As a part of my interview series with leaders in healthcare, I had the pleasure to interview Michael Manganiello. Michael has lived with HIV for 30+ years, which has deeply impacted his lens for bringing patient advocacy into medical research over the years. Through the public policy firm he co-founded, HCM Strategists, he is on the frontlines of public health working with clients on precision medicine solutions,reducing stigma in the opioid crisis by advancing medication-assisted treatment, and protecting and expanding access to women’s health care. As co-founder and then the first senior vice president of government relations for the Christopher and Dana Reeve Foundation, Michael has particular expertise creating nontraditional, trusted partnerships with groups like communities and provider groups to make sure those who most need care have a voice and can access services when they need them.
Thank you so much for doing this with us! Can you tell us a story about what brought you to this specific career path?
Listen, I wasn’t born with the drive that leads so many talented people into the healthcare field. I spent my early career in the theatre and the restaurant industry.
Two experiences transformed my life and fueled my life-long passion for patient advocacy. One, I was diagnosed with HIV at a time when this was a death sentence. At age 28, I was told I had 18 months, max, to live. The second was when my best friend, Dana Reeve, told me the unimaginable happened: her husband, Chris, suffered a horrific accident and became paralyzed.
I realized that no matter who you are — whether you are living on the margins of society as I was as a gay man coming of age in the eighties, or an internationally beloved Hollywood actor, quite literally Superman — there comes a point when each one of us becomes not just a person, but a patient. What we do, and how our health care providers, families,friends and community mobilize to support us, when we become a patient is up to us.
Can you share the most interesting story that happened to you since you began leading your company?
Being selected by the NIH to help get a million new, traditionally underrepresented and historically oppressed Americans to take part in the largest clinical research cohort ever as part of it’s historic All of UsResearch Program is the most interesting and important thing I’ve ever been able to do since starting my firm, HCM Strategists.
Look, I get why so many communities are skeptical of the medical system and the role that research plays. I was a young, gay, HIV-positive man discriminated against in every possible way by his government and his fellow citizens. But my participation in medical research saved my life, and that’s how I know this project will catalyze major changes in medicine and improve health outcomes for Americans from all walks of life.
Can you tell our readers a bit about why you are an authority in the healthcare field?
I believe all patients — and therefore, all of us — are “authorities” in the health care field. I earned some of my bona fides in this regard as a participant in Dr. Tony Fauci’s groundbreaking clinical trial back in 1996. I became one of the first people on the AIDS drug “cocktail” that is now responsible for saving countless lives, including my own.
Then, as co-founder and senior vice president of government relations for the Christopher and Dana Reeve Foundation, I helped secure the introduction and passage of the Christopher and Dana Reeve Paralysis Act, which became law in 2009, and raised $50 million for the Christopher and Dana Reeve Paralysis Resource Center.
Today, at HCM Strategists, I’m helping to drive innovation in health care with a particular focus on those who have been traditionally marginalized in the health care system — namely, LGBTQI folks like me, people of color, women, people in rural communities and people with substance use disorders — by advising clients such as The National Institutes of Health (NIH), Planned Parenthood and others.
What makes your company stand out? Can you share a story?
What sets HCM Strategists apart from other firms working in the health care sector is our relentless push for equity in health care, with a particular focus on those who have been too often or too long forgotten by the medical powerbrokers. It’s in our DNA. It’s who we are.
I’m a survivor of the HIV/AIDS crisis, my colleagues are parents of children with chronic diseases, we are caretakers for our friends and family battling cancer, suffering from dementia and testing new therapies and cures. We approach our mission to drive innovation in patient engagement with clarity about our purpose, as both “experts” and patients.
I think one of the many reasons we have been so successful in our engagement with marginalized populations to enroll in the All of UsResearch Program is because I’m not just talking the talk, but walking the walk. I’m asking people from marginalized communities to engage in the medical research enterprise because, as someone from a marginalized community, I have participated in multiple clinical trials myself and not only lived to tell about the experiences, but have thrived because of these trials.
Can you share with our readers about the innovations that you are bringing to and/or see in the healthcare industry? How do you envision that this might disrupt the status quo? Which “pain point” is this trying to address?
HCM Strategists is proud to be driving innovation in patient engagement. In our work with the All of Us Research Program, we are engaging non-traditional community partners, like multiracial megachurches in Texas, in order to help raise awareness about medical research and how we can all benefit from greater participation. For example, through our trusted relationships we are seeing influencers in communities across the country talk about the value and importance of participation in research as a moral obligation and a scientific imperative.
Here’s the thing about innovation in health care: it doesn’t have to be that complicated to have a huge impact. Not too long ago, the Colorectal Cancer Alliance put a giant, inflatable colon in front of Union Station here in DC. Anyone riding the Northeast corridor had to walk through this thing to get into the station. What a brilliant way to raise awareness about critically important health screenings — and when you consider the steady increase in screenings in recent years, I’d call that kind of awareness “innovation.”
Are you working on any exciting new projects now? How do you think that will help people?
