Successes and Challenges Facing HIV Service Providers in Essex and Hudson Counties
We talked with Kathy Ahearn-O'Brien, executive director of Hyacinth, a multisite, statewide HIV/AIDS services agency.
Kathy Ahearn-O'Brien: Hyacinth was founded in 1985 in New Brunswick by a group of lesbians and gay men who really wanted to offer social support to people who were going to die from AIDS. Its first mission statement was, "Quality of life in a world with AIDS," and it was about fighting stigma and being present for people who were ill. The actual founder was Margie Nichols, a psychotherapist who has no current involvement in Hyacinth. It's named Hyacinth because that's one of the first flowers to bloom in spring, so it symbolizes life.
I've been employed here since 1998 under several roles and became the head in 2009. This work is personal for me, because I was coming out as a lesbian in the 1980s while my community was dying. I was working in the corporate world and not feeling like I was making a difference, so I switched.
We were the first organization to get state HIV funding, in 1986, and now we have sites in six cities: New Brunswick, Newark, two sites in Jersey City, Paterson, Plainfield, and Trenton. First we were all about buddy groups, then when Ryan White [funding] came along, we got more into case management. We've always believed that peers are an important part of the work we do, so we always employ someone living with HIV to help a newly diagnosed person access care and treatment. We got our first grant for prevention outreach in 1997. In 1999, we started our first formal support group program, called The Wellness Community at Hyacinth, modeled after cancer support groups. I now have 50 groups running in six sites every month.
In 2000, we had a demonstration project on HIV and sexual health education called TPED; our education director traveled to other states training social service providers on HIV. We've always done policy work in the cities, state, and in D.C. We also got grants to go to state correctional facilities and county jails and do discharge planning with incarcerated folks living with HIV. In 2006 to 2007, we got legislation passed for syringe access in the state, and opened our first site in Jersey City in 2009. We now have three sites statewide.
We're also working on integrating behavioral health care into our primary care and teaching trauma-informed care to all HIV providers statewide. Our annual budget is just below $9 million, most of it federal and state funds. Less than $1 million is private funding.
Tim Murphy: What do your staff and clients look like?
KAO: We're about 100 staffers, about 70 full time and 30 part time. For the mental health group, we employ part-time peer counselors. About 90% of the staff is people of color, about half in leadership positions. We're evenly split between male and female. I'd guestimate -- because we don't ask -- about 30% of the staff is living with HIV and about 25% to 30% are LGBTQ, including three transgender women.
Through care and treatment, we touch about 1,500 people a year, and via prevention programs, we test about 5,000 people a year via four testing sites and two mobile units. We have MSM [men who have sex with men]- and LGBTQ-specific programs in a couple of our sites, some special programs for Latinas and African-American women. Overall, we estimate we touch about 15,000 people a year through outreach and testing.
TM: What's your gamut of services?
KAO: Our main mission is to help people living with HIV through both medical and nonmedical case management. We have community health workers, client advocates. We have a mental health program with both individual and group counseling. We have a little bit of HIV care in Newark once a week, and we have nurses in our syringe access locations to do wound care and vaccinations. Our providers stick to HIV care. [We don't do primary care for those without HIV.]
Our third piece is public policy. Axel Torres Marrero is our longtime senior director of policy and prevention. We also have Leadership Hyacinth, where we train people living with HIV and/or active substance users to find their voice and participate in the public policy arena, and to bring clients to the annual lobbying conference in D.C., AIDSWatch. It's a civics 101 training course for our client base.
We have PrEP counselors and an MSM prevention outreach program. We also do events for clients every month, including a Mother's Day tea, a community cookout in July, and harvest dinners every Thanksgiving.
TM: What do you make of HIV by the numbers in New Jersey right now?
