Sylvia Jones says new rules simply codify existing policy; patients say they\u2019ve fundamentally altered who qualifies for life-saving treatments abroad<\/p>\n
EDITOR\u2019S NOTE: This article originally appeared on The Trillium<\/a>, a Village Media website devoted exclusively to covering provincial politics at Queen\u2019s Park.<\/p>\n As cancer patients fight to access potentially life-saving treatments abroad, Ontario Health Minister Sylvia Jones is defending the province\u2019s decision to tighten its rules for funding out-of-country drug treatments, saying the changes formalize a policy that\u2019s been in place for years.<\/p>\n \u201cThere’s no doubt as we hear and experience what patients and their families are going through that we all have a lot of empathy and concern,\u201d Jones said. \u201cThe regulation change was really codifying something that has been in place since 2011.\u201d<\/p>\n The health minister was responding on Monday to a question about patients like Sabrina Apitz-Grossman<\/a>, a 31-year-old Ontario woman with stage-four synovial sarcoma who is taking the Ford government to court after it refused to fund a potentially life-saving treatment available in the United States.<\/p>\n The province made regulatory changes to limit who qualifies for out-of-country treatments on the same day Apitz-Grossman filed an application for judicial review challenging Ontario\u2019s refusal to pay for Tecelra, a specialized T-cell receptor therapy that her doctors consider her an excellent candidate for.<\/p>\n The government\u2019s changes limit public funding for out-of-country drug treatments to circumstances where the drug and its administration are already publicly funded in Ontario, but access is temporarily unavailable, and travelling abroad is necessary to avoid death.<\/p>\n \u201cTrying to frame this as \u2018codifying an existing position\u2019 is truly counter to reality, when the criteria themselves have switched from not available in Ontario, to already available in Ontario,” Apitz-Grossman told The Trillium.<\/p>\n \u201cThe circumstances wherein a treatment is ordinarily available in Ontario, regularly funded, but is temporarily unavailable for whatever reason are just so impossibly narrow that it\u2019s hard to see when they would ever apply,\u201d Apitz-Grossman added. \u201cThese changes are taking a last-resort safety net program and limiting the scope so severely that it basically will never apply to anyone.\u201d<\/p>\n The change is retroactive to Oct. 1, 2011, and could affect applications and appeals already underway.<\/p>\n It was made shortly after another Ontario cancer patient, Alex Shved, won a judicial review challenge similar to Apitz-Grossman\u2019s over an out-of-country treatment funding decision.<\/p>\n The government has argued the change protects Ontario\u2019s ability to negotiate lower drug prices and could prevent billions of dollars in additional annual costs to the health-care system. Jones said the province has increased access to \u201cnew and emerging technologies and drug therapies\u201d through programs like Funding Accelerated for Specific Treatments (FAST) \u2014 which fast-tracks public coverage for high-priority cancer drugs.<\/p>\n When asked how the province helps patients with rare diseases, like Apitz-Grossman, who cannot access FAST, and how the government weighs cost savings against someone\u2019s life, Jones said \u201cthese are very challenging decisions \u2014 and they are made by clinicians, surgeons, ethicists and not by politicians.\u201d<\/p>\n More families say they\u2019re being left behind<\/p>\n Since first publishing Apitz-Grossman\u2019s story, The Trillium has heard from several other families struggling to access treatment for rare diseases, including those seeking experimental therapies that are not covered by Ontario\u2019s existing programs.<\/p>\n Azeddine Labiad and Wisal Lahkimi say they have been left to find a way forward themselves after their three-year-old son, Samy, was diagnosed with a rare pediatric neuromuscular disease.<\/p>\n The disease weakens muscles over time, and without treatment, Samy could lose the ability to walk and use his arms as it progresses. The family told The Trillium their greatest hope lies in an experimental gene therapy trial in the U.S.<\/p>\n \u201cWe asked for the out-of-country program, like the one Sabrina is asking for. We got the answer that it does not cover clinical trials,\u201d Labiad said. \u201cI was expecting more from the government. My thinking was, \u2018Once I will find something that will help my son, the officials will be happy and will try to work with me on that.\u2019 But it was not the case, so that was really disappointing and surprising.\u201d<\/p>\n The family has been travelling to the U.S. to meet with doctors on their own dime, and launched a fundraising campaign<\/a> to help cover costs.<\/p>\n