SECOND OPINION | Blacked-out information reveals secret world of drug prices

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When Canada's drug price watchdog orderedAlexionPharmaceuticals to lower the Canadian price of one of the most expensive drugs in the world, it was a major decision with important ramifications for the public.

The drug,Soliris(eculizumab), treats two rare blood diseases and it can cost as much as $700,000per patient per year.

The Patented Medicine Prices Review Board (PMPRB), the federal agency meant to ensure the Canadian price of new drugs is no higher than the average of seven comparator countries, has been locked in a long legal battle withAlexionover the price ofSoliris.

This week, thePMPRBfinally issued its decision, ruling that the Canadian price of the drugis "excessive."It orderedAlexionto lower the price and repay "excess revenues"an amount not yet determined that could range between $5 million and $91 million.

Alexionhas announced its intention to apply for a judicial review of the decision.

But there was another aspect to this story that surprised health policy experts when they finally read through the 74-page decision.

There were sections that had been redacted. And it raised the question: what information is being hidden behind those black lines?

CBC News was able to read an unredacted version to find out.

In anemailto CBC News, Sandra Forbes, counsel to the hearing panel, explained that the "version of the decision available on the Board'swebsitehas this information redacted in order to protect confidential and commercially sensitive information of the Respondent and the BC Ministry of Health."

But University of Ottawa law professor AmirAttaran says court proceedings are supposed to be open and callsB.C.'s decision to supportAlexion'srequest for confidentiality "outrageous."

"How can the minister complain that the drug price is too high while supporting the drug company's request to keep secret information about its price?"

It's the extreme version of how cars are sold on dealership lots. The sticker price means nothing because you negotiate from there.- Steve Morgan, University of British Columbia

Steve Morgan, a pharmaceutical policy researcher at the University of British Columbia, says it's indicative of"just what a high stakes game is being played."

"There's deep, deep fear of violating these contracts on the commercial confidentiality of the pricing arrangements," he said.

The result? No one knows what anyone else is paying for an expensive drug.

"It's the extreme version of how cars are sold on dealership lots," he said."The sticker price means nothing because you negotiate from there."

In anemail, the B.C.Health Ministry told CBC News that "publication of the redacted information could cause significant financial harm to the Ministry of Health" and confirmed that it asked for the information to be redacted to comply with confidentiality and privacy agreements made with drug companies includingAlexion.

The unredacted version of the document CBC News was able to read reveals the amount B.C. paid in 2015/2016 for 14 different drugs that treat rare diseases,including how much it paid forSoliris.

It also shows B.C.'s average cost per patient for those drugs. ThePMPRBreport notes the price B.C. paid is "an amount considerably less than the annual average cost ofSoliristo treat adult patients with PNH or aHUS."

(Paroxysmal nocturnalhemoglobinuria(PNH) and atypicalhemolyticuremic syndrome (aHUS) are the two diseases treated bySoliris.)

KristyAnderson, communications director for the B.C. Ministry of Health,said the province only coversSolirisfor the treatment of PNH and only on "an exceptional last resort basis through case-by-case consideration."It decided not to cover the drug foraHUSbased on the advice of two expert panels

"Both of these expert panels recommended that public drug plans not coverSolirisforaHUSdue to a lack of clear evidence of clinical benefit and a significant product cost," Anderson said in anemail.

She saida group of provinces working togetheralso tried to negotiate a lower cost forSoliris"but ended negotiations with the company in February 2016."

• AlexionPharmaceuticals ordered to lower price ofSolirisin Canada
• How drugcompany set price of the world's most expensive drug

Theunredactednumbers also reveal millions of dollars in rebates thatAlexionpaid to the provinces and to a private pharmacy and wholesaler.

Matthew Herder, a health law policy researcher at Dalhousie University in Halifax, says a big problem with the lack of transparency on prices is that other jurisdictions, even other provinces, lack information that might help them negotiate the same price.

"Until we have far more transparency about what provinces actually pay for a given drug, several provinces are likely to overpay," he said.

"So while keeping this information secret for one province might help its negotiations, it hurts the country,and patients across the country,as a whole. And unless we encourage companies to price drugs according to some measure of performance, they will continue to be priced according to what the market will bear."

