Patient groups should be playing a central role in Canada’s health-care system, advocating for their members by promoting the visibility of their conditions, pushing for more rapid and accurate diagnoses and lobbying for the introduction and funding of new treatments and drugs that may help relieve their members’ symptoms and extend their lives.

However, all of this requires resources. In the past, groups could turn to the federal government for funding, but that option .

Pharmaceutical industry funding

In response, patient groups looked to the pharmaceutical industry to be able to continue functioning. How much money Canadian groups get from drug companies is largely unknown.

Neither the federal government nor the major industry association, Innovative Medicines Canada (IMC), require companies to report on payments to groups and similarly there are no rules saying that patient groups must reveal who gives them money or how much. Even if groups are registered charities, that type of granular information is not collected in reports they have to file with the Canada Revenue Agency.

There is one source of partial information that has not been investigated until now. Since 2016, six companies have voluntarily released detailed annual statements about which groups they give money to and the value of those payments — , , , ,  and .

I have analyzed the available reports from these companies. Because pharma companies have a history of trying to buy influence — a topic I’ve researched extensively — it’s important to look at what and who they are funding. All told, from 2016 to 2023, they gave more than $30 million in 671 separate payments to 263 groups. The $30 million figure is a minimum because not all of the six companies report in any individual year. There are also an additional  that don’t file any reports. (Teva does not belong to IMC.)

The median amount that a patient group received was $26,000 but that number hides the extremes. The  received a single payment of $250 in 2023 from Novartis whereas the , based in Montréal, got over $4.5 million from Roche and Sanofi between 2020 to 2023. Fourteen groups accounted for almost one-half of all payments groups received. Although Novartis only reported in three years (2021-23) it gave the largest amount of money, over $7.5 million.

Conflicts of interest

Receiving money creates a conflict-of-interest (COI), where a COI is  (now the National Academy of Medicine) as “a set of circumstances that creates a risk that…judgment or actions regarding a primary interest will be unduly influenced by a secondary interest.” In this case, that would mean that the patient group was looking out for the interests of the drug company that gave it money as opposed to the interests of its patient members.

However, just because groups received money from drug companies does not necessarily equate to the positions and actions that they took. There is a wide range of positions taken by patient groups that have received pharma funding, and when their positions align with those of their sponsors, these associations do not establish cause and effect.

The Canadian Organization for Rare Disorders that received just shy of $450,000 between 2018 and 2023 from a combination of GlaxoSmithKline, Novartis, Roche and Sanofi has  that potentially creates the first steps to a universal, first-dollar coverage pharmacare plan.

, including  and , lobbied  to try to stop the board from instituting reforms to how it regulated drug prices. Save Your Skin Foundation got just over $750,000 in drug company money and Myeloma Canada got $831,000.

Some groups that take drug company money do not necessarily align with the interests of their funders. The president of the  (CSA)  organized by Janssen and AbbVie because he refused to sign off on a report claiming that patients were strongly opposed to switching from the medication Humira, sold by AbbVie, to a less expensive biosimilar.

 (ACE) used to receive grants from Janssen and AbbVie until it also . (CSA received over $100,000 from Merck and Novartis, while ACE $267,000 from Merck and Novartis as well as Teva.)

How pharma funds buy influence

Pharma companies have a history of offering funding and other resources that have been , which has extended the reach of pharma companies’ interests into . Funding patient groups may be another strategy to further extend the reach of those interests, which do not always align with those of patients and the public.

As a first step in trying to determine whose interests patient groups align with, we need more transparency about the source of their revenue. The  requires that member companies disclose on their websites a list of patient organizations to which they provide financial support, the amount of the payment and a description of the nature of the support or services provided.

However, a  concluded that the EFPIA code fails to ensure transparency and compliance. EFPIA allows national industry associations the freedom to determine how its code will be implemented and how much oversight is required, leading to disparate transparency practices. EFPIA has not created a disclosure template to standardize reporting. Finally, EPFIA’s code does not apply to companies that are not members.

Industry codes are not the answer.

Before the Ontario election in 2019, the government was finalizing regulations for  that required all drug and device manufacturers to disclose payments to patient groups. The  when the government changed post-election. The federal government should pick up the mandate on this issue and pass similar legislation to make reporting mandatory on a national basis.

By , professor emeritus of health policy and management, 91��ɫ.

This article is republished from��.��

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Students will be trained to meet scientific and engineering challenges of tomorrow, drive and support pharmaceutical drug discovery and vaccine development in Canada

TORONTO, April 18, 2023 – As one of today’s recipients of a Natural Sciences and Engineering Research Council of Canada (NSERC) grant worth $1.65 million over six years, 91��ɫ’s Distinguished Research Professor will lead a team of researchers and industrial leaders in training the next generation of technologically advanced graduates.

Master’s and PhD students will graduate from 91��ɫ with the technical and managerial skills to take on leading positions in new entities to capitalize on disruptive technologies that could impact Canada’s research and development in the pharmaceutical industry.

“This grant will help train our students to become highly qualified personnel ready to meet difficult scientific and engineering challenges, while also helping to drive and support pharmaceutical drug discovery and vaccine development in Canada,” says 91��ɫ Vice-President Research and Innovation Amir Asif. “This NSERC CREATE program taps into 91��ɫ’s expertise in bioanalytical methods and instrumentation and the University’s commitment to purposeful research. I congratulate Sergey Krylov on his successful application and collaboration.”

