As an advocate navigator, former community health care worker and a woman living with HIV, Alice Ferguson has seen many people with HIV in the community who do not get the level of care and services they need. She participated on behalf of the National Association of Community Health Workers in a virtual three-part policy consultation series hosted by HIVMA this past spring to discuss innovative health care delivery models for improving health care access, health outcomes and quality of life for people with HIV and people at risk HIV. The goal was to come away with an action plan for doing things differently.
In this final post in a series with participants, Ferguson shares her perspective on the need for improvements in how HIV care is delivered and the role of community health workers.
Why did you make time to participate in these meetings?
I thought it was an opportunity to express the perspective of community health workers because I know the value that we bring to health care. We wear a lot of hats, but we go in and hear the stories, speak to those affected with whatever and help guide them to their best outcome given what is going on with them. It is about helping a person get to a better place, which does not always mean being “compliant in care,” but we can help move the needle in that direction. Providers do not have the time to hear the intricacies of what’s going on, but community health workers can make the time and bring important information to the provider.
Why do we need to do things differently?
This is a sore spot because in my experience, providers are overwhelmed with data reporting, and some are losing sight of the other essentials. It is important to consider the big picture, but because health care is driven by the pharmaceutical industry and insurers who require a certain way of doing things, it is not always about getting people to the best health outcome for them.
We have lost sight that the real enemy is HIV. I am a 33-year HIV survivor. I see so many people [with HIV] in the community who do not get the basics of what they need. I have benefited a lot from providers, but most people do not get the level of health care and service that I have gotten. This is why what HIVMA is doing is necessary.
I got involved with the goal of giving a voice to those that can’t speak. I could always speak and speak clearly without being stuck on what’s personally happening in my life, but this is especially difficult for people who are unsheltered. They are beaten down on so many levels, so when it comes to taking care of their health, they feel overwhelmed.
What would it take to implement new health care models in your communities?
We need to teach those who are in positions of power why peer navigators are so valuable to health care. Also, it’s important for community health workers and people with lived experience to be sitting at decision-making tables, but it’s difficult because bureaucracy is so intimidating.
It’s important to support community health workers and recognize the value they bring to individuals who are reluctant to access health care. CHWs are there to go with people and speak for them if needed. I see my job as helping providers understand what the patient is experiencing. I love being that bridge because often my clients could not express it, and the doctor may never, or not know, to ask.
A lot influences our health and health care. Doctors are not God, so it’s important for clients to understand this and not be afraid to ask questions. Clients often are concerned with being judged even when help is involved. It is important to build relationships and meet your client where they are. I have experienced this firsthand when my provider asked me, “Why in the world would you smoke for 30 years?” This treatment happens to minority women more than anyone. I don’t have to take this to get well. We can and must do better.
What was your most important takeaway from the meetings?
Just being in the “Zoom” room with likeminded people was an inspiration that yes, what I do, the work of community health workers and other advocates, is worth it. People with bigger and stronger minds than me are still trying to fight this fight. This body of people spoke to me: “OK, you can be a part of a good change.”
Many of the people I worked with across several communities are not here anymore. Valiant people who knew people’s lives were important even when they have HIV, drug addiction or other issues. People can be ashamed almost to death. I had no idea I had any value in this world. These lessons are much wider than HIV. With HIV medications, we moved the needle so far, but we need to catch the people up with the researchers. People don’t know what they don’t know. You can live a wonderful life with HIV. Making people understand this is how we best address what’s going on.
HIVMA is asking the right questions. A lot of people do not ask because they don’t want to know the answer — that’s the tragedy. If you ask, you are going to get an answer. This was the most critical reason why I needed to be a part of these meetings.
Don't miss the other posts in the series, featuring Kathleen A. McManus, MD, MS, who discusses why new care models are needed and what it will take to implement them, and Rupa Patel, MD, MPH, who shares her perspective and key takeaways as a provider.