Daniel and Nathan are 8 year-old twin brothers with a rare and potentially lethal disease. Prior to receiving a new treatment that blocks an overproduced chemical in their immune system, they experienced frequent hospitalizations for joint swelling and pain, rashes, swollen red eyes and poor weight gain. They were also unable to walk, run, or play with friends. Unfortunately, this new drug comes with a large price tag, in excess of $200,000 per year. Prior to OHIP+, the twin’s private drug plan covered 100% of the cost of this drug, with no lifetime maximum.
On January 1, 2018, OHIP+ 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. Their private insurer required their parents to apply to the Exceptional Access Program through the Ministry of Health in order to have the drug covered by the new OHIP+ plan. Since this expensive drug is approved by Health Canada for the twin’s rare disease, the drug was approved, and the Ministry of Health has been paying for the drug over the past 15 months, with no out-of-pocket costs.
Imminent changes to OHIP+ on April 1st will revert back, so private insurers will be the first payer for all drugs. Patients without any private insurance will continue to have OHIP+. For many Ontarians with private insurance, circumstances changed over the past year. In the twin’s case, their private insurer changed the terms of their coverage. They now have a $25,000 yearly maximum per child, which only covers a fraction of the cost. Under the new OHIP+ rules, any child with “inadequate” private insurance will need to apply to the Trillium Drug Program to cover the “gap” in funding. Inadequate private insurance leads to significant out-of-pocket costs either due to a low annual cap, a low percentage of coverage, or coverage of a limited number of drugs.
The Trillium Drug Program is complicated and convoluted. It requires the parents to report household income, and the application process is long and difficult to navigate. Once submitted, it can take between 4-6 weeks before a quarterly deductible is assessed. The quarterly deductible for the twins is $1000, which will be an economic strain, as it would be for most households. The gap while waiting for Trillium approval means families pay out of pocket for the drugs and then submit receipts – this is a huge financial burden that can 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!
There appears to be a rush to implement these changes and so many families are unaware that they will be losing OHIP+. Healthcare providers are now scrambling to notify patients of these changes and trying to determine which patients will need to apply for Trillium in the absence of any clear direction from the Province.
We predict chaos and confusion on April 1st with a likely spike in emergency room visits and hospital admissions due to patients’ inability to access their necessary medications, and complications from going without treatment. Significant responsibility is being placed on the pharmacist to identify families with private insurance and to determine if a family is telling the truth, or not divulging that fact since the coverage is likely inadequate to cover the medication cost.
It is important for the Province to listen to the advice given by Ontario’s healthcare providers during the consultation period. “KEEP IT SIMPLE” was a consistent theme, since this will benefit all children and youth under 25 years old. 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/incomplete coverage. This structure would take the Trillium Drug Program “out of the equation” for families with significant out-of-pocket costs. The fact remains that with these new changes, Ontario children and their families will undoubtedly suffer the consequences.
Dr. Deborah Levy, MD MS FRCPC, Vice President – Pediatrics, ORA
Dr. Jane Purvis, MD FRCP(C), ORA EAP Committee Lead
Dr. Henry Averns, MB ChB FRCP (Lond), FRCPC, ORA President