Sodium cromoglycate is a safe, effective medicine that is no longer in common use and has been around for over 50 years. Suddenly it has become very expensive for those who use it.
For patients like Robyn Fernandez, this has been a lifeline – literally.
“Basically it gave me back my quality of life,” the 24-year-old told CTV News Toronto. Fernandez lives with mast cell activation syndrome, an immune disease that causes symptoms, including anaphylaxis.
âIt’s basically your immune system is over-training and overreacting to everything. And it’s kind of like when you have a superhero movie: my immune system is the superhero and whatever. ‘he decides is that the super villain is the super villain and I’m the city being destroyed in the meantime. “
His explanation for the disease is mild, but the effects are not.
âAnything can be a threat,â Fernandez said, âit can be just a cloth you wear, it can be a smell in the air, it can be a food you eat that was safe and now your body decides suddenly it’s a threat And then you can go into anaphylaxis and the next thing you know you do an EpiPen and you’re in the hospital.
Since being diagnosed with the syndrome, Fernandez has been using sodium cromoglycate. The drug comes in the form of nebulae, which are inhaled into the lungs. In Canada, the drug is manufactured by the Montreal-based Pharmascience Inc.
Earlier this year, the drug was taken from the Ontario Drug Benefit Formulary, meaning the cost is no longer covered by the province. Soon after, those who used it found that the price had increased by over 400%.
“No one is going to believe that the operating costs to make this drug have suddenly jumped 400 percent,” said Dr. Matthew Stanbrook, pulmonologist at the University Health Network.
“It’s just an attempt to make money. It’s not necessary, it’s just the business trying to generate more income and, from a healthcare perspective, we shouldn’t have sympathy for it, âStanbrook said.
Stanbrook says the drug, which has been around since the late 1960s, was commonly used to treat conditions ranging from asthma to allergies. But advances in medicine have led to other drugs taking its place for most patients. Still, he says, there are a small number of patients who need it.
“It takes patients who need this drug hostage because they are addicted to the drug. The costs are rising beyond the point that any individual could afford and it puts insurance companies and third-party payers like governments. in difficult situation. “
Use of the drug has fallen by more than 95 percent over the past 15 years, according to its manufacturer. In a press release Wednesday, Pharmascience Inc. said that “the case of sodium cromoglycate illustrates the extreme difficulty for generic pharmaceutical companies to maintain the marketing of old generic drugs with very low rates of use”.
The company said it was reducing the cost of the nebulizer solution to what it called the “lowest price available in Canada.”
However, even that will not help Fernandez who says that the increase in prices makes it impossible to purchase the drug. “I will not be able to take my medication anymore,” she said.
The company said the cost reduction will remain in place until the current inventory is depleted, giving doctors time to find alternative therapies for their patients. But this may not be possible for everyone. Dr. Stanbrook calls this a âbad compromiseâ which can lead to further complications for patients.
“For those few patients who depend on it, it might be a matter of swapping out this drug which has relatively few side effects and is very well tolerated, for a drug that could have a lot of side effects.”
And for Fernandez, that might not be an option. She says, âThere is no alternative. I spoke to my pharmacy, there is no alternative. My allergist said that we don’t know what to do after that because there is nothing left. “
Fernandez hopes the drug will be added to the ODB formulary again, so she can continue to take it.
“I need it to be covered so that I can breathe and eat without going into debt or being in the hospital all the time.”