On Tuesday October 23, the Canadian Institutes of Health Research (CIHR) New Emerging Team for Rare Diseases and the Global Reporting Centre will host a town hall meeting focused on helping the public understand the economics of treating rare diseases.

The free meeting is being held at  BMO Goldcorp Theatre in Vancouver’s Olympic Village but you must register in advance to attend in person.

The town hall meeting will also be live-streamed at 6:30 p.m. PST at https://www.facebook.com/globalreportingcentre/.

CIHR Rare Disease Team consists of researchers from various institutions that are trying to find a means to “undertake collaborative translational research with the objective of helping to inform the development of drug coverage decision-making models relating to government funding of drug therapy for rare diseases.”

In other words, they hope to develop tools that can be used in Canada, and elsewhere, to assist health planners and decision makers with technology assessment, incentives for innovation, drug pricing, and priority setting. Not an easy task and part of their job is to educate the public on the complexity – financially and morally – in providing people with rare conditions access to drugs that can be very expensive.

Leading the group is Larry Lynd, PhD, professor of Pharmaceutical Sciences at the University of British Columbia. Recently, we talked to Dr. Lynd about the event and the complex problem of trying to balance the needs of pharmaceutical companies to provide increasing value to their stock holders with those of government and insurance payors limited in how much they can afford to pay for orphan drugs.

Dr Lynd said, “We started the project 6 years ago. This was a CIHR team grant to developing Canadian policy relating to rare disease drug reimbursement and one of our objectives was to increase public dialog and get beyond the media-driven decision making dialog where the patient is denied a drug is on the front page of the newspaper where the story is that it is a million dollar drug but there is just one patient.”

But there are a lot of rare disease patients and just focusing on that 1 child that made the news can be misleading.

Dr. Lynd noted, “While having a rare disease is rare, rare diseases are quite common. And the average cost for a rare disease treatment is upwards of $100,000 per year per patient. So for 200 people in BC right now, we are spending over $75 million. So again, the objective of this Town Hall Meeting is to increase public dialog around how do we find way to raise access to effective therapies to patients within an environment of finite health care resources.”

To help explain the complexities involved and engage the public will be a number of key leaders within the rare disease community, including:

  • Millan Patel, MD, clinical assistant professor in the Department of Medical Genetics at the University of British Columbia and co-founder of the Rare Diseases Foundation.
  • Nick Harkins, a student at the University of British Columbia who is being treated with a $200,000 a year drug to manage his rare metabolic disease called MPS1 (Hurler syndrome).
  • Sandra Sirrs, MD, medical director of the Adult Metabolic Diseases Clinic at Vancouver General Hospital who deals with the consequences of inconsistent funding/approval decisions.
  • Bashir Jiwani, PhD, ethicist and director of the Fraser Health Ethics Services.

“And in the audience, we will have representation from the pharmaceutical industry, from health care, from patient groups, and hopefully the general public because we really want the general public to engage in this conversation,’ stated Dr. Lynd.

To register for the free event in Vancouver Tuesday evening, click here.

You can also watch in online starting at 6:30 p.m. PST at https://www.facebook.com/globalreportingcentre/.