HIV needs to be discussed more in our communities. Fortunately, the tables are beginning to turn for increased conversation.
More than a million people are living with HIV in the U.S. It is something that impacts the lives of all Americans – mothers, fathers, friends, brothers, sisters, sons, daughters, partners, wives, husbands, and co-workers. HIV does not discriminate across race, gender, or age.
In order to elevate America’s conversation about the effects of HIV, the Center for Disease Control (CDC) has launched the Let’s Stop HIV Together campaign. The campaign’s mission is to not only raise more awareness of HIV in America, but also to know and understand the facts on HIV in America, and change the perceptions that lead to stigma and discrimination. The ultimate goal is to find ways to support people living with HIV through advocacy.
One such advocate is Michelle, a mother who, along with her daughter Raven, was diagnosed with HIV many years ago. Today, Michelle works closely with the CDC as an advocate for people living with HIV. She will soon be conducting training with the theme “Reaching Your Community: How to leverage your local network and connections to engage your community,” in order to help bridge the gap between people living with HIV, their community, and the health industry.
I had the opportunity to talk to Michelle to learn more about her advocacy work, and where she envisions the awareness of HIV education heading in the future.
Tell me about your work as an advocate. What inspired you to get involved, and what area of advocacy are you focused on?
My area of advocacy that I focus on is access to treatment and care, linking individuals into care from the point of diagnosis or someone who… I’m encountering a lot of individuals today who have fallen out of care, so I’m getting them back into care. A lot of new diagnosis also, so I’m linking these individuals into care and helping them with insurance that can cover both their care and treatment. So I really got into treatment advocacy from the point of diagnosis of my daughter who was born as a perinatally infected child, and I’ve gotta say from the days of there not being any medications for children.
I joined a treatment advocacy group called CPG of the National Institute of Health and we worked together with researchers under the AIDS Clinical Trials Group. My daughter was actually used as the child to identify a dosage for the first protease inhibitor that was developed for children and that was Viracept. She was five at the time and I continued with my treatment work because when I saw this thing with getting drugs developed, what do my community know about it? Myself and my daughter, we are both diagnosed, we are both successfully on regimens today that’s working exceedingly well for us and it really came because I joined a group of individuals that, we saw the help that was needed in the HIV community, not saying that that help is still not needed today, it is, but there’s so much that’s going on within the HIV community.
I continue to do treatment advocacy work, I’m a campaign coordinator for contracted CDC campaign that is pretty much managed by the American Institute of Research and I’m the campaign coordinator out here in New York and it’s the HTW campaign. And I gotta say, it’s given me an opportunity to work both with clinicians and consumers. Understanding, helping consumers to understand perspectives of the providers, helping providers to understand you have to form a team and a partnership with consumers, if they are not buying into it, this is where people fall out of care, it’s not one shot deals, people have to be retained in care and there are things that are causing these barriers to be there, where individuals walk away from the care system that they first initially had gotten engaged under. So, I do a lot within helping individuals navigate their healthcare needs once they’re diagnosed.
You mentioned earlier about forming those partnerships in the community, how do you motivate people to become active supporters?
I encourage individuals and I encourage consumers to form partnerships in a non-traditional way. There are industry initiatives, we are utilizing the products of the various HIV regimens that have been successful today and for me, knowing that we have over 28 formulated drugs, I want people to know what all their options are. Not just because or your doctor says, “Take this.” “No, show me in my lab work, where either I am eligible or I’m not eligible.” The more information I know, the more options I can be able to utilize and finding a regimen that works for you. I wish everyone who gets diagnosed today and the first drug that they get to pretty much utilize to obtain viral suppression, my goal is to make sure that they stay on that drug as long as possible.
We have used different types of classes of drugs, as the drugs became approved, we got on it and we are long-term survivors, and now we are seeing some medical things… Some other, what I would say, other diagnosis, so multiple diagnosis coming to some of us because of the long-term use of some of these medications that we have been on. The work continues and again for me, once you learned and you form these partnerships in a non-traditional way, the same information doctors are getting first hand, through my work of forming collaboration I have it now where consumers can get the same level of information and it even helps them even more where they can go and sit with their provider and have a discussion about what is the treatment option that they would like to utilize based on information they saw their lab work.
