HIV and life insurance: A welcome change but questions remain

Historically, people living with HIV in Canada have been excluded from access to life insurance. In recent years, however, both Manulife and Sun Life have started accepting applications from people living with HIV, now that HIV is widely recognized as a manageable chronic illness. Nevertheless, this significant change in policy is not well-known within the HIV sector. How can we change that and how can we facilitate access to life insurance for people living with HIV?

With these two questions in mind, we at Realize and the Canadian Positive People Network (CPPN) surveyed our members and the insurance sector to gain clarity from both sides as to what the underlying issues might be. We found out that life insurance is something that people living with HIV think about today, but few folks know that it’s an option. And, for the few people living with HIV who are aware that Manulife and Sun Life are offering life insurance options, many people wondered what is offered and were curious about where to go for more information or to apply. Some wanted to know what the “catch” might be.

To delve deeper into this hot topic, Realize and the CPPN decided to hold an HIV and Life Insurance Think Tank in March 2018. More than 25 invited participants from across Canada, representing the HIV sector and the insurance industry, gathered in Toronto.

The day was co-facilitated by Muluba Habanyama, CPPN’s youth director, and Gayle Restall, an associate professor in occupational therapy at the University of Manitoba. We reminded participants that insurance exists in a business context. The insurance sector is specifically exempt from some human rights laws, in that they are permitted to discriminate based on protected grounds, in order to decide who has access to their insurance products and who does not.

We also provided an overview of the feedback from the CPPN members and highlighted that people living with HIV are cautiously optimistic. They are cautious because they don’t really know what their life insurance options actually are yet; they are not sure they will qualify (or why they might not); they are not confident that they can afford the premiums if they do qualify; and they are quite concerned about how claims on their policies will be handled after they’ve passed.

In her presentation, Claudia Medina from the Prisoners’ HIV/AIDS Support Network (PASAN) emphasized the need for ongoing advocacy for people living with HIV, not just in relation to life insurance, but more broadly related to work and disability. Claudia noted that many people living with HIV will still walk away from life insurance applications that require up-front disclosure because people are still fearful of negative consequences related to discussing their HIV status.

Shawn James from Sun Life outlined the basics of life insurance and described some of the factors that may be taken into consideration when granting life insurance to a person living with HIV. Generally, it was mentioned, they are looking for individuals with five years of “stability” on antiretrovirals, with undetectable viral loads and people who receive treatment from HIV “experts”. Many participants wondered what “five years of stability” actually means and if having an undetectable viral load for two years was sufficient to be considered for life insurance.

The presentations paved the way for robust and broad-ranging discussions. Many participants agreed that knowledge about the availability of life insurance for people living with HIV is scant, with details of the application process itself particularly vague. Participants agreed that the lack of clarity is concerning, especially with respect to the insurance industry’s decision-making processes regarding eligibility. And, the absence of specific information related to claims processes was widely acknowledged by participants as being problematic.

One of the most interesting aspects of the session was the fact that no one present knew anyone living with HIV who had a life insurance policy when they died. Consequently, real-life stories about how (or whether) claims or payouts were processed are severely lacking. So, while fears about denied claims and/or cumbersome claims processes are on the minds of people living with HIV, there is simply not enough information available to address them at this time.

Again, people living with HIV are left with more questions than answers: questions about pre-existing conditions and about co-morbidities and how they might complicate the claims processes. There are questions about how claims will be reviewed generally. And, there are many questions about how people living with HIV will be meaningfully engaged by the insurance industry in grappling with all of this and more.  One conclusion drawn from the think tank: we need to engage people living with HIV to develop a life insurance ‘resource hub’ and a peer navigation approach.

While parts of the insurance sector have taken steps toward recognizing that people living with HIV on treatment have, generally, the same life expectancy as their HIV-negative peers, and some insurance companies are offering life insurance options accordingly, there is much more work to do. Think tank participants called upon Realize and the CPPN to work together to facilitate a national conversation in a joint effort to develop resources and knowledge on this provocative issue.

Wendy Porch is the manager of episodic disabilities initiatives at Realize.

Jeff Potts is the executive director of the Canadian Positive People Network.