Nothing compares to the feeling of helping others | Hep C Story of Ed Manchess
The energy at BOOM! Health, a non-profit organization that provides citywide HIV/AIDS and harm reduction services, was both calming and electrifying, as Ed Manchess, the Director of Harm Reduction Services, stepped out of the stairway and smiled. The lobby was packed with Bronxites greeting each other warmly and sitting anxiously, waiting to be seen.
Ed Manchess is a former injection drug user (IDU), who experienced homelessness for three years in the mid-1980s in New York City. He was first diagnosed with Hepatitis non-A/non-B while in a rehabilitation facility, before Hepatitis C was even coined as a term. He has overcome many struggles to get to where he is today.
“I’ve lived the life of an addict,” he said. “I know the homelessness, finding my fix every day, and living on the streets of New York until I went into drug treatment. That’s when I started learning more about Hepatitis C, although they didn’t know a great deal about it at the time.”
Manchess has had the same doctor for over 20 years and was prescribed sofosbuvir, a pill-based medication to treat his Hepatitis C. Getting the medication approved by his insurance company was challenging in and of itself. After his doctor had given him the prescription, he waited for his insurance company to approve it. They denied it, however, instead asking him for a biopsy report indicating his stage of cirrhosis. It was at stage two of four.
“I felt that I was unable to advocate for myself,” he said. “I was in disbelief that my liver was cirrhotic and they weren’t approving necessary treatment. On the phone with a supervisor, I said ‘Are you playing Russian Roulette with my life?’ And she said, ‘Well, you can look at it that way.’ Oh, I just went ballistic.
“I literally had a fight for about three and a half months,” he said. “At times I would raise my voice, so everyone in this office knows my business, but it was only through my doctor that they approved it.”
However, the insurance hurdle was only half the battle. He is currently not able to take the medication because his toxin levels are too low, which brings up concerns about toxicity poisoning, illness or death caused by exposure to a substance or chemical.
“I haven’t started the process of getting on the donor list and I don’t know why I haven’t,” he said. “I just want to be able to take the medication so that at least my body can get rid of the Hepatitis C. I know they say that the liver is the only organ that can regenerate itself, so I’m just hoping.”
As a person who works in the field of health services, Manchess is angered by how difficult it was for him to navigate the medical system. He says he cannot imagine how much more challenging it would be for someone who is struggling like he once was.
“I’m really concerned about hepatitis C,” he said. “And another thing is that I’m in a much better boat than some other folks, because I have a place to live and am able to advocate for myself in a way that others aren’t.”
He feels strongly about helping others less fortunate and has made sacrifices to do so. He used to be a recording engineer at his parents’ recording studio company, working with big names in the advertisement and music production industry, and says he had a very generous salary. Once he began using heroin, his mother fired him. This was emotionally challenging for him, but eventually led him to seek treatment.
While in rehab, he met a man who would change his life forever, Ed Thompson. Thompson invited Manchess into his office one day and kept prompting him to share his complete and honest story about why he started using. Once Manchess opened up, he became attached to Thompson, who always looked out for him and eventually asked him to facilitate a group meeting. Manchess was a bit unsure about doing so, but Thompson reassured him that he would be a perfect fit for it.
This became a regular occurrence. Manchess developed solid skills for group facilitation, so much so that Thompson offered him a weekend position running group sessions. The salary was $4,000 a year, with housing and food included.
“I had been planning to leave rehab and go back to recording music,” he said. “But I had reluctance to it, because I knew it was a trigger: the fast lifestyle, young guy making lots of money, and hanging out with cool people and some stars.”
His parents wanted him to come back to the business. When he told them that he had accepted the counseling position, his father was shocked and laughed out loud when he heard what the salary was. But Manchess did not laugh. He explained to his father that this was important to his recovery and it was something that meant a lot to him. His father told him he could always change his mind and gave him his blessing, but also said that he thought he was making the wrong decision.
“I said, ‘you know, I don’t think so.’ After running a couple of groups, a couple of people came up to me after the groups and said that I did a really good job,” he said. “One guy actually came up to me and said that I had really helped him. There’s no better feeling than the one I felt at that time, not a single thing that me and my brother recorded has made me feel as proud.”
Manchess says that, although he is a private person and is surprised that he is speaking about his experiences, he hopes that his story will inspire others to advocate for themselves and their health.
If you would like to contact Ed Manchess, please email him at firstname.lastname@example.org.