So, it’s layers and layers of different learning aspects but those of us again, who knows better, we’re teaching each other and I’m seeing the successes. We have an initiative here in New York, not an initiative but it’s a charge to New York where by 2020 we’re gonna end AIDS, and I totally believe we can do it, I totally believe that. So, the challenge is there and we have the mechanisms, we just… I think the more and more individuals realize the collaboration that is necessary and not view a consumer as this ownership. Because of clear coordination needs, 90% of us who are diagnosed with HIV, it’s not just HIV we’re diagnosed with, and we gotta be able to navigate the healthcare system based on the different clinical needs that we are presenting. And we gotta be able to help consumers to understand you’re no longer engaging sick care.
There’s a continuum of care and it’s built within this certain platform and these are the things that you gotta do to be able to navigate it. So, I’m spending a lot of time right now teaching consumers what is their role in care coordination. So these are the different things that I’m seeing right now that is the big need, and I have formed these collaborations with entities, health plans. Health plans gotta be able to understand the needs of those of us who are diagnosed HIV positive. There are clinical standards, that a provider is held accountable to in reference to screening, many of us are aging, 50% of the HIV affected population today, we’re 50 and above. So there’s quite a bit of work that we still gotta do and that’s why Michelle does what she does.
Sounds like you definitely have your work cut out for you. You talked about that partnership between consumers and the health industry, tell me some of the biggest challenges that you are facing right now in your advocacy work?
Some of the biggest challenges that I’m facing right now, really again is individuals not coming out and getting the information. It’s a handful of consumers who will come out here and a lot of the trust factors is still going on, no one is trying to promote no one product, I’m trying to educate consumers to know what our options are. If you’re someone diagnosed… You’ve been diagnosed for a long period of time or you just got diagnosed, there might be some other clinical diagnosis that you may have, you gotta be able to know what are really your treatment choices that you have and you gotta understand that from the point of, you’re your own and you have your diagnosis and yes, it’s good to learn and communicate with your peers but it’s not to make your life theirs or make their life yours. You know what I’m saying?
Individualize yourself. We have what we’re calling health homes now and when someone is engaged in medical care on the health homes, it should be individualized care based on your needs. Helping people to understand what does this diagnosis with HIV mean.
So, you’re diagnosed with HIV and then on top of that diagnosis, let’s say you’re someone that, you have diabetes, you’ve got high blood pressure, your cholesterol has been over the roof for all these years, but now because of maybe some food restrictions in reference to, again, the medications that you’re taking, the other drugs that you have to take, there may be some drug to drug interaction, you’ve gotta look at who’s now part of your team. I’m teaching consumers to work with your pharmacists, a pharmacist is part of our care team now, and if no one else knows and understands, we have pharmacies where they’re compounding drugs, they know what are the contents of the drug. So they could look at a whole regimen…because they have now identified, “These are the three different diagnosis this person has.” And you wanna be taking our medications at the same time, at the right time.
Seeing how we can reduce pill burden, a lot of people are still struggling with pills, some of them don’t even know they have options, in reference to again, minimizing the pill burden of, “Because we have to take all these meds.” So, really again, there are now mechanisms based on the collaborations that we can form between community service providers and clinical care, the need is there now to have this collaboration going on and teach everyone who are treating and who are receiving the treatment. Help us to be able to understand where we are right now in reference to our medical needs.
You also mentioned some of the biggest challenges that you’re facing. Now share with us some of the most rewarding aspects of what you’re doing.
Some of the most rewarding things that I am actually seeing is individuals beginning to improve the quality of their life because every one of their diagnoses that they have is under control. And it’s because they have gone through this learning process and they’re still learning but they have the tools right now, and they have access to the resources that can help them maintain the level that they have learned and they apply it to themselves.
There’s a large care movement right now and I was very instrumental here in New York just forming these different care initiatives. I have a career myself, and I share to consumers. We have youth involved and adults. And, we are part of what we call the Clinical Care Committee for the New York State AIDS Institute. We get to review chapters for the treatment guidelines and we get feedback and it gets incorporated.
