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Beyond Blood With Justin Miller

4 years ago

There are so many people who suffer from HIV around the world. Yet only 6% of the church feels they have a personal responsibility to care for people living with HIV and AIDS. Struck by the 94% who didn’t know or care, Justin Miller has made it his mission to understand the big players and actors around this epidemic. Cofounding Care for AIDS, he aims to mobilize the church in caring both physically and spiritually for families affected by HIV/AIDS in Kenya. In this episode, Justin shares the origin story of his mission and how he and his organization has been helping those affected to fight the stigma and reconnect them with their community. Giving us a peek into his book, Beyond Blood, he also talks about spreading awareness amidst the growing sense of fatigue around this issue.

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Listen To The Episode Here

Beyond Blood With Justin Miller

Care For AIDS

We have Justin Miller. Justin grew up in Fayetteville, Georgia and has spent the past decade working to solve some of the world’s most complex social problems with the heart of an entrepreneur. As the Cofounder and CEO of Care for AIDS, he has dedicated his life and leadership to empower people throughout East Africa to live a life beyond AIDS. Justin’s home base is in Atlanta, Georgia, where he leads the US office of Care for AIDS. Justin is also a co-author of the book, Beyond Blood, available on Amazon and other bookselling platforms. Justin is doing some incredible work. He has an amazing life story and it was a true pleasure to have him on the podcast to share his story. Please welcome, Justin Miller.

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Justin, how are you?

I’m doing well. Thanks for having me, Kevin.

You have an incredible story. You’re very passionate about what you do. I’m excited to get more information of all the great work and the great cause you’re working for. Justin, where are you from originally?

I was born and raised in Atlanta, Georgia.

I have been there a couple of times.

It’s a great place. I grew up in the suburbs of Atlanta, but I have made my home in the city in the last several years and have fallen in love all again with the City of Atlanta.

What were you into growing up as a kid?

My childhood was filled with an amazing family. I love playing sports and I love basketball, baseball, football, me and my brother growing up. My younger brother, David, is a big part of my story. He has severe developmental disabilities and was a very powerful force in shaping my life growing up. I have a great family. We love to travel and that has stuck with me. East Africa is now a big part of my life. That was instilled in me from a young age of seeking out new places, new adventures and things like that.

Have you always been drawn to going to new places as a young kid?

Absolutely. I’m not sure that’s how I was wired or how I was conditioned. My dad especially is a fanatic about new experiences and we can only be as original and creative as the types of experiences and the people and things that we put into our mind. He made a point to create those experiences for me growing up.

It’s amazing what you can bring back with you from another country, from the culture and the sites and it changes you and shapes you as a person. Justin, how did you get into doing what you’re doing now, the Care for AIDS project and the passionate work you’re doing right now?

This was a complete 180 from the direction that I was headed in my life.

You didn’t see it coming at all.

I was totally blindsided here.

Those are my favorite stories.

I went to college in Nashville, Tennessee at Vanderbilt University. It’s an amazing town. I was pursuing pretty much a Business degree and was thinking my dad has been in business for 40 years and as a hero of mine, I plotted my own course in many ways that looked a lot like his. I was always involved in the church growing up and I had been on short-term trips internationally. Being in a type of either vocational ministry role or any social services role was not something I imagined in my future at all. Out of nowhere, I was at this conference in 2006 and I heard Bono give a presentation about HIV and AIDS. This is a conference primarily of church leaders. He was obviously talking about the devastation that was being experienced around the world at the hands of HIV. What he also talked about was the noticeable absence of the church. I’m talking about the broader church here, the broader faith community in addressing this epidemic. He said that only 6% of the church feels that they have a personal responsibility to care for people living with HIV and AIDS. I was struck by this 94% that didn’t know or care about HIV. I was in that 94% and I needed to confront that and deal with that.

I started down this path of researching and understanding what was happening in the world of HIV and who were the big players and actors in trying to help alleviate the suffering around this epidemic. Ultimately, I found that there were very few people that were coming at it from a faith angle and that were creating programs and interventions to address it with that lens. I ended up in Kenya the following summer on a discovery trip to learn more. We were shooting a documentary with a small team about HIV and AIDS. It was meant to be a tool we could use to help challenge the American church in their response. The next thing you know, this organization was being born.

Justin, how bad or was it or is it over there? Growing up in America, you hear that it’s bad over there, but you don’t really have any actual eyes on it. How bad is the epidemic and why is it so bad over there?

