For people who depend on medical equipment, supply chain crisis can mean life or death

In the eight years that Carl and Tanya Whitley have cared for their son Tim in their San Jose home, they have overcome many challenges. Duchenne muscular dystrophy leaves Tim dependent on a ventilator and a host of other medical equipment. His lungs need to be aspirated several times a day.

Now the family faces a shortage in the supply chain, an issue many Americans face – but for them and others who depend on home medical equipment, the stakes are considerably higher.

“If you can’t find the right color of shoes, or if your child can’t get the toy they want for Christmas, you’ll be fine,” said Mike Scarsella, vice president of the home medical equipment division. from Compass Health, a manufacturer. and distributor. “It’s a little different when mom needs a walker to maintain her mobility. “

The critical components that keep Tim, 35, alive have been hard to come by in recent months. Some are as simple as small plastic tubes, but are still essential to one’s health.

“All the equipment involved in the (tracheostomy cannula) needs to be changed regularly,” said Carl Whitley, 76. “It grows bacteria, that’s what it does. Each item has a different longevity.

Several times over the past few months, different pieces of equipment were not available: the internal cannulas (tubes inserted into the body) for Tim’s tracheostomy, the closed suction catheter for the ventilator, the omniflex adapter for the tube tracheal and suction cans.

“We depend on these supplies to help keep him healthy,” said Carl, a retired pastor. Tanya, 72, is a retired church secretary. “Sometimes when (various tubes) were out of stock, we had to wash them, dry them in the sun and try to reuse them. It is very scary because you can really grow bacteria if you are not careful.

Tanya Whitley works to clean the tracheostomy tube for her son, Tim, who lives with a ventilator in their San Jose home.

Jessica Christian / The Chronicle

He was also forced to tinker with pieces of suction pipes and other parts, MacGyver style. “You learn to improvise,” he said. Its medical supplier, My Best Home Care, tried to alleviate the shortages by finding different brands of equipment. Some did not work as well. “But you have to make do with what you can get,” Carl said.

For babies and children who depend on ventilators, the shortages of very small sizes were even more acute, said Francisco Morales, director of clinical operations at My Best Home Care, a San Jose company specializing in complex home respiratory equipment. .

“There was a severe constraint in our ability to get them to the point where patients had to be readmitted (to the hospital) as there were no smaller sized tracheal tubes,” he said. . “We have families calling us; their baby has been in the NICU for 17 months and has come home for intensive care and we were unable to get her tracheal tube.

For infants and children, tracheal tubes should be replaced as often as once a week to prevent their body from growing around them, while adults should exchange them about every three months, a t -he declares.

The company gives customers information on how to sterilize equipment at home, as the Whitley family do, and Morales said he’s constantly on the lookout for alternative supplies.

“As COVID is a respiratory issue, we share the same supply chain as hospitals,” which currently use more ventilation equipment, said Morales.

Along with shortages, medical equipment makers say their costs are skyrocketing, with significant price hikes for shipping and for raw materials like aluminum and steel for walkers, crutches and chairs. wheels and polycarbonate plastics for the suction tubes.

“The cost of shipping a standard wheelchair (from China) was just over $ 8; at the most, it was over $ 75, ”said Scarsella of Compass Health. “The average (postage) is now about four or five times what we paid a year ago. “

But supplier prices are blocked, set by Medicare and by insurers who use Medicare rates as a benchmark.

“For things like microchips, medical equipment makers compete with GEs around the world who put them in washing machines,” said Tom Ryan, CEO of the American Association of Home Care, a group commercial for the home medical equipment industry. “GE can pay more to get these products faster because they can pass the prices on to consumers. “

His group is lobbying Congress to enact legislation to increase health insurance rates for home medical equipment by about 10% to 12%. “We desperately need a solution,” he said.

But while there are a lot of anecdotes, it is not clear how widespread the problems are.

“I haven’t heard that this is a serious problem,” said Tricia Neuman, executive director of the KFF (Kaiser Family Foundation) Medicare Policy Program, not affiliated with Kaiser Permanente, a non-profit organization focused on health issues. “Certainly if so, it deserves more attention.”

Kathy Holt, associate director at the Center for Medicare, a nonprofit that works to advance access to Medicare coverage for people with chronic and long-term illnesses, said it made sense that medical equipment faces a supply chain problem.

“Of course, we are concerned about beneficiaries’ access to (sustainable medical equipment) and suppliers should be fairly reimbursed for their costs,” she said in an email. However, she added, health insurance costs will eventually keep pace due to the built-in inflation adjustments. “But the price schedules don’t change overnight, there is a process to catch up,” she said.

Meanwhile, the Whitley family keep moving forward.

Tim’s trachea is due to be changed every three months at the doctor’s office, but the family is due to arrive with a new one.

“We once broke down within a week of changing his trachus” with no replacement on hand, Carl said. “We got over most of the supply shortage, but there are still scary things. “

Carolyn Said is a writer for the San Francisco Chronicle. Email: Twitter: @csaid

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