BURST
Former B.C. health minister George Abbott says he probably would have made the same decision as the current NDP government to continue expensive drug coverage for a 10-year-old girl suffering from a rare disease, against the recommendation of a provincial advisory group.
Abbott was health minister in 2007 under the B.C. Liberals when the expert group was established to provide advice to the then-Liberal government on treating patients with expensive drugs for rare diseases.
It was created because the government was starting to have to make difficult decisions on approving the use of the expensive drugs coming onto the market, said Abbott, who retired from provincial politics in 2013.
“It’s one of those difficult situations where you can never really get enough good advice on whether to fund or not,” said Abbott, who was asked by Postmedia to comment on the issue.
“If you’re the sufferer, obviously you want access to the drug regardless of the price. For the broader system, there’s always a challenge finding enough dollars to provide timely and effective service to patients,” he said.
Abbott said the advisory group is “absolutely necessary” but added there may be cases where the government does not accept their advice after weighing evidence about whether the drug has a benefit and confronting the pain and suffering the patient is going through.
Brineura, the drug used to treat 10-year-old Charleigh Pollock’s neurodegenerative Batten disease, costs more than $800,000 a year.
Paul Ramsey, former health minister under the NDP during the 1990s, agreed such decisions are difficult. But he said the government must have the ability to say no to treatment, and should do so even when faced with extreme negative publicity.
He stressed that decisions about somebody with a serious illness are made every day by physicians and institutions. “And people die or get well. So the idea that every medical decision should be public is just counter to the way the system works, and the way I think people want it to work,” said Ramsey, who retired from provincial politics in 2001.
Abbott and Ramsey’s observations come as B.C. Premier David Eby has called for an overhaul of the province’s process to determine coverage for expensive drugs for rare diseases after 10 advisory group members quit over the government’s decision to not follow their advice. Eby said there needs to be some changes to improve transparency and to better serve the public.
Initially, the government backed the advisory group’s decision to halt coverage, saying it should not interfere politically, but then restored coverage in the face of significant public backlash. The advisory group said they recommended stopping treatment because discontinuation criteria was met, beyond which the benefits versus risks of the drug were not believed to be favourable. Pollock’s parents, her physicians, and doctors researching and treating Batten disease in the U.S. disagreed with the B.C. advisory group’s decision.
Ramsey said introducing transparency may be challenging because these decisions conflict with patient confidentiality.
He added the members of the advisory group are also not likely to want to have their names made public and have their inboxes filled up with letters and threats. “It they were to provide good advice, they don’t want to be part of a public dialogue or debate,” he said.
Ramsey was health minister when pharmaceutical companies sued the B.C. government, and him personally, for introducing a so-called reference-based pricing system that limited pharmacare coverage. It essentially designated a reference drug within a class. If a patient chose a more expensive drug, they paid the difference. The province established the Therapeutics Initiative — comprised mostly of practising physicians and pharmacists — to help select the reference drugs.
Ramsey said the profit-incentive of the drug companies and their relationship to patient advocacy groups also makes decisions on government drug coverage difficult.
Abbott noted the only time decision making on expensive rare disease drugs would likely be able to become public is if the patient makes it so.
He said the advisory group system was established after the government had to make some difficult decisions on expensive rare disease drugs, including funding Naglazime for more than $1 million a year for a young patient suffering from a progressive condition that causes many tissues and organs to enlarge, become inflamed or scarred, and eventually waste away.
Abbott said the government decided to fund the treatment, calling it a “heart-wrenching decision.”
While the patient’s family advocated for the treatment, it did not become public as far as he could remember, he said.
Abbott noted the government also took heat for a decision not to fund a cancer drug.
He said he believes these decisions are becoming more difficult because there are more expensive rare disease drugs and they will eat up more of the provincial health budget.
Postmedia reported earlier that spending last year had reached just under $200 million for treatment for 600 people with rare diseases, up from $22 million eight years ago.
In response to Postmedia questions on how the province might make the system more transparent, including how that could happen given it involves medical patients, Health Minister Josie Osborne said this week it’s too early to say what changes may be implemented. “Our goal is a system that is more transparent and responsive, where patients and families feel supported and understand the process, and where committee members have the tools and resources they need,” Osborne said in a written statement.
Dr. Sandra Sirrs, one of the advisory group members that quit, said while she agrees that transparency is important, for privacy reasons there cannot be transparency about individual patient decisions.
There can be more transparency about the process in choosing which drugs to list and which patients will be eligible for those drugs, she said.