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.
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On April 2 I went to get a new aerochamber for my daughter who has asthma. I was told that due to the changes in OHIP+ that took place the previous day, we would have to pay out of pocket. We do have private insurance, but it doesn’t cover aerochambers. I even called them to ask if they would cover it with a doctor’s prescription, nope, they don’t cover them under any circumstances. My family currently “opts in” for family coverage on my husband insurance plan offered through work. Next year, we will opt out because it’s not worth it for us to pay the monthly fee and have less coverage than we would have if we were eligible for OHIP+ (we pay a deductible of 10$ or more on each prescription as well). Are there any petitions we can sign to tell the government we want OHIP+ to be the second payer?
When OHIP + was introduced, the OMA and many physicians complained about it. But wasn’t that better than the previous system of no coverage? And not physicians continue to complain. Whining by physicians who earn tons of money is simply quite tiresome.
This isn’t whining. The physicians are simply trying to discuss a real issue with this change and how it affects patients requiring expensive biological. I call this being a patient advocate. I also wish they could have default OHIP + as a second coverage plan. But this also creates logistic challenges as various drug plans are set up differently, administered differently. Some require payment upfront and submit for reimbursement and there are plans that can be submitted electronically. This makes coordination of benefits challenging at a pharmacy level. So it’s easy to default to keeping things simple but it hurts this population who relies on high cost medication. I also agree the insurance company in this case should not have changed their coverage but I think there is a clause that they can change at anytime with notice.
There are even better solutions. First, make the drug companies justify their prices by having them open their books and show what the development costs for drugs actually are. Second is a national pharmacare program that covers all medically necessary drugs (as determined by an independent panel of healthcare professionals, economists and consumers) for everybody for with no copayments.
Thank you for this informative article. However, it seems to me that the real issue is that the private insurer “Initially… covered 100 percent of the cost” but”now have a $25,000 yearly maximum”. This is a drastic reduction in coverage for a medicine used to treat a rare disease and someone (the employer and insurer) should be accountable for having agreed to or made this change. It would be very interesting to know if this is an isolated incident or if there is a larger pattern of insurers reducing coverage limits after the implementation & changes to OHIP+. I personally believe that it was a ridiculous financial decision to make OHIP+ the “first payer” – Ontario’s healthcare dollars can be better spent than paying something that was already being paid for by private insurance. However, I now much have a much better appreciation for the chaos that that the recent changes have caused… so thank you!
As a Social Worker in the field of educating patients about government drug plans, this is definitely a problem that needs to be addressed. The private insurance should’ve gone back to original coverage rates for the twins after OHIP changed the rules of drug coverage. For adults I support taking expensive biologic medication, I suggest asking their Rheumatologist to apply to the Exceptional Access Program (EAP) for complete government drug coverage, or with assistance from the Insurance company. Is this option available to these children? I don’t know what medication their on of course or if there is an age limit to the EAP?
Thanks for your comments. To clarify, EAP approval does not equate to full government drug coverage. EAP approval is sought for most of the biologics we use in children. EAP approval is required for OHIP+ to pay (for those who are otherwise uninsured) fully without copay. But for those with any private drug coverage, EAP approval requires an application to the Trillium Drug Program for coverage. As above, The Trillium Drug Program will then assess the deductible required to be paid by the family.
Thanks for the shoutout to pharmacists in this piece. The reality is that front-line pharmacists have been raising concerns for months around the administration of OHIP plus, but no one seems to pay attention to pharmacists. The advocacy organization for pharmacists in Ontario have also been cozying up to big pharma and government in order to survive funding cuts. Again, no one listens to front line pharmacists. When no one listens to front line pharmacists, stuff like this happens. When our society and health care system decides to value the knowledge, skills and expertise of pharmacists, then we will all be better served.