Inside Indiana's HIV epidemic
As the largest HIV outbreak in state history was developing in southeast Indiana, an Eyewitness News investigation shows those impacted most by the health emergency were kept in the dark.
SCOTT COUNTY - It's a few minutes past noon on a Tuesday. Just a few blocks from the police station in Austin, Ind., about a dozen people are roaming the streets. They walk quickly, with their eyes looking downward. A woman wearing bunny slippers speeds up to catch up to a man with a gray beard. A block away, they meet up with three other people, and the group then disappears behind a garage.
In this neighborhood of homes and churches – many marked with stern “no trespassing” signs – residents are expressing growing frustration with what they call the “roamers.” Some parents will no longer allow their children to play outside in their front yard unattended.
“There are just too many people addicted to drugs. You can see it in their eyes and the way they walk,” said Tammy Breeding, who raises her three children in Austin. “I always have my nine millimeter [handgun] on my hip because of what I see going on. The addicts, the dealers, the prostitutes, they are out on the streets all day long. We're tired of it.”
One of those addicts, a 26-year-old Austin resident hooked on the powerful prescription painkiller Opana, agreed to speak with WTHR if her identity would not be revealed.
“It's a really big problem. Just about everybody you know does it,” she said, gesturing to the needle marks and bruises on her inner arm. “I do it five, six, seven, eight times a day. They control me. My world revolves around the drugs, to be honest. As soon as I do one [injection], I try to think of how to get my next fix.”
It's why southeast Indiana is now home to a public health emergency.
So far, the Indiana State Department of Health has confirmed more than 150 people have been diagnosed with HIV. The vast majority of cases are in Scott County – most linked to Austin – where the disease has spread rapidly among intravenous drug users who share dirty needles.
“It's a public health nurse's worst nightmare because it's an outbreak I can't stop,” Brittany Combs, the Scott County Health Department's only public health nurse, told 13 Investigates.
The largest HIV outbreak in Indiana history has prompted a massive response by the state.
ISDH has set up testing, counseling, treatment, a controversial needle exchange program and an array of other services to help identify and slow the spread of HIV.
“I'm confident we're going to stop this in its tracks, but this is an epidemic,” Gov. Mike Pence announced this spring.
It's an epidemic state health officials have now known about for months. But did the state act quickly enough to warn Scott County of the growing danger and what its communities were dealing with?
Through a series of interviews and public information requests, 13 Investigates assembled a detailed timeline of the epidemic. It reveals a breakdown in communication between officials at the state and local level which, some healthcare experts say, prevented a more timely warning to residents and healthcare workers who were unaware of a developing crisis in their own backyard.
Beginning of an outbreak
The first inkling that something was wrong came in mid-December, when a patient at Scott Memorial Hospital was diagnosed with HIV. It was the first HIV diagnosis that family physician Shane Avery had seen in about a decade.
“Before that, I had only one HIV diagnosis in 16 years of practicing medicine,” Dr. Avery told WTHR inside his Scottsburg office. “But then within one or two weeks, we had a pregnant patient who also was positive for both Hepatitis C and HIV. Two cases in two weeks, and you become concerned because that's unusual. For a single doctor, that's just a statistical anomaly, but it's still unusual.”
It is particularly unusual for a county that normally records an average of only three new cases of HIV annually.
Scott County quickly surpassed its norm. During the week of January 11, the state received eight more HIV cases, according to ISDH statistics obtained by WTHR. Six of those cases were reported within a 48-hour time period. Including two earlier cases from December, the total number of HIV cases in Scott County had jumped to at least 10 by mid-January. In just a month's time, the small rural community had registered three times the number of HIV cases that it normally records in an entire year.
Beth Myerson, an HIV policy expert at the IU School of Public Health and co-director of the Rural Center for AIDS/STD Prevention, says the sudden jump in HIV cases in mid-January should have triggered a public warning.
“I have a real issue with not sounding an alarm at that point. That's when you have to declare an outbreak and set up incident command,” Myerson said, as she learned of the double-digit statistics that had been recorded in January in Scott County. “When you have an abrupt increase of cases beyond the normally accepted scenario, you would want to act immediately.”
Behind the scenes, investigators were acting.
