Harris’s plan deserved support

March 7, 2016
  • Waterloo Region Record
  • Mon Mar 7 2016
  • Page: A8
  • Section: EDITORIAL

What a shame that the ruling Liberal party at Queen’s Park used their majority to shut down a call for an all-party discussion of the problems faced by people with rare diseases.

The motion from Michael Harris, Conservative MPP for Kitchener-Conestoga, received support from the New Democratic Party and Harris’s own Conservatives. But it died when the Liberals voted against it last week.

That was a wasted opportunity to make some real progress on behalf of a small, vulnerable and precarious group of people in our province. Those who suffer from a rare disease often go years without being diagnosed. They struggle to find a doctor who understands their condition, treatment that works, and drugs and devices that they can afford. Because of the small number of sufferers, it’s difficult to get new drugs approved, and very expensive to buy them.

Sometimes the government will fund the treatments, sometimes it won’t. In order to stay alive, sufferers have sometimes mortgaged their homes and relied on charity. For example, Angela Massel of Crosshill needs a $16,000 ventilator in order to be able to breathe at night. Because of her illness, her brain doesn’t tell her body to breathe while sleeping. Ontario’s public health system wouldn’t pay for the ventilator. Massel is luckythat her community and church helped with the bill.

Harris has spent the past year travelling around the province to hear from sufferers. He paid almost all the costs out of his own pocket. He deserves the community’s thanks and respect.

Win or lose, Harris got the attention of the Ontario government. It surely isn’t a coincidence that Ontario’s health minister, Eric Hoskins, announced a few days before the vote that it is setting up a clinic for one rare disease, Ehlers Danlos Sydrome, which would offer expert advice to primary-care providers. Hoskins also said he’ll set up a“working group” of experts and patients to see how services for other rare disorders can be improved.

That is progress. But we agree with Harris that it isn’t enough. So-called “select”committees with a mix of government and opposition MPPs that hold hearings and do research are an infinitely better way to advocate for change, and the Liberals know it. The widely praised select committee on sexual violence and harassment, chaired by Kitchener Centre MPP Daiene Vernile, recently completed its work and is a good example of how well MPPs can work together constructively in a non-partisan environment. We need more of that.

There are other advantages to Harris’s proposal that politicians be part of the groups. The committee he envisaged would have conducted much of its business in public. That would have been appropriate, because the discussion belongs to the public: How should a society allocate resources for health care, at a time of spending restraint on one hand and expensive technology on the other? This vital conversation will now be more difficult to have.