This is a carousel. Use Next and Previous buttons to navigate

Tanya Whitley spends time with her son Tim who lives with a ventilator at their home in San Jose. The supply chain crisis meant that some small but crucial health care supplies have been harder to come by, which means the Whitleys have had to use some parts longer than recommended or wash them for re-use, which can be dangerous if bacteria builds up.

Carl Whitley shows a closed suction system and inner cannula, critical equipment needed daily to care for his son, Tim, who lives with a ventilator at their home in San Jose. The supply chain crisis meant that some small but crucial health care supplies have been harder to come by.

In the eight years that Carl and Tanya Whitley have cared for their son Tim in their San Jose home, they’ve weathered many challenges. Duchenne muscular dystrophy makes Tim reliant on a ventilator and a host of other medical equipment. His lungs must be suctioned out many times a day.

Now the family is confronting the supply chain shortage, an issue faced by lots of Americans — but for them and others who depend on at-home medical equipment, the stakes are dramatically higher.

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

Critical components that keep Tim, 35, alive have been tough to come by in recent months. Some are as simple as small plastic tubes, but still are vital to his health.

“All the equipment involved with the (tracheostomy tube) has to be changed out on a regular basis,” said Carl, 76. “It grows bacteria, is what it does. Every item has a different longevity.”

At various times in recent months, different equipment was unavailable: the inner cannulas (tubes inserted into the body) for Tim’s tracheostomy, the closed suction catheter for the ventilator, the omniflex adapter for the trach tube and the suction canisters.

“We depend on those supplies to help keep him healthy,” said Carl, a retired pastor. Tanya, 72, is a retired church secretary. “Sometimes when (various tubes) were back-ordered, we’d have to wash them, dry in the sun and try to reuse them. That’s very scary, because you can really grow bacteria if you’re not careful.”

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

He’s also been forced to cobble together pieces of suction tubing and other parts, MacGyver-style. “You learn to improvise,” he said. His medical supplier, My Best Home Care, tried to compensate for shortages by finding different brands of equipment. Some didn’t work as well. “But you have to make do with what you can get,” Carl said.

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

“There was a severe strain in our ability to obtain these to the point where patients had to be readmitted (to the hospital) because there were no trach tubes in smaller sizes,” he said. “We’ve had families calling us; their baby’s been in the (neonatal intensive care unit) for 17 months and came home for intensive care, and we couldn’t get them their trach tube.”

For infants and children, trach tubes have to be replaced as often as weekly to prevent their bodies from growing around them, while adults need to swap them out about every three months, he said.

The company is giving clients information on how to sterilize equipment at home, as the Whitley family is doing, and Morales said he is constantly searching for alternative supplies.

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

Besides shortages, medical equipment makers say their costs are soaring, with steep price hikes for shipping and for raw materials like aluminum and steel for walkers, crutches and wheelchairs, and polycarbonate plastics for suction tubes.

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

But suppliers’ prices are locked in, set by Medicare and by insurers who use Medicare rates as a baseline.

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

His group is lobbying Congress for legislation to boost Medicare rates for at-home medical equipment by about 10% to 12%. “We desperately need a fix,” he said.

But while there are lots of anecdotes, it’s not clear how widespread the problems are.

“I haven’t heard of this being a serious issue,” said Tricia Neuman, executive director of the Program on Medicare Policy at KFF (Kaiser Family Foundation, not affiliated with Kaiser Permanente), a nonprofit focusing on health issues. “Certainly if it is, it warrants more attention.”

Kathy Holt, associate director at the Center for Medicare, a nonprofit working to advance access to Medicare coverage for people with longer-term and chronic conditions, said it makes sense that medical equipment is facing a supply chain problem.

“Of course we’re concerned about beneficiary access to (durable medical equipment) and suppliers should be fairly reimbursed for their costs,” she said in an email. However, she added, eventually Medicare fees will keep pace due to built-in inflation adjustments. “But fee schedules don’t change overnight; there’s a process to catch up,” she said.

Meanwhile the Whitley family soldiers on.

Tim’s trach has to be changed every three months at the doctor’s office, but the family must arrive there with a new one.

“One time we got down within a week of having his trach changed” without a replacement on hand, Carl said. “We’ve made it through most of the supply shortage, but there are always scary things.”

Carolyn Said is a San Francisco Chronicle staff writer. Email: csaid@sfchronicle.com Twitter: @csaid

Carolyn Said, an enterprise reporter for The San Francisco Chronicle, covers transformation: how society, business, culture, education and other institutions are changing. Her stories shed light on the human impact of sweeping trends. As a reporter at The Chronicle since 1997, she has also covered the on-demand industry, the foreclosure crisis, the dot-com rise and fall, the California energy crisis and the fallout from economic downturns.