Long-Term Disability and Pharmacogenomic Testing

Has your long-term disability (LTD) insurer asked you to undergo a pharmacogenomic test? Are you worried about getting cut off if you refuse to take the test? Do you have concerns about whether your insurance company can see your results? If so, you are in the right place!

Over the past few years, pharmacogenomic testing (PGx) has started to gain traction in the insurance industry — especially in the disability space. In fact, most Canadian insurers now offer these tests to disability claimants. So, if you are like us and are curious about why this uptick is happening and whether it’s something you should be concerned about, keep reading.

Contents

This article is part of our Ultimate Guide to Long-term Disability in Canada.

Table of Contents

What is Pharmacogenomic (PGx) Testing?

Pharmacogenomic testing shouldn’t be confused with ancestral genetic testing or the kind of genetic tests that determine the risk of developing certain diseases. Instead, pharmacogenomics (sometimes called pharmacogenetics) examines your DNA to find out what medication and doses will work best for your genetic makeup. Research has shown that your genetics can influence your reactions to certain medications. Meaning some drugs may cause adverse side effects or won’t work at all if they don’t align with your DNA. Pharmacogenomic testing aims to reduce this trial-and-error process by helping people find the safest and most compatible medication on the first try.

Pharmacogenomics and mental health conditions

Pharmacogenomics has proved to be especially effective in the mental health field. Patients with mental health conditions are faced with hundreds of medication options and thousands of possible dosages. This can make it extremely difficult to find the drug that works best for them. In fact, studies have shown that finding an effective drug therapy can take up to 14 months. With pharmacogenomics, however, people with mental health conditions can find a medication without all the trial and error — and there is research to back this up.

The Centre for Addiction and Mental Health (CAMH) recently led a study that compared pharmacogenomic-guided treatment to regular (non-pharmacogenomics-guided treatment) on patients who had been previously diagnosed with treatment-resistant depression. The 52-week, double-blind study found an 89 percent increase in remission rates compared to those who engaged in regular treatment.

One patient actually spoke about her experience following the study. She had decided to participate in CAMH’s research because she had tried various medications, but they were all ineffective. After she received the pharmacogenomic testing, she found out her body “could tolerate—and in fact needed—three times the standard dose of one anti-depressant drug.” After taking the pharmacogenomics-recommended dose, “her mood improved dramatically” within two months.

“I have this very specific memory of one day just opening up my back door to let my dog out, just an ordinary thing, and I felt that feeling of happiness that starts in your gut for the first time in a really long time,” said the woman in the CAMH report.

This first-of-its-kind study in Canada adds to the growing body of research on the benefits of pharmacogenomic testing in prescribing anti-depressants.

Is There an Increase in Insurance Companies Offering PGx Testing Services?

Insurance companies began piloting pharmacogenomic testing programs about five years ago, with Sunlife being the first in August 2017. Along with Sunlife, Canada Life (formerly Great-West Life) launched a pilot project in December 2017, and Manulife rolled out its program that focused on chronic pain, anxiety and antidepressant medications in 2018. Soon after, other Canadian insurance companies started following suit.

Today, most large Canadian insurers offer PGx testing either as a group insurance option or at a preferred pricing rate, according to a Telus Health report. As of October 2020, the following are the Canadian insurers that offer pharmacogenetic testing:

Canada Life
Desjardins Insurance
Equitable Life
Green Shield Canada
Manulife
Medavie Blue Cross
Pacific Blue Cross
BBC Insurance
Beneva (formerly SSQ and LaCapitale)
Sun Life

Most of these insurance companies listed above offer pharmacogenomics as a disability benefit, with 8 of 10 insurers contacted currently offering or planning to offer pharmacogenomics to disability claimants. Additionally, some are planning on or are already providing it as an extended health benefit.

While many insurance companies have similar coverage options, the details of coverage vary from company to company. For instance, the Telus Health report found that some companies, such as Canada Life and Pacific Blue Cross, let the case manager decide who should be offered PGx testing. While other companies only offer PGx testing to people with certain health conditions, predominantly conditions related to mental health and pain.

