Kids Who Rely On Ventilators Can’t Get Enough Supplies, Putting Their Lives At Risk

By Claudia Boyd-Barrett • Apr 22, 2020

Gabriel Renteria is 18 months old and uses a ventilator to help him breathe. Due to the COVID-19 pandemic, he’s not receiving enough ventilator circuits. Across the state, families like his are being told to reuse supplies, “which, quite frankly, is dangerous,” a medical equipment supplier said. Photo courtesy of Sabrina Renteria. 

Sabrina Renteria of Bakersfield unfolded the letter from her son’s medical equipment supply company. Her eyes scanned the text. She looked away, shocked.  

Because of the COVID-19 pandemic, ventilator circuits—the plastic tubes that connect Renteria’s 18-month-old son Gabriel to his home ventilator—were in short supply, the letter from SuperCareHealth said. That meant Renteria would only get one circuit in April, instead of the usual four.

Gabriel has a rare bone disorder called Larsen syndrome that affects his chest cavity. His lungs are unusually small, and he requires a ventilator to breathe. The ventilator circuits are supposed to be replaced each week because the tubes get dirty and can breed bacteria. They also frequently break. Not changing the circuits regularly could lead to Gabriel getting sick or—even worse—not being able to breathe.

“I thought, how are we supposed to keep him safe and sanitary?” Renteria said. “It’s scary to think that we have just this one circuit, and if something happens to this one, how are we going to get another one?” 

At least 3,000 children in California rely on ventilators, according to the California Association of Medical Product Suppliers, and many of them are facing a shortage of the supplies that help keep them alive. Amid the COVID-19 pandemic, demand for ventilators and the accessories that keep them functional has soared. As a result, companies that have long provided ventilator equipment for children with long-term respiratory needs said they’re struggling to obtain their usual supplies.

In a recent poll by HME News, a business publication for home medical equipment providers nationwide, 95 percent of companies reported trouble obtaining new equipment from manufacturers during the coronavirus pandemic. Items in short supply included oxygen, ventilators and ventilator maintenance kits.

John Cassar, chief executive officer of SuperCareHealth, one of the state’s largest respiratory equipment providers, said he’s been having trouble getting certain ventilator supplies for weeks because factories and distributors are sold out. Actual ventilators are impossible to obtain, he said. The company provides supplies to more than 1,600 children who use ventilators. 

The company—which typically rents ventilators to families and sends them a monthly supply of tubes and other accessories—is being forced to ration some items, even though it could put kids in danger, he said.

“We’ve asked (families) to reuse their supplies which, quite frankly, is dangerous,” Cassar said. “We’ve asked them to reuse their circuits—that’s not really recommended. These kids and these moms are having to struggle to deal with this issue, and it’s sad.”

Terry Racciato, president of SpecialCare, a medical equipment supplier in San Diego, said she can’t get enough ventilator circuits either, or other items such as oxygen concentrators, tracheotomy tubes and supplies for children that are tube fed. She currently has about half the normal supply in stock, and that’s because the company ordered ahead in January, predicting potential shortages because of the coronavirus’ spread in China. Since then, new orders have gone unfulfilled, Racciato said.

“I think part of the reason we’re having difficulty getting (supplies) is because we’re the small guy,” Racciato said.

“We are not the state of New York, the federal government,” she said. “I think a lot of the supplies we normally would have had have been redirected to the COVID patients or the potential risk of the COVID patients.”

Existing Financial Strain

The supply shortfall is piling further strain on an already precarious situation for medical equipment suppliers in California, said Bob Achermann, president of the California Association of Medical Product Suppliers. Most children who require home ventilators and other life-supporting medical equipment have health insurance through a state program, either Medi-Cal or California Children’s Services (CCS). But the amount of money that Medi-Cal and CCS pay companies for the equipment has been dropping for a decade. 

The lack of state funding for medical equipment creates a disparity. While wealthier families can more likely afford to purchase supplies out of pocket or obtain them through private insurance, children from poorer families often wait months to obtain medical equipment through state programs—or go without. This can affect their health and ability to thrive. 

