Adopt specific polices or clear guidelines related to the care of HIV positive patients to root out discriminatory behaviour among health care workers. Health facilities need to implement policies that protect the safety and health of patients, as well as health care workers, to prevent discrimination against people living with HIV. Develop such policies in a participatory manner, involve people living with HIV, make sure they are communicated clearly and monitor their implementation.
We strive to empower people living with HIV/AIDS through mutual support and collective action. We provide a comprehensive set of programs and services supporting good health and wellness among our HIV positive membership. The services and therapies we offer range from free in-house massage therapy, acupuncture, nutrition services and computer skills building to offsite workshops, seminars and healing retreats. All of our services are generally offered for free to our members.
About the author: The Positive Living Society of British Columbia (Positive Living BC)
The Positive Living Society of British Columbia (Positive Living BC) works to serve people living with HIV (PLHIV) in British Columbia. We are a consumer-based organization operating on a membership model and governed by a volunteer Board of Directors comprised entirely of PLHIV. For current schedules and registration information, visit www.positivelivingbc.org.
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Despite game-changing advances in HIV treatment over the past 15 years, HIV remains a specialized field in health care. Not all health care providers are knowledgeable about the intricacies of living with HIV, of HIV prevention, HIV treatment or even HIV testing. HIV remains highly misunderstood in the general public, as well as among medical professionals. Peer-based, community support therefore has been, and continues to be, essential to effective HIV care. Without the voices of people living with it, conversations about HIV care are ineffectual and have proven, in some cases, to be harmful to the good health of PLHIV. This is an important piece of the puzzle of where to start when we wish to assess and/or improve the care offered to people living with HIV and their families and communities.
Barriers to Health
Since HIV care is constantly changing by way of new treatments, new prevention methods, and of how diverse communities and activists continue to challenge the way we think about HIV itself and the people living with it, so too are the needs of the HIV positive community. There are several truths to hold at once when we consider what can get in the way of people getting the care they need and deserve. First, HIV, as a virus, does not in itself discriminate by age, gender, sexual identity, ethnicity or socio-economic background; therefore, any barriers to general good health and wellbeing are barriers to good health for PLHIV. That said, at the same time, there are communities that are disproportionately affected by HIV. The disproportionate impact of HIV infection on gay men or men who have sex with men, trans people, Indigenous communities, racial and ethnic minorities, people who use drugs, among others, has affected people and communities already struggling with many social and economic challenges, for example, poverty, substance abuse, homelessness, discrimination based on race, sex, gender and/or sexual orientation, and notably, unequal access to health care, and unequal treatment once in the health care system.
Superimposed on these challenges is HIV infection, the transmission of which is facilitated by many of these factors. People and communities with a history of having a harder time accessing health care have complicated the care of people living with HIV. Stigma, mistrust, lack of awareness and knowledge when it comes to offering affirming care for diverse communities, all impact access to treatment, adherence to treatment plans and treatment outcomes as well as general health and wellbeing. In parallel, health care provider are not always aware of possible comorbid conditions that may specifically affect certain people or communities (for example, mental health conditions like depression, PTSD, substance abuse, Hepatitis C or other co infections, etc.) and in turn, impact the delivery of care to people living with HIV. Good relationships between patients and health care providers is critical, as it has been demonstrated to be crucial to better health outcomes for HIV positive people.
Navigating HIV Stigma
The stigma attached to HIV is also an important barrier faced by people living with HIV when it comes to getting medical care, including sexual and reproductive care. Since HIV remains widely misunderstood and often maligned in wider public, HIV stigma continues to have a huge impact on people’s health and on the health care they are able to access.
It can devastate the familial, social, community and economic lives of people which, in itself, negatively impact people’s health. It can be a major barrier in accessing prevention care, in getting tested, in getting treated and in getting the information needed to keep themselves and their partner(s) safe. In the health care context, it can mean being outed by medical professionals, being shamed, treated differently, mistreated, misinformed, etc. For example, it is not uncommon to hear of excessive and ostentatious use of protective gear to touch and treat HIV positive patients, of stigmatizing language being used, of invasive questions being asked, of HIV positive people being shamed if they show up with STIs, of people’s HIV status being disclosed with post-its on files being carried around, or mentioned in inappropriate moments, of people being told they can’t have children, etc.