So why are insurance companies interested in pharmacogenomics?

Pharmacogenomics benefits insurance companies in two primary ways. The first is it shortens and reduces the number of disability claims. And the second is it allows doctors to prescribe more effectively, which results in quicker recovery times, fewer adverse drug reactions, less money spent on ineffective medications and overall better health outcomes for claimants.

Reducing and shortening disability claims

Studies have shown that taking the wrong medication is a major contributor to workplace absences and short- or long-term disability leaves.

A 2013 U.S. study found that employees who were taking the wrong medication were three times more likely to be absent from work and four times more likely to be on short- or long-term disability.

So, pharmacogenetics can be understood as a way to reduce and shorten those leaves by finding the most suitable drug therapy right away.

At a conference, Valerie Charlebois, the senior associate for health and benefits at Mercer, confirmed this sentiment by saying insurance companies are interested in pharmacogenetics mainly because they can possibly “reduce disability claims.”

Additionally, a Canadian study on pharmacogenomics noted that “pharmacogenomics incorporation in disability management is expected to have high returns in terms of reducing time to return-to-work and disability management costs.”

Less money spent on ineffective medications

Research has also shown that pharmacogenetic testing can save both claimants and insurers thousands of dollars on prescription drug costs. According to a study by Inagene, a Canadian PGx testing company, PGx-guided treatment can save patients 60 weeks of “trial and error” and over $3,000 in wasted drug costs.

Better health outcomes

Another benefit of pharmacogenomic testing is it has been shown to produce better health outcomes in claimants.

A study by Greenshield Canada found that patients’ mental health conditions “improved significantly more when their treatment was guided by a pharmacogenomics profile rather than purely by clinician judgment.” Additionally, Manulife’s pilot program found that 82% of members who changed their medication after taking a PGx test reported an improvement in symptoms.

Fewer adverse drug reactions (ADRs)

Another benefit of pharmacogenomic testing is it can reduce the number of adverse drug reactions among claimants.

According to Adverse Drug Reaction Canada, an estimated 200,000 severe ADRs occur in Canada every year, though an estimated 95% aren’t reported. The organization estimates ADRs cost the Canadian healthcare system between $13.7 billion and $17.7 billion every year.

Since genetic factors can account for up to 95% of individual variation in drug responses, pharmacogenetics can be seen as a way to prevent and reduce ADRs.

As you can see, there are a lot of incentives for insurance companies to offer PGx testing services. But where does the Genetic Non-Discrimination Act (GNDA) fit into all of this? Doesn’t the Act prohibit insurance from requiring or viewing genetic test results? As you’ll find out later in this article, the GNDA does create several barriers for insurance companies when it comes to PGx testing. But before we dive into that, let’s ensure you fully understand the GNDA and how it works.

What is Genetic Non-Discrimination Act

The Genetic Non-Discrimination Act was created in response to the rapid advances in genomic science that allowed for widespread, affordable access to genetic testing. While these tests facilitated the prevention, treatment and early diagnosis of several diseases, many people were unwilling to participate in testing because they were worried about genetic discrimination from employers and insurance companies. So, to ensure that the Canadian public could access these potentially life-saving tests without fear of discrimination, the GNDA was formed and subsequently passed in 2017.

After the GNDA received royal assent, third parties such as insurers and employers were forced to follow stringent rules surrounding genetic testing. Among other things, they were no longer allowed to ask people for their genetic testing results or require the results of a genetic test as a condition of providing goods or services or entering into or continuing a contract. Those who violated the Act also faced strict penalties, including a fine of up to $1,000,000 or imprisonment for up to five years.

The following is a full list of the GNDA‘s prohibitions, exceptions and penalties:

Prohibitions

3(1) It is prohibited for any person to require an individual to undergo a genetic test as a condition of
- (a) providing goods or services to that individual;
- (b) entering into or continuing a contract or agreement with that individual; or
- (c) offering or continuing specific terms or conditions in a contract or agreement with that individual.

