Beyond the Advisory Council: The Board Room Needs Us Too

In 1983, a group of people with AIDS gathered in Denver and created the Denver Principles. This helped change how people living with HIV and AIDS understood their place within healthcare, advocacy, and the decisions being made about their lives.

This also rejected the idea that people with AIDS should simply be passive recipients of care or subjects of discussion.

Among the recommendations they wrote specifically was one that I take personally: “Be involved at every level of decision-making and specifically serve on the Boards of Directors of provider organizations.”

Those words remain ambitious, and they raise a question I believe we should continue asking: Have we fully lived up to them?

People living with HIV belong where decisions are being made

The HIV community has spent decades fighting to protect the principle that people living with HIV must have a meaningful role in the decisions affecting our lives.

Healthcare has made enormous progress in recognizing the importance of lived experience. Advisory councils and community engagement initiatives have created opportunities for people to tell healthcare organizations what is working and what is not.

I believe in these structures, but they should not be the ceiling.

What if people with lived experience are not merely individuals healthcare organizations should consult, but people whose expertise belongs within the governance structures where decisions are actually made?

For me, that question is not theoretical. It is the story of my own life.

My story

I was diagnosed with HIV in 2009. By 2010, I had progressed to AIDS, with a CD4 count of approximately 10. I became critically ill, and there was a period when the expectation was not that I would build a career in advocacy.

The immediate question was whether I would live.

I did.

Even now, describing myself as an "AIDS Survivor" feels uncomfortable. I know how sick I became and how uncertain my future was. Yet there are some realities that remain surreal even after you have lived through them, and calling myself a survivor is still one of those for me.

At one of the lowest points in my life, I was not treated as a diagnosis or a statistic. I was treated as a person. People cared for the human being underneath all of the medical complexity, and when so much about my future was uncertain, that mattered.

I never forgot it.

Now, I play a decision-making role where I received care

15 years later, I joined the Board of Directors of the same organization I received care from.

I found myself surrounded by talented and intelligent people who brought expertise from many different professions. Yet when it came to representing the lived experience of people living with HIV, I stood alone.

We were seeing the same organization through different windows. What dumbfounded me was realizing how easily my particular window could have remained empty.

There are moments when I stop and consider the distance between those two places: being critically ill with AIDS and a CD4 count around 10, dependent upon a healthcare system to help keep me alive, and years later sitting in the board room of that same organization with a vote in its governance.

That experience has changed how I understand the value of lived experience.

At times, I questioned if I belonged in the board room

Before illness changed the trajectory of my life, my professional background had largely been in retail management and special education.

Now, I was out of my element, and for a brief time I struggled with imposter syndrome. What exactly I was doing here?

I brought education and professional experience with me, but I also knew what it was like to depend upon the systems we were governing.

That experience was valuable, but it did not automatically make me qualified to govern an organization. Lived experience should be respected as expertise, but it should not be romanticized.

Joining a governing board brings several responsibilities. If I was going to occupy that seat, I wanted to earn it.

So I started learning.

I became involved in the world of advocacy

I asked questions and connected with resources, including my statewide HIV planning infrastructure and a federally recognized training organization offering board leadership education specifically relevant to AIDS service organizations.

I learned how to better questions, understand the conversations taking place around me, recognize where my own expertise ended, and contribute when lived experience, policy, quality, and clinical care intersected.

And as I learned, my world became much larger.

Expanding into patient engagement, civic, and political spaces

I was invited by one of my state's leading medical institutions to participate as a member of its HIV clinic team in a national HRSA Ryan White quality improvement collaborative. I began developing relationships with organizations and attending conferences.

Social media became part of that transformation. I began using platforms that I had once treated casually as tools for advocacy. Eventually, that journey carried me into civic and political spaces as well.

All the while, surviving AIDS did not mean walking away without consequences. My immune system never fully rebounded, and I continue to live with significant chronic health conditions.

There are limits I still have to respect, no matter how enthusiastically I try to negotiate with them.

Regardless, I was being seen. Yet through all of it, I was simply “Mike.” Titles have never meant very much to me. Having the opportunity to be involved meant far more to me than any title ever could.

We need to open doors, so everyone can walk through them

When I first entered that board room, I didn't have this network. I contributed perspectives that sometimes caused people to look at an issue differently. Just as importantly, I learned from everyone around me.

Eventually, I stopped entering rooms wondering why someone like me had been invited and started entering them thinking about what I could contribute while I was there.

That is why opening the door matters. A person cannot prove what they can contribute to governance, leadership, healthcare, or their community if we never give them the opportunity to walk through it.

The Denver Principles recognized that possibility in 1983. More than 40 years later, perhaps the most meaningful way we can honor them is to make sure the doors they fought to open remain open wide enough for others to walk through.