Access to treatment, including treatment as prevention, is not equitable across the country and there can be important financial barriers to people getting the best possible care. Timely (and early) access to treatment is crucial to increase the quality of life of people living with HIV and reduce the number of new infections in Canada. It also offers the important possibility that people’s viral loads may reduce to undetectable levels, a key aspect of using treatment to stop new infections.
Every province has a different system for covering HIV drug costs meaning the out-of-pocket costs of obtaining drugs depends on where you live, who is eligible for coverage, whether you have a low income, if you have developed resistance to certain types of medications, are newly diagnosed, what caps are imposed on prescriptions payouts in your benefit package, whether you have third-party insurance and many other factors. The discrepancies between provinces as well as who gets covered in each province, also mean that the quality of care received and the access to medication and devices vary greatly depending on where someone lives. This leads some people in Canada to move to another province in order to receive the care they need, sometimes severing important support networks. The current patchwork of coverage is unfair and puts many people’s heath at risk.
This is also true for pre-exposure prophylaxis (PrEP), a newer and innovative HIV prevention approach where an HIV-negative person uses anti-HIV medications to reduce the risk of HIV infection. Despite multiple studies showing its importance as a new prevention technology, many people experiencing high risk of HIV transmission are not be able to access PrEP right now due to financial barriers.
HIV transmission from mother to child during pregnancy, labor and delivery, or breastfeeding is the most common route of HIV infection in children. When HIV is diagnosed before or during pregnancy, transmission can be reduced to less than 1% if appropriate treatment is given, the viral load becomes undetectable, and breastfeeding is avoided.
There are a few prevention challenges that can come up in the context of parent/mother-to-child transmission. First, because of assumptions people make about people living with HIV’s sexuality and pregnancy intentions, few HIV medical care providers routinely provide preconception care or family planning services to their patients with HIV, which may result in unintended pregnancies. In other cases, HIV stigma and other social stigma someone may be facing (for example, drug use, sex work, etc.) can act as barriers to testing and prenatal care as someone may fear being criminalized, fear of institutional involvement, fear of having the baby removed from their custody, lack of access to appropriate substance use treatment programs, of being stigmatized, or having to disclose their status.
What’s your relationship status?
PLHIV in British Columbia (BC) generally benefit from world-class health care, given that the BC Centre for Excellence in HIV (BCCfE) is located in Vancouver and the BCCfE’s associated researchers and care providers are leaders in their field. There is much to learn from the innovative work that comes from that region. However, not all PLHIV in Canada, or even in BC, have immediate access to this stream of care. Indeed, not all care providers are knowledgeable about HIV health and/or treatment and not communities have HIV specialists.
Often, fear, stigma and shame are factors in the relationship between PLHIV and care providers. When an individual does not feel confident enough to discuss their sexual and HIV health with a care provider for fear of a negative response, they may chose not to disclose their HIV status at all, which can impact people’s health negatively. It is important for health care providers to foster relationships with their patients that facilitate disclosure and honest conversations about needs, about treatment, about sexual health and all information important to the delivery of quality care.
This means it is important for health care providers to get informed about HIV as, not only does it mean they can confidently offer guidance and care to their patients, it also helps address stigmatic assumptions that can get in the way of trust building. It also means considering the importance of maintaining privacy and confidentiality both at the interpersonal level and at the system level.
For example, all HIV pharmaceutical treatment in British Columbia is centralized at the BCCfE in Vancouver. All PLHIV who live in that province get their treatment from Vancouver. Often, PLHIV make special trips to Vancouver for their HIV care. While expensive, inconvenient and not accessible to all, many make this decision because many health care providers outside of these excellence centers are not HIV knowledgeable and because PLHIV are worried about having their medications delivered to their communities for fear of their HIV status being “outed.”
It can’t be stressed enough how intensely stigma and fear can impact the health and wellbeing of people living with HIV and get in the way of getting life-saving health care. Within and outside the HIV-positive community, there are long-held, misguided assumptions about people living with HIV. Common themes are how people ‘deserve’ to have been diagnosed with HIV due to some moral flaws, how they are irresponsible, ‘dirty’, etc.
