Even Without Medicaid Expansion, Oklahoma HIV Service Providers Refuse to Let Anyone Fall Through the Cracks

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, seven states, and two cities 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 Oklahoma

You may need to drive for hours to get medical care in this rural state where religious conservatism, a lack of Medicaid expansion, and insufficient sex ed all complicate service providers’ goal of ending the HIV epidemic.

Need-to-Know Stats About HIV in Oklahoma:

• As of 2016, nearly 6,000 Oklahomans were living with HIV—82% of them male, 54% of them men who have sex with men, 55% white, 23% Black, and 10% Latinx. The state itself is 66% white, 10% percent Latinx, 8.3% Native American, and 7.4% Black.

• As of 2016, the state also had a greater percentage of AIDS diagnoses within three months of initial HIV diagnosis than the national average: 25.3% versus 21.3%.

• Also that year, most new HIV cases in the state came out of the three metropolitan areas: the capital, Oklahoma City (half of all cases in the state); Tulsa; and Lawton.

• Oklahoma is one of 14 states that have not expanded access to Medicaid under the Affordable Care Act. It has the second-highest rate (after Texas) of uninsured people in the U.S.

• As of 2017, an estimated 15% of Oklahomans living with HIV were unaware of their status. That same year, nearly 500 Oklahomans were prescribed pre-exposure prophylaxis (PrEP) to prevent getting HIV.

• As of the end of 2015, less than half of Oklahomans living with HIV were virally suppressed.

Successes and Challenges Facing HIV Service Providers in Oklahoma

We talked to Julie Lovegrove, executive director, and Kathy Ackerman, director of client services, at RAIN Oklahoma.

Julie Lovegrove: I’ve been E.D. here 14 years. Before that, I worked as a nurse in a nonprofit clinic in Norman, Oklahoma, and I also worked to develop the RX for OK drug-assistance program for the state, which was a version of Romneycare [which preceded national Obamacare in Massachusetts]. RX for OK decreased quite a bit after Obamacare came in.

Kathy Ackerman: I’ve been in a supervisory role 12 years but started in HIV services with the organization called CarePoint, which merged with RAIN in 1997.

Tim Murphy: What is the origin story of RAIN?

JL: It began in the late 1980s as an interfaith organization to support individuals with HIV and AIDS, because there were no support systems available at that time. The volunteers, called RAIN teams, would go into the homes of people living with AIDS and be a friend to them, do yard work, take them to the grocery store or to the movies, and be companions to folks who truly had none. Then, with the development of treatment, the biggest thing RAIN did was find ways to connect individuals, through intensive case management, to physicians and housing. For me, the biggest milestone is that HIV is no longer a death sentence. But let’s be honest: It’s not fun to get.

Our annual budget is $1.3 million, about 70% of which is Ryan White and HOPWA funding. The other 30% is private donations and foundation grants. We have 14 full-time staffers and one part-timer. We’re 10 women, 7 men, no trans or nonbinary folks. Eight of us are white, six are Black, and two are Hispanic. Thirteen of us are straight, four are openly LGBTQ and two are openly HIV-positive.

Client-wise, we probably serve 1,200 to 1,500 people living with HIV annually, but it’s closer to 4,500 to 5,000 if you add in family services like gift drives. We probably also have about 2,500 to 3,000 people a year we refer to other service agencies.

KA: The majority of our clients are white men who have sex with men (MSM), then African-American MSM, then a large group of Hispanic clients who have emerged the past two years. I can’t say for sure that they reflect a new influx of Hispanic HIV cases in the area. We hired a bilingual case manager about two and a half years ago, and I think word got out among Hispanics that there was someone here they could trust. We found a lot of new clients who said they were diagnosed in another country but never sought medical care.

We have a main office in Oklahoma City and another an hour southwest of here, in Lawton.

TM: Cool. What is your gamut of services?

KA: We have Ryan White services—case management, transportation, dental, and outreach. With HOPWA funding, we do a food pantry with a farmer’s market once a month, and we have a transitional facility that can house up to seven, possibly eight, individuals, men and women, which we lease from another organization. We also do long-term rental assistance.

We also have the state ADvantage waiver program, which assists patients who’ve been deemed disabled by SSA but who also need a nursing-home level of care in their own home.

