Elizabeth May denounced what she calls “Big Pharma’s” unchecked ability to charge whatever it wants for treatments and medications.
Saanich-Gulf Islands MP Elizabeth May has taken up the cause of Langford parents fighting the province’s decision to cut drug coverage for their terminally ill child, saying the case illustrates the need for a universal single-payer pharmacare system.
For six years, nine-year-old Charleigh Pollock has taken the drug Brineura, which costs almost $1 million a year, to slow the progression of Batten disease (CLN2), a fatal neurodegenerative disorder.
But on June 18, Osborne announced the province would uphold a recommendation from Canada’s Drug Agency to discontinue coverage of the drug, saying the case had met the discontinuation criteria created in 2019.
Osborne said this week that it’s important to use established scientific medical processes in such cases, and that decisions be made by experts and not politicians.
Charleigh’s parents were set to meet with Osborne on Friday evening, along with neuroscientist and Batten disease expert Dr. Ineka Whiteman, Canadian Batten Disease Support and Research Association president Lori Brown, and Andrew McFadyen of the Isaac Foundation, a Canadian-based charity and patient advocacy organization dedicated to supporting individuals living with rare diseases.
On Thursday, May wrote to Osborne asking that the province continue funding Charleigh’s access to Brineura, but also denouncing what she calls “Big Pharma’s” unchecked ability to charge whatever it wants for treatments and medications.
“It can make obscene profits and exploit urgent, heartbreaking cases like Charleigh’s to build public pressure and compel governments to pay up,” May said.
“The irony is not lost on me: I am now assisting the industry in getting what it wants precisely because Charleigh’s need is so urgent.”
A single-payer system would see the federal government as the main purchaser of medications under the national pharmacare plan, so it could negotiate price and bulk purchasing from a position of strength, said May, who argues it would save lives and avoid billions of dollars in costs.
“Coverage becomes even more imperative for medications such as Brineura with smaller demand as the disease, in this case CLN2, is so rare,” she said.
May noted that Canada remains the only country with universal public health care where all prescription drugs aren’t covered within the health-care system.
The federal government has established a committee of experts to recommend how to finance and operate a national single-payer universal pharmacare program. It’s taking a phased approach to implementation, however, starting with covering contraceptives and diabetes medication and supplies to make them free.
In March, the federal government signed a four-year $670-million pharmacare agreement with B.C., one of four provinces that have signed pharmacare deals with Ottawa.
Nikolas Barry-Shaw of the Council of Canadians, an independent advocacy group, said in an interview on Friday that Canada pays the second-highest price for drugs in the world after the U.S., as a result of a “fragmented and disorganized” system of about 10 provincial drug plans all making separate deals.
A full single-payer system would give the government more negotiating power with pharmaceutical companies, including for high-priced drugs for rare diseases, said Barry-Shaw.
He said pharmaceutical companies charge “outrageous” prices, especially given that much of the groundwork research is funded by public organizations and universities. “I don’t think we can talk about the B.C. government’s decision to fund or not fund this drug without also talking about why a drug like this has an almost million-dollar price tag.”
Expanding the list of drugs covered to create a comprehensive public pharmacare system — one that would cover 87 per cent of all prescriptions — is estimated to cost $15 billion per year in 2027, but would be more than paid back in reduced emergency department costs, lower administrative costs and drug costs, Barry-Shaw said.
B.C.’s health minister has said the decision to discontinue coverage of Brineura is not about money, though Charleigh’s family and physicians have recommended the child stay on the drug.
Though Charleigh is unable to walk and talk, her family says she is responsive and happy, and the drug has slowed the progression of the fatal disease and greatly improved her quality of life.
Children with untreated Batten’s disease have a life expectancy of 10 to 12 years.
Brineura drug manufacturer BioMartin Pharmaceutical has not addressed direct questions about whether the company will provide or subsidize the drug on compassionate grounds.
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