Disease intervention specialists were feverishly investigating each new case of HIV, interviewing those who had been diagnosed HIV-positive in an attempt to look for possible links and for other people they may have infected through close contact. Through painstaking detective work, the DIS investigators identified the cases as being linked to injection drug use and sharing used needles. By the end of January, state officials were aware of at least a 14 HIV cases from Scott County, and DIS investigators had made contact with other drug users who had shared their needles. State health officials in Indianapolis met January 27 to discuss what they referred to as a “cluster” of HIV cases in Scott County, and the state health department's HIV/STD Division began “planning next steps in the investigation and continue[d] to monitor surveillance.”
As the outbreak moved into February, there was still no public discussion about what was taking place.
By February 7, the state knew of 19 HIV cases in Scott County.
By Valentine's Day, the number had jumped to 28 – nearly ten times the county's annual average, recorded in less than 60 days.
HIV reports were pouring into ISDH and to Dr. Kevin Burke, the medical director for testing at the Southeast Indiana Regional HIV/STD Detection Center.
“It became obvious to all involved that this is a growing problem and needs a growing response,” Burke told 13 Investigates. “There was increasing communication between my staff and [ISDH] staff as the understanding of the severity of the crisis grew: more time, more conversations, more emails, more phone calls.”
But no public warning. Still.
And even as it became clear that Scott County was facing a healthcare emergency, no one had bothered to tell … Scott County.
“We had no idea”
“This has been completely out of left field. Completely,” Scott County's public health nurse told WTHR. Combs said the HIV epidemic came as a shock to her and other employees at the Scott Health Department. “It was February when we were notified by the state we definitely had a problem in our county.”
Patti Hall, the Scott County Health Department's longtime preparedness coordinator, agreed.
“We received a phone call on February 23rd from the state department of health indicating there was an alarming number of HIV cases in our county,” Hall said. “That is the first we heard about it.”
Even the administrator of the county health department had no knowledge of the emerging outbreak.
“I didn't hear about it until they called and told us we had a problem,” said Ron Murphy, who has overseen the Scott County Health Department for 42 years. “I've lived here all my life. These are our people. I think knowing about it would be very helpful.”
The phone call to Scott County came more than five weeks after ISDH learned the county had reached a record-shattering ten cases of HIV.
The phone call to Scott County came four weeks after ISDH began heightening its investigation and surveillance monitoring of the county's HIV cases due to the high number of cases confirmed.
The phone call to Scott County came two weeks after the state epidemiologist was notified of the county's alarming rise in HIV.
The phone call to Scott County came five days after an internal ISDH timeline determined the “number of cases clearly exceeds expected number and meets definition of an outbreak. It is clearly apparent that response needs to be escalated and coordinated.”
The phone call to Scott County came as the number of HIV-positive cases hit 30 and as ISDH began preparing a press release to notify the world of the county's HIV outbreak.
When ISDH sent its press release formally announcing Scott County's HIV outbreak on February 25, the county health department that sits in the epicenter of an emerging epidemic was finally in the know. Barely.
“Normally, the HIV positives and HIV testing is not reported to the local health departments. That's reported directly to the state department of health in Indianapolis,” Hall said. “Until they called us and told us there was an issue, we did not, would not have gotten that information until the public press releases that went out.”
“Just blows my mind”
“It's almost unbelievable they would not have communicated ahead of time. I just can't believe that. I don't want to believe that. I just find it so shocking that that wouldn't be the case,” said Myerson, who believes local health officials must be told about a health crisis – potential or actual – in their community as soon as possible.
An e-mailed timeline from ISDH confirms that the first contact between its HIV/STD Division and the Scott County Health Department took place on February 23.
“Clearly, there was a breakdown. How else could you explain not telling the local health department?,” said Myerson, who has served as an expert in HIV public policy and prevention for more than two decades. “It's just blows my mind that could happen. They should absolutely know because they have to be the interpreters of how that message is going to hit and what they need to be doing. They're likely the first people that a community member would call. ‘Gosh, I've got an outbreak of HIV. What does this mean? Tell me what this means.' So they would need to know.”
Workers at the Scott County Health Department say they aren't sure if more advance notice would have made a difference.
“We're a very small health department,” Hall said. “We have 5 ½ staff here and everyone has their own job to do. Our one public health nurse is swamped daily with the normal cases that come in – dog bites, STDs – that she has to deal with, and HIV is so out of the norm for anybody.”
At the same time, the county preparedness coordinator acknowledged that fast notification is crucial, and that the local health department has been an important part of the recent outreach effort to get resources and information to residents.
