HIV-related stigma and discrimination refers to prejudice, negative attitudes and abuse directed at people living with HIV and AIDS. In 35% of countries with available data, over 50% of people report having discriminatory attitudes towards people living with HIV.1
Stigma and discrimination also makes people vulnerable to HIV. Those most at risk to HIV (key affected populations) continue to face stigma and discrimination based on their actual or perceived health status, race, socioeconomic status, age, sex, sexual orientation or gender identity or other grounds.
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I believe that there is bias in the community, it is sad that even though people are more open to admit their status they are still embarrassed when it comes to going to IDC or their primary care doctors.
I am included in this as I just went through something. Unfortunately we have all these new young people coming into the clinics becoming doctors and not knowing how to go about helping or connecting with the patients. I definitely prefer to see the same attending or doctor each time I go not only do I feel better, but it eliminates having to deal with someone that does not know my case. Sometimes a doctor may not know what medications I am taking or what I am there for (follow up or just blood work). Also each clinic is different sometimes there is a window just for IDC, and everyone stares at you when you go up to that specific window. So it is understandable when a person feels uncomfortable and does not want to go to the doctor. Then there is the medication if a person calls or picks up and the pharmacy asks what medications a person is looking for or waiting on sometimes once this is disclosed the staff person gives a look. I think there needs to be more discretion for patients that are not ready for everyone to know their status. That would be a start and also teach these healthcare providers that are new to treat and make everyone feel comfortable that would also help.
Biases that exist in the way of healthcare system are many of the same biases that systematically exist across most socio-economic spectrums. Income Inequality and lack of education/knowledge.
Income Inequality affect who and how people utilize healthcare and treatment options via adequate medical coverage and the benefits that come with it. Many people cannot afford adequate medical coverage for most chronic issues and are therefore relegated to accessing subpar care and generic medicines that often do not help their condition as well as they should. In addition to that most doctors that are not in private practice are not offering their poor patients the same opportunities as their wealthier patients or patients with coverage. Lack of education and or knowledge regarding healthcare treatment and options or even simply understanding your disease is a big problem; Knowledge is POWER!The simple solutions are EDUCATE one’s self and VOTE.
I believe the biases that exist in the delivery of healthcare services are rooted in history. Disparity rears its ugly head throughout our daily lives, it is systematic. In decades past the medical community used people of color and poor white people to experiment with new treatments and medications in order to determine their efficacy or their failure. The stories of these experiments were passed down from generation to generation, which translated to mistrust and fear of receiving medical care of any kind. I also believe that the lack of diversity and cultural awareness in the medical community is a factor in how services are delivered. If a patient has a limited vocabulary or speaks another language or identifies as LGBTQIA the provider might not understand how to address the patient’s concerns, which will cause frustration and possibly a wrong diagnosis. My first suggestion to confront biases in delivery of healthcare would be to open up our education system by valuing all children and offering free college so that the medical professional could become more diverse. Secondly, I believe we should abandon our for profit healthcare system, that does not serve all people equally, and move to Medicare for all.
Yes, I do believe there are biases. It is not all doctors or every clinic but it is widespread and any and all bias is not appropriate, even once.
I have experienced, first hand, the bias around substance use. From one minute to the next, a nurse, doctor, etc would treat me with respect and then the next minute….based on something they thought (not even fact) their behavior towards me changed. They started being extremely questioning, judgmental and disbelieving. I have even seen and heard faces expressions and comments from one nurse to the other. I, of course, call people out on their behavior because I feel it is important for the next person who comes behind me.
We need to be consistent with filing complaints when necessary and not fear repercussions. We need to educate the healthcare system about issues which may be misunderstood i.e. HIV/STI’s, Hepatitis C Virus (HCV), substance use, mental health. Until, the healthcare system is a judge-free zone, unfortunately, people will continue to disconnect from care, not engage in care or attend sporadically. If we want to End the Epidemic, we must fix the healthcare system, so everyone no matter what race, color, gender identity or economic status, will receive fair and equitable healthcare.
The biases that exist come from years of medical abuse of marginalized people. Marginalized people have always been treated like numbers. It is why you see certain healthcare issues more prevalent in those communities than others. The services are often being provided by people that do not look like the community in spaces that do not reflect us. There has also been no real work done to correct the discrimination we have seen from the healthcare system.
This prevents people from wanting to use these services. They carry this trauma over several generations and it becomes a cycle of poor health patterns within families and communities.
My recommendation is that first, the healthcare system does a community assessment to see what the wants and needs are of the community versus what they are providing. I would also have them become more reflective of the areas and communities they are serving, if not in staff then at least in literature and signage being provided to the clients. Lastly, healthcare MUST begin meeting people where they are at. Some people are not going to utilize something even when they have access to it. You might have to literally bring the service to them and help them build the self efficacy to one day utilize it for themselves.
