Alliance for Positive Change: Sharen Duke
The Five-O-One is joined by Sharen Duke, CEO of The Alliance for Positive Change. The organization helps New Yorkers with HIV and other chronic health conditions get medical care, support and housing assistance. Duke joins us to talk how the organization has evolved with the health care advances in the HIV/AIDS space.
To learn more about this work visit www.alliance.nyc.
Talia: Sharen tell us about the Alliance almost founded and what do you do?
Sharen: We were founded in 1991, in the height of the AIDS crisis, and we created a one stop service model that provides access to quality health care, housing, harm reduction, substance use treatment, mental health support and “Path to Jobs”, which is our peer training and job placement program that cultivates leadership and economic mobility.
Talia: Let's take a step back. Can we talk about the history of this disease? What was the AIDS epidemic like when you got into this work? And what is the disease like today?
Sharen: You know, in the early days of the epidemic, there were no treatments available. And we were suffering just tremendous losses; the LGBT community got hit very hard, communities of color were hit very hard… In the mid to late 90s/early 2000s, with the emergence of treatment advances, HIV really started to be transformed from a disease where people had a very short life expectancy after diagnosis, to one where connection to medical care and to treatment could really have a profound impact on survival and years ahead of a person. And so HIV while it still exists -- in 2015, Governor Cuomo (former Governor Cuomo) created a plan to end the AIDS epidemic in New York State by 2020, the federal government has created an end the HIV epidemic by 2030.
Talia: -- what does that even mean?
Sharen: What does it even mean? Well, it means that we can take the number of new infections and decrease them through both primary and secondary prevention efforts. And then for those people who are living with HIV, connect them to medical care and treatment so that they become virally suppressed. There's something that we say in New York “U = U”, undetectable is untransmissible. So, if you can create a community where a majority of people either do not have HIV, or for those who do have HIV, they are virally suppressed, because the treatments have worked, there will not be a risk for transmitting HIV within that community.
Talia: For those who are living with HIV, how does it affect their lives today in 2021?
Sharen: Well, when a person living with HIV achieves undetectable status, they generally have an improved health outcome. And what has happened is that HIV has become more controlled and treated as a chronic condition. And people living with HIV have other comorbidities that also need to be paid attention to.
Talia: And those comorbidities did they arise from HIV?
Sharen: Sometimes yes, and sometimes no. For some people, they not only have HIV, but they may have a history of substance use. They may have hepatitis C, diabetes or hypertension, high blood pressure….
Talia: So, you took your HIV model, applied it to chronic disease management and expanded your services?
Sharen: Yeah -- what has evolved over the past couple of decades, in part as a result of the advances in treatment is that HIV is no longer an exception but is now being considered and treated as a chronic condition. And what we did at Alliance for Positive Change is that we understood and took the lessons that we had learned from delivering HIV care, which was really based on this interdisciplinary approach to care that included the patient, the doctor, the social worker, many times the community advocate, and created a team approach to health care. And in fact, that interdisciplinary team approach to care is completely transferable and effective and appropriate for chronic disease management.
Talia: It’s interesting that you were able to transfer the model to other diseases. How did you know that the time was right, to make that shift for the organization?
Sharen: I think it was really a combination of both looking internally at what we were seeing in the people who we were serving. And for us, the common denominator was if you were not living with HIV, that there was a risk for HIV due to behaviors in your life. But we also looked externally, and there were changes in healthcare delivery and healthcare finance. There was also this emergence of a medical model of HIV, where treatment as prevention became one of the secondary prevention efforts so that connecting people to medical care and the role of medical care in the life and the treatment and the payment of services to the community for addressing HIV became really hinged on having a connection with a medical provider. And so, we understood the treatment advances, the shift in healthcare finance, and the success of the HIV interdisciplinary team approach model. So we decided that we wanted to expand our work in harm reduction. We looked to partner with a syringe exchange program; we wanted to get an outpatient drug treatment clinic license, both to expand the array of services from active addiction and syringe exchange all the way to abstinence and outpatient drug treatment and everything in between. We did in fact merge with the lower Eastside Harm Reduction Center -- they are one of the leading syringe exchange programs in the city of New York, and they are now a program of the Alliance for Positive Change.