It’s not a simple answer but let me give it my best shot. The first thing I would say is that we have made a lot of gains in the work of HIV in the last decade. A lot of people haven’t heard about it in about a decade. It’s largely been out of the public’s consciousness, but the battle is still raging on and with upwards of 1.7 million new infections every single year. The fight is far from over and many people are believing that. We’ve been at this for about 40 years and there is a growing sense of fatigue around this issue. If we don’t stay committed to the fight, there’s a chance there could be a resurgence that could happen in the next decade or two. We’re hopeful that there will be even better treatments and that there will be a vaccine in the future. For the time being, still close to a million people a year are losing their lives because of HIV. There’s still a lot more work to be done.

You said resurgence. One million people a year is plenty. How bad was it 10, 15, 20 years ago?

There was a time when it was close to 2.5 million to 3 million people.

You guys are doing some great work for sure.

We need a lot larger community around us of that, of players in this space. We’ve made a ton of progress. Even transmission from mother to child is something that we have seen a dramatic reduction and the number of new infections and deaths is declining. Neither are declining as fast as we want or hope, but there are some bright spots in the fight. There are also some concerns that we need to continue to stay focused on our response.

Is it the lack of medical attention these people more have access to many years ago, that’s why it was spreading uncontrollably? Now that more money is coming in, you guys can step in and get more doctors, more medicine and more attention to the area that’s why it’s calmed down a little bit?

The idea of getting people tested and treated for HIV is the tip of the spear. If people don’t know they have it, that’s a big problem. If they don’t have access to medication, that’s a big problem. If they don’t know how to take their medication properly and they don’t adhere to it, that’s a problem. Those are three things that the global health community is working a lot on, but we believe that the issues are deeper than that. This is not about more and better access to healthcare because the social and the economic factors that affect people living with HIV and AIDS are so much more complex than just getting access to medication. Take for example, stigma. Stigma is a very real force that creates isolation for people with HIV. It forces them to oftentimes leave the workforce because of their disease or the shame that they feel about the disease. They’re cut off from meaningful social connections and ties to family that provide them that economic support. The list goes on and on.

If you don’t address some of those broader issues, people might access medication but they may not be committed to take it because they don’t see hope for their future. You’ve lost all of the meaningful relationships around you and you don’t think you’re going to be able to work and you were hoping that you could at least rely on God in some way. The church has now shared a message that said, “No, because you have this disease, God doesn’t love you anymore.” It is a complete lie, but it’s a lie that’s being preached in many churches still. You take all those factors and it’s hard for someone with HIV to overcome that if the intervention is not focused on addressing multiple relationships in their life as opposed to just their physical health.

I imagine instilling hope is one of the main things you bring to the table. You’re talking to large groups of people and letting them know that there is hope. It’s not going to be easy but there are some ways that you can help beat this disease here.

That is the goal. We take an approach that goes deep with our clients. It’s not us trying to appeal to the masses here. We have 67 communities and at any given time, we have approximately 5,000 clients that are under our care and we are going to walk with them for a period of 9 months or 18 months depending on whether or not they’re in an urban context or in a rural context. We’re going to build a deep relationship based on trust with that client and then help to rebuild their identity, their sense of self-worth. We’ll break down the stigma and the lies that they believed about who they are, reconnect them with meaningful relationships in their community and equip them with the skills they need to start a small business to support their family. Hopefully, we reconnect them to a local church or a place of faith and continue to walk with them over a period of time so that when they leave our program, they’re completely self-sufficient.

Justin, walk me through your foundation here because it seems like you’ve grown tremendously over the years and I’m sure with any other startup, it was a rough go in the beginning. How did you even find the resources and know which direction to even go? Were you guided and each step you took, more things fell into place? How did it work? You graduated from school and then you’re off to Kenya. What happened after that to help you get to where you’re at?

You’re right, it was one step at a time and we stumbled a lot in the beginning. I wish I had a roadmap for that and there wasn’t one. I’ve come back from that trip from Kenya, not only having seen firsthand but the people that live with HIV AIDS became faces. Also, what came out of that was I met my two Cofounders, Cornel and Duncan. This organization would never have gotten past that first trip where if not for these two Kenyan guys who have a remarkable story of their own, both intimately affected with HIV and their close families, but also they’re from opposing tribes in Kenya. Their relationship is still somewhat taboo in a culture where tribal divisions are prominent. Their unity and commitment to this as a pair of cofounders have been remarkable and has set Care for AIDS apart. It has been one of our key defining successes as an organization.

