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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.
COORDINATION OF BENEFITS WEB RESOURCES
Canadians with cystic fibrosis sometimes use a combination of public and private drug plans to cover some or all of their medication costs. Provincial and territorial public drug programsalso have an impact on private insurance coverage, as each program is different and somecoordinate with private insurance plans better than others. Coordination of benefits is a process through which 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 one’s private insurance plan. Public drug programs also define who the primary insurer is. The primary insurer is also known as the first payer on insurance claims, while secondary insurers are the second payers on claims.The portion of the drug cost not paid for by the primary insurer is claimed through the secondary insurer.Below is information about each province and territories’ public drug programs and how they coordinate benefits with private insurance plans.
Provincial and Territorial Drug Plans and Private Insurance
Administered through Alberta Blue Cross, the predominate public drug program in the province is the Non-Group Coverage plan. It offers supplemental drug coverage for medicines not covered under the Alberta Health Care Insurance Plan (AHCIP) – which only covers medication in hospital – for all residents under the age of 65 eligible for AHCIP.
This plan charges a monthly premium, co-payment, and annual deductible. There is also a subsidy program for Albertans with lower incomes.
Coordination of Benefits:
Alberta Health allows coordination of benefits between Alberta Blue Cross non-group plans and private plans. The payment is shared pursuant to the Canadian Life and Health Insurance Association rules regarding coordination of benefits.
The pharmacy will bill the public plan first (i.e. Non-Group Blue Cross or any of the others listed), then will bill private plans.
The Specialized High Cost Drug Program provides funding for drugs used in highly specialized procedures, such as organ transplants and major heart surgeries.
Pulmozyme and hypertonic saline are covered under this program for all adults with cystic fibrosis.This program is available to all Albertans in addition to basic health services. Speak with your clinician to inquire about enrolling.
The EDRD Program is independent of PharmaCare. The EDRD funds expensive medications, including Kalydeco and Trikafta, on a case-by-case basis for people meeting defined eligibility criteria.
Medications approved for EDRD coverage are covered 100% with no deductible.
Description: The EDRD pays last, meaning that private insurance and other sources of funding must be exhausted before EDRD funding can be accessed.
The Cystic Fibrosis Drug Program (PharmaCare Plan D) is a cystic fibrosis-specific formulary that includes pancreatic enzymes, vitamins, nutritional supplements, and sterile water or saline solutions.
Under Plan D, digestive enzymes are covered 100%, but other formulary products are subject to PharmaCare deductibles and maximums. Deductibles and maximums are based on individuals’ income.
The Fair PharmaCare program (Plan I) provides coverage for eligible prescription medications to all BC residents. Medications on the Fair PharmaCare formulary are subject to deductibles and maximums. Deductibles and maximums are based on individuals’ income.
Description:
PharmaCare does cover individuals who have supplemental health plans (usually private insurers). These insurers may pay costs not covered by PharmaCare (such as amounts under the Fair PharmaCare deductible). PharmaCare does not coordinate or direct supplemental health plans as to who or what the private insurers cover.
Pharmacare is a drug benefit program for eligible Manitobans, regardless of disease or age, whose income is seriously affected by high prescription drug costs.
Pharmacare is income based, which means a deductible is calculated based on the total adjusted family income. Once the yearly deductible has been reached through the purchase of eligible prescription drugs at a pharmacy, Pharmacare will pay 100 per cent of eligible prescription costs for the remainder of the benefit year.
Pharmacare sets your deductible based on your adjusted family income. The total family income is adjusted to include a spouse and the number of dependents, if applicable.
Description:Contact Manitoba health Non-Insured Benefits for more information.
New Brunswick’s Cystic Fibrosis Plan provides coverage for eligible New Brunswick residents who have been diagnosed with cystic fibrosis if they do not have coverage for any portion of the cost of cystic fibrosis drugs from any other drug plan.
The Cystic Fibrosis Plan has an annual premium of $50 and a copayment per prescription. The copayment is 20% of the prescription cost up to a maximum of $20. There is a maximum copayment amount of $500 per family unit per plan year (July 1st to June 30th).
Only covers six drugs for specific rare diseases, none of which are cystic fibrosis.
Description: N/A
Coordination of Benefits: N/A
For more information, contact::
A prescription drug plan that provides drug coverage for uninsured New Brunswick residents who have an active Medicare card.
The program charges premiums and copayments that are calculated based on the annual family income. All plan members must also pay a 30% copayment up to a maximum amount per prescription.
Description:
The New Brunswick Drug Plan is a payor of last resort and coordination with other drug coverage is not permitted. This means, the New Brunswick Drug Plan will only consider coverage for drugs listed on the New Brunswick Drug Plan Formulary when those drugs are not listed on the private plan formulary for the condition (indication) prescribed or are no longer reimbursable because a private plan annual or lifetime maximum has been reached.
The Nova Scotia CF Plan covers all medication and equipment for CF Patients. The drugs are dispensed through the Metro Dispensary located in the IWK Health Centre. There is no cost to families. Families are registered by the CF Clinic.
NS Pharmacare covers the CF Modifiers Kalydeco, Trikafta, Orkambi if there is no private coverage available. No co-pay.
Description: N/A
Coordination of Benefits:
For more information, contact::
The Nova Scotia Family Pharmacare Program is a provincial drug insurance plan designed to help Nova Scotians with the cost of their prescription drugs. The Program offers protection against drug costs for families who have no drug coverage or if the cost of the prescription drugs becomes a financial burden to them.