AlexionPharmaceuticals challenged thePMPRBprocess several times in Federal Court without success. This week in a statement it said it strongly disagrees with the decision.

"If upheld, we believe the Panel's decision will have serious negative implications for future innovations and investments in the development and availability of therapies for Canadian patients with devastating rare and ultra-rare diseases."

Meet Canada's new top scientist

Can the federal government's new top scientist help restore Canada's reputation as a world leader in research?

That's the hope of Mona Nemer, whom the Trudeau government appointed this week as chief science adviser. The position was cut in 2008 by the previous Harper government.

Nemer is a published scientist, a fellow of the Academy of Sciences of the Royal Society of Canada, a member of the Order of Canada, and until recently was the University of Ottawa's vice-president of research. She was also a member of several international advisory committees.

Second Opinion reached Nemer as sheprepares for her new job, which involves providing evidence-based scientific advice to the government. She acknowledged that "Canada has fallen behind other peer countries and it does have implications for the country in terms of competitiveness for global talent and everything else that comes with having the best people in the country."

Her assessment is supported by data contained in a recent independent report, Canada's Fundamental Science Review, which concluded basic science research experienced a 35 per cent decline in resources from 2006 to 2014. That might explain why, for example, scientists in smaller countries such as Switzerland and the Netherlands are starting to get cited more frequently in publications on a per capita basis than those in Canada.

"I think that data in the report is pretty compelling and clear," she said.

While Nemer credits the Harper government for creating the Canada Excellence Research Chairs, she says there frequently wasn't enough cash to support actual research operations, which "basically put more pressure and stress on the system. So as a result, there was a net decrease in the amount of funds available per researcher."

Nemer's appointment means Minister of Science Kirsty Duncan has delivered on one of the key demands of her 2015 mandate letterfrom the prime minister, but significant new research money has yet to back the government's renewed commitment to basic science. Canada's Fundamental Science Review calls for an additional $485 million to fund independent investigator-led research.

Nemer says she believes the government will eventually come through.

"Let's be optimistic," she said.

ReadNemer's response to questions from listeners of CBC Radio's Quirks and Quarks.

Living in the suburbs is a health risk?

Are the suburbs killing us?

Researcher Jim Sallispoints out"scientists hate to make causal attributions," butwith that in mind, he isprepared to say living in the suburbs "is a big risk factor for ill health and early death."

Sallis is a professor of family and preventative medicine at the University of California at San Diego and one of the leading voices in the study of active living, an emerging field of research that studies links between the urban environment and human health.

The objective is to merge research in vastly different areas such as architecture, transportation, public health, urban planning, nutrition and education.

"Researchers work in oncology, or chemistry, or geography or transportation, and crossing those boundaries is difficult," Sallis said.

"In the United States, transportation policy is moving as many cars as fast as possible. So what does that have to do with physical activity? Nothing. So we want to bring those together."

One of the most influential papers in the field was a Canadian study published last year in JAMA that compared obesity and diabetes with the "walkability" of 9,000 neighbourhoods in Ontario. It found obesity rates went up in "less walkable" communities. It also showed a drop in the rate of new cases of diabetes in areas where people were better able to get around by walking.

Essentially it comes down to walking or cycling, simply using human energy to get around.

We stop building new suburbs, which we know are unhealthy. Let's stop building unhealthy places because we have too many of them already.- Researcher Jim Sallis,University of California at San Diego

But how is it possible to reverse 50 years of constructing unhealthy environments?

"First, we stop doing it the old way," Sallis said. "We stop building new suburbs, which we know are unhealthy. Let's stop building unhealthy places because we have too many of them already."

The next challenge, he says, is to retrofit the suburbs, including tearing down shopping malls surrounded by enormous parking lots.

"You bulldoze that, and in that space you can make an entire mixed-use community with shopping, offices, residences, all where you had one shopping centre."

Building codes that force stairs to be hidden behind doors rather than out in the open where they can be seen and used is another example of something that needs to change.

An annual Active Living Research Conference brings the fields together. The next one will be held in Banff, Alta., in February.

A recent workshop at the National Academy of Medicine highlighted the relationship between the built environment and obesity.

Watch a documentary by CBC's Chris Brown about the health risk of cities.

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