First of all, I have two guys that I have trusted implicitly for the past years running the operations on the ground, being a good steward of people and resources and continuing to lead the organization. They’ve obviously worked godsend to this whole organization. On this side of things, I didn’t know the first thing about starting an organization. I just knew that Cornel and Duncan needed about $200 to start to get the first step of this organization. If you look at where we are, and if I had known all that would be required in the future, that would have been probably a pretty intimidating step to take.

You might have done it.

At the time, it was like, “I can do something. These guys need $200 a month. Can I do that?” I did that. It’s like, “We need to form a nonprofit. Let’s figure out how do we register a nonprofit?” We found some counselors who advised us on that. We need to create a plan for, “What is the program going to look like? What’s the impact that we’re trying to create?” We had a lot of smart people help us think through our plan. We’ve got to figure out how to tell the story. Let’s invite some people to help us transmit what we’re learning in East Africa and come back and tell the story here. We did have a lot of wise counselors around us but it was one step at a time. For the first two years, many entrepreneurs, it was just me here in the US. I wore every hat possible. That’s what you have to do. Over time, as I’ve built a high-performing team around me, we don’t see a ton of breadth and scale.

Justin, how does it work when you guys enter a new community? What’s the first step you take and how do you get these people on board and get them the help they need?

The first element, we obviously have to identify the community first. We did a lot of research to try to understand what’s the state of HIV in this area. We want to look at prevalence of HIV and the transmission rates.

What are the living conditions like over there?

In most of our communities, urban slums have been the primary target of our care. Those are places where a lot of organizations are pretty hesitant to enter into. There are security issues in some of them, but it’s more the fact that from a development perspective, it’s hard to see a way out of these communities. Sometimes 500,000 people are living in an area and it’s hard to know where to start and where to end. It’s a big project and we’re not trying to boil the ocean here. We know that we can’t care for everybody in that community. When we go in, we are always going to link up with a church in that community. That’s the mechanism by which we deliver services to the community. We have to find a like-minded church with leadership that is aligned with us, that want to invite this community of people with HIV into their space. Not every church is onboard with that but those that are, make for great partners.

We set out into a period of doing some outreach in the community and doing some work to understand the context that we’re working in. We hold stakeholder meetings with key leaders in the community to understand where does Care for AIDS fit into this ecosystem. We hold medical camps at the church where people can come and get tested for HIV, but also for other types of things like tuberculosis to cervical cancer. We start to sensitize the community to the idea of our program. By the time we finish that phase, typically we hire two full-time staff from that community. They’re going to run our program there and the lifespan of a typical program is about ten years. We’re not just going to drop in.

That’s my next question. That’s a beautiful thing.

We want to be there for about a decade as we provide a lot of direct services and then ultimately turnover a lot of responsibility to the local church to continue doing the program to work on. Once we hired those two full-time staff, they go out and they recruit the first class of men and women who are going to be in our program. We do specialize in working with men and women who are over the age of eighteen. The reason why is because we felt like that was one of the biggest breakdowns happening. These families were falling apart because one or both parents were dying of HIV or was too sick to be able to be there for their kids. We’re focused on preserving the family, strengthening the family, and helping these parents have the opportunity to raise and educate their own kids. We’ll take in that first cohort of 80 clients based on their level of needs. We’re going to look at their vulnerability and some different criteria for that and take in the 80 as we see it, the most 80 vulnerable families in the community that could benefit the most from our services. We’re going to walk with them for about a year.

It’s got to be an extremely humbling experience to work in that area and be surrounded by people because although they’re struggling, I’m sure they’re very grateful for your help. Despite all their issues, they genuinely might be very happy people with the little they have, correct?

Correct. I’ve heard you talk about this before, Kevin, is when you get down to it, at least the worldview that we hold is that people have four key relationships that are important. They have a relationship with God, a relationship with themselves, a relationship with other people and one with creation. That relates to their meaning through work. We think work is important. Most people in these contexts in Africa have healthy relationships in a lot of those frontends. They have so much joy. You start to see HIV quickly disintegrate those relationships, “I’m not sure if God loves me anymore. I’m not worthy because I have HIV. My community has abandoned me and I feel purposeless because I can’t work. I don’t have any skills and no one will hire me.” Generally speaking in Africa, there is joy and a balance in most contexts that you can see the way the people with HIV sometimes carry as those key things that are so important to them have been taken away from them. Our main focus is we’d love to see people lifted from a slightly higher level of material wealth or escape from a little bit of material poverty. That’s secondary too. Can we restore these four key relationships? That will put them in a path and a place where they can help lift themselves out of material poverty.

