The doctor on a mission met the homeless heroin addict who lived under a tree last year at Jackson Health System’s special immunology clinic when both men were struggling to overcome the odds.
Jose De Lemos, infected with HIV and hepatitis C from a shared needle, had gone without treatment for almost a year. He’d dropped 80 pounds, suffered from night sweats and a rash on his leg and chest. Even walking hurt.
He was in no mood for conversation with a well-meaning doc.
But Hansel Tookes, a University of Miami doctor with a degree in public health and a calling to public service, isn’t the kind of doctor who is easily put off. He talked to De Lemos anyway. Sent him to dermatology, started him on meds for HIV and hepatitis C, worked to find him a bed in rehab, and talked — about his own uphill battle to create a syringe exchange program in South Florida, the kind of program that might have prevented De Lemos’ infection.
A public health advocate in Miami, where new HIV infection rates consistently top the state and national charts, Tookes had been struggling for years to get a bill passed in the Florida Legislature to create a program in Miami-Dade County to help end that terrible distinction.
In that time, he had gone from medical student to doctor. Testified before legislative committees over and over. And learned just how hard he would have to fight to get what he considered a very modest proposal to save lives and improve public health through a conservative, Republican-dominated Legislature.
For De Lemos, his doctor’s commitment to the cause — an unpopular one, at that — was a revelation: “I’m hard-headed. And he’s persistent. He’s like, ‘If you get clean, you can talk about this. You’ll be great … You can help me.’ I admire him because he went through a lot but he kept going.”
Tookes recalled a different moment with his patient: “He started crying because he said he didn’t know people cared.”
For the next eight months, as De Lemos kicked heroin, endured a skin condition that caused blisters across his entire torso and finally saw his sky-high viral count drop, Tookes started seeing hope, too. His proposal, which had been stalled for years, started gaining traction. The nationwide heroin epidemic had changed the dialogue about blood-borne diseases. De Lemos’ appointments with Tookes now usually included an update on the needle exchange bill in Tallahassee. Sometimes, when there was a big vote, Tookes played video recordings of the committee meetings on his phone for De Lemos to see.
“The reception in the ER isn’t great. I had to prop the door open,” Tookes said, with a laugh. “But we watched.”
In March, a full five years after Tookes published a study in a medical journal when he was still a student that documented the harsh reality of illicit needle use in Miami, Gov. Rick Scott signed the Miami-Dade Infectious Disease Elimination Act, making Miami-Dade’s program the first legal needle exchange in the American South.
The victory didn’t mean his fight was over. Legislators weren’t unanimous when they approved the bill, and the IDEA act reflects that: It creates a five-year test program, only in Miami-Dade and without any public financing. Tookes and UM, which will run the program, must raise all the money for the program privately, through grants and donations. Tookes — doctor, public health advocate and needle exchange crusader — must now also become a fundraiser.
He’s undaunted. His determination has carried him this far, and he is already envisioning the rest.
“When I flew back to Miami after the bill had passed, I looked at the city as we were landing at MIA and I thought, what we just did is going to change the health of tens of thousands of people,” Tookes said. “And that was an amazing feeling. And that’s an amazing truth. And that’s where we are.”
Advanced HIV cases
Tookes, a 35-year-old internist, took on the against-the-odds fight for a needle exchange because he felt he had to. Too many people were coming through the doors of Miami-Dade’s public health system like De Lemos, with advanced cases of HIV in an era when the virus that causes AIDS is generally treated as a disease you live with, not one that kills you. Injection drug overdoses were rising, too.
The doctor knew getting people into treatment earlier could make a huge difference in their lives and reduce infections of others. (“I’m trained to look for public health solutions,” he said.) A needle exchange was a step toward that goal. Florida had never allowed a needle exchange program before. But why couldn’t that change?
