanently dependent on ventilators because of spinal cord injuries, strokes, COPD, ALS, multiple sclerosis, and other conditions. Significant gaps exist in both facility-based and home ventilator care. Insurers frequently impede access to appropriate home ventilators, and families sometimes must pay hundreds of thousands of dollars for private nurses to prevent overnight deaths. Only 347 of roughly 14,750 nursing homes have specialized units for ventilator care, and 15 states, including Missouri, have none. Patients unable to find facility placements may have to relocate far from family or remain in inappropriate care settings.

Read at www.npr.org