With his head propped up by pillows and photos of better days tacked on the wall beside him, Ronald “Ronny” Smith, with help from his mom, Denise, made a Youtube video from his hospital bed in 2015. It contained a message he wanted the world to hear.
“Get tested,” Ronny pleads in the video. “Don’t be scared to get tested.”
By the time Ronny was tested for HIV in September 2013, the disease had already progressed to AIDS, a diagnosis he received from Upstate University Hospital in Syracuse. Three years later, Ronny died as a patient in the same nursing home in which he once worked. He was 32.
“He didn’t want to die,” Denise Smith, Ronny’s mother, said in an interview last week. “He really regretted not getting tested sooner. So, he really doesn’t want someone else to be going through this. It’s 2020. You shouldn’t be dying of AIDS.”
Ronny’s diagnosis and ultimately his death followed the same timeline as the unveiling and official launch of New York State’s “End the Epidemic” initiative -- one of the most aggressive efforts in the country to curtail the spread of HIV, according to the Director of the New York State Department of Health’s AIDS Institute, Johanne Morne.
“We’re definitely heading in the right direction when it comes to the ambitious goals that were originally set,” Morne said.
Each year since 2015, the state has met or has come close to meeting the metrics it set for the initiative’s three goals. The first goal is to increase the number of people who are tested for HIV annually.
Testing is one of John Arcaro’s top priorities as the director of prevention at ACR Health -- an agency that offers testing and support services from offices in Syracuse, Utica, Watertown, Canton, and from its mobile unit, which brings testing to neighborhoods and smaller towns around the region.
“We’ve also started HIV home test kits,” Arcaro said. “We mail test kits for people who would never want to step into our offices or mobile unit.”
Discretion is key for many people who want or need to be tested, Arcaro said.
“You know, the biggest challenge is getting people to know their status because 20 percent of people infected with HIV don’t know their status,” Arcaro said.
Detecting HIV is critical to New York’s second goal -- quickly connecting positive patients with support and proper care. The right treatment can suppress the virus to such a degree that it is no longer detectable and no longer transmissible. According to state health department data, more than 60-percent of the estimated 2700 people living with HIV in Central New York no longer show signs of the virus because of medicine.
The third piece of the state’s plan to end the epidemic involves the promotion of a pill called PrEP. PrEP is an acronym that stands for pre-exposure prophylaxis. PrEP, we taken correctly, can protect people who are HIV negative from contracting the disease. In 2014, roughly 1500 New Yorkers were taking PrEP. By 2018, the number exceeded 50,000. By the end of this year, the state health department expects more than 65,000 New Yorkers to be on PrEP.
“PrEP truly has been one of the absolute pillars, not only to ‘End the Epidemic’ planning, but in general to people who are working to look at how they can best incorporate infection prevention methods in their lives,” Morne said.
The state won’t know if it met the goals it set to achieve by the end of 2020 until 2021. Data lags about a year behind, Morne said. Regardless, new infections have fallen four years in a row in Central New York. The region has the lowest rate of infection per 100,000 people in the state, outside of New York City, Morne said.
Whether the goal is met in 2020, Morne expects the state’s outreach to continue well into this decade.
Ronny Smith’s mother Denise knows firsthand how important that is. This week, she is raising money for ACR Health’s HIV prevention and education efforts as a participant in Sunday’s AIDS Walk/Run. Typically held at Beaver Lake Nature Center in Baldwinsville, the event will be held virtually this year, but Denise wouldn’t dare miss it. Ronny, she said, wouldn’t let her.
“I’m his warrior,” Denise said, “I will not stop talking about AIDS. I will not stop informing people and educating people.”