How has this foundation directly impacted and changed your life?

There have been in many ways. First of all, I’d say if I can’t live with a grateful heart and with a spirit of gratitude, I don’t know who can because I get to see people that are in the worst conditions in the world and a lot of them are near death and I see them come back to life. I get to see these miraculous things happening all the time. To live here in Atlanta, Georgia and have the life that I do, I hope I have a spirit of gratitude that is pervasive in my life. For me, what I talked about, these four relationships, they’re so important. I’m always reminded that we here in the US so quickly confuse the fact that we have material resources and that we are really rich. Materially, we are. If those four relationships are our understanding of what helps somebody to flourish, we look at ourselves very candidly. We are very impoverished in those four areas.

It’s no mystery. You can look around and see that everywhere. There are people with plenty of materialistic wealth that are absolutely miserable because they are lacking in those other areas of their life.

One thing that I continue to come back to is I’m trying to help my clients in this area, but how do I see myself? Do I see myself as someone with a God complex? I’m here to help. I don’t want that to be my view of myself. Is my community stronger? Many Americans are very isolated from the community. Our clients are isolated because of their HIV status and we are choosing lives that put up a lot of walls and keep people out of our lives. Am I putting my work at such a place where it’s my identity and not something that I get to do to find purpose and meaning? Is it the thing that defines me? In Kenya, you see so clearly that their work is a means to provide, to celebrate life, to worship God, do their work. We tend to get that out of order in our lives. There are a lot of things that I’m learning from our clients of how do I understand these four key relationships and apply them in my life in a way that’s healthy.

What are some of the challenges the foundation runs into and what do you guys need to move forward as you are doing?

The greatest challenge is expressed in the subtitle of my book, which is Beyond Blood: Hope and Humanity in the Forgotten Fight Against AIDS. Largely this fight has been forgotten. As we try to bring this back to the forefront of people’s minds and say, “There is a myriad of different crises that are facing our world. This is one that we cannot forget.” We’re helping people not only remember it but especially in faith communities, people tend to think about this issue like it’s a moral hazard to touch because it has implications that they’re uncomfortable whether they fear. We have to continue to help people have compassion for this group of people. They need to know about the epidemic and they also need to understand more about it. Most people here, they don’t necessarily know a community of people that have HIV here. It’s a concept that’s foreign to them. We have to do a lot of education, a lot of storytelling to help people understand why this is important for us here in the US to care about.

That’s the biggest challenge I think we face in finding new partners. Ultimately as to answer your second question, there’s not a shortage of need nor is there a shortage of strong churches that want to partner with us and a capable staff people that want to do the work in East Africa. Our barrier to scale ultimately is the resources that we can mobilize here to continue to do the work in East Africa. We’re always looking for individuals, foundations, churches, organizations and corporations that want to join us and partner by helping us open up more communities. We’re in Kenya, Tanzania and Uganda and we want to continue to expand in those three countries and then eventually, we want to move into Southern Africa as well.

If a person has access to the right medication and everything, what is the success rate of stabilizing this disease?

It is extremely high. That’s the thing that I don’t think people realize is that with proper treatment for someone with HIV, given the right conditions, good nutrition, good hygiene, emotional and mental health, they can live a normal life expectancy. That is accessible to most Africans if they can get access to the right medication and then they have a community like your phrase that can help guide them along this journey. It’s a very treatable disease and people can suppress the virus now to a point where it’s effectively undetectable in their system. It doesn’t mean it’s cured, but in terms of the likelihood that it will be transmitted, it will be untransmittable because the levels of the virus will be so low. That’s from a medical perspective, for us that’s a huge indicator when our clients leave our program, have they achieved an undetectable viral load? About 85% of our clients will achieve that designation before they leave our program. That’s an important thing too.

How is the foundation on medical supplies, doctors and all of that? Do you have enough funding coming in there to help all of your clients stabilize the virus?