In 2011, in the wake of the Great Recession, California lawmakers cut Medi-Cal provider rates by 10 percent. A few years later, the federal government began steadily decreasing the amount of medical equipment costs it will reimburse states for. This in turn affects Medi-Cal reimbursement rates, Achermann said.

As a result, Medi-Cal reimbursements for many types of medical equipment have plunged by 40 to 60 percent since 2015, according to the California Children’s Hospital Association.

Home ventilator rental rates are now $645 a month under Medi-Cal, down from $1,012 a month in 2017, according to SuperCareHealth. That amount is supposed to cover the equipment, ongoing part replacements, complex administrative requirements, and respiratory therapists who help families set up, manage and maintain the ventilators. In the meantime, labor and supply costs keep rising, Cassar said. 

On top of that, California’s Department of Health Care Services is slow to process the rate changes and cuts rates retroactively, said Achermann. Companies are now facing a retroactive rate cut to January 2019. That means supply companies will be forced to pay back money the state gave them for providing medical equipment over the past year and a half.

“It’s insanity,” Achermann said. Medical supply companies “don’t know they owe this money. They’ve paid their taxes, they’ve paid their staff, and all of a sudden Medi-Cal says, ‘Oops, you owe me $100,000.’”

‘We’re Holding On By A Thread’

The rate cuts, combined with the COVID-19 supply shortages, are devastating to SuperCareHealth and make it hard to continue providing services to families in need, Cassar said. His company will likely be on the hook for millions of dollars in back payments to Medi-Cal, even as it has to pay more for key equipment and respiratory therapists because of COVID-19-related demand, he said.

“The COVID situation has just put fuel on the fire,” he said. “We’re holding on by a thread.”

Cassar and other suppliers want the state to increase reimbursement rates and stop applying cuts retroactively. Without adequate investment in home respiratory care, kids may end up in the hospital—which is vastly more expensive for taxpayers, and dangerous for medically fragile kids who could be exposed to pathogens such as COVID-19, Cassar said.

Ariana Herrera, 8, uses a ventilator to help her breathe. In this photo she’s with her younger sister, Elizabeth Herrera. Photo courtesy of Diana Herrera.

“The most cost-effective setting to manage these children is in the home,” he said. “If we can’t be there with respiratory therapists, if we can’t be there managing their ventilators, if something went wrong … at a minimum these children will end up back in a hospital.”

The Department of Health Care Services, which manages the Medi-Cal program, did not respond to requests for comment before the publication deadline.

Forced to Wash and Reuse Ventilator Circuits

Diana Herrera’s biggest fear is that her 8-year-old daughter, Ariana, will need to go to the hospital. That fear is made more concrete by the supply shortage. Herrera, who lives in Sylmar, now receives two ventilator circuit supplies per month for Ariana—instead of the usual eight. 

Ariana has a neuromuscular disorder resulting in chronic lung inflammation. She requires a ventilator, breathing and feeding tubes to survive. Since Ariana began receiving fewer supplies this month, Herrera has been washing and reusing the ventilator circuits to try to prolong their life. But she’s worried they will break from washing them too many times. Sometimes, the ventilator rejects the circuits. Sometimes, the delicate parts are broken when she receives them, she said.

“It’s a scary situation,” Herrera said. “What if they don’t pass (the ventilator’s quality control system), or they come ripped—it’s not the best material. Then you have nothing.”

Renteria of Bakersfield is also washing and reusing her son’s circuits. She and her husband constantly check the tubes for cracks and watch her son’s secretions for signs he may be getting sick. She’s worried she may be unable to get other supplies he needs, such as tracheotomy tubes and saline solution. Other parents of medically fragile children that she knows are struggling with reduced supplies, she said.

All she wants, Renteria said, is to help her son. To keep him breathing. 

“I can complain and call (the supplier), but they won’t send me another,” she said, “because they just don’t have enough for all of these families.”

This story is produced in partnership with Disability Scoop