His grandmother, Gracie Wyche, had set the bar high in his family. She was a pioneering black nurse in Miami who started out in the then-segregated wards of Jackson Memorial and eventually became a head nurse, concentrating on a mysterious illness in the 1980s that later became known as AIDS. Tookes became even more interested in public service during his undergraduate work at Yale University and a stint as an investigator for Project Aware, an HIV testing/counseling clinical trial at UM. He got a public health degree at UM, and then his medical degree.
Now a third-year resident who does his research through UM’s division of infectious diseases at the Miller School of Medicine, Tookes said his grandmother’s work set him on this path. “She inspired me,” he said. “There’s just a long history of service on both sides of the family.”
The HIV numbers drove him, too. In 2014, the Miami-Fort Lauderdale region ranked No. 1 in the nation by the U.S. Centers for Disease Control and Prevention for the rate of new HIV infections in areas with more than 1 million people. That year, Miami-Dade County had 1,324 new HIV cases, the CDC said, while Broward had 836 cases. Statewide, in 2014, the Florida Department of Health said 110,000 people were diagnosed and living with HIV. People are still dying of the virus: In the United States, 6,955 people died from HIV and AIDS in 2013, according to the CDC.
Tookes saw the toll up close, in the examining room. A man in his 40s who had sex with men, no body fat and pneumocystis pneumonia, a disease often associated with AIDS — who didn’t know he’d probably had HIV for years. An impoverished woman from Liberty City with a debilitating bacterial infection from a severely compromised immune system, who had never before been tested for HIV. Or a young man diagnosed with HIV a few months ago who revealed to Tookes during a clinic visit that he uses intravenous methamphetamine.
“Everything with this issue — all of the advocacy that we did for this policy — was to fix an issue that we were seeing in everyday clinical practice … I think as physicians, we had a duty to intervene,” Tookes said. “We knew there was something we could do for these people to help them from getting so sick, and so we decided to fight for it.”
He faced deep suspicion about the idea going back to the just-say-no 1980s. Although needle exchange programs have become increasingly common even in GOP-controlled states — Indiana’s governor and now Republican vice presidential candidate Mike Pence changed his position last year after an outbreak of HIV and hepatitis C — Florida remained a holdout. Some lawmakers continued to believe that giving addicts clean needles amounted to government-endorsed drug use.
Starting in 2012, Tookes — backed by a coalition including the Florida Medical Association, the Florida Hospital Association and the Miami-Dade State Attorney’s Office — tried to make headway with lawmakers. When he hit the wall of opposition, he didn’t give up. He didn’t get disillusioned or cynical. He tried again. And again. In the legislative sessions of 2013, ’14, ’15.
Then 2016 came along. The heroin epidemic created a whole new conversation around the issue of injection-drug use.
State Sen. Oscar Braynon, a Miami Gardens Democrat, sponsored the syringe exchange bill — over and over — because of the high rates of HIV and hepatitis C in his district. He said he saw opposition flag after Florida shut down its “pill mills” starting in 2011, sending opioid users to the needle.
“The first thing people hear is that you’re trying to empower drug users to use drugs,” Braynon said. “But the narrative changed over time ... What started to happen is that drug use picked up. First it was people in the ’hood. But now it’s some of the wealthier people.”
And so the Legislature’s attitude changed. Injection drug use — and the blood-borne diseases that can go with it — were no longer just “a Miami problem,” Tookes said.
“In the context of a nationwide heroin epidemic and in the context of what I believe were many more constituents across the state going to see their senators and representatives and telling them that this was something that was ravaging their communities, we had a lot more of a sympathetic ear from the Legislature this year,” he said.
A needle exchange program won’t fix Miami-Dade’s problem with HIV and hepatitis C. But Tookes says it will help. And though a small percentage of HIV infections can be traced directly to needle use and the biggest risk factor is still sex, reducing the number of shared needles reduces the community’s risk overall. People who share needles don’t always tell their sexual partners that they are at risk.