KAO: We're at 1,200 new infections per year. The issue for us is making sure that we're finding people who are out of care, people in poverty in urban centers who don't typically access medical care until they get sick. Our focus is on doing the outreach to find them and keep them engaged in care. Our client population looks like the state, HIV-wise: over age 50, African American, and about 50-50 women and men, and not necessarily MSM. On the prevention side, we're working more with younger MSM.
TM: How would you describe the HIV landscape right now in New Jersey?
KAO: It's young MSM where we haven't been able to make a dent in the rates. Historically in New Jersey, we had the highest rates in injection-drug users [IDUs], whereas everywhere else it was white gay men. But now our new rates among IDUs is low. It's the young MSM and trans women of color where we are seeing the rates.
TM: Is PrEP helping with those groups?
KAO: I think so, but we have more work to do. We're still not great about getting the word about PrEP to those communities even though we've put some billboards up.
Now that marriage equality is no longer front-burner, there's more room for collaboration with other LGBTQ groups on HIV issues. We're having conversations with Garden State Equality about [reforming the state's] HIV criminalization law [to reflect the fact that those on HIV meds with undetectable virus are not capable of transmitting the virus]. I was cochair of the task force that the governor formed to end AIDS in the state by 2025, and we've submitted a report that includes getting that law changed.
TM: What would you like to brag about?
KAO: I'm always most proud of my staff. Across our programs, the feedback I get from the community is that my staff is passionate and willing to do what it takes to meet the client where they're at. In the past few years, we've established the HIV care clinic in Newark, and we now have about 100 clients, most of whom would not get care anywhere else because they're recently released from prison/jail and/or dealing with substance use their whole life, and they wouldn't feel comfortable in a larger clinic.
Also, policy-wise, we're one of the few voices in New Jersey keeping HIV at the center of the conversation. Axel does a great job training people living with HIV how to become advocates. When we go to D.C., we visit the entire New Jersey congressional delegation, and it's great to watch someone go into their first meeting [with a lawmaker] nervous and anxious, and by the end of Day Two they're taking control of the meeting.
I also think getting Governor Murphy's administration on board with the Ending the Epidemic campaign in the state is a win we got out of him his first year in office. He made the announcement on World AIDS Day last year.
TM: Where do you feel stuck or challenged?
KAO: Funding. How do you diversify your funding? More and more pharmaceuticals are shifting their funding from direct gifts to specific programs. A pharma just told us that they were no longer supporting agencies' fundraising events. Do we have to create a program now just to get money from them?
TM: Where would you put more money if you had it?
KAO: I'd give my front-line staff a better salary. We do a lot of social, racial, and economic justice work, and that includes how you pay your people. Programmatically, I'd put the money into housing. We don't get HOPWA funding. We do some housing case management and the state has a statewide housing collaboration that funds a particular organization called AIDS Resource Foundation for Children. But what works best is when we can provide our clients with stipends to pay their rent in their own homes, and that's part of our recommendations to the governor's task force.
TM: What are your goals in the coming years?
KAO: To continue implementing our trauma-informed care program and see what kind of a difference that makes for our clients. And to fight statewide for more syringe access sites. We'll be working on the recommendations the statewide HIV task force has submitted to the governor's office as soon as the office makes them public.
TM: Any stories you want to share?
KAO: I recently received a letter from a woman who said that she'd gone to our syringe access site in Newark every morning for a cup of coffee. She didn't want to stop using drugs, but she said she was treated with such kindness that she recognized that her life had value, so she went to New York City for drug treatment because she had to get away from her local triggers. She said that she was clean and sober and working -- she sent a picture of herself in her work uniform -- and that this had started simply going to our site to get coffee every morning.
I also have a few stories of undocumented people who've gotten HIV-tested at Hyacinth who are petrified that if they go anywhere else for testing, someone [from immigration enforcement] is going to come. We treat them with kindness and respect.
