Children miss cancer treatments at CHEO as drug shortages grow
Worsening drug shortages have hit home in Ottawa, where two children being treated for leukemia at CHEO each missed a dose of chemotherapy because the required drug was not available. The drug continues to be on back order, which means there could be more missed doses.
The cases, over the past two years, involved children being treated for acute lymphoblastic leukemia. The Children’s Hospital of Eastern Ontario is not releasing details of the patients’ ages or genders to protect their privacy.
Children who react to the frontline chemotherapy treatment for the acute leukemia are given a dose of a drug called erwinia asparaginase. That cancer drug has been in short supply in recent years and the company that manufactures it can’t produce enough to meet demand, resulting in children’s missing doses in Ottawa and elsewhere.
“It’s a terrible thing for a family to hear that their child with cancer has to miss a treatment because we don’t have access to the medication needed,” said Dr. Donna Johnston, head of oncology at CHEO. “We have not been able to give this drug to two children who needed it because the drug was not available.
“We currently have a number of children in need of this medication and are expecting a shipment soon, but if it is delayed, we may be in a situation of having to tell another family the awful news that we can’t give their child a treatment.”
If the drug is missed, it can’t simply be given when it is available. It can only be resumed later, depending on the other drugs that are part of the child’s treatment plan. The shortage has persisted across North America. The U.S. Food and Drug Administration’s most recent list of drug availabilities says it is out of stock.
A recent study suggests that certain children with acute lymphoblastic leukemia who skip even one treatment of erwinia asparaginase may have lower survival rates than those who didn’t miss a treatment, said Johnston.
“This tells us two things. First, manufacturing of oncology drugs needs to be a priority as this is an ongoing problem with many drugs. Second, this ongoing shortage is significant enough to have motivated research that gives physicians guidance about managing a shortage of this drug,” she said. “Neither are good things.”
To doctors, who strive to give patients the best possible treatment, and pharmacists, who work to make sure the right drugs are available, seeing children miss a dose of cancer drugs is a worst-case scenario.
“A cancer diagnosis is terrifying for families and it is an all-handson-deck effort by clinicians to treat the disease, so this just adds more stress,” said Alex Munter, CHEO chief executive.
While Johnston and others keep a close eye on the availability of erwinia asparaginase and other drugs, managing drug shortages and finding suitable alternatives is a daily effort at CHEO and other hospitals across the country. In fact, CHEO has had to commit a pharmacist halftime exclusively to the job of managing shortages, which keep getting worse.
Sometimes, pharmacists can find enough of a drug to treat a child. Or they can find suitable replacements for drugs that are not available — a different size or format, for example. That is something all hospitals must do in light of increasing shortages.
But that is often more difficult at children’s hospitals because of the nature of pediatric medicine. If a liquid version of a certain drug is on back order, for example, there might be a tablet form, but that is more difficult to deliver to young children, which makes it difficult to know whether they are getting the correct dose.
Cancer drugs make up about onethird of the current drugs either unavailable or on back order at CHEO.
Munter and others fear the current situation, which has steadily worsened in recent years, could get much more severe with U.S. states hoping to buy cheaper drugs in bulk in Canada.
“I would say it is a manageable problem, but it is trending in the wrong direction with storm clouds on the horizon,” said Munter.
Groups representing hospitals, pharmacists, patients and others have called on the federal government to safeguard Canada’s drug supply from bulk buying by U.S. states and others.
“We have been pushing Health Canada and the federal government to ensure they are using every lever possible to protect us,” said PaulEmile Cloutier, president and chief executive of HealthCareCAN, the national body representing hospitals, and health-care organizations.
CHEO is not alone in having a patient who missed a treatment because of shortages, said Emily Gruenwoldt, head of Children’s Health Care Canada, which represents organizations providing children’s health care services.
“We are hearing a lot of stories about drug shortages across the country, more than ever before, and these drug shortages are taking a longer time to resolve. Where there is an alternative, wonderful, but where there isn’t it is leaving patients and their families in a really precarious position,” she said.
“If you talked to every hospital administrator across the country, they would be able to provide you with a comparable example (to CHEO’s).”
Gruenwoldt said there are U.S. data suggesting that drug shortages have increased fourfold over the past six years. Although there are no similar Canadian statistics, she said members of her board said that number “feels right” for Canada as well.
Gruenwoldt said her organization would like to see better communications and advance notice about shortages, among other things.
The causes of recent worldwide drug shortages are complex and varied. Contributing factors include merging of companies, the fact that many drugs have a single source, manufacturing disruptions, shipping delays and increased demand.
After Hurricane Maria devastated Puerto Rico in 2017, for example, there was a shortage of some types of IV bags, which had been manufactured at a factory that was destroyed in the storm.
A pediatric cancer drug was recently unavailable after production problems. Similarly, production difficulties have meant shortages of some flu vaccines this year. Nasal spray flu vaccine, often used on children, was unavailable across Canada this year.
Groups representing hospitals and health organizations say there is no simple solution to solve drug shortages, but the federal government can take action to prevent things from getting worse, by cracking down on bulk sales to the U.S.
Meanwhile, a national pharmacare plan, which was talked about on the recent federal campaign trail, could bring a better focus and better control to the country’s drug supply, they say.
Johnston, CHEO’s chief of hematology and oncology, said the federal government needs to follow up on commitments to invest $30 million in childhood cancer research next year. The current situation “speaks to the urgency of moving forward with that commitment.”
Meanwhile, trying to minimize drug shortages has become the new normal in hospitals, pharmacies and other health care institutions.
“I am proud of our pharmacists and physicians for doing everything they can to solve the problems on a day-to-day basis,” said Munter. “They have the skill and ingenuity to do that, but it can be terrifying for families at a time when they are already dealing with a lot.”