JL: We also do our holiday Angel Tree every year to collect gifts for our clients, who are all low-income. We get companies to adopt a family, child, or individual in need. Right now [a few weeks before Christmas 2019], the hallway outside my office is packed full of gifts that are going to be distributed.

Fundraisers for us are not very profitable. If we break even, that’s good. The whole state has been in near-financial ruin. We’ve had state employees who’ve had salaries cut or who are now doing the job of two to three people. Three years ago, we had a state budget shortfall of $5 billion, which is big for a state with only 3 million people. Thankfully, the state funding for Ryan White has remained stable. But it’s the families of folks with HIV who’ve had their wages, medical benefits, or food stamps cut.

TM: Oklahoma has the second-highest rate of uninsured people in the U.S., yes?

JL: Before the ACA [Affordable Care Act] marketplace opened, the state uninsured rate was 20%. Then after ACA, it dropped to 10%. But then premiums started to increase, and providers started to run because of the lack of mandatory participation.

TM: How would it help things if Medicaid access were expanded?

KA: It would help tremendously, because patients with HIV wouldn’t be limited to the Ryan White-funded clinics, which are overloaded, short-staffed. You don’t get seen for two or three months, which is not good. With Medicaid, they could go to a private provider.

TM: Do you think Medicaid expansion will happen?

JL: We still have these unbelievable stereotypes from the Reagan era of welfare queens buying 20-pound T-bone steaks with their food stamps. I don’t know what’s going to have to happen for people to understand that this is your neighbor we’re talking about, your cousin, your grandchild, the teacher at school who is also a bus driver and still can’t make enough to feed her family. Somehow in this state it is more sinful to be poor and need help than it is to rob a bank.

TM: So you’re not hopeful about Medicaid expansion?

JL: I think it would be wonderful, but people don’t give a crap for the most part. If it doesn’t shake their own dining-room table, they don’t care. And I know that’s a horrible thing to say, but it’s real. And that’s how it was with AIDS here. Until you were the one who was standing at the grave, it was somebody else’s problem.

TM: How much of that attitude is endemic to Oklahoma versus a result of pro-rich, pro-corporate austerity policies that have been pushed with billions of dollars from the likes of the Koch Brothers?

JL: A lot is endemic. A huge percentage of our population gets its news from Facebook, from five-year-old memes that weren’t even true five years ago. it’s hard to get through. I’ve always been amazed at the number of individuals who vote against their own interest, but unfortunately that’s what we have here.

TM: Does RAIN do prevention or PrEP linkage?

KA: We don’t have a dedicated prevention staff. We link those interested in PrEP to Russell “Rusty” Rooms at Diversity Family Health, a nurse practitioner who’s big on doing PrEP and 72-hour rapid start. If a patient is uninsured, then Guiding Right, another HIV agency which does HIV testing and counseling, will assist in paying for labs.

TM: How is PrEP going in Oklahoma?

KA: It was slow going, but within the last six months, the community is starting to grasp it and say, “OK, let’s try this.” We have a ton of [HIV-positive] clients in long-term relationships where their [HIV-negative] partners are wanting to do PrEP. At the Infectious Disease Institute, the Ryan White–funded clinic here in Oklahoma City, PrEP is prescribed, so we urge HIV-positive folks to take their partners there.

TM: Have you heard evidence that immigrants, especially undocumented ones, are afraid that if they access public services, they won’t be able to get a green card, as Trump’s court-challenged “public charge” proposal dictates?

KA: Absolutely, a lot of our Hispanic population has talked with their case manager about that. I think that’s why they chose not to get into services until they hear about them from someone bilingual whom they can trust. We try to put them at ease and tell them we don’t turn their name in to anybody, that we just want to help make sure they’re healthy.

TM: How would you paint the overall HIV picture in Oklahoma?

KA: I think, within the last year or so, we’re finally having a decrease in new diagnoses, after an increase of many years. We’ve had an influx of newly diagnosed young people, born in the ’90s, here at RAIN, I’d say mainly white and Black, then Hispanic.

TM: Have you heard of any injection-drug user HIV outbreaks?

KA: Not really. A dramatic rise in syphilis has been the hot topic the last two years.

TM: What parts of your very rural state are the most under-resourced?

JL: Probably a city like Guymon, in the panhandle [northwest sliver of the state], or the far southeast corner. Those folks have to drive 4.5 hours to Oklahoma City for care. We assist with transportation and actually have a driver who will go that far, but it’s still hard for people to give up that much time.

