HIV Undetectable, Hep C Cured! Hep C Peer Navigator Story of Louie Jones

Louie Jones is a peer navigator at Harlem United

He participated in the IDUHA Hep C Peer Navigation Program. His story is one of resilience, advocacy and attaining a goal he never imagined possible: being cured of Hep C.  Louis started using heroin when he was 19 years old, and in 1986 he tested positive for HIV. But his health was even more compromised when he was diagnosed with Hep B a year later. “It was very acute; you know jaundice, paleness, and syrupy urine. I know how the hepatitis B virus is, how real it is, how ugly it is, and I recovered thankfully.” At the turn of the century, Louis was also diagnosed with Hep C.

Politicized by the Young Lords movement, Louis found a need for activism to improve the lives of people like him. “I have been involved in activism, as a person with AIDS since 1990, focusing on challenging stigma. As a former user, formerly incarcerated, former homeless person, I realized the need for our voice and our faces.”

His advocacy work around drug-user health and access to Hep C care began when he joined a public health project in 2004. The project was able to bring together the NYC Department of Corrections, their medical providers, drug users and former inmates, and assemblymen. It was the first time medical providers were challenged in their practice of denying Hep C treatment to inmates while they were incarcerated. After this meeting, Louis became involved in creating groups for Hep C advocacy among drug users. This pushed him to look at the possibility of treatment for Hep C.

Several years ago, Louis tried the treatment regimen with interferon and ribavirin. But he felt alone going through treatment at Brooklyn Hospital.

“A doctor there told me everything I needed to know about the side effects, there were so many, but I stayed with it. I was still using heroin, as a matter of fact I used heroin to manage my treatment side effects… I did become undetectable; however I didn’t sustain virological response, and the Hep C virus came back.”

Louis continued his activism with VOCAL-NY, a user-based organization, and later began working at Harlem United FROSTD, in the Peer-Delivered Syringe Exchange Program. There, he realized it was worth trying to defeat the dragon again.

“I realized I was aging, being a father of two, I really wanted to give it a shot when I heard about these new medications, new treatments.”

“I personally got involved with a conversation with my doctor, for the first time I had been adherent to my HIV retroviral medication, and I had T-cells up to 1000, I said wow! I’m at a good place where I can look at new Hep C medications. I got some information about it and started going to the Hep C Task Force meetings, to get more informed, and it seemed that there was scientific evidence of a cure. And that really, to put a cure to a virus, I’ve never heard it said a cure to a virus. You know decades, just, I couldn’t process it really.”

Almost coincidentally, someone he knew was able to confirm everything he was reading about Harvoni and Sovaldi.

“A friend and colleague of mine called me. She was co-infected, and told me about the process she was going through with this medication: changing her regimen to one pill just for HIV, then completing the 12 weeks with minimum side effects. Here is a person matching the information on the paper. She showed me on paper that she was Hep C cured, CURED! She was my confirmation; she was my cure-gate.”

Louis was motivated to have a conversation with his doctor, and after winning an appeal with his health insurance to cover for the medications, he began treatment in November 2014. “I was cured of Hep C on April 28, 2015. I am HIV undetectable, and Hep C cured.”

If you wish to contact Louis Jones, you can reach him directly by phone 347-775-5308 or e-mail louisusersunited@gmail.com

This story is part of a Peer Profile project showcasing the experiences, skills, and knowledge of peer navigators in the IDUHA Hep C Peer Navigation Program

Written by Diana Diaz Muñoz

Diana graduated from the CUNY School of Public Health at Hunter College with a master in public health and is currently a program coordinator at the NYC Health Department in the Viral Hepatitis Program. In the past year, Diana worked as the program coordinator of the IDUHA Hep C Peer Navigation Program. Some of her interests include community health education, health equity, and communications.

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