A needle exchange also brings the hard-core, drug-injecting population into the public health system to be tested and treated. That reduces the risk to everyone else and cuts costs of treating their illnesses.
This is not just theory. In Washington, D.C., the number of new HIV infections dropped from an average of 19 a month to six a month after a needle exchange program was introduced in 2008, according to a study released last year by George Washington University’s public health school. The reduction in cases saved taxpayers an estimated $45.6 million, using CDC estimates that the average lifetime of care for AIDS patients costs about $380,000.
Miami-Dade stands to save money, too, if addicts stop reusing needles. A study co-authored last year by Tookes showed that the cost of treating patients who had bacterial infections as a result of dirty needles ran about $11.4 million a year at taxpayer-funded Jackson Memorial Hospital.
For Tookes, all of these public health arguments start with what he learned on the streets of Miami interviewing intravenous drug users when he was still a medical student at UM. The study he published in 2011 showed that drug users in Miami were 34 times more likely to dispose of their needles in public than drug users in San Francisco, which has had a needle exchange program since 1988.
Tookes still sees the bits and pieces of drug equipment in bushes and along streets, even in upscale places like Brickell Avenue, lined with highrise condos and financial companies from all over the world.
“I still have syringe radar,” he said. “I spot them everywhere.”
A few miles away from the Jackson clinics where Tookes works, in the shadow of the Metrorail station in Miami’s Overtown neighborhood, Carlos Franco is handing out his precious stash of clean needles to addicts once again.
Franco, 67, says he began his underground one-man operation more than two decades ago after he was horrified to see his girlfriend share needles with other drug users. He buys the sterile syringes, 100 to a box, at his own expense when he has the money, from the North American Syringe Exchange Network.
Franco is instantly recognizable to many in the neighborhood, where orange caps from syringes are sprinkled in vacant, overgrown lots and along sidewalks and under bushes.
“¡Oye!” yells one man, hailing Franco from a block away.
The operation is quick, Franco reaching into his backpack and handing over several packs of needles. The man, identified only as Flaco — “Skinny,” in Spanish — nods his thanks, looks both ways and disappears behind a metal gate next to a house across the street.
Around the corner, near the Interstate 95 overpass, Franco points out the improvised “cookers” that litter the shrubbery, bottoms of soda cans fashioned to heat up drugs. As he’s talking, a blond, thin guy in a T-shirt and jeans walks up poking a toe into the shrubbery.
Franco pulls the box from his backpack. “You need this?”
The man nods, his face now eager. Franco hands him a packet of syringes. Sean says he is 41, from New Jersey, a construction worker when he can find work. He is a heroin addict.
Sean has hepatitis C, something he shrugs off. “If you’re on the streets, it’s sort of required,” he says, with a short laugh that reveals a few missing teeth.
He walks away. A moment later, only half-hidden by a metal fence, he hunches over his arm.
“What really bothers me,” Franco says, “is when the numbers on the side of the syringe are worn off because it’s been used so much. That, and when they use a needle so dull it looks like a nail going into the skin — it can’t get through.”
Franco knows his needle distribution is both illegal and dangerous, but he’s not sure if he’ll give it up when the official needle exchange program is running. He supports the idea of a legal program but worries about the people who might be too afraid to try it.
“I’ll wait and see,” he says. “A lot of people on the streets know me. I’m not sure if they will go to an official program. The cops might harass the program.”
‘People are still dying’
No one knows exactly why Miami-Dade’s HIV infection rate remains higher than other metropolitan areas, even as medicines are better than ever, statewide rates have declined and mother-to-child transmissions — AIDS babies — are rare.
Public health officials rattle off a variety of contributing factors: Thirty-five years into this epidemic, younger people think of HIV as a treatable, chronic disease. Drugs like Truvada, which can prevent HIV infection if taken as a precaution, have added to that perception. HIV is largely an urban disease. Immigration brings people to Florida from places without much access to healthcare or health education. Miami is an international party town, and the highest risk for HIV is unprotected sex, especially for men having sex with men. Testing and medication in South Florida can be difficult to find.