TM: Where have you had the most success in recent years?

KA: We have continually linked to care and other services not only newly diagnosed patients, but those who are coming back into care or moving to Oklahoma. Our team here is five people, and there have been months where we’ve had 35 new people come in for services. We’ve never capped our caseload like other agencies have. We won’t let your access to care be pushed off for four to six months.

JL: We’ve survived this latest state financial crisis! I’m amazed at the amount of work staff here puts out in any given day or week—the trips to a person’s house to knock on their door and say, “You didn’t come see me, and I want to know why.” That kind of commitment—you can’t purchase that. I am the most blessed person to have the people I do in this office.

TM: Where have you felt the most frustrated or challenged?

KA: When I look at our Ryan White program, I need a warm body or two. I want staff to be able to have the time to go out. Some clients need to be babysat until [their HIV diagnosis] becomes a reality, and that takes a lot of intense time, a weekly process of talking to them. We know that positive people are the key to helping other people stay negative. So we need more staffing to provide more intensive case management.

TM: Are stigma and conservatism challenges?

JL: I think the goal is to keep people alive long enough to where they can worry about stigma. We had a person recently who was in the hospital for over 30 days and didn’t tell staff there he was HIV positive. He was in for a stab wound, but the complications suggested another infectious process was going on. Who was his dumb doctor who didn’t test him for HIV? He was afraid that if he told them himself, they would treat him differently.

TM: What would you use new, unrestricted funding for?

JL: People! Staff! Our Lawton office needs a front-desk person at least part-time.

KA: Within client services, it would be great to have money to pay for clients’ health care outside of infectious disease. Even those who are insured don’t have the money for the premiums, copays, deductibles. Our ADAP [AIDS Drug Assistance Program] has funds to pay those things, but only related to infectious disease. If a patient has cancer, our ADAP won’t cover that.

TM: Have you been involved in efforts to expand Medicaid in the state?

JL: For a long time. I have some really good contacts at the capitol, but there’s a fine line between doing my job and the agency not having to pay a hefty price [for excessive activism] in a red state. We’ve gotten some legislators who are open to expanding Medicaid, and I’m proud to say that I was directly involved in getting busloads of old folks from nursing homes to invade the capitol two years ago. That was around maintaining services, because they’d proposed cuts to Medicaid ADvantage and in-home services. We’ve had an unbelievable number of rural hospitals close in the last three years. If you get sick in rural Oklahoma, you better pray someone can get you to a hospital.

TM: How is sex ed in Oklahoma?

JL: It’s very lacking. Thankfully, we have a project called TEENM’Power that is making an unbelievable difference. It’s a joint project from many organizations in the state that has targeted some of the schools in the Oklahoma City metropolitan area and is branching out from there.

The initial goal was to focus on teen pregnancy. The project leaders went to talk to a school principal, who said, “Oh, we don’t need that in our school.” Then the project leaders asked, “How many females in your school do you think are pregnant?” They had to scrape the principal off the floor after the principal heard the stats. The project’s goals was to decrease teen pregnancy in the first year by 5% to 6%, but I think they’ve gotten to 30%. And it also covers LGBTQ issues and HIV, which we really need, because we have had so many LGBTQ students commit suicide.

TM: How do you think Oklahoma is doing getting to the 90-90-90 goals of ending the HIV epidemic?

KA: I think our diagnosis, retention in care, and viral suppression rates are in the 80% range statewide.

TM: What will it take to stop new HIV infections in Oklahoma?

JL: I think we’re going to have to get a crowbar and pry open some minds before the epidemic here is taken care of. I think Medicaid expansion here is critical, not just for addressing HIV, but for every other chronic illness.

TM: Can you share any stories that illustrate the work you do?

KA: So that young man who was in the hospital for 30 days and didn’t tell anyone he had HIV? We got a phone call to go to the hospital and meet with him, but we had to not say that we were from RAIN or we’d out him [as having HIV]. He’s also an insulin-dependent diabetic as well. So once he left the hospital, we housed him at a hotel for a few nights, then into our transitional housing. So now he’s back in medical care, on his HIV meds and insulin again, finally gaining weight, able to walk again, and asking for bus passes.