The beauty of it is in these three East African countries, some of the national governments but also international aid is being given to HIV. The majority of that, foreign aid, especially from the US and the PEPFAR program, all of that money is going to help buy medication for people with HIV. We don’t have to provide direct medications to our clients. We pick up where the hospital leaves off and these hospitals are overrun and overcrowded and they don’t have enough medical personnel to be able to serve everybody. We can take these clients once they’ve accessed their medication through the hospital, and then we can provide all of what we call wraparound services to their medical care.

Getting in the community is one of the top things on the list to help fight the disease of AIDS in these communities. Entering the community, educating these people on what’s going on and helping them fight because the medication is there, the resources and tools to access it might be lost and the people might be lacking understanding of how it works and stuff like that.

That’s a huge part of it. We can get in there and then simultaneously address issues of stigma and ultimately poverty alleviation because that is intricately woven into this issue as well. People don’t even have enough money. We’re talking about the lowest rung of the economic ladder here. Even though economically or material poverty is not something that we focus on explicitly, economic empowerment is a huge part of our model. If you don’t have proper living conditions, if you don’t have a proper diet or if you don’t have the will to continue living because of all of these broken relationships, then the medication ultimately will not achieve its desired result. That is part of it. If we can help get people tested and treated and on medication and hopefully, we can simultaneously address these peripheral issues like stigma and material poverty, those things will help us bring an end to this epidemic.

Where do you see the foundation going the next 5 to 10 years?

In the next 5 to 10 years, our vision is that we would love to be able to empower 100,000 people living with HIV and AIDS by 2027. We’ve got a few more years in this mission that we’re on. We’ve served about 16,000 families so far, and that number is accelerating as we graduate upwards of 5,000 new families every single year. If we could do that, not only would it be transformational for those 100,000 families, but that will represent about 300 communities that we hope to be working in by that time. When we work in a community, it’s not just the individuals that benefit. The churches are revitalized. The economic productivity in that community is increased and ultimately, stigma is decreased. Three hundred communities that are the most highly effective communities with HIV in Africa, we would have the opportunity to shape the future of those communities. That would be my hope. That will include expansion into South Africa, Mozambique, Zimbabwe, some countries in Southern Africa that also have a huge burden of HIV.

If this message resonates with any of the audience, what can people do to help? What can people do to join the force? Do you guys take volunteers? How does it work with the foundation?

There are many things you can do. First of all, you can join us. We do invite volunteers to come over, serve with us for a short time. Not only does that encourage and inspire the people on the ground, but it’s a valuable education for people here in the US to understand more about what’s happening in East Africa. We invite you to do that. On our website, Care For AIDS, you can learn a lot of different ways you can partner with us financially. You can also help be an advocate for this issue as we help bring it back to people’s attention. World AIDS Day is December 1st and in the month of December, there’s a lot going on but this is a good time to continue to educate yourself on what’s happening around the world. December is a time where you could do something to use your voice, your resources to help bring some attention to this.

Justin, where can people find you online and social media if they want to be a part of the momentum to bring change?

Most of our handles are @CareforAIDS on Facebook, Instagram and Twitter. On our website, all the links to social are there. There’s some more information about our book on our website but also on my personal website, JustinTMiller.com. The Beyond Blood book is a compelling story. More than half of the book was written by my two Kenyan cofounders. Getting inside their minds and their experience growing up in rural Kenya and hearing the stories that shaped their path ultimately led them to start Care for AIDS. It is a story that can inspire us as we think about how we build relationships like Cornel and Duncan have that transcend tribes and cut across lines. There are some interesting messages there that people will be encouraged by.

Justin, at the end of every show, I like to ask my guests, what is one piece of advice that has really resonated with you over the years that you would like to give the audience? It could be absolutely anything.

I’ve heard you ask that question before and I had something else in mind. I would actually want to go back to something we talked about already on the show to reiterate it to people. You may agree with this framework or not, but there are some key relationships in your life that are important to your overall health and ultimately your flourishing. Everyone could benefit from doing an audit on their relationships with God themselves, others in creation and work and figure out, “Where am I in relation to these? How can I do better to overcome the poverty of those relationships and make a stronger connection in those four areas?”

Justin, thank you so much for coming on. I enjoyed this episode. It sounds like you’re doing amazing work and I wish you nothing but success and abundance in the fight for AIDS and the Care For AIDS. It sounds like your foundation is headed in the right direction and doing amazing things for so many people. Thank you for all that you’re doing. I appreciate it.

Thanks, Kevin. I appreciate you sharing the platform with me.

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