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Accessing CF Medicines through Private Health Insurance
For most people in Canada, the public health system only covers basic medical services. To gain access to additional health services and products (e.g. prescription drugs and medications), you must either pay out-of-pocket, or acquire additional coverage that will cover the cost of these supplemental services or products.
More than one third of Canadians access drugs and therapies through private insurance, making it an important channel for access to drugs. Some of these people are Canadians with cystic fibrosis. Navigating drug coverage through Canada’s private health insurers can be complex and challenging.
Accessing drugs through private insurance
To gain access to health medications, devices and services not covered by the public health system, people must m pay out-of-pocket and/or acquire additional coverage to cover some or all of these costs. According to the Canadian Institute for Health Information (CIHI), of the 36% of Canadians that have private coverage, 99% receive coverage through employee or group benefits plans. Employers purchase these plans and determine the terms of the plan for their employees. Some plans provide options to also cover the employee’s dependents. Some plans allow employees and/or their dependents to opt of their plan if comparable coverage is available. Sometimes opting out of or into a plan has a cost.
There are a number of factors that determine whether a drug will be covered, including but not limited to: internal and external prior authorization issues, the size/number of people the plan covers, ability to pay without increasing premiums, and other considerations. However, plans should also be considering the impact game-changing drugs like Trikafta has on individual employees and their ability to contribute to the workplace and broader society.
Navigating private drug coverage
With Trikafta and other transformative drugs for rare diseases becoming more widely available through both public and private drug plans, a number of critical access issues have emerged. While some private insurers are funding Trikafta for those who need it, others in the community are experiencing challenges in accessing the drug through their private employee or group benefit plans, and some are experiencing challenges in accessing public coverage because they live in jurisdictions that don’t coordinate private plans with public programs well.
There are a number of steps you can take to determine if they have private coverage for a specific medication:
How to find out if the medication is covered
- Work with your CF clinician, nurse and/or pharmacist on any paperwork and processes that need to be completed for consideration of coverage.
- Visit your online group benefit plan portal or phone your group benefit plan to determine the extent of your coverage
- Contact The Vertex Village to assist with determining and advocating for coverage:
What to do if your treatment isn’t covered by private health insurance:
- Ask your Human Resources manager to contact the insurance company and request treatment coverage.
- If your employer has purchased a drug plan that does not cover your prescribed medication, ask if there is an option of making an exception for this medication in this instance.
- Call the insurance company directly and request coverage or ask how you can appeal the decision.
- Ask your physician to write a letter of appeal to the insurance company regarding the impact this therapy can have on you and/or your loved one’s health
- If you are part of a patient support group, ask if others have had a similar experience to yours and find out how they went about obtaining coverage.
- If your group plan still won’t cover the drug, ask for a formal denial letter so that you can apply for public coverage. Public coverage and the requirements around public coverage vary in jurisdictions across Canada.
Navigating Private and Public coverage
In some cases, people use a combination of both public and private plans to access the drugs and treatments they or their family member needs Provincial and Territorial public drug programs also have an impact on private insurance coverage, as each program can vary slightly, and in many cases can coordinate with private insurance plans differently. The “coordination of benefits” is a process whereby payments are coordinated through two or more drug plans (public and/or private). One plan is considered the primary insurer. The primary insurer is defined in the policies of the insurance plan/drug program. The portion of the drug cost not paid for by the primary insurer is claimed through the secondary insurer.
Please watch for more information to come on how each public drug program works with private plans to coordinate benefits.
How Cystic Fibrosis Canada is taking action
In December 2021, Cystic Fibrosis Canada wrote to several of Canada’s largest private insurers, urging them to complete any administrative reviews or processes and fund Trikafta for all Canadians who can benefit from it.
In May 2022, we sent a similar letter to these companies soon after Trikafta was approved by Health Canada for children aged 6-11 years old, again calling on them to provide access to Trikafta as soon as possible.
Resources to help you communicate with your private insurance provider
Cystic Fibrosis Canada has created a private insurance toolkit to support members of the cystic fibrosis community who wish to communicate with your private insurer.
If you are having trouble getting coverage of CFTR modulators, such as Trikafta, under your private insurance company there are a couple of actions you can take to self-advocate.
With the support of Cystic Fibrosis Canada’s private insurance toolkit (see below), we suggest that you contact your private insurer and email them and draw upon the evidence provided in the three CADTH submissions. This will give you an evidence-based approach to demonstrate the impact Trikafta has and substantiate your claims that this drug is needed now. You can also attach the open letter from Kelly Grover and the Clinical Guidelines to provide further guidance on the best ways they can help their clients living with cystic fibrosis.
- An open letter from Cystic Fibrosis Canada to Canada's private insurers, calling upon them to act now for Canadians who need Trikafta
- Cystic Fibrosis Canada’s submission to CADTH
- The CFCanAct clinical trial network’s submission to CADTH
- The Cystic Fibrosis Canada Health Care Advisory Committee submission to CADTH
- Canadian Clinical Consensus Guideline for Initiation, Monitoring and Discontinuation of CFTR Modulator Therapies for Patients with Cystic Fibrosis, a guidance document prepared by experts in cystic fibrosis care in Canada.
Please reach out to firstname.lastname@example.org if you have any further questions.