We have another gentleman who was in prison for seven or eight years prior to a period of heavy drug use. He was released from prison to a homeless shelter with maybe 14 days’ worth of meds. So he makes contact with us, comes in for case management, and immediately we referred him into another housing program. He got insurance within two years, via our ACA marketplace navigator in the office. Now he’s volunteering with another community agency.

And we have an undocumented lady from El Salvador with two children who ended up in the hospital for more than a month. So our Hispanic case manager goes in, gets her set up with our housing program, gathered food, clothes, school supplies for her kids. And now she’s back to work, and she and her kids are in a secure home environment. If you went down our row of case managers, you would hear more stories like these.

TM: What do you two do for self-care and joy?

JL: I have a huge dish of old-fashioned grandma ribbon candy and candy orange slices on my desk. And I buy shoes. I have the coolest shoes. Kathy’s a shoe person, too. I also have 10 great grandchildren, ages 2 to 13, who I love to buy stuff for.

KA: For me, honestly, it’s sitting at home and staring at my pond in the backyard.

JL: What about your exercise? She’s a health freak.

KA: It’s true. My mental health therapy four to five times a week at 5 a.m. is working out at a gym called Orangetheory.

Positive POV: Anthony

We talked with Anthony (last name withheld), 55, who lives in a small town outside of Oklahoma City. He is a carpenter and was diagnosed with HIV in 1999.

Anthony: I grew up in Oklahoma, Native American and Pentecostal. I’ve spoken in tongues in churches, and I believe in God, even though I don’t go to a church now. I always knew I was gay, but I was married to two women, and I have kids. I accepted that I was gay at 28, and then I disappeared on my wife and family for five years and moved into the gay community in Oklahoma City and got engulfed in it. It wasn’t a good experience; the bars were full of drugs. I was young and naive and green and had a pocketful of money. You know how gay people will take advantage of you.

TM: How did you find out you were HIV positive?

Anthony: I had a boyfriend who I didn’t know was HIV positive until after we’d had sex without a condom. It was actually his ex who told me. So I went and got tested and found out I was positive. I didn’t have an extreme reaction. I figured I’d die, but I’d go to heaven. I’m an upbeat person. I don’t let anything get me down. Having HIV has never made me miss a step. I never cried, whined, or got depressed about it. I didn’t even start taking HIV meds until four years after I was diagnosed, when I got really sick, walking pneumonia, and my T-cell count was at AIDS level. Now that finally scared the hell out of me. So I got on the meds, and it worked. I’ve never had side effects. I also took meds to get rid of my hepatitis C.

TM: When did you first go to RAIN?

Anthony: In 2007. Kathy [Ackerman]’s the only case manager there I’ve ever had. I don’t do good with change. The folks at RAIN are the greatest in the world. They give me gas vouchers for anywhere I need to go. They’ll give you Ensure protein drinks to make sure you’re well-fed, they’ll house you if you need it. They don’t do as much for me as they do for a lot of people, because I don’t ask for a lot. I do ask for a gift through the holiday Angel Tree program. This year I got a pair of shoes, some paper towels, and toilet paper. Hey, it’s better than nothing!

TM: So you aren’t public about your HIV, right?

Anthony: I’m a country guy. I live in the sticks. If I told everyone I have HIV, it would be like telling them I was going to kill them. This is Oklahoma. It ain’t New York. People don’t just go spreading that kind of news here. If I didn’t live here, I wouldn’t care [if people knew my status]. But I don’t take flack. I’m as much a country boy as these boys around here who call themselves straight. I’ll whip their asses.

TM: Do you have any goals for the coming years?

Anthony: Yeah, I just bought a mobile home and gutted it, and I’m remodeling the inside. I’m living in a mobile home now, but this one’ll be nicer when I’m finished with it. I’m gonna do it all man-style, stained pallet wood. My other goal is to try to have a better relationship with my daughter so I can see my grandsons.

TM: What do you do for self-care and joy, Anthony?

Anthony: I go out with my friends. I have good relationships with all my neighbors. They all know I’m gay. But nobody can pick up that I’m gay, because I’m country. I’ve got a filthy mouth and tell raunchy jokes. I’m also a TV fanatic. I watch The Young and the Restless. That was my momma’s favorite show. We used to watch it together. I also have two pitbulls, Midnight and Blublu. They do everything with me. I like them better than everyone but my grandson. He’s my number-one, and the dogs are right up there with him.