“Time is of the essence,” explained Hall. “When people are first diagnosed [HIV-positive], their viral load, which is when they're most infectious, is at the beginning. That's when they can infect the most people.”
Since the state formally announced the HIV outbreak in late February, the number of new HIV cases in Scott County has jumped from 30 to more than 150. How many residents were newly infected while the state waited to publicly announce the outbreak? The chairman of Indiana House Public Health Committee says we will likely never know.
“We do know time is critical and rapid response is essential. Days matter and we've seen that in this outbreak,” said Rep. Ed Clere (R - New Albany).
While ISDH has coordinated the state's HIV response in southeast Indiana, Clere believes local health departments can be instrumental in preventing epidemics before they arise.
“They are on the front lines, and there is a tremendous value in the front line positon the local health departments have,” he said. “Unfortunately, they are seen as just dealing with issues like septic permits and checking food vendors at the county fair. I don't think the state sees them as having capacity to stop the spread of HIV because they have limited resources and their funding has been drying up. The health department is one of the first victims of budget cuts. As a state, we need to change that.”
To underscore Clere's point, consider how the governor's office notified Scott County of a meeting between the governor and county leaders during the height of the epidemic.
At 12:00 am on March 25, the governor's office posted a press release announcing the governor would travel to Scott County later that day to meet with local officials to discuss the HIV outbreak in Scott County and to declare the situation a “public health disaster emergency.” Leaders at the Scott County Health Department say they were not told about the meeting until a few hours before it happened -- well after the public was told about the governor's visit.
“We knew at 10:30 the governor was going to be here at 1:00. There was no warning. We were just told to show up,” said Hall, the health department's preparedness coordinator.
The health department's administrator said he was not told about the meeting either. “Nobody told us. I actually think the only reason he came here was so he could justify his executive order,” said Murphy.
45 steps – How it happened
One of the greatest ironies of the Scott County HIV outbreak is the location of the county's health department.
The health department shares a parking lot with Dr. Avery and the county hospital, where the outbreak's earliest HIV cases were diagnosed back in December. In fact, the front door of the Scott County Health Department is just 45 steps from the front door of Avery's office. Why did it take two months for critical information to make its way across a parking lot? The answer can be found in a complicated web of budgets, state law, politics and bureaucracy.
To untangle the web, first it's important to understand the budget cuts that local health departments in Indiana have endured for the past 25 years. The significant loss in funding has drastically reduced the services offered to Hoosiers – especially those who live in rural communities.
Over the past decade in Scott County, Murphy says local, state and federal budget cuts triggered the elimination of healthcare services for special needs children, shut down the county's home health care agency and well child care facility, and closed the county's only clinic that provided free, anonymous HIV and STD testing.
Next, you need to know that location is crucial.
Many services that used to be widely available – such as free or low-cost testing and care coordination for HIV and STDs – are now operated by the state on a regional basis. The closest HIV testing and care coordination site to Scott County is 30 miles away in Jeffersonville. Some residents in the 16-county Southeast Indiana Region must travel as far as 90 miles to reach the free testing site in Clark County.
“Money went away and counties got out of the business of testing,” said Dr. Kevin Burke, medical director for the state's Regional HIV/STD Detection and Reporting Program in Jeffersonville. “It's been this way for at least eight or ten years.”
As a result, most residents in Scott County who needed HIV testing went to neighboring Clark County for their tests – if they went at all. (After declaring the outbreak an epidemic, ISDH set up a free HIV testing site in Scott County to better identify new cases.) Those blood samples were then sent to the state lab in Indianapolis for analysis.
Lastly, consider Indiana's outdated HIV reporting law.
Indiana lawmakers and the state health department established rules to help ensure timely reporting to the state and that local health departments would not be blindsided by an epidemic. But those rules do not account for the ongoing shift of services from local communities to regional testing and care coordination sites around the state.
State law requires doctors, clinics and hospitals to report all confirmed and suspected cases of HIV “to the local health officer in whose jurisdiction the patient normally resides… or in whose jurisdiction the patient was examined at the time the diagnosis was made or suspected” within 72 hours after informing the patient of the test results. (Immediate reporting is required for positive HIV tests involving pregnant women or exposed newborns). The law also stipulates “if the patient is the resident of a different jurisdiction, the local health jurisdiction receiving the report shall forward the report to the local health jurisdiction where the patient resides.” In addition, testing labs must report all positive HIV cases to the state health department on a weekly basis. According to state law, “laboratories may also report to the local health officer, but any such local report shall be in addition to reporting to the [state health] department.”