2) It is prohibited for any person to refuse to engage in an activity described in any of paragraphs (1)(a) to (c) in respect of an individual on the grounds that the individual has refused to undergo a genetic test.

4 (1) It is prohibited for any person to require an individual to disclose the results of a genetic test as a condition of engaging in an activity described in any of paragraphs 3(1)(a) to (c).

(2) It is prohibited for any person to refuse to engage in an activity described in any of paragraphs 3(1)(a) to (c) in respect of an individual on the grounds that the individual has refused to disclose the results of a genetic test.
5 It is prohibited for any person who is engaged in an activity described in any of paragraphs 3(1)(a) to (c) in respect of an individual to collect, use or disclose the results of a genetic test of the individual without the individual’s written consent.

Exceptions

6 Sections 3 to 5 do not apply to
- (a) a physician, a pharmacist or any other health care practitioner in respect of an individual to whom they are providing health services; or
- (b) a person who is conducting medical, pharmaceutical or scientific research in respect of an individual who is a participant in the research.

Offences and Punishments

7 Every person who contravenes any of sections 3 to 5 is guilty of an offence and is liable
- (a) on conviction on indictment, to a fine not exceeding $1,000,000 or to imprisonment for a term not exceeding five years, or to both; or
- (b) on summary conviction, to a fine not exceeding $300,000 or to imprisonment for a term not exceeding twelve months, or to both.

Along with these prohibitions and penalties, the GNDA also came with amendments to the Canada Labour Code and the Canadian Human Rights Act.

Constitutional Challenges

While the Act was met with widespread support from most of the Canadian public, not everyone agreed it was constitutional. For instance, the Government of Quebec referred the constitutionality of the Act to the Quebec Court of Appeal on the grounds that the regulation of genetic information by insurance companies and employers exceeded federal jurisdiction. The Quebec Court of Appeals unanimously agreed that sections 3, 5, and 7 of the GNDA fell outside of federal jurisdiction.

After the Quebec Court of Appeals ruling, The Canadian Coalition for Genetic Fairness appealed to the Supreme Court of Canada.

In July 2020, the Supreme Court of Canada held that the GNDA “was constitutional and was a valid exercise of federal jurisdiction.” Meaning the GNDA is still in effect today.

Now that you understand how the GNDA works and what it prohibits insurance companies from doing let’s talk about a potential exception to the GNDA: lawsuits.

Can an Insurance Company Force Me to Undergo Genetic Testing?

As we’ve already discussed, insurance companies cannot force you to undergo genetic testing. However, in the context of a lawsuit, a court may be able to order a person to undergo genetic testing at the request of the opposing party (which could be the insurance company) in the litigation. This was seen in a recent court decision involving a defendant who wanted a court order for the plaintiff to undergo genetic testing.

Klinck v. Dorsay

Klinick v. Dorsay was a case that involved a minor plaintiff, A.K., who was diagnosed at birth with hypoxic-ischemic encephalopathy, meconium aspiration syndrome, dyskinetic cerebral palsy, and several other serious medical conditions.

Background

The plaintiffs in the obstetrical malpractice suit included the child, A.K. and the child’s biological and adoptive parents, who alleged that the defendants’ “failure to order an emergency cesarean section” and failure to “recognize signs of fetal distress and the need for an urgent delivery” caused or contributed to the child’s injuries.

The defendants, which included the midwives and doctors who assisted with the labour and delivery of A.K., claimed his condition resulted from a genetic disorder, not negligence. The defendants also claimed that they could prove A.K.’s condition was genetic through genetic testing. However, the plaintiffs refused to consent to the proposed test. And as a result, the defendants sought a motion to collect blood samples from the child and his biological parents for the purposes of genetic testing.

The decision

In her decision, Justice Ryan Bell found that the “elements of fairness, necessity, and prejudice weigh in favour of ordering the requested testing.” And she ordered A.K. and his biological parents to undergo genetic testing.