So, I’m seeing, again, and this is where it really impacts the hope that I have. I don’t want someone today, there is that need still. You’re seeing it now where care and prevention really needs to come together and be able to prevent those. This disease, we do know that, is 100% preventable so if you can prevent it, we have mechanisms in place now to prevent HIV. But also too, for those of us who are diagnosed with it, the healthcare system really, now has to form partnerships with this community, this population of individuals because we’re navigating a large part of the healthcare system. So, the rewards, again, is once we put the mechanism in place to teach individuals to learn about these different things and they start applying it, clearly you can see where we’re living longer lives, and our lives can really be pretty much leveling the playing field as an undiagnosed individual.
You were diagnosed as well as your daughter. Can you share some words of encouragement or advice for women who have found their selves in this similar situation in regards to being diagnosed, or their child, or both being diagnosed?
My word of encouragement, I say it continually every day, never segregate yourself or feel as if you’re alone, it’s not just you. We have to do something about stigma. HIV diagnosis does not define who we are and many a times we let people define who we are as soon as they hear that we have an HIV diagnosis, no. You actually have an opportunity now and you have that chance to do something about this diagnosis. We are really not victims, a victim is a person who cannot do something or they have no control, they have no say in things that are bothering them or without their control. But we have that today, we have these mechanisms put in place. For some individuals, my heart bleeds. My heart really bleeds when I see what’s going on in the southern states, and also, too, what’s going on with the young, black, MSM population.
There really needs to be mechanisms put in place. So, when I have seen what I have gone through in reference to my daughter and myself to be here today, I share my experiences and I let people know, “These are some of the things.” I navigated our healthcare system being an immigrant. I’m not here… I’m not an American citizen, but my children are, I came here at the age of 16, I’m 49 now and I got diagnosed at the age of 24. So, it’s over a good 26 years that I’ve been navigating the healthcare system. And because of me not segregating myself and forming these partnerships and being part of decision making bodies, it really has impacted both my daughter and myself. My daughter just made me a grandma. I never thought I would have been alive today and her baby is now HIV negative. He’s three months old, a beautiful baby boy, and again, it’s because she had access to good prenatal care, she checked her medication. She has maintained an undetectable viral load.
I have to say, she has a healthy baby boy. So, now these are the things that I see, and I share it with other individuals. It impacts… It gives other people hope. I do. I get solicited through different avenues of the work that I do. I was just in West Palm Beach speaking at a care facility there and I shared my life story, but I put it into an educational component, it’s not about just talking about my life. I have a lot of common ground with a lot of individuals who were diagnosed with HIV and just sharing the things that I’ve been through, and what I’ve experienced, what I’ve conquered. I totally don’t see myself as a victim today. I don’t.
Wow, what an amazing story – we appreciate you for sharing it!. And congratulations on becoming a grandmother. That is very wonderful news indeed for you and your family.
Lastly Michelle, what are some simple but meaningful actions that people can do or take who want to support the movement of HIV education and advocacy?
I know one of the simplest things that someone can do, we have these different decision making bodies that are out there today, in reference to the care entity, the prevention entity, prevention with positives that… There are seats available for individuals who are diagnosed with HIV through your medical facility or where you’re getting case management services or so, they have, and they are aware of what those bodies are, those decision making bodies. And I totally see again, where our leadership needs to be part of the leadership that’s happening right now. Just people of color, Black Lives Matter, the healthcare industry, the health plans, we really need to infiltrate.
Living with HIV, again, is not just a diagnosis, and it does not define who we are. It’s what we do. These decision making bodies are available out there, and there are seats out there for those of us who have been diagnosed. And we really, really need to not feel intimidated. This is a disease that we know a lot about it and those of us who are living with it gotta be able to know that we have a say. And it’s part of the healthcare entity that’s out there, a piece of that pie, we are part of that.
Don’t just sit back and accept what is thrown at you. You feel as if you want something better, trust me, there is some mechanism out there where you can be part of that decision making body where it may seem better not just for you, but for the thousands of us who are out there. The work that I do is not about me, it’s really not about me.