When Colleen Price was diagnosed with HIV more than two decades ago, she was already living with Hepatitis C (HCV) — a serious liver disease that develops into a chronic, life-long infection for 80 per cent of people who get infected.
To cope with the stress of living with two infections — HIV-HCV — also known as co-infection, Price turned to substance use and relapsed for almost two years. She eventually entered a rehab program at The Jean Tweed Centre to address her trauma and regain her health. An aggressive 48-week treatment plan for hepatitis C led to a cure — an outcome only few co-infected patients experienced more than 20 years ago. Today, curing the disease may take just eight weeks.
No longer living with hepatitis, Price began treatment for HIV, which she now successfully manages with daily oral medication. And while she credits her HIV doctor for saving her life, Price says that not all healthcare providers offer the same compassionate support and unbiased care.
“Some of the most damaging stigma I’ve ever experienced has been from the healthcare profession,” she says. “It impacted my care and my access to HIV, Hepatitis C and pain medications.”
Around since the 1980s
HIV caught the attention of the public in 1980s as healthcare professionals began to see a disturbing trend in gay men becoming infected with — and dying from — a type of pneumonia that only affected people with weak immune systems. Scientists uncovered the methods of transmission — infected blood, semen or vaginal fluids — and despite the risk to people who shared needles with someone who was HIV-positive, as well as women who had sex with infected male partners, HIV became known as a “gay disease.”
During this time, a lack of blood donor screening and testing of blood products led to one of the worst public health scandals in Canada’s history, which saw more than 20,000 Canadians infected with Hepatitis C and HIV through contaminated blood products.
By 1999, scientists had traced the origin of HIV to an HIV-like virus that affected monkeys and apes, linking the jump to humans to hunters in Africa who either ate infected chimps, or had wounds that came into contact with infected blood.
A barrier to medical care
With the HIV under control, Price struggled to move forward doggedly facing challenges within the healthcare system, both in terms of the stigma around her history of substance abuse, and the lack of funding and support that exists for people living with HIV.
In fact, the stigma recently almost cost her her life.
Seeking help for severe chest pain, the healthcare professionals Price consulted were focused on substance use and medical issues not related to what she sought help for. The pain was so bad that she thought she was having a heart attack on more than one occasion. Yet, she was repeatedly turned down by doctors who wouldn’t prescribe pain medication because of her history of substance abuse. Two hospital stays, three visits to the emergency room and a visit to a heart clinic weren’t enough to convince healthcare providers that something was wrong. But an appointment with a cardiologist — which happened only after her HIV doctor intervened — revealed that she had, in fact, suffered a heart attack and needed emergency heart surgery.
HIV and a woman
Beyond the discrimination she experiences in the healthcare system because of her history with substance use, Price says that the lack of funding that exists to support people living with HIV, plus the fact that she is a female, adds a whole other dimension to the barriers she faces on a daily basis.
“There is barely any support for females living with HIV and if there is, it tends to be racialized,” she says. “We’re fragmented, we aren’t included in the national strategy as a priority population, there is no funding, and the government is taking no responsibility.”
Price, now a leading HIV advocate, suggests that a national working group, a female research steering committee as well as training programs on HIV care and prevention are needed to better support women living with HIV. She also notes that co-morbidities and aging make life with HIV more complicated — it’s estimated that roughly 50 per cent of people living with HIV are over the age of 50. It’s a statistic that, she says, points to a need for additional support to prepare people with HIV for the future, particularly those concerned about access to healthcare and housing.
Canada is lagging
Gary Lacasse, executive director of the Canadian AIDS Society acknowledges that there is an obvious void of funding for care and support of people living with HIV.
“Canada is lagging behind other G7 countries, and we are witnessing dramatic increase in HIV and other sexually transmitted and blood-borne infections,” he says. “We need more adaptive and equitable funding opportunities from all levels of governments — an equitable approach is needed to ensure that no one is left behind.”