There is often an association of HIV and AIDS with other stigmatized identities based on race, sexual orientation, etc. and behaviours (i.e. sexual activity and drug use). It is important for health care providers to examine the association between the infection, the behaviors and the person and ensure they don’t perpetuate shame and blame.
These stigmatic assumptions are especially harmful to newly diagnosed PLHIV. People living with HIV can have casual sex, date, work, raise families, get pregnant, get married, etc. HIV should not keep anyone from love, friendship, family and community. HIV care providers don’t always know and/or deliver these messages to their patients, so it is extremely important that peer-based community HIV support is a standard part of HIV care.
Fear of getting infected with HIV through everyday contact leads people to take unnecessary, often stigmatizing actions. Health care workers need to be provided and/or seek out complete information about how HIV is and is not transmitted and about the modalities of universal precautions.
Make sure everyone with whom a patient comes in contact (e.g., doctors, nurses, receptionists, cleaners, administrative staff, etc) is included in any stigma reduction activities.
The involvement of people living with HIV is key to the development of policy, trainings, programs, educational material and guidelines related to the care of HIV+ people. Not only is their expertise invaluable, showing that HIV has a “human face” helps to better understand stigma and its insidious impact on people and their loved ones.
Carry accurate, up-to-date and culturally relevant information products on HIV/for HIV+ people.
Identifying Key Moments: Quick Tips
While there are challenges, solutions do exist. Here are some possible scenarios and suggestions to help build positive relationships for healthy bodies, healthy communities and healthy partnerships.
There is an emergency and you need to get care as soon as possible
Solution: Health care providers should have standard training on HIV transmission and on the sensitivities of HIV disclosure, including legal/criminal ramifications, and on the impact of breaches on confidentiality can have on individuals, especially in smaller communities. Forms and guidelines should be reviewed to ensure disclosure can happen in a safe way and confidentiality is maintained.
You are due for a check-up but you are working a double-shift this week
Solution: Blood labs and clinics should offer extended hours for PLHIV who absolutely require regular services outside working hours.
Something is bothering you and you are thinking of going to your family doctor/to the walk in clinic to check-in.
Solution: Care providers need to get involved with their community partners in care and map out who to work with to best support a diversity of patients, including HIV positive patients. Allowing community health partners increased access to health communications vehicles (such as medical conferences and publications) gives more credence to the important resources we provide and helps build invaluable partnerships.
Solution: Health care workers should welcome patients with a compassionate understanding of the special privacy needs and associated fears common among PLHIV. Check-in desks (or the check-in process) in walk-in clinics should offer some sort of privacy feature where one does not risk announcing their status to strangers in the waiting area. Guidelines should be reviewed to ensure that, for example, no one’s HIV status is disclosed by apposing a sticker on a chart, by having it clearly indicated on the computer screen or because the information is shared between health care providers where it can be heard.
Health care facilities should openly display publications, posters and information products about HIV in their waiting areas to help enhance a PLHIV’s comfort level in a new, unfamiliar environment and know that conversations about HIV are welcome.
If an intake form specifically asks for information regarding a patient’s HIV status, it should also include a disclaimer assuring the patient that such information is kept private and is strictly limited to the confines of the care giver/patient relationship.
You have a new partner who is HIV negative. You wish to discuss the sex you are having with your doctor/nurse as you have questions about how to prevent transmission.
Solution: Care providers should be familiar with current laws surrounding HIV disclosure in Canada. They should also be aware that it is not a care provider’s duty to disclose any patient’s HIV status to outside parties involved in a personal relationship with the patient or to any law enforcement professional. Instead, care providers and patients are advised to seeks guidelines on matters related to HIV disclosure and criminalization from the Canadian HIV /AIDS Legal Network.
Solution: Care providers must be aware that the complexities of HIV can be emotionally AND physically challenging for anyone living with HIV They must also demonstrate empathy rather than reproach when caring for PLHIV, including when they are seeking testing or care for STIs, when they are weighing pregnancy options, discussing their sexual partnerships, etc.
Refer to www.careregistry.ca for Positive Living BC’s comprehensive online community mapping resource of HIV-relevant service providers throughout BC
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