Positive POV: Ralph and Wendy Henderson
We talked with Newark husband and wife Ralph Henderson, 62, harm reduction specialist at a Hyacinth needle-exchange site in Paterson, diagnosed with HIV in 1988; and Wendy Henderson, 59, housing specialist at Hyacinth's Newark office, diagnosed with HIV in 1998.
Ralph Henderson: We met at a Salvation Army cookout in 2004.
Wendy Henderson: We dated for five years, and then we've been married for twelve.
Tim Murphy: Happy 12th anniversary! So Wendy, what is your journey?
WH: I grew up in Newark. I was devastated to find out I was positive. I was working for General Motors at the time, so I went to take a physical and they asked if I wanted to be tested for HIV, and I said, "Of course," not knowing it was going to come up positive. But I'd been married to someone who [I did not know] had AIDS. After my diagnosis, I went to California and worked with a women's HIV organization called WORLD, then I came back to Jersey. Fortunately, I have not had health complications from HIV, but I have high blood pressure and other stuff.
RH: I grew up in Newark, too. When I was younger, I was an injection-drug user and hanging out in a shooting gallery in Harlem, using syringes made with eye droppers and baby-bottle nipples. A van was coming around offering people $50 to be tested -- and I tested positive. I got out of the van and went back into the shooting gallery, thinking, "If this is true, then I'm gonna use heroin until I die," and I used that whole decade. Then I came back to Jersey, where there was a warrant for my arrest, so I went to state prison, where I tested positive again. This time I faced reality and was like, "OK, I'm positive," so I started meds inside prison. When I got out, I decided I wanted to stop using heroin, so I joined Narcotics Anonymous and have been clean ever since, 20 years now.
TM: What was the day you two met like?
WH: We were at the cookout and he asked a girlfriend of mine if he could have my phone number, and my girlfriend said, "Why don't you ask her?" So I gave it to him, but he didn't call for a while, but when he did, he asked, "Can I speak to Wanda?" And I said, "Sorry, there's no Wanda here," and when he called back, he apologized and said, "Sorry, I meant to say Wendy. I'm so nervous." He told me that God told him that I was supposed to be his wife. We got married in August 2007.
RH: My recollection is that, at that cookout, we played cards together and I won the best out of three, so I always tell people that I won her in a card game. My eyes were set on her the moment I met her, but I was in a relationship and I had to get out of it, then I called her back. Our first date was at the Olive Garden on 47th Street in Manhattan.
TM: What attracted you to Wendy?
RH: Her lips, her body, and the way she walked. But also how she carried herself, with self-respect but also respecting others. She was working at Prudential at the time and I was working for Hyacinth, and then she came to work for Hyacinth and nobody there knew we were dating.
WH: Everyone was amazed when we got engaged in 2004. Ever since my divorce, I'd wanted somebody I could hang out with, but living with HIV, I wasn't sure how to tell people. I didn't know Ralph was positive until we started talking more and more. I told him I was positive and said that I would never date someone negative because I'd tried and it didn't work out.
RH: I remember it was at the restaurant. I said, "I have to tell you that I'm HIV positive," and she said, "Well, me too."
WH: It was a relief to find someone loving, kind, and willing to do everything I wanted, who was also positive.
TM: Has HIV played a role in your relationship?
WH: I make sure he goes to the doctor -- and vice versa.
RH: I've never had complications from HIV. I wouldn't take AZT. I waited until my T cells started going down, around 1997, then I went on medications.
TM: How would you describe the HIV situation in New Jersey?
WH: The challenge is placing my brothers and sisters in affordable housing, because there isn't a lot. I had a client who just got put out because his monthly income is $800, whereas a one-bedroom rents for around $1,300. We don't get HOPWA funding. If they're on SSI, I can send them to welfare for a voucher to place them into a shelter or St. Bridget's, which is a two-year transitional housing site. There's some support if you've been incarcerated, but if you're coming out of prison under Megan's Law, registered as a sex offender, I can't place you.