Talia: Now that you guys have pivoted, what does the organization look like today?
Sharen: Now we have close to 6,000 registered program participants. We have six sites across Manhattan and the Bronx, and about half of the folks that we serve are living with HIV and the other half have multiple chronic conditions. Our HIV model has really enabled us to focus on providing services along what we call a harm reduction model, which is really about meeting people where they are and tailoring those services to address their needs. And to offer a continuum of support, without judgment and with the space for each person to pick and choose what is right for them currently. So if we have someone who is actively using substances, we're going to teach them and help them to reduce the harm in their own lives and to use safely and if in the future, they want to explore recovery options we’re here for them. And if they're not ready now, we are also here for them.
Talia: Sharen of all the work that you do, what are you most proud of?
Sharen: The program that I am the most inspired by is our peer education, training, and support program which we call ““Path to Jobs””. We have 130 peer educators who have gone through training and are in paid internships. The organization supports those paid internships to the tune of about $2 million per year. And we want to take this internal model and scale it. The state has put a lot of money into training, but there's not a lot of resource for paid internships. And for some people, you can't just go from having been on public entitlements or not having worked for many years to full time employment – the goal is for us to become a centralized job placement entity, where if a hospital or a health center, or community organization wants to hire a community health worker either part time or full time, that they would give their job posting to Alliance’s “Path to Jobs” – we would have a roster of trained peer educators who have gone through training from the New York State Health Department or from the Office of Alcoholism and Substance Abuse Services for recovery peer advocates, and we could then be the matching organization to match the peer with the skills, to the job. Eventually, I think that we could expand to offer GED classes, I want to have a computer lab where we can offer computer skills trainings, so that folks can do jobs in other areas as well. I also want to be able to offer continued education, like budget management and setting up bank accounts and balancing your checkbook. So those are some of the areas that I think “Path to Jobs” can fill a gap as a centralized job placement program that connects trainees to paid positions.
Talia: We only have time for one more question, so I want to shift gears and talk about your finances. How do you support this work that you do? Is it predominantly government funded? Or does it come from individuals and foundations?
Sharen: Well, as a public health nonprofit, most of our funding comes from the government. We have local, state, and federal grants. We also provide Medicaid reimburse services. And less than 10% of our funding comes from individual donations. It’s increasingly competitive, and it's certainly something that we strive to build and expand. But it's much easier said than done.
Talia: If our listeners want to learn more about and support alliances, what can they do?
Sharen: Well, we welcome you to come and visit us, I think, to see us in action is to become inspired in the work, you know, as a not for profit, it doesn't mean that we don't want to meet our expenses, fund our depreciation, be in a fiscally solvent position to be able to weather, times of challenge, crisis and change. All of us have really been affected by COVID. And we've all had to change the way we do our work, we've had to increase our capacity to leverage technology, we've had to really look at who we are, what we do, how we do it, how we communicate with the people that we serve, and how we can do it better. And, and there are ways in which not for profits can really leverage business models in order to be successful. So just one little example at Alliance is that we have a Medicaid reimbursed health care coordination program. And we don't provide direct medical services. But what I understood was that if I could partner with a medical provider, and co-locate my care coordination staff within the medical clinic, then I would be able to augment the services that happened within the four walls of the hospital or the health center -- we could be the feet on the ground to do the community outreach, to follow up on missed appointments, to bring people back to see their doctor. And we could also be a source for new enrollments into the medical care so that it ends up being a model where everybody wins -- the patient, the community organization, the hospital. And that's just one example of ways in which community providers can and should be partnering with medical providers, and with government agencies to create solutions that build upon the expertise of each other and in so doing expand limited resources.