In light of the federal government plan announced in February 2019 to end the HIV epidemic in the U.S., TheBody has created a new series called Eyes on the End. This series will include a snapshot of the HIV epidemic in each of the 48 counties and seven states targeted within the plan. These profiles aren't meant to be the definitive story of the epidemic in each locale, but rather -- through sharing some basic statistics and interviews with a few key stakeholders -- to provide some context for what's occurring there, and what it will take to end the epidemic in that area.
The Big Picture: HIV in Orleans Parish, Louisiana
In and around New Orleans, poverty, stigma and racial health disparities drive HIV rates that are among the nation's highest. But expanded Medicaid and PrEP (pre-exposure prophylaxis) access seem to have contributed to a recent drop in new cases.
Black folks in Louisiana are over six times more likely to be diagnosed with HIV than whites, according to a 2016 state health department report.
But new HIV cases in New Orleans have dropped from 523 in 2013 to 354 in 2017.
Health and HIV services provider CrescentCare has increased its number of black clients on PrEP to just under 25 percent, double the national rate; and Louisiana was the first southern state to sign on to the Undetectable Equals Untransmittable (U=U) campaign.
Successes and Challenges Facing HIV Service Providers in Orleans Parish
We spoke with Noel Twilbeck, Jr., chief executive officer of CrescentCare, an HIV-focused health and services provider serving the Greater New Orleans area.
Noel Twilbeck: CrescentCare grew out of NO/AIDS Task Force, which was founded in 1983 and which I've run since 1999. I'm not living with HIV but my husband, Glen, has been since I met him 30 years ago. We changed our name after we became a federally qualified health center [FQHC] in 2014, and we moved into a new building in December. We changed our name partly to evade stigma; people used to come in the back door and walk up five flights to avoid being seen coming into NO/AIDS.
Our annual budget is $45 million and we have just under 300 people on staff. We've had significant growth in recent years. We provide care for about 12,000 people, about 2,700 of whom are HIV positive. Our care targets are people living with HIV and their family members and partners, the LGBTQ community, people working in the service industry who may be under- or uninsured, and people in the geographic vicinity.
I have five staff chiefs: two gay men, one African-American straight man, one white woman and one straight white man. As for our roughly 60 program managers and department directors, about 35 percent are African-American -- less than the community itself, which is about half African-American. We have transgender and nonbinary staff. The staff have formed a transgender advisory council, which I couldn’t be more excited about, to advise leadership on whether our services are trans friendly. We started a gender clinic for the trans community, which is now getting between 300 and 400 individuals. We've got a couple of doctors tied to local hospitals who are now doing gender reassignment surgery. Medicaid covers it, but it's not always easy to get them to.
We were an HIV/AIDS service first, so we have lots of continuum of care services, starting with our prevention program, which is not just around HIV but also syphilis; gay men's wellness, particularly for young black gay and bi men; hepatitis C [hep C] screening; syringe access; and HIV counseling and testing. Last year, we gave 8,000 HIV tests. We have about 1,200 people total on PrEP in our PrEP clinic. The majority are white men, but we're increasing our number of black men on PrEP and even making some headway with women. We also do game and movie nights for young MSM [men who sleep with men] of color and offer various support groups.
Tim Murphy: What is the HIV story in NOLA [New Orleans] right now, by the numbers?
NT: We rank fourth in HIV cases among [federal funding-] Eligible Metropolitan Areas [EMAs]. It was just reported that new HIV cases in Louisiana dropped in 2018, for the first time in a decade, to just below 1,000. Of the more than 8,000 total cases in the state, about 63 percent are African-American, 28 percent white, 50 percent MSM, 7.2 percent from injection-drug use. At CrescentCare, the client population is predominantly gay men, about half African-American, and 30 percent women. We're going to be developing our OB/GYN and pediatric services more.
TM: How would you put all those stats in a headline that summarizes NOLA right now?
NT: Although our HIV case numbers are high, we're doing some interesting things that are moving us toward ending the epidemic.
TM: Tell us what.
