A University Health Network doctor says an increasing phenomenon has emerged with pharmaceutical companies hiking up the price of medicine only used by a few patients. While the impact is not widespread, those who rely on it are left to suffer without it.
Dr. Matthew Stanbrook, an asthma and airway specialist, said they are seeing this more frequently with manufactured medicines where it’s hard for the company to make a profit.
“It’s a small market, and so you’re getting into access problems and conflicts between manufacturers, raising prices and not having a big market and patients being caught in the middle,” said Dr. Stanbrook. “[Pharmaceutical companies] want to see if it can squeeze a lot more money from governments and the small number of patients who are dependent on it.”
Aasiya Hussain shared her story last week with CityNews as she was about to run out of her medication, PMS-Sodium Cromoglycate.
Hussain is on Sodium Cromoglycate to treat her respiratory and lung conditions and stabilize her mast cells. It can also be used by people with multiple medical conditions ranging from common asthma to chronic and severe lung conditions, mast cell diseases, and cystic fibrosis.
Dr. Stanbrook said the drug — which has been on the market for over 50 years — is not as commonly used, but for those patients whom other treatments don’t work or “have side effects that you really don’t want to expose people to,” it is still very effective.
Hussain ran out of her doses on Monday but said thanks to advocates’ help, she could purchase additional quantities to continue her treatment.
Despite the dramatic price increase, several provinces are still covering the drug, but where Hussain lives, Ontario is not.
The Ministry of Health said it was removed from the Ontario Drug Benefit formulary at the request of the manufacturer Pharmascience. The delisting was effective Oct. 2021.
They added the drug was listed as “interchangeable” under the formulary, which means it’s a product that can be substituted for another product by a pharmacy.”
Provinces such as British Columbia, Manitoba and Alberta have confirmed to CityNews they are offering the drug in their formulary. It’s also currently covered by Quebec, but the government tells us they’ve received a request from the manufacturer to remove it from their formulary that will be effective Dec. 15.
The Alberta Ministry of Health told CityNews they had not seen a price increase. Manitoba did see a price increase and is still covering it.
According to Hussain, the price of the drug increased to $1,622.79 from $343.79 for patients who require an initial four doses a day. She takes eight doses per day.
When CityNews asked the Ontario government why drug companies are allowed to increase their prices dramatically, a spokesperson said, “The Ontario government does not regulate the price of a generic product that is not listed on the ODB Formulary.”
“It’s really very extortionate and unethical and it’s very, very difficult for patients … to be in this situation all of a sudden where the drug they depend on is now not available to them,” said Dr. Stanbrook.
When asked to describe the effect on those subjects who take the medication, Dr. Stanbrook said, “I suspect most patients now dependent on this will find other solutions, but in the short term at least, they will probably become sicker, and some you know may sustainably have a change in their quality of life, and that will be very unfortunate for them and unfair to them.”
Pharmascience told CityNews last week they had to either increase the price or stop producing it because the drug is “a low volume product with an uncertain commercial viability.” They also said it was the price increase that led to Ontario delisting the drug from their formulary.
Hussain said she applied to Pharmascience’s three-month compassionate supply of the drug but was only approved for a month. It arrived at her pharmacy but first had to go through quarantine and decontamination before reaching her.
She has also applied to Ontario’s Exceptional Access Program (EAP), allowing some drugs not included in the formulary to be covered. But Hussain said EAP confirmed the drug isn’t listed on their covered exceptions, and it may take several months for her application to be further reviewed. Ontario confirmed it is not covered under the EAP.
Dr. Stanbrook said they have also seen this tactic from pharmaceutical companies manufacturing newer drugs targeted for rare conditions that can be life-changing.
“Because they’re targeted at a very, very specific thing that happens inside the body in a very focused target, it may be relevant to only a small number of people for whom the disease depends on treating that target. And so the costs of the just drugs is often very expensive,” said Dr. Stanbrook.
“It’s a real challenge for patients, governments, insurance companies, to you know, be able to accommodate that. This is the major driver of costs for our provincial drug formularies in Canada.”
Hussain said she believes there should be legislation enacted to keep pharmaceutical companies from doing this.
“There needs to be regulatory and enforcement of regulations and legislation that prevents pharmaceutical industries from price gouging in this way. We need to also look at policies and governance and enforcement and means in which we prevent this from ever happening again,” said Hussain.
Dr. Stanbrook said one short-term solution to this issue is a national pharmacare program. “The larger solution may be reinventing how we develop and sell drugs and maybe leaving things in the hands entirely of for profit.”
“While this is just one example for a few patients … it’s a symptom of a much larger problem that will become a bigger threat to the sustainability of Canada’s healthcare system,” said Dr. Stanbrook.