The Program has annual family copayment and deductible maximums that are set depending on a family’s size and annual income.
Medavie Blue Cross administers the program.
Description:The Nova Scotia Family Pharmacare Program is the payer of last resort. This means that one’s private insurance would be the first to pay any claim. Any portion unpaid by private insurance would then be sent to Family Pharmacare for coverage.
The Select Needs Plan provides 100 per cent coverage for disease specific medications and supplies for residents with Cystic Fibrosis and Growth Hormone Deficiency.
No application is necessary. When the Department of Health and Community Services is notified by Eastern Health that a client has been diagnosed with Cystic Fibrosis or Growth Hormone Deficiency they are given eligibility to the benefits offered under this plan.
Description:NLPDP is the payer of last resort. Beneficiaries are required to first exhaustprivate insurance plan limits before seeking reimbursement from NLPDP.
A public prescription drug plan for people who don’t have access to a private plan.
All Quebec residents are required to have prescription drug insurance coverage through a private plan (e.g. group insurance or employee benefit plan).If they don’t have/cannot obtain coverage under a private plan, they must register with RAMQ’s Public Prescription Drug Insurance Plan, which charges a premium (which is income-sensitive), co-payment, and deductible.
In either case, no person in Quebec will pay more than $1,161/year(note: this amount is subject to government regulated annual price increases)
Description:
There is no coordination of benefitsrequired as people cannot be on private and public insurance plans at the same time. They must be on one or the other.
However, beneficiaries must be registered with RAMQ’s Public Prescription Drug Insurance Plan if their private plan provides supplemental coverage only. Supplemental coverage does not replace the mandatory basic coverage of the public plan; it only adds to it. In this case, the public plan is considered the first payer and the private plan is the second payer.
OHIP+ provides over 5,000 prescription medicines at no cost for any Ontarian aged 24 years or younger who is not covered by a private plan. Eligible Ontarians with valid OHIP health cards are automatically enrolled in OHIP+.
Those with private health insurance coverage of anykind (including a healthcare spending account) are ineligible for OHIP+ and may try applying for drug coverage through another Ontario Drug Benefit program. Otherwise, one would need to remove themselves or their children from their private drug plan in order to access OHIP+.
Description:Patients aged 24 and younger who have any sort of private health insurance plan are not eligible for OHIP+. Therefore, no coordination of benefits is required.
The Ontario Trillium Drug Program (TDP) helps Ontarianswho do not have an insurance plan that pays for 100% of their drugs. The TDP assists in paying high prescription-drug costs relative to household income. The program charges a deductible that is generally equal to approximately four per cent of after-tax household income.
(NOTE: Private insurance cannot cover one’s Trillium deductible, this deductible must be paid out-of-pocket.)
Description:
Private insurance is the first payer and the TDP is the second payer.
TDP will only become first payer if patients requests that TDP does so in one of two situations: 1)private insurance is exhausted/maxed out either in full or for the particular drug in question, or 2)private insurance does not cover the drug in question.
In either case the patient must submit documentation (e.g. denial letter) to prove this is the case.
The Ontario Drug Benefit (ODB) program helps Ontarians pay for the cost of prescription drugs. Individuals automatically qualify for the program when they turn 65 years old.
Covers the full cost of approved prescription and non-prescription cystic fibrosis medications.
Description: N/A
Coordination of Benefits: PEI Pharmacare
For more information, contact::
The Catastrophic Drug Program helps Islanders with the cost of eligible prescription medications and caps theamount of money paid in one year for prescription medications, based on their household income.
Pharmacare clients with private drug insurance pay the lesser of:
(1) 20% of the Pharmacare copayment as determined by those without private drug insurance; or
(2) the prescription balance after the insurance payment.
Pharmacare covers the balance of the eligible prescription cost after the client and insurance payments are applied to the prescription.
Description:
Public drug programs are the payer of last resort. Any residents using a public drug program who are also members of a private drug insurance program must have their private insurance billed first and Pharmacare second.
Coordination of Benefits: PEI Pharmacare
For more information, contact::
Special Support Program is an income-tested program that helps residents with their drug costs in relation to their income. Charges an annual deductible and co-payment.
Description:Is a first payer on eligible claims.
Coordination of Benefits: Drug Plan and Extended Benefits Branch
Description:The Specified Disease Conditions Program provides people with 100 percent coverage for eligible prescription drug products, as defined in Indigenous Services Canada’s NIHB Drug Benefit List, when the drug is prescribed by a recognized health care professional and dispensed by a licensed pharmacist.
Description:Provides First Nations and Inuit people with coverage for medically necessary good and services, including prescription medications.
Coordination of Benefits:Payor of last resort; when a beneficiary is covered by a private health care plan, claims must be submitted to it first.
For more information, contact::Non-Insured Health Benefits program
*NOTE: While this information was verified by CF pharmacists, this page should only be used as a guideline. Always consult with your CF clinician, pharmacist, public drug program, and/or private insurance carrierto find out which combination of public and/or private coverage is right for you.
Each province and territory hasa different level of public information available and public drug programs are subject to change without notice.For more information on a specific public drug program contact a pharmacist or health department in your jurisdiction.
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.
Gillian Maramieri has been involved with Cystic Fibrosis Canada for 10 years and is a working mother of two boys. Her youngest, Matthew, has cystic fibrosis and was the first to be diagnosed with CF in the family. He was diagnosed at birth after Gillian’s doctors noticed an echogenic bowel 18 weeks into her pregnancy. Her first words after the diagnosis were, "Ok, now what do we need to do?"
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