NT: We're really focused on our Rapid Start program, where if someone tests positive, we'll see them for meds and care the very same day. Our goal is to link everyone to care within 72 hours after diagnosis. Our medical director, Dr. Nick Van Sickels, has really pushed a culture of "yes," where if someone who's just tested positive calls us at 4 p.m., we'll do everything possible to see them that day. We even have navigators who'll walk them to the clinic or get them there via Lyft, the car-ride app. And if someone who's been out of care for two years shows up, we'll also rapid-start them.
I think about 82 percent of our clients with HIV are virally suppressed, versus 66 percent overall in the NOLA area.
TM: What's going on with the other 18 percent?
NT: We think it's a lot of people not coming back to care regularly. We have a 26- to 30-percent no-show rate in all our clinics, not just the HIV one. Again, we have navigators and case managers constantly trying to get people back into care, as does the state, but sometimes people don't have a consistent phone number. We have incentive programs for people who've fallen out of care where they can get money cards for coming back into care or achieving viral suppression. [Editor's Note: The efficacy of such programs is heavily studied.]
TM: What about housing?
NT: We don't have our own housing stock, but we administer a tenant-based short-term rental and utilities assistance program with [federal] HOPWA [Housing Opportunities for Persons with AIDS] funds. We work hard to get people permanently housed. We also have a permanent supportive housing program that expands beyond HIV to those dealing with substance and mental health issues, the frail, the elderly, youth aging out of the foster system and people with physical disabilities. These individuals receive stipends to pay 70 percent of their rent, and our staff provides wraparound services.
TM: What else would you like to brag about?
NT: Our syringe access program, operated on Fridays and including a provider who does wound care, is hugely successful. Prior to moving office space, we saw 80 to 125 people every Friday, but since moving here, we've seen about 250 coming in for syringes and naloxone [Narcan, an overdose prevention medication]. We also partner with a residential treatment facility. Additionally, our behavioral health program, in which about 80 percent of the clients are living with HIV, is robust, and we're going to take our legal services for people with HIV statewide soon. [Editor's Note: Last year, Louisiana revised] its HIV criminalization law to allow those accused under the statute to provide evidence that their HIV is/was undetectable, hence untransmittable.]
We're also ramping up our hep C treatment program. Three years ago, after a three-year effort from health advocates, Louisiana expanded Medicaid access, which has helped. Until last month, the state would only approve hep C treatment for those with a fibrosis [liver damage] score of 3 or 4 [advanced], but the state just implemented a program where now we can connect as many people to treatment as we can get in the door. Last Monday alone, we saw 18 people who accessed treatment.
TM: Where do you feel stuck?
NT: Funding is always an issue. With our growth over the past four years, we've had a lot of changes. We almost shut down after Hurricane Katrina in 2005 because we were grant-funded, so we went through a planning session about how we would sustain care for people with HIV, which led to our expansion and becoming an FQHC. We expanded primary and supportive care, merged with an organization that did legal services, picked up a Women, Infants, Children and Youth (WICY) with HIV program, expanded our housing program, built a new building and had a 400-percent increase in clients.
It's been a roller coaster, and the new pain points are around our revenue cycle management and our ability to bill, which has expanded so drastically that we've brought in expertise to handle that. Our patient flow needs some work, and optimizing our electronic medical records has been a huge focus for our administrative staff.
There's also the funding disparity between those living with versus without HIV. If someone with HIV comes in, we have a lot of services we can offer because of Ryan White funding. We don't have that same level of support for people who are not living with HIV. I may not be able to address their need for emergency housing or even medication assistance.
Then there's the ongoing issue of stigma, which is inflamed by the fact that there are a lot of poor people in this parish, and which drives why we see people who don't continuously come into care. The city of New Orleans is an island. I can go two miles to the parish line and it'll be a different world, with lots of homophobia and stigma around HIV. We have a program for people with HIV in rural Houma/Thibodaux.
After the Trump administration started attacking the trans community, we did a fairly robust campaign for local trans and nonbinary people called "We See You" via bus ads, billboards and printed media. We wanted to make sure our local trans community knew they had a safe and caring place to come.
TM: What are your goals for the coming year?