I’m really proud to help clients that are working to bring new and promising solutions to bear on the opioid crisis, which has been devastating to far too many families. In addition to working to reduce the stigma of medication assisted therapy, we have clients that are leveraging technology and app development to deliver a combination of behavioral therapy and medications to more effectively treat people with substance use disorders.
I’m also very excited about a couple of the projects we are working on to protect and expand access to sexual and reproductive health care.
These projects are all about driving toward equity in health care, which is long overdue.
What are your “5 Things I Wish Someone Told Me Before I Started” and why.
Five things I wish someone told me before I started HCM Strategists? Here we go:
- It is possible to match your passion with your profession. Don’t listen to anyone who tells you it’s not.
- When you build a company, what you’re actually doing is building a family. You grow to love your team, and the pressure to ensure they are stable and cared for is real.
- Growing a company isn’t just about bringing talent and clients together, you’ve also got to tend to the infrastructure and prioritize professional development for both yourself and your staff.
- If you’re going to run a health care company, you’ve got to live your values on health and wellness, and on diversity, equity and inclusion — all of it. At HCM Strategists, systems change starts right here.
- When your clients are struggling — and let’s face it, the whole health care field is going through a period of rapid and sustained transition — what they want is for you to roll up your sleeves and work alongside them. Our clients expect a true partnership and what they get is a team that operates as adjunct staff. We’re not a traditional, transactional firm and that’s by design.
Let’s jump to the main focus of our interview. According to this studycited by Newsweek, the US healthcare system is ranked as the worst among high income nations. This seems shocking. Can you share with us 3–5 reasons why you think the US is ranked so poorly?
The poor state of health care outcomes in our country is something I feel extremely passionate about, especially as one of the millions of Americans living with a chronic health care condition.
Big picture, far too many people have been forgotten by our health care system. It’s really that simple.
People of color, people who work for a living, people in rural communities, LGBTQI people, women — together, we are the majority of this country. But for years, and I mean decades, we have not been centered in the health care system:
- We’re historically not represented in clinical research, which means certain therapies and treatments simply don’t work for us.
- We’re not decision-makers at the health care companies we interact with. One reason I believe federally-qualified health centers (FQHCs) and LGBTQI health centers do such an exceptional job delivering quality and affordable care is that they have the patients and community they serve seated on their boards, so the needs and lived experiences of their patients is baked in the cake.
- Our health care outcomes are about so much more than what happens when we go to the doctor. Our health outcomes are about what it takes in terms of time off work and childcare and transportation to get to the doctor in the first place. They’re about how social stigma and bias adds stress to our daily lives. They’re about whether or not we can afford the cost of the care we need.
You are a “healthcare insider”. If you had the power to make a change, can you share 5 changes that need to be made to improve the overall US healthcare system? Please share a story or example for each.
Our health care system is only going to change if we start to view patients as “insiders” at each and every point across the care continuum.
What I mean is, patients should be truly and meaningfully engaged about:
- The design of clinical trials, to be sure they fit our lives.
- The approval of new treatments and therapies, to be sure they’re effective for as many of us as possible.
- The reimbursement policies set, to be sure the care we need is within our reach.
- The delivery system as a whole, to surface creative solutions to bring care to those most in need.
- The wraparound support we need to take control over our own health.
Thank you! It’s great to suggest changes, but what specific steps would need to be taken to implement your ideas? What can individuals, corporations, communities and leaders do to help?
What’s needed is for health care corporations and health care leaders to bring individual patients and our communities into the system and their decision-making, rather than keeping us out.
I completely understand many people’s skepticism about the medical establishment — I myself felt it as a gay man growing up during the AIDS crisis — but my plea to individuals is that they know they have everything to gain from being an active and full participant in their own health care.
My plea to health care companies and health care leaders is to change your frame of mind about how you go about engaging with patients. If you don’t know where to start, or need help making change happen, HCM Strategists is here to help you.
What are your favorite books, podcasts, or resources that inspire you to be a better healthcare leader? Can you explain why you like them?
And the Band Played On by Randy Schilts. This book, written by one of the most important and daring journalists covering the LGBTQ+ community during his lifetime, shows in painstaking detail how the media, politicians, scientists, health care providers and patients responded during the first few years of the HIV/AIDS crisis in America. Schilts’ conclusion is damning: ‘’The bitter truth was that AIDS did not just happen to America — it was allowed to happen.” The tragedy of the life of Randy Shilts is that he died of HIV/AIDS, the very disease he dedicated so much of his career to stopping.
The System by Haynes Johnson and David Broder. This book does a great job telling the story about the Clinton health reform effort, but more importantly it shows how hard it is to change our healthcare system, the forces working against changes, and how important it is that change agents stay the course.
Dreamland by Sam Quinones, which tells the story of how we arrived at the opioid epidemic in the United States. It shows that in order to fix a problem with the size and scope of the opioid epidemic, you first have to understand how we got to where we are. Only by understanding the roots of a public health crisis can you craft public policy solutions.
I also get a lot of inspiration from the arts. I think there’s no better way to see the world from someone else’s point of view than by seeing their reflection of the world in their art. The Leslie-Lohman Museum of Gay and Lesbian Art in New York City is a favorite.
How can our readers follow you on social media?
Thank you so much for these insights! This was so inspiring!