Millions of chronically ill people are struggling to get medical supplies amid global shortages caused by the crisis.
Crystal Evans looks out of her home Feb. 7 in Braintree, Mass., where she has been trapped since her rotting wheelchair ramp had to be removed late last year. Crystal Evans lives in constant fear that bacteria will grow inside the silicone tube that connects her windpipe to the ventilator that pumps air into her lungs.
In the hospital, doctors can often find substitutes for unavailable supplies, including tubing, IV kits, nutrition supplements and drugs such as heparin, a commonly used blood thinner. But for people who manage their care at home, it is often a lengthy struggle to get insurance to cover an alternative supply, and going without can have serious consequences, say disability advocates.
“Normally that might be 150 different items in any given week on back order,” Hargraves said. “That number today is north of 1,000.”ICU Medical, the company that manufactures the tracheotomy tubes that Evans uses, acknowledges that shortages can pose a “significant added burden” for patients “I think this is a piece of this larger puzzle of people with disabilities being deemed less worthy of resources, less worthy of treatment, less worthy of keeping alive.”Killick, who has motor dysgraphia, a condition that causes difficulties with the fine motor skills needed to brush one’s teeth or write by hand, said that in many instances during the pandemic,
“Now I’m sleeping all the time,” she said. “I just don’t have enough energy, and I still don’t feel like I’m rested when I wake up.” gene mutation. After much trial and error, the family found that getting nutrition through feeding tubes and regular IV infusions that contain dextrose, vitamins and other supplements helped clear their brain fog and eased exhaustion.
With the regular IV infusions, Brandi Polatty said she was able to avoid hospitalizations and support her family by writing romance novels. Jonah, 14, eventually got healthy enough to remove the chest port and his feeding tube; he now relies on oral medications to manage his disease. His older brother, Noah, 16, still needs infusions but felt strong enough to study for the GED, pass and enroll in music school to learn guitar.