NT: We aim to optimize our revenue cycle program and maximize billing from third-party payers, and to have a vastly improved customer service focus and an enhanced patient experience. We want to continue to grow the clinic focus on the LGBTQ and specifically the trans community. And we've still got a lot of work to do to increase services in OB/GYN and pediatrics, and for individuals working in the service industry.
TM: Tell us a few stories.
NT: The first week we moved into the new building, someone came for an appointment and told the provider they were in awe that they now had a facility where they could come for medical care that was not a clinic of last resort. I myself grew up in the age of the parish health clinics, which were run-down, dirty places where you had to wait hours. We all believed we could do better than that.
Another story I love is that someone came in to access the syringe program and eventually decided to access primary care with us as well, and over a period of time went to substance treatment in a residential facility, bringing their partner with them. It's pretty cool to know that a single service we provide can on-ramp people into our other services.
Positive POV: Dorian-Gray Alexander
Dorian-Gray Alexander, 58, sits on the local Ryan White planning committee and hosts the radio show "Proof Positive" on New Orleans station WHIV FM. He was diagnosed with HIV in 2006.
Dorian-Gray Alexander: I'm a native Louisianan but didn't move to NOLA until college in 1979. I'm on disability but spend my days volunteering. I'm also a patient trainer with Tulane Med School, training lay people to work with medical students to improve their interpersonal skills. And I'm the policy fellow for the CHANGE Coalition of HIV/AIDS nonprofits, most of them in NOLA. I've also done my "Proof Positive" radio show since 2015, and I believe I'm the only person with a stutter who does a radio show on HIV.
In early 2006, after Katrina, I was experiencing some illnesses, so I tested for HIV and found out that I had late-stage HIV. I don't like the term "AIDS" because of the stigma attached to it. I wasn't that freaked out, but I was concerned because I lost my health insurance -- this was before Obamacare required plans to cover preexisting conditions -- and went on Ryan White [ADAP, or the AIDS Drug Assistance Program]. I hit the ground running with my diagnosis. "I'm gonna deal with this," I told family and friends, who were very supportive. I got involved in the Ryan White Planning Council in 2008. I'd started just "showing up" at meetings of state health department officials, and if they asked me to leave, I just played the AIDS card!
TM: What have the past 13 years with HIV been like for you?
DGA: I've been thriving with HIV. If it weren't for the HIV-related volunteer work I do, HIV would be the last thing on my mind. It's important for me to be a voice and a force wherever I can.
I'm also a member since 2011 of a dance group called the 610 Stompers. We're men of mirth and girth, primarily straight men although I'm not, and we're pretty hot stuff here in the city. This'll be our third year to dance in the Macy's Thanksgiving Day Parade. Check us out.
TM: Cool! What's the story with HIV in NOLA right now?
DGA: NOLA is doing a much better job with HIV than it was before Katrina. Obamacare and Medicaid expansion have really changed the health care landscape and people's lives a great deal here. We're doing a really good job in trying to identify folks with HIV and get them on treatment and coordinate their care faster. But there are still a lot of gaps in treatment and services. We don't have robust mental health access.
TM: What's the biggest sticking point?
DGA: Stigma. It's still a challenge to get people to move beyond anything better than "it's not a death sentence anymore." If it's not a death sentence anymore, why even say that? I'm one of many busy, thriving folks with HIV. People don't know that there are more than 8,000 people in NOLA living with HIV. "Oh, is that still a thing?" they ask. Of course it is!
TM: What would you like to see happen in coming years?
DGA: I'd like to see more people linked to care faster, and that means we need more targeted testing for people. I don't like the term "high-risk groups." I think we need to normalize testing, meaning that anyone can go into any health care setting -- including the ER and urgent care -- and get an HIV test. Some places like that would prefer that you go elsewhere.
I also think we need to expand knowledge around U=U. Not just on buses and posters, but on T-shirts. Anyone connected to people living with HIV should be talking about the good news of U=U. It empowers people who live with HIV and informs those who don't. It's important that we reframe HIV and rid ourselves of this idea that we're dirty.