The most recent national HIV estimates report that about 62,000 Canadians currently live with HIV, an increase of 25 per cent since 2016. According to the Public Health Agency of Canada, someone is infected with HIV in Canada every four hours. The Canadian AIDS Society attributes the rising infection rate to funding cuts that affect 40 per cent of community-based HIV organizations, compromising their ability to provide public education, testing, and prevention — an impact called “devastating” in a report from last February.
Despite the worrying statistics and insufficient financial support, organizations like the Canadian AIDS Society continue to work with members and partners to end HIV in Canada by addressing gaps in services and research, while responding to the changing needs of people impacted by HIV. Lacasse says that amplifying the voices of people with HIV guides advocacy, improves overall health and well-being within these communities, and also helps to identify barriers to care — barriers that impact the effectiveness of prevention strategies.
Access to care, stigma, poverty, racism, substance use and mental health disorders, are just some of these barriers, says Dr. Ed Kucharski, chief medical officer at Casey House, an Ontario hospital that specializes in HIV/AIDS care through inpatient and outpatient services. Casey House is the first hospital in the province to offer supervised consumption services on-site to help improve health outcomes for people with HIV who use substances.
“By offering supervised consumption, we are able to help our clients who use drugs stay in hospital to receive care for their acute medical condition and keep them safe from overdose,” he says.
Despite the challenges, there has been tremendous progress made in the treatment of HIV since the 1980s, when it was a terminal diagnosis. Kucharski explains that people living with HIV used to take several pills a day to manage their condition, medication that caused extreme side effects, such as nausea and diarrhea. Today, most people manage well with just one pill a day, and have minimal side effects, if any. There is also a monthly injectable treatment for those who may be more prone to skipping or forgetting their oral medication. Other treatment options in the works include long-acting drugs that could be taken every six months, or less frequently.
COVID-19 introduces the possibility of an HIV vaccine
“An area of research and development that has been both of great interest and elusive is the development of an HIV vaccine,” says Kucharski. “With our broadening experience with mRNA vaccines [because of COVID], it appears several initiatives are underway to use this technology to look at developing an HIV vaccine.”
It’s true that as scientists raced to develop effective — and life-saving — vaccines to stop the spread of COVID-19, the possibility of using the same technology to build a vaccine for HIV became a harbinger for hope that we could, at last, end the disease as a major health concern. Even Dr. Anthony Fauci, the director of the National Institute of Allergy and Infectious Diseases called an HIV vaccine based on COVID technology “likely.” The cautious optimism has also been buoyed by an announcement in August from Moderna (the manufacturer of one of the first COVID vaccines) that it would launch a Phase 1 clinical trial for two mRNA-based HIV vaccines.
“There’s a lot of new energy and buzz among scientists looking at how quickly some of the COVID science got done,” Rowena Johnston, the vice president and director of research at amfAR, an international nonprofit AIDS research group, told NBC. “I think there’s been a lot of soul-searching about how the scientific enterprise can be improved so that we can better serve the people we’re trying to help.”
But getting closer to a vaccine for HIV may not be all this global pandemic has taught us, say some experts.
“Any pandemic is a day away, and we sort of learned that initially with HIV, but this pandemic has brought that home in an extremely strong way,” Dr. Kenneth Mayer, a Harvard Medical School professor, told NBC. “What happens in one part of the world doesn’t stay in that part of the world.”
But while scientists work in labs to uncover more treatments to help people better manage life with HIV, Price continues her work on the ground, using her voice to support people affected by HIV.
Recognized for her contribution and work in HIV/AIDS leading initiatives that support people living with HIV in the areas of health and well-being, mental health, and aging, Price is a recipient of two prestigious awards: the Queen Elizabeth II Diamond Jubilee medal awarded by the Canadian AIDS Society and the Elisse Zack Award for Excellence in HIV and Rehabilitation awarded by Realize, an organization whose mission is to improve the health and well-being of people living with HIV and other episodic disabilities, through integrated research, education, policy and practice.
She is urging others to get involved and use their HIV status as a tool to help others.
“HIV doesn’t define us,” she says. “We have the power and the control to seize our own destiny.”
Maja Begovic is a freelance writer for Healthing. She can be reached here.
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