I just had a client who's got HIV plus is on dialysis, whose mother, who was helping him with the rent, is now in the hospital, so he got locked out by his landlord. I had to put him in a shelter.
If clients have SSD, I have to try to reach out somewhere. I work very closely with the AIDS Resource Foundation for Children, I'm one of their ambassadors, but if clients are single, they have nowhere to go.
TM: What would the solution be?
WH: I put in my report every month that we need more affordable housing. It would be my dream for Hyacinth to open our own house. How can you take your meds if you're hopping from here to there? I had a client like that, where nobody in his family knows he's positive. God forbid someone opens up his bag.
RH: There's a lot of shooting heroin on the corner with the people I work with in Paterson, and there's a big need of housing. The addicts have nowhere to go, and fentanyl is killing them. Each week someone dies from it. I'm like a foot soldier in the community; everybody knows me and I go above and beyond for them. I ask everyone, "Are you ready for detox?" I can get people into detox the next day. Then long-term treatment, 90 days to six months treatment, which will get them into housing. I also can connect people to housing in New York City. They don't need to be a resident. I have a friend who takes them to New York for detox and a long-term program, and if he finds out they're HIV positive, he can get them housing right away.
WH: I send my undocumented clients to New York, because there's no housing options for people in Newark who are undocumented.
TM: What do you guys do for fun when you're not working?
RH: I wear a few hats. I also work for St. Bridget's transitional housing for people with HIV in their own apartments. I've been there 17 years as a resident aide, part time. For fun, I get up at 4:30 a.m. every morning, go to the gym for an hour, and after work on Monday and Tuesday, I play cards in the park with the seniors. And I make Narcotics Anonymous meetings during the week.
WH: I like to watch the Hallmark Channel, and to bead, make jewelry. We travel a lot. We're going to Hawaii soon for my birthday present.
RH: We've been to Aruba, Florida, Disney World, Atlanta. I just came back from the [USCA conference [http://2019usca.org/]] in D.C.
WH: I don't eat meat, but Ralph does. He makes good turkey meatballs.
RH: Every year we have our employee cookout, and the staff asks me if I'm bringing them. I make about three dozen.
TM: What do the two of you make of your lives at this point?
WH: Totally blessed.
RH: It's great. I make sure my wife doesn't want for anything. I can remember when we were dating and neither of us had cars. Now I have two cars, she has one, we have a three-bedroom apartment. Our life is great. All we want to do is give back. We had to go to detox several times. My 12-step sponsor said to me, "How many times did someone send you to detox?" Sometimes we need to be reminded. You have to have compassion for that person on the street who's struggling. You still have to respect them. I know what it's like to be a derelict waiting for people to throw their chicken and biscuits in the garbage. So who's the best person for this job? I am.
TM: Wendy, what's your favorite quality about Ralph?
WH: His compassion -- the way he treats me and other people. He keeps me focused, because when I say no, he always says, "Where's your compassion?" Once we were married, I temped for 10 years [in the corporate sector], and I wasn't kind. So last year, Hyacinth had an opening and Ralph said to me, "Why don't you come back?" And I applied and got the job, and Ralph said that I've been so different since I've come back. I like helping people. They need people who've been through what we have, and who understand.
TM: Ralph, what do you love most about Wendy?
RH: She stays late at work, so I know she has the passion again. She'll be here until 6, 6:30, serving people. The whole agency talks about what a good job she does. I'm proud of her. She's getting an award on Oct. 17 in Atlanta from SisterLove's 2020 Leading Women's Society, women living with HIV for more than 20 years.
WH: Yes, I will be going to represent Hyacinth. Hyacinth is my world [cries]. I came in here as a client not knowing what I was going to do, and some wonderful women helped me through my struggle. So I've stayed with them to give back. We had a support group in 1998, and I still meet with these ladies after all these years. One of them is my best friend. They shared my wedding with me. So this is not just my job. It's where my life started and where I became myself again.