The Positive Side

Summer 2015 

The Engagement Cascade

David Hoe reports on the latest tool for helping people with HIV to reconnect with their health.

What to do when someone gets stuck and becomes used to neglecting their HIV care? Perhaps doesn’t even think of him or herself as “neglecting” their care? I should ask myself, really.

Recently, I decided to ask my doctor about my intestinal troubles—bloating and discomfort. “Oh,” he said about the bloating, “that would be the meds you’re on. Let’s change them. There are lots to choose from now.” I had been putting up with this for 10 years! Granted, I was satisfied with having an undetectable viral load and a fairly good CD4 count, and I generally felt well. But why did I wait all this time to ask?

“Ah,” the doctor continued, “I see you have some abnormal cells in your rectum. I’d missed that.” Once we got into a groove, I started asking about other things: “What about experimenting with stopping my antidepressants? What about…what about…?” And so it went.

It took a bit of time for me to bring up all the issues that were concerning me rather than the settling-for-what-is I had gotten used to. I realized that I had progressively reduced my HIV care and that I had not been to see my doctor for nearly a year.

Living well with HIV is a lifelong commitment that requires paying attention to our whole selves—our body as well as our mind and soul—and to many aspects of our lives. This includes making regular use of services—medical as well as other health and wellness programs—to improve our well-being. If we are not attentive to our own care, we do not do so well. These days, more and more of us are able to enjoy a longer life because of effective HIV medications and, perhaps more importantly, because we are paying better attention to ourselves.

We know that medical care is essential, but how can we engage meaningfully to improve our overall well-being and quality of life? What do we, as people living with HIV (PHAs), need to be aware of that affects how well we are, and how well we can become?

A group of PHAs asked ourselves these questions. The Poz Prevention Working Group of the Ontario Gay Men’s Sexual Health Alliance is made up of gay men from Ontario but the issues we discuss are, we believe, relevant to all people living with HIV.

We produced a discussion paper that looks at the engagement of people with HIV in treatment, prevention, care and life enhancement. In response to the HIV treatment cascade—a model that shows how well people with HIV are connected to the continuum of treatment-related services—we developed a model that we named the engagement cascade. Our goal was to reframe the treatment cascade to be more holistic and to better reflect the realities and lives of people living with HIV in order to help people take charge of their own engagement and care. We also wanted to educate those who provide care and services to us.

The treatment cascade

Think of a waterfall cascading downward over rocks and ledges, losing speed and intensity as it meets these barriers, and finally emptying into a pool below. The treatment cascade uses the image of a waterfall to show the diminishing engagement of people with HIV in HIV-related services, from testing to care and, ultimately, effective treatment with its proven prevention benefits.

Of the estimated total number of people living with HIV (1), the treatment cascade shows the percentage of us who have been diagnosed (2). Of those diagnosed, it shows a still smaller percentage who have been linked to health care (3). Of those initially linked to care, it shows the still smaller number of people who stay in contact with their care providers over time (4). Finally, the smallest number of all is those who have a suppressed viral load (5).

The Treatment Cascade: An Ontario Example

The treatment cascade raises the question: How does the health of so many people with HIV manage to dribble away through the cracks of health care, social services and treatment? How can we plug these leaks?

HIV epidemiologists are placing a great deal of emphasis on the collection of accurate information to inform the development of treatment cascades in locations across Canada. Right now, many jurisdictions are working to develop one. While Canada doesn’t have a national treatment cascade, British Columbia and Ontario have cascades that reflect provincial data. Researchers in Alberta also created a cascade based on data collected at the Southern Alberta HIV Clinic in Calgary. These numbers help to identify specific weaknesses and gaps in services, with the goal of helping as many people as possible to achieve and maintain viral suppression. This is good both for the health of people living with HIV and for preventing transmission of the virus.

The treatment cascade captures how well the healthcare system helps us to engage and stay engaged in the continuum of services and to what extent it falls short. It provides us a picture of the gaps in HIV-related services, raising important questions about how we can close those gaps:

  • How can testing be made more widely available so that the nearly one in four people living with HIV who are unaware of their HIV status can take steps to protect their health and the health of others?
  • How can service providers and policymakers ensure that all people living with HIV are linked to and retained in care?
  • How can HIV treatment be made more widely available?
  • How can people be supported to take their meds so they can achieve an undetectable viral load?
  • How can we best ensure that the enormous benefits of HIV treatment are realized?

In this way, the treatment cascade offers us a valuable tool.

What the epidemiological information of the treatment cascade does not capture are the lives and experiences of people living with HIV. It does not tell us about stigma and discrimination and what happens in our lives that influences our engagement in healthcare and our attention to our well-being. When a barrier prevents us from getting the care we need, it shows up in the cascade, but we don’t see the story behind it. Consider, for example, a young woman who leaves an abusive partner and moves to another town. She forgets her meds when she moves to safety. Amid the chaos she gets used to not taking her meds and does not connect with a new doctor. In the treatment cascade, it would merely register that this woman had not been retained in care.