NSERC announced the winners of the CREATE program earlier today designed to give Canada’s researchers of tomorrow, not only improved mentoring, but a better training environment.

The NSERC-funded industrial stream Technology-Enhance Pharmaceutical Discovery (TEPD) program at 91��ɫ, designed with industry input, will bring together some of Canada’s leading academics working on technological aspects of pharmaceutical discovery along with major companies driving or supporting this country’s pharmaceutical research and development.

“Big pharma is continually shifting tremendous costs and risks associated with pharmaceutical discovery to small-venture players, changing the landscape of pharmaceutical discovery in Canada,” says Krylov of the Faculty of Science. “The pressing needs of Canadian pharmaceutical research and development were what motivated our academic and industrial team members to come together to create a comprehensive training ecosystem capable of making a difference in this industry at the national level.”

The goal of this program is to enhance Canada’s global economic competitiveness by fueling innovation in the pharmaceutical industry, a sector of the economy which creates more research and development jobs in Canada than any other industry.

Trainees will conduct collaborative research in one of the seven pharmaceutical-discovery research themes, like the stages involved in pharmaceutical discovery used by developers of drugs, biologicals and vaccines. They will work with leading-edge technologies that could lead to potential drug discovery and vaccine development through the design and synthesis of DNA-encoded libraries (DELs), the selection of hits from DELs and their validation.

The program is comprised of collaborative research, joint seminars, summer school with hands-on and in-classroom workshops run by instructors from academia and industry to advance soft and professional skills of the trainees, summer research conferences and industrial internships in the research and development labs of the four industrial partners in Canada or the United States.

Students will graduate with superior industrial and academic research expertise, ready to meet the scientific and engineering challenges of Canada's new research landscape.

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Method could reduce costs for pharmaceutical, industrial and tech industries

TORONTO, April 22, 2019 – 91��ɫ chemists have invented a new fluorescence-based method for accurately determining the strength of a range of Lewis acids, which could one day be used to help purify pharmaceutical drugs, improve industrial processes and explore next-generation technologies, according to a new chemistry study.

Measuring the Lewis acidity of molecular species is important because it allows chemists around the world to establish the utility of new compounds to facilitate chemical transformations for a range of applications.

The team of six 91��ɫ researchers developed a new method of testing for Lewis acidity using fluorescence, which is simpler, more accurate and more effective than the commonly-used Gutmann-Beckett method.

The finding, published today in the journal , could lead to improved and cheaper processes for the pharmaceutical and chemical industries.

“The pharmaceutical industry is always looking for optimized processes to make new drugs and find new chemicals,” said , professor in the Department of Chemistry, Faculty of Science, and Canada Research Chair in Organomain Group Materials. “Our method provides a valuable tool to help develop these processes,” said Baumgartner, who co-led the study.”

The theory of acids and bases has long been a key concept in chemical sciences. The Lewis acid-base theory, which defines acid by the ability of a molecule to accept electrons, has become increasingly important for chemistry in the 21st century, mostly in the areas of metal-free catalysis and materials science.

The team of chemists believe their Fluorescent Lewis Acid-base Adduct (FLA) method to be the first of its kind to quantify a wide variety of Lewis acids and provide the ability to visually observe differences in Lewis acid strength. They expect this technique to replace the widely used Gutmann-Beckett method, which is prone to errors.

“Until now, there has been no unifying thread to determine the strength across different species,” said , assistant professor in the Department of Chemistry, Faculty of Science, and Canada Research Chair in Metal-Free Materials for Catalysis,�� who co-led the study. “Some Lewis acids are charged, some are neutral, some are based on metals, some are based on non-metals and they cover the entire periodic table. With our method, we can compare across all these different species and all across the periodic table. As new chemistry and new Lewis acids are developed, our method allows you to quantify and compare all the strengths across the board, which could be very impactful.”

The research team was also composed of postdoctoral fellow Joshua Gaffen, graduate student Jordan Bentley and undergraduate research assistants, Lucas Torres and Carmen Chu. The chemists determined the strength of Lewis acids through the use of fluorescent phosphole oxides, by generating fluorescent Lewis acid-base adducts (FLAs) with distinctly altered fluorescence and colouration properties. They used fluorescent probes exposed to a Lewis acid, which changed their colour, and conducted scientific analysis using a commission internationale de l'éclairage (CIE) diagram, a tool which the illumination industry uses to define colour. They then used that definition of colour to determine the strength of a Lewis acid.

Funding for the study was provided by the Natural Sciences and Engineering Research Council of Canada, the Canada Foundation for Innovation and the Canada Research Chairs program.

91��ɫ champions new ways of thinking that drive teaching and research excellence. Our students receive the education they need to create big ideas that make an impact on the world. Meaningful and sometimes unexpected careers result from cross-disciplinary programming, innovative course design and diverse experiential learning opportunities. 91��ɫ students and graduates push limits, achieve goals and find solutions to the world’s most pressing social challenges, empowered by a strong community that opens minds. 91��ɫ U is an internationally recognized research university – our 11 faculties and 25 research centres have partnerships with 200+ leading universities worldwide. Located in Toronto, 91��ɫ is the third largest university in Canada, with a strong community of 53,000 students, 7,000 faculty and administrative staff, and more than 300,000 alumni.

91��ɫ U's fully bilingual Glendon Campus is home to Southern Ontario's Centre of Excellence for French Language and Bilingual Postsecondary Education.

Media Contact: Vanessa Thompson, 91��ɫ Media Relations, 647-654-9452,��vthomps@yorku.ca

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