I believe there are some serious health disparities within many of our communities. Aside from stigma, accessibility, and properly trained staff, I feel there are very few healthcare biases. We all have to fight for our seat at the dinner table when it comes to the funding and I know there are groups and demographics that are not fully represented leaving gaps in the continuum of care. This needs to be at the forefront of our local political agendas. In this age, it is easy to get artificial everything anywhere, healthcare on the other hand does not seem to be the case.
As a Hardcore Treatment Advocate on biases that exist in the way my healthcare services are delivered is that all my doctor cares about seems to be that as long as I am virally suppressed everything else is fine. This is so not the case. Over time medication affects other organs of the body. The medication raises my CD4 count and has me with the undetectable viral load, but what happens over time when or if it affects my kidneys. This has been a huge bias that I feel my doctor does not care about my entire well being. I feel she only cares that I have the status of her patient being an U=U individual.
How have I dealt with this bias? By having a conversation with my doctor to relay my thoughts and feelings concerning my healthcare. My health is more than a job. How about caring and going the extra mile beyond just tests. The last and end result will be finding another doctor. Everything and everyone is not for everybody. My healthcare is very important to me. If it does not work I have to find what does work for me.
I believe there are biases towards lower income individuals and the uninsured. I have seen clinics flat out turn people away if they are not insured with no regard for the human well-being. The way these individuals are looked at and spoken to is despicable. To correct this, state wide as well as nation wide sensitivity training should be implemented at all hospitals and clinics to ensure that healthcare providers are helping diagnosed patients navigate receiving insurance, knowing their rights as a patient, as well as teaching patients how to advocate for themselves.
I feel like most healthcare services think that people will not change, especially when it comes to the HIV community. I also think that when healthcare providers learn that someone has HIV, some believe that it was something that the person did to him or herself. That somehow a person did something to deserve it, because maybe he or she had unprotected sex, or used drugs in order to get HIV. I feel that the whole medical community including eye doctors, and dentists should first be given more training on caring for people that are HIV positive. Although, it may not be their specialty people that are HIV positive need all kinds of services. I know for a fact that a lot of the time I will not go to a certain provider because of the fear of how they may treat me. I think that meeting people where they are at is an important lesson to be taught to all. When we start to show that we care about the person, only then will we get better results with people following through with whatever treatment they are seeking. The stigma of HIV is alive and well but the only way to erase the stigma is with information, education, empathy, and compassion. I recommend that medical professionals stop looking at my HIV as a curse or something bad. My HIV is simply a small piece of who I am, not what I am.
I think there are both ‘implicit biases’ in how the system works as well as the individuals biases of different care providers/systems. For those who are not familiar with the term, implicit bias is the way our upbringing, education, attitudes, and exposure to stereotypes affects the way we behave without recognizing it. We ALL have implicit bias that impacts the way we interact with the world. The problem with HIV is that the education, attitudes, and stereotypes regarding HIV have been so significant and so overwhelmingly negative for the past (almost) 40 years of this epidemic. While attitudes and education are starting to change, most of the people we encounter in healthcare and social services do not have the new information to challenge these old beliefs and that results in fear and stigma. I have seen the looks on people’s faces when I have disclosed my HIV status. I have had really great experiences with dentists and terrible experiences with OBGYNs. I have had mixed reactions from pharmacists–which is a huge problem because being embarrassed at the pharmacy counter means you may NEVER EVER EVER want to go back there again. When people do not have accurate knowledge, they cannot make accurate decisions. There is also still the ‘hierarchy’ of infection where different risk groups are treated differently based on the notion of ‘fault’ and ‘responsibility’ or even the ‘failings’ of our parents. All of these implicit biases affect how we are treated even if the person doing it is not aware of how or what they are doing. This is not saying that some people are not just down right rude, but some people are just acting on outdated information.
System biases are different. Most hospitals, clinics, and social service settings are designed to meet the needs of people between 8am-5pm. Perhaps, back in the day, when a lot of us were very sick and not working that made sense, but the modern HIV patient works and goes to school and cares for aging parents and raises children (sometime all at the same time). While most other functions in people’s lives have been automated or conducted electronically (paying bills, texting, online banking, etc) we do not often find that health care works that way. Not a lot of places allow you to schedule appts online, very few programs have a number that you can access services via text, and trying to keep your benefits on can be an act of God. While you can apply for SNAP (food stamps) online in New York State, you have to apply in person, through the mail, or over the phone for Medicaid. And then, even if you do start through the phone or mail, you are still going to have to conduct multiple follow up appointments, calls, letters to get in all the supplemental documentation. AIDS drug assistance programs (ADAP) applications have to be submitted through scan or fax. There should be an APP people can use to renew their benefits or the option to download their social security award letter to their phone. Due to budget cuts, there are not enough front line staff so patients can call and call without someone answering the phone, and may not have a good number (or minutes) available for a call back.
We need to continue to educate the general medical and social service community about the advancement in the prevention, care, and treatment of HIV. We need to incorporate technology like so many other industries have to make people’s lives and health management easier. And we need to stop cutting funding to programs that provide invaluable life saving services to people.