The Ontario government has launched its much promoted, publicly-funded pharmacare program called OHIP+, which will provide cost-free access to all prescription drugs in the Ontario formulary for the province’s four million children and young adults.

There are many families who need access to drugs. While no treatments (other than palliative care) exist for 95 per cent of rare disorders, such as epidermolysis bullosa and Moebius syndrome, new drugs are thankfully becoming available that can prevent children from dying at a young age after much suffering or being severely affected for decades. However, when drugs exist for only a few patients, they tend to be expensive with suggested retail prices in the hundreds of thousands of dollars per year. This obviously presents an affordability problem for parents of children with these disorders, including children in Ontario.

But will OHIP+ help these families?

The principal beneficiaries of OHIP+ are the insurance companies that up to now have provided prescription drug benefits for the children of parents enrolled in private plans paid for by the parents or cost-shared with employers or unions. Insurance companies will no longer pay for drugs in the formulary for these children—Ontario taxpayers will. Insurance companies may pass their reduced costs on to their clients in the form of reduced premiums, but the opportunity to retain a windfall may be too strong for them to resist. The other major beneficiaries of OHIP+ are the parents of children without private insurance who do not qualify for social assistance benefits from the Government of Ontario.

OHIP+ will cover prescription drugs in the Ontario formulary, which includes more than 5,000 drug products. This number seems large, but fewer than 700 unique drugs are on the formulary, most of which are available as inexpensive generic products.

In addition to the formulary, there are other programs such as the Exceptional Access Program (EAP) for special-use (often expensive) drugs. The EAP includes nine of 12 drugs for rare disorders that usually manifest during childhood, reviewed during the last 11 years by the Canadian Agency for Drugs and Technologies in Health, which evaluates new drugs for insurance coverage by all federal, provincial and territorial public plans (except Quebec’s). Parents of children with disorders treated by these drugs will be pleased to know that children with an approved EAP request for their use will be covered under OHIP+.

“Approved” is the key word because actually getting access to a drug in the EAP depends on the complexity or harshness of the eligibility criteria established by the Ontario ministry of health that must be met before reimbursement can be obtained. About half of the rare disorder drugs recently added to the EAP have criteria that make access difficult and, in at least one case, access has proved to be almost impossible.

In an April 2017 news release about OHIP+, Premier Kathleen Wynne said the Liberals “are making sure that every young person across the province has access to the medications they need to stay healthy, feel better and live full lives” and that they are “making life more affordable” for parents. Health Minister Eric Hoskins added that access will be improved “by eliminating financial barriers to prescribed drugs.”

Just as no child should be denied an antibiotic for an infection because their parents cannot afford the prescription, no child with a rare disorder should be denied a drug that may prevent a premature painful death or provide a life free of physical or mental disabilities. The fact that rare disorder drugs are expensive makes the need for societal support more crucial.

So, to answer the question—will OHIP+ help families with children with rare disorders?

In some cases. But under OHIP+, access to innovative or soon-to-be-available drugs for rare disorders is limited because either the drugs are not included as a benefit or have restrictive eligibility criteria, which leaves some families in limbo.

Simply put, in Ontario, children with rare disorders and their families deserve accessible financial support for life-transforming drugs by providing easier access to more drugs either through OHIP+ or another program.