With the creation of regional HIV testing and care coordination sites throughout Indiana came the creation of new public healthcare jurisdictions -- and a gaping loophole in the requirement to notify local health departments. As the state's HIV epidemic was evolving in early 2015, most of the Scott County residents who tested HIV-positive were diagnosed through the regional HIV testing and diagnosis center in Clark County – not in Scott County. By rule, reporting each HIV case to Burke, who serves both as medical director for the regional HIV/STD detection and reporting program and as the Clark County health officer, was sufficient to satisfy state law.
Burke could have also shared the rapidly-accumulating number of HIV-positive test results with health officials Scott County, but his regional program chose not to.
“We just felt like protocol dictated since the state was jumping in with both feet that we would let them handle the communication,” he told 13 Investigates. “We let the state be the lead and make the decision on when and how to notify the Scott County Health Department.”
The doctor expressed surprise when WTHR informed him that Scott County health officials did not know about their county's HIV outbreak until late February – a full month after his regional testing center was processing a record number of HIV-positive cases from that area.
“It would be good to give them a heads up so they know sooner,” Burke said. “That may be something we can learn from this situation.”
Scott County's public health officer, Dr. Kevin Rogers, did not return calls from WTHR to confirm whether his office received any HIV reports from doctors, clinics, hospitals or laboratories. But if he did receive them, Rogers did not quickly share the information with other staff at the Scott County Health Department, who said they never received notification of an HIV problem until contact from the state health department in late February.
State health department responds
Why did the state health department wait weeks to warn residents and local health officials of the emerging health emergency in Scott County?
Dr. Jennifer Walthall, ISDH's deputy state health commissioner, said notification was made as quickly as possible.
“Based on the timeline we have, the contacts with all of the stakeholders -- not only in Scott County but in Clark County and the surrounding counties -- happened very early, and they've been part of the investigation from the beginning. They can't not be,” she said.
Reminded that employees at the Scott County Health Department said they were not informed of the HIV outbreak until weeks after ISDH had launched its investigations and just two days before the state distributed a public press release, Walthall changed her response.
“Well, I certainly wouldn't disagree,” the deputy state health commissioner told WTHR. “Perception is everything, so if there's anything to be learned it's that communications have to be in place before an outbreak occurs, before there's a problem.”
Since the outbreak was publicly announced, communication between the local and state health departments has been nearly constant as they coordinate a giant response to a record epidemic. Walthall says ISDH's plan to address the outbreak and to bring it under control has been successful, and can be used as a model for other states nationwide.
“Anytime we can do things faster, we want to, but there's a difference between doing things fast and doing it right. Everything has happened exactly as it was supposed to,” she said.
The state's response does include major successes:
--Early DIS investigations by state personnel in Clark County and Indianapolis quickly identified the cause of the epidemic and identified additional individuals who tested HIV-positive, helping to prevent the epidemic from spreading even further
--The Regional HIV/STD Testing and Detection Program in Jeffersonville notified ISDH within weeks of the first reported HIV cases to enlist additional resources and alert state health officials
--Establishing a one-stop shop that including services from ISDH, the Indiana Bureau of Motor Vehicles, Department of Workforce Development and other state agencies removed barriers for Scott County residents who needed access to IDs and vital records to get HIV-related services
--Signing up uninsured Scott County residents for HIP 2.0 provided them with crucial healthcare access to battle HIV
--Securing resources from the US Centers for Disease Control and Prevention brought federal experts to Scott County to help address the epidemic
--Legislative support for a needle exchange program is credited with helping reduce the spread of HIV through dirty needles
“I've just been so proud to watch this system in action,” Walthall added. “It works.”
What doesn't always work is making sure local health departments know about emerging problems early. Whether the culprit is simple oversight, a chronic lack of public healthcare funding and resources or a loophole in state statute, Clere would like to see it fixed – all of it.
“When local officials can be left out of the loop when something this important is happening in their own community, that's not a good a system, and there is no question in my mind that we need to look at this from a legislative perspective.” the state representative said. “And the whole timeline raises questions whether the state's response was rapid enough. As a state, we've been reactive. We haven't invested adequately in our public health infrastructure. I think we can learn a lot of lessons from what happened in Scott County.”