Also, HIV has fallen out of the headlines for the most part, added AIDS Healthcare Foundation’s advocacy and legislative affairs manager Jason King.
“People are still dying. But you don’t get the press coverage ... So it’s not at the forefront of people’s minds.”
Stigma is part of the problem, too. If you can’t admit you have HIV, your sexual partners are probably at higher risk.
“It’s not a death sentence like before but the stigma still exists,” said King, who is HIV positive. “And then they have to be conscientious about disclosing it to their next partner and they fear rejection.”
That’s definitely true in Miami-Dade, said Dr. Cheryl Holder, a general internist who works at Jessie Trice Community Health Center and is an associate professor at Florida International University.
Holder says stigma, especially in the African-American community, is one of the toughest issues she combats when she sees patients with HIV.
“We’re seeing changes in communities, but it’s still labeled as wrong and there’s something wrong with you ... I still have patients who hide their medicine.”
Walking out of the health center at the end of a day not long ago, she saw one of her patients, a young man in a hoodie, waiting for a ride from a family member. “If it weren’t for his diagnosis, I would have waited with him for his family. But as I walked by, he didn’t look at me and I didn’t look at him. And that’s when I know it’s stigma. He couldn’t just pull me over and say, this is my doctor. We need to normalize healthcare so I don’t have to walk past my patient and not meet his mom.”
In some ways, Tookes’ work starts again now. Though Congress lifted a ban on federal funding for needle exchanges late last year, no federal money can be used on needles themselves. And Florida’s bill specifies that no public money can be used for the program.
That leaves Tookes, working with UM, raising it all — about $500,000 a year. And the pressure is on: Other counties in Florida are watching to see how well the program works.
“This pilot program is going to make a big dent in the infection rate in Miami. All eyes are on us. We have to make this a success.”
He has raised $100,000 from private donors locally — including Joy Fishman, the widow of the inventor of Narcan, the “save shot” for people who are overdosing — and another $100,000 from the MAC AIDS Fund.
Nancy Mahon, global executive director of the fund, said that syringe exchanges are key to fighting HIV/AIDS. “Needle exchange programs like this halt new infections, period. There is still work to do, but providing sterile syringes and supportive services to IV drug users is a solid step in order to begin saving lives.”
Miami-Dade’s health department is joining the effort.
“Definitely, we will be helping in any way we can,” administrator Lillian Rivera said. “We can’t buy the syringes, but we definitely will be providing wrap-around services. As the patients come in, we will be ensuring that they will be tested for HIV and hepatitis ... All of the services that we have will be available to the patients that come through the door.”
The IDEA Exchange, which will be run through UM, comes too late to prevent De Lemos’ infections. But it’ll help others as the 35-year war on the epidemic continues — as many as 2,000 in the first year, Tookes said. A project manager will start work in August, and other staff members are next. The AIDS Healthcare Foundation is donating the HIV and hepatitis C test kits with the agreement that those identified with one of the diseases will be linked with medical care. Tookes is hoping that other groups will follow.
And De Lemos — at 53, homeless no longer — will do his part, inspired by the fight of his doctor to pass the law. His viral load is so low it’s considered undetectable, and he is looking at life with new eyes. Service is part of his personal plan now. “I really want to be a part of this needle exchange program. If he can do that, I can do anything.”
Tookes says he will measure success with each HIV test, each syringe handed out.
“This has been a long journey ... It’s a very exciting time for Miami. We’re going to save a lot of lives. We’re going to save a lot of money. We’re going to give people a lot of clean needles. We’re going to provide HIV tests. We’re going to get people into treatment ... We’re going to change the world.”
Want to help?
To make a donation to Florida’s first needle exchange program in Miami-Dade County: https://advancement.miami.edu/netcommunity/sslpage.aspx?pid=1634