The engagement cascade

The engagement cascade takes another approach—one that starts from the perspective of people living with HIV. When the Poz Prevention Working Group of the Ontario Gay Men’s Sexual Health Alliance set out to reframe the HIV treatment cascade to take into account our lived realities, we asked: What do we need to be meaningfully engaged in every aspect of our treatment and care? This is first and foremost about honouring the needs and lives of all PHAs, acknowledging that the great majority of people with HIV try to do the best with what they have, and about improving our experiences of living with HIV. This will impact our health outcomes and help close the gaps we see in the treatment cascade.

Every day we make dozens of decisions that have an impact on our quality of life—what we eat, how we play, what we think about ourselves as we wake up, how we manage our addictions, how our love life is going, how we see our bodies, and so on.

In the middle of all of these decisions is HIV. Most of us would probably say that the arrival of an HIV-positive test result makes us rethink life. From then on, it becomes a player in our lives—sometimes more, sometimes less.

Engagement is more than just showing up for your doctors appointments; it’s a holistic attitude toward your role in your health. The healthier we are as individuals—physically, mentally, spiritually, emotionally—the more we are able to have meaningful relationships with the people we care about and the communities we’re a part of. For some people with HIV—those of us who were raised to value and care for our bodies and minds, those of us who have a spiritual practice, a raison d’être or a loving connection to our community—becoming and staying healthy may be relatively easy, requiring a few tune-ups and tweaks now and then. But many of us struggle for much of our life to be fully healthy and need a great deal of support along the way.

In developing the engagement cascade, we attempted to capture what we need to pay attention to about ourselves and how healthcare and other service providers can support our engagement and deliver PHA-centred care.

We’ve pinpointed six main considerations and created a handy tool to help PHAs and healthcare providers use these six statements. At any time of doubt, feeling disconnected or wondering about next steps, PHAs and healthcare providers can use this tool to reflect or prompt a helpful discussion.

Gone are the days of expecting a shorter life, when our sole concern was survival. If you have not seen your doctor for a while or there’s a part of you that feels stuck and that is influencing your care and engagement, reflect on these six points.

In truth, it was in writing this article that I asked myself: “Well, what about me? Am I getting what I want as I get older? Can I feel more vibrant and well in any way?” Since I have begun to put myself first again, my sleep is better and my stomach is happier. I plan to keep checking in with myself periodically to see what else I can do to get more energy and balance in life.

For people living with HIV

For service providers

I matter. Every person matters. You matter and are an important part of humanity.

What you think, feel and do will make a difference to what happens next! If you don’t think you are important and precious, then it is more likely that you will ignore your care. Taking care means seeing ourselves as important and worthy of attention.

My client matters. Value each of us as human beings and recognize that we are the experts of our own experience. Ask us questions and give us opportunities to participate fully in our care.

While symptoms and test results may be what get recorded in our charts, those are but one small sliver of what matters to our health and the interaction we have with you.

I belong. What can you do to feel more connected to others? Creating a sense of belonging and safety will help foster your health and wellness. Belonging is about a sense of social inclusion and knowing who the best people are to have around you.

My client belongs. Take a look at how we are connected to the people around us and explore how we might make our homes, workplaces and communities safer and more welcoming.

I participate. What are you doing to play an active role in your healthcare and overall wellness?

Ask all the questions you have about your health and wellness. You have a right to ask questions and make informed choices.

My client participates. Make sure you leave space and opportunity for us to ask questions and give opinions.

I access. Are you getting the services you want and need? Take the time to think about your health and how it can be improved. What can you do to help make it happen? Are there resources and supports that could help you with your mental health, stress, sleep, addictions, sexual health and HIV care?

My client accesses. Are you aware of the services—healthcare, social services, financial supports—that could benefit our health and wellness? What can you do to help us connect with services? What doors can you open?

I contribute. What can you do for yourself and for others? How can you give to yourself and others in ways that will make a difference? Take the time to imagine better things for yourself and others—and act on those ideas.

My client has opportunities to contribute. How you can support and encourage our self-care and opportunities for us to care for others?

I desire. What in life do you want more of?

You were born with passion and the right to live as you choose. HIV doesn’t change that. Pursuing your wishes and dreams will make a big difference to your overall health and well-being. Experiment and see what excites you.

My client desires. Make time to ask us about our goals and wishes for the future. And take time to listen.

David Hoe is a life coach who has been living with HIV since 1984. Don’t miss his interview on “Sexual Healing” from the Fall/Winter 2005 issue of The Positive Side.