By Paula French

On Feb. 25, 2015, the Indiana State Department of Health issued a press release announcing there had been 26 confirmed and four preliminary cases of HIV in Southeastern Indiana since mid-December (2014).

A preliminary positive means the initial test shows a positive result, but the confirmatory results have not been obtained. Typically, the confirmatory matches the preliminary test.

Why were 30 cases alarming? Because typically that area of the state sees about five cases in an entire year. The news was accompanied by the realization these 30 cases were connected to injection drug use, not sexually transmitted. The “Southern Indiana region” turned out to be Scott County.

Over the next few weeks and months, the numbers continued to rise. Just two days after the press conference there were 27 confirmed and 10 preliminary cases. By the end of March, the numbers had risen to 84 confirmed cases and 5 preliminary cases.

During this time, ISDH asked agencies across the state for their help. Scott County had no infrastructure to address something this big and this out of control.

I am proud to say the response was impressive. Health departments and programs in Southern Indiana sent teams of people, as did other areas of the state, including Indianapolis. It was “all hands on deck.”

The amount of expertise that chipped in was amazing. Testers, care coordinators, health educators, from around the state flocked to Scott County. ISDH opened a One-Stop Shop where area residents could go for all kinds of resources. But the one thing they could not get was new needles.

Under immense pressure from the medical and health-focused community and the growing number of HIV cases in Scott County, the Governor declared a public health emergency and through executive order allowed lawful needle exchange for Scott County only. The waiver was to last from April 4 to April 25.

Indiana has had a ban on needle exchange for many, many years. Even in the midst of an unprecedented HIV outbreak, our Governor insisted there would be no permanent needle exchange in Indiana and any legislation that stated otherwise would result in a swift veto.

Enter Rep. Ed Clere, Republican from New Albany and chair of the Public Health Committee in the Indiana General Assembly. Being from Southern Indiana, he had seen firsthand what injection drug use was doing to his constituents. With input from the wider Indiana community, Rep. Clere began his push for needle exchange in Indiana. A large number of people contributed to its success, but it would not have happened without Clere. Despite Gov. Pence’s pledge there would never be needle exchange in Indiana, on May 5, 2015, the Governor signed legislation to allow other counties to launch needle exchange programs.

The legislation is not exactly what many of us wanted. It is cumbersome and counties must jump through several hoops to apply, but it’s a good start. I can honestly say I never thought I’d see lawful needle exchange in Indiana in my lifetime. This is a huge step. I also want to mention Rep. Clere was one of only five Republicans who voted against the Religious Freedom Restoration Act (RFRA). And he paid a high price. Shortly before the beginning of the 2016 legislative session, Speaker Brian Bosma stripped Ed Clere of his committee chairmanship.

So where are we now? ISDH has funded several programs in Scott County to provide additional testing, Care Coordination, referrals to mental health and substance abuse treatment and other services. In November 2015, testers from around the state as well as a team from the Centers for Disease Control returned to Scott County to try to find the folks who needed to be re-tested and/or their needle sharing and sexual partners. ISDH reports there are currently 184 cases of HIV in Scott County. In addition, 23 counties have taken steps to qualify for lawful needle exchange. Currently, four counties have been approved: Scott, Fayette, Madison and Monroe. All have high rates of Hepatitis C, which is frequently transmitted through needle sharing. Hopefully, there will be no attempt made by the new legislature to weaken the current law.

Many people wonder how this happened, and can it happen again in other parts of our state. The answer to the first question is complex. There was a critical lack of HIV education, high unemployment, serious poverty and a culture of substance use where treatment was out of reach for most folks.

Many of the persons who tested positive for HIV had similar stories; they began taking prescription drugs for various reasons and when that became too expensive, they started injecting cheaper drugs. The testers and care coordinators visited homes where buckets of used needles were set out for people to use and share. Entire households and their friends were using the same needles over and over. It was not unusual for several members of the same household to test positive for HIV. We heard stories of people using the same needles until they became so dull, they broke off in their arms.

As the outbreak began to unfold, people in the county went into panic mode. Many people in the community said they thought, “you had to be gay to get HIV.” There were stories of people being afraid to go to the grocery store for fear they could get HIV by touching the same grocery cart as someone with HIV. They were afraid to send their kids to school, to use a public rest room; many of the same things we heard in the beginning of the epidemic some 30 years ago.

The answer to the second question is a resounding yes. Yes, this kind of outbreak could easily happen anywhere in the state, and probably will at some point. Several counties are dealing with rampant heroin use, so we could see a repeat of the Scott County situation. But hopefully, we can benefit from lessons learned.  HIV prevention and education is still important. Clearly, myths about HIV are still rampant.

At this juncture, HIV education should be a standard part of health curricula in schools, but it is very hit and miss in Indiana. There is a desperate need for better healthcare in all communities, but especially rural communities. Lack of funding has caused many community clinics to close and the lack of funding for basic HIV prevention is stunning.

I guess the general consensus is that the general public knows basic HIV 101 by now. Unfortunately, that isn’t the case. As I said earlier, there are still crazy myths and misunderstandings about how HIV is transmitted and who is at risk.

Then, of course, there is the whole issue of stigma. Stigma is a huge issue in places like Scott County. Fear is often the primary reason why folks choose not to get tested or seek care.

It is my hope we learn a hard lesson for this recent outbreak. If we do not, history will repeat itself across our state.

Paula French is a co-founder of Step-Up Inc., an organization with the stated mission “to promote health and well-being among underserved and hard to reach populations by providing services, education, training and advocacy,” especially in prevention and awareness of HIV/AIDS. See www.stepupin.org.