Women who develop inflammatory arthritis or psoriasis often do so in the prime of their lives, leaving them with concerns related to their reproductive and sexual health. But they struggle to find support in their employer-sponsored benefits plans.

“We know that diversity, equity and inclusion are a really big piece of [human resources] these days,” said Rachael Manion (pictured left), executive director of the Canadian Association of Psoriasis Patients and the Canadian Skin Patient Alliance, during Benefits Canada’s 2022 Chronic Disease at Work conference in February. “[But] sometimes the experience that [women with these conditions] have when engaging with either their workplace or the actual private plan that they have can really be at odds with a lot of the talk around DEI.”

Read: To achieve DEI goals, plan sponsors can start by reviewing benefits plans

Both conditions are estimated to impact roughly one million Canadians, meaning employers and benefits advisors are very likely designing and administering plans that people living with these conditions will use, said Manion.

Given the time of onset, the intersection between these diseases and sexual and reproductive health “really spans the whole lifecycle” and also overlaps with women’s working years, she said, from considerations around family planning and whether becoming pregnant is possible to parenting and all the way through to peri- and menopausal times.

A survey of more than 400 people who identify as female and women-plus by the Canadian Association of Psoriasis Patients, Canadian Arthritis Patient Alliance and the Canadian Spondylitis Association found that respondents have numerous needs that aren’t being addressed by private benefits plans.

“When benefits are offered to all workers that is really the easiest for people to take advantage of,” said Manion. “It provides better support and improved access because it doesn’t require somebody to put their hand up and say, ‘Actually, I live with psoriasis and I need some more supports and these are specifically what they are.’”

Read: Plan sponsors get a primer on autoimmune conditions

The survey respondents noted not all medications for these diseases are safe for pregnancy and breastfeeding and that they may have to work with their health-care providers to switch over to safer alternatives. Employers could distinguish themselves by not only including these safer medications in their formulary, but by offering navigational support for the prior authorization process, which these drugs typically fall under, said Manion. She also encouraged plan sponsors not to make pregnancy a precondition for switching medications.

Benefits plan sponsors can also provide choice around contraceptive options, as medications for treating inflammatory arthritis or psoriasis can impact what contraception women-plus are able to safely take. Ten per cent of respondents, particularly among young women, said they were actively trying to avoid pregnancy.

Manion also encouraged benefits advisors to educate plan sponsors about the drugs available under their plan and the potential impact on women’s fertility.

More than half of survey respondents said they experienced “financial hardship” from paying for necessary medications, something that was more pronounced among women under the age of 30. Out-of-pocket spending varied significantly from small amounts to upwards of $4,000 per month. Respondents admitted to various strategies to address their financial struggles, such as not filling a prescription, taking less than the prescribed dose and stopping their medications altogether.

“Of course, to stay well and productive at work, none of these approaches are really good for the employee or for the organization,” said Laurie Proulx (pictured right), a steering committee member at the Canadian Arthritis Patient Alliance who lives with juvenile rheumatoid arthritis and also presented at the conference.

Read: Why it’s essential to provide multiple treatments for psoriatic disease 

She advocated for flexibility and choice in a benefits plan’s formulary and for offering support for women-plus navigating different plan options to reduce the financial burden. She pointed out that younger employees tend to fall into the temporary worker class and suggested adding those workers to the benefits plan, if they’re not already.

Pain is one of the most common symptoms of these conditions, said Proulx, noting people living with them can often benefit from paramedical benefits such as massage therapy and physiotherapy.

The connection between inflammatory arthritis, rheumatic and psoriasis diseases and mental health is often “under-addressed and under-appreciated,” she said. However, she noted 90 per cent of survey respondents expressed concern for their mental health, a number that was higher among those aged between 31 and 35 and among LGBTQ2S+ respondents. Only 16 per cent said they had access to a mental-health professional.

Proulx called for a range of solutions, including access to a comprehensive employee assistance program and coverage for mental-health practitioners. “There’s an urgent need for support . . . to help them manage their conditions.”

Read more coverage of the 2022 Chronic Disease at Work conference.