Daniel and Nathan are eight-year-old twin brothers with Muckle-Wells syndrome, a rare and potentially lethal disease. Prior to receiving a new drug that blocks an overproduced chemical in their immune system, they regularly visited the emergency department and were hospitalized for joint swelling and pain, rashes, swollen red eyes and poor weight gain. They were also unable to walk, run, or play with friends. After starting the medication in March 2017, they transformed into happy young boys, who are able to play and ride bikes just like all of their friends, and they are finally growing and gaining weight.
Unfortunately, this new drug comes with a large price tag, in excess of $200,000 per year. Initially, the twins’ private drug plan covered 100 percent of the cost, with no lifetime maximum.
On January 1, 2018, the previous Ontario government introduced OHIP+, which became the first payer of drugs for almost all Ontarians under 25 years of age. This new coverage model changed how the twins accessed and paid for their life-changing treatment. Since the drug is approved by Health Canada for the twins’ rare disease, OHIP+ paid for it, with no out-of-pocket costs to the family.
But changes to OHIP+ that began on April 1 have made the family’s access to the twins’ drug more complicated. While the changes do not affect Ontarians under 25 years old who have no private drug insurance—they continue to have OHIP+—those with any private drug insurance are no longer covered by the plan. Private insurance plans (which are usually employer-selected plans) are again the first payer for all drugs, and families must apply to the Trillium Drug Program for any gaps in coverage. This application is long, requires accurate income information from the prior year, and is difficult to navigate for many families. Once an application is submitted and processed (7–10 business days for a correctly completed application), a quarterly deductible is assessed for each family.
For many Ontarians with employer-selected private insurance, circumstances have changed over the past year. In the twins’ case, the terms of their coverage changed. They now have a $25,000 yearly maximum per child, which only covers a fraction of their drug costs. Under the new OHIP+ rules, the family applied to the Trillium Drug Program to cover the remainder of their costs, and their quarterly deductible was determined to be $1,000. This amount is a significant economic strain for the family, as we are sure it would be for most households. Furthermore, the gap while waiting for Trillium approval means that families must pay out-of-pocket for the drugs and then submit receipts. This will create situations where children go without these life-changing medicines. How can we allow this to happen? A simpler system is needed to protect Ontario’s children!
In the apparent rush to implement the changes to OHIP+, many families were unaware that they would be losing access to the program. Health care providers scrambled to notify patients of the changes in order to determine which patients needed to apply to the Trillium Drug Program. We predict a spike in emergency room visits and hospital admissions due to some patients’ inability to access their necessary medications, and complications from going without treatment. Significant responsibility is being placed on pharmacists to identify which families have private insurance and to help guide them through the process of accessing coverage for the drugs their children need.
It is important for the province to listen to the advice given by Ontario’s health care providers during the consultation period on the proposed changes to OHIP+ (which ended February 1, 2019). “Keep it simple” was a consistent theme. For children and youth without private insurance, we agree that OHIP+ should continue to cover their drugs. For children and youth with private insurance, those insurers should be the first payer, but to simplify the system and ensure access for everyone, OHIP+ must be the second payer for those with insufficient or incomplete coverage. This structure would take the Trillium Drug Program “out of the equation” for families with significant out-of-pocket costs. The fact is that with the new changes as they’ve just been introduced, Ontario children and their families will undoubtedly suffer.