It’s 5:15 on a Friday afternoon. Shelly, a social worker with Saskatoon Health Region, is on the phone trying to help a client cover the cost of HIV medication. It’s one of several hurdles to clear to ensure this client receives appropriate care in the community before she is discharged from hospital.

Shelly is part of the Positive Living Program team of nurses and physicians who operate out of the Royal University Hospital (RUH) outpatient department. Her mandate is to remove barriers to HIV care, help clients both engage and adhere to medical care, and reduce transmission of HIV in the community.

RR-2014-11-26-HIV-Social-WorkerBarrier 1: Paying for medication

HIV treatment is essential to preventing AIDS, but HIV medication is not free in Saskatchewan.

If you’re not on social assistance, or have medical coverage through the federal government’s First Nations and Inuit Health Branch, you have to pay a portion of the cost of your antiretroviral drugs. Shelly works closely with the HIV pharmacist to make sure the ward pharmacist and ward social workers are aware of HIV medical coverage issues.

“Doing the education about the cost of coverage is very important,” says Shelly. “Going to fill a $1,500 prescription at the pharmacy is an extremely stressful event, especially when you’ve been told that you have to take these pills every day.”

Due to the multiple levels of co-payers, it’s also not unusual for clients to find themselves in medical coverage limbo. When everything else fails, Shelly seeks help for her clients through drug manufacturers or through community-based organizations. These options, unfortunately, are short-term solutions.

The Special Support Program is a co-pay arrangement with the provincial government, in which people pay a percentage of their medication costs based on their income.  It’s an option that’s difficult for the working poor to take advantage of.

“People earning between the $30,000 to $70,000 range are paying eight to 10 per cent of their medication costs. When you don’t make a lot of money per month, that $100 to $120 is really challenging.  We don’t know what the formula is that the government uses to determine how much someone should pay, so we never really know,” Shelly says.

Some people have health benefits through their place of work and can submit their medication costs to receive additional coverage. But it’s difficult for patients to obtain health benefits through private health insurance without a group plan. Monthly premiums are high for people with pre-existing medical conditions.

“In some cases people would pay more for their premiums than they would for their medications,” says Shelly.

Those with HIV often have to choose between paying for the roof over their head or the pills that will save their life. Making those medications free is a necessary step, Shelly believes.

“Other provinces do it. And for the amount of time that social work and pharmacy spend just trying to figure out funding, it’s probably feasible to advocate for funding free HIV meds. I think it would improve the quality of life for people living with HIV because they could afford food that would give them better nutrition and that would help them to manage their chronic disease as well. It breaks my heart when people are sitting there looking at their prescription and wondering how they’re going to manage their health.”

Barrier 2: I’m really sick, and have nowhere to live

One of the greatest barriers to HIV treatment is inadequate or inappropriate housing for clients with HIV, especially for those coming out of hospital who require ongoing care.

“It has such a ripple effect,” says Shelly. “If you don’t have a place to live, you can’t really prioritize things like your health. So if someone is newly diagnosed or sick and they don’t have a place to live, they aren’t thinking of their life-saving medications right now. They’re too overwhelmed.”

Accessing a personal care home is always difficult for people living with HIV. There is still a lot of misunderstanding about HIV and how it is spread, so the diagnosis itself can be a barrier. Also, people living with HIV often have additional challenges, like addictions, income insecurity, and other infections, which some care homes don’t have the capacity to deal with.

Funding can also be an issue. If the client is on social assistance, there are only a few select homes open to them.

Finding housing for clients who don’t need a personal care home isn’t any easier. “There isn’t enough housing and it’s too pricy,” Shelly says.

Barrier 3: How do I get to my medical appointments?

“Our location at RUH is not easily accessible, even to people who have vehicles, because parking is expensive and hard to find. We have the ability to give bus tickets and taxi vouchers to our clients, which has helped out a lot of the people we work with,” Shelly says.

Clients coming in from out of town, unfamiliar with Saskatoon, have a bigger problem, first paying for a bus to get to Saskatoon, then navigating their way through a city they don’t know to get to the clinic. In order to solve transportation issues, Shelly works with several service organizations and their outreach workers so people can be picked up from the bus depot and brought to RUH without getting lost.

Barrier 4: Service Gaps

Mental health support designated for people living with HIV is something that doesn’t exist right now.

“We have Addictions staff specifically designated for people with addictions who are living with HIV, but we see many people with mental health challenges who would benefit having access to a mental health counselor,” she says.

Education about HIV is another area that needs more attention.

“I‘ve mainly worked with street-involved folks, and I’m really seeing the other groups feeling left out of that education component,” she says. “If we’re going to move forward with the HIV strategy, we need to involve the other groups at risk. We have a lot of folks saying, ‘I’m living with HIV and I just keep hearing about addictions.’ It adds a layer of stigma to their diagnosis.”

“We need to create a culture of awareness, and that doesn’t happen in a day.”

Education about HIV and stigma requires a long term campaign, Shelly feels.

Successes

It’s now 6:15 p.m. and Shelly has to order more infant formula for a family. One of her clients called: she is opening her last case of formula. So Shelly has to contact one of the pharmacies that have agreed to carry formula.

If there’s anything that has improved life for some of her clients in the past year, it’s the infant formula program – and not a minute too soon. Breast-feeding is a transmission risk for HIV for infected mothers and their babies, but prior to January 2013 mothers with HIV in Saskatchewan had to pay for infant formula.

“Right now, I have 11 women registered in the program,” says Shelly. “The Saskatchewan Infant formula program is dispensed through pharmacies, and mothers pick it up like a prescription. We have chosen the pharmacy dispensing method for confidentiality reasons and the formula program is not attached to the Positive Living Program in order to avoid the stigma that goes with being an HIV positive mother.”

There have been other improvements made in the past five years, including more psycho-social supports to help HIV positive clients receive medical care.

“Before the HIV strategy, we weren’t able to provide the support that would have been more helpful in getting people linked and engaged in care,” she says.

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