In this case, the courts ordered the genetic test because it was relevant to the dispute, and the defendants had evidence that suggested A.K.’s condition was the result of a genetic condition. This was the first time in Ontario that a court has ordered genetic testing as part of a medical examination in a medical malpractice action. This precedent-setting decision could apply to other cases where genetic testing may be relevant — including LTD lawsuits. However, there would need to be overwhelming evidence that the genetic test is necessary. Additionally, this case is not the final word on whether a court can order someone to undergo genetic testing. Until there is a court of appeal level decision, these cases could really go either way.

Overall it’s unlikely that a court would order you to undergo genetic testing in a long-term disability suit; however, it is possible. Whenever you enter a lawsuit, you have to remember you give up certain privacy rights.

Now that you’re aware that you could be forced to undergo genetic testing in the context of a lawsuit let’s talk about why insurance companies are allowed to offer PGx testing to claimants as well as your rights regarding these tests.

Is It Legal for Insurance Companies to Offer PGx Testing?

As discussed earlier, the Genetic Non-Discrimination Act prohibits companies and employers from requiring genetic testing or the results of genetic tests as a condition of providing goods or services or of entering into or continuing a contract. It also prevents insurance companies from denying services based on the results of genetic tests.

So, insurance companies cannot force you to take a PGx test (unless its court ordered). Nor are they allowed to make you disclose the results of the test. However, the GNDA does not prohibit them from offering PGx services to claimants.

Can My Insurance Company Cut Me Off LTD If I Refuse To Undergo PGx Testing?

Unlike other non-compliance breaches, such as refusing to undergo prescribed treatment, insurance companies cannot legally cut a claimant off for refusing to take any kind of genetic test.

This is because the GNDA explicitly states:

3(1) It is prohibited for any person to require an individual to undergo a genetic test as a condition of
- (a) providing goods or services to that individual;
- (b) entering into or continuing a contract or agreement with that individual; or
- (c) offering or continuing specific terms or conditions in a contract or agreement with that individual.

As you can see, the GNDA prohibits insurance companies from requiring an individual to undergo a genetic test as a condition of continuing a contract or agreement. Meaning they can’t terminate your benefits because you rejected their offer to take a PGx test.

Most insurance companies clearly state that your decision to take a PGx test will not affect your LTD claim.

The following is an example of a PGx testing consent form from a Canadian insurer:

“Your decision to take the [pharmacogenomic] test is free and voluntary. Therefore, you may agree or refuse to take the Test without giving any reasons. If you decide not to take the Test, your employer will not be informed, and there will be no impact on any claims you make with the Insurer.”

Can Insurance Companies See My Test Results?

Most insurance companies are very transparent that they will not have access to your PGx test results unless you give them written consent to view them. One thing to keep in mind, however, is that when you give an insurance company consent to order your medical file, they will be able to see your test results. If this is something you are concerned about, you can always ask your doctor to remove your PGx results from your medical file.

Statement from Mark Faiz, the CEO of Personalized Prescribing Inc (PPI), a pharmacogenomics testing company that works with various insurance companies:

Yes, a pharmacogenomic test report is a part of patient’s medical file at their doctor’s office. A pharmacogenomic test is useless without a doctor as the recommended medications need to be prescribed by the treating physician. Medical files at doctor’s offices are sacrosanct, they cannot be shared with anyone unless the patient gives consent. Definitely no insurance company or employer ever has access to a medical file without the patient’s consent.

Final Thoughts

While it’s easy to become distrusting of insurers and think they always have a sinister ulterior motive, based on our research, it seems there is no malice here. As discussed earlier in this article, insurance companies certainly stand to benefit from pharmacogenomic testing. However, those benefits aren’t at your expense. If anything, pharmacogenomic testing offers you, the claimant, just as many advantages as it does the insurer.

Ultimately, the decision to undergo pharmacogenetic testing is completely up to you. If you are uncomfortable with it, don’t do it. And remember, you won’t be penalized for your refusal — at least not legally. If you are interested, talk to your doctor about whether PGx testing is right for you. And keep in mind that the insurance company and your employer cannot view your results unless you give them written consent to do so or enter into a lawsuit where the genetic testing may be relevant to the dispute.