Weiner’s customer, Ronni Marks from the Hepatitis C Mentor Support Group Inc. (HCMSG), understands the impact that mentorship, compassion, and hospitality can provide to those affected by hepatitis C (HCV). In 1996, Ronni was diagnosed with HCV. At the time, there was very little information or support for people with HCV and/or living with both HIV and HCV. Ronni wanted to change this, so she founded HCMSG in 2010 to ensure that anyone affected by Hepatitis C and living with both HCV and HIV have access to information, supportive services and tools that will help them manage and overcome Hepatitis C with strength, dignity and fellowship.
HCMSG is a non profit organization that provides education and supportive services. The Circle, a group model for support provided by HCMSG, seeks to replace change-driven system interventions and give participants the tools they need to be in charge of their own health. HCMSG goes into communities across the country and works with their department of health who introduces them to the ground organizations, who then use the Circle model. Unfortunately, the individuals they serve are often looked down upon by society and the healthcare system because many are often houseless and people with substance use disorder. This is why they began providing them with a “Purple Bag”, which has become a symbol for the organization, and a lifeline to those who receive it. The purple bags consist of basic necessities, like toothbrushes, toothpaste, razors and more. The purple bags are a reminder to these people that HCMSG cares and that they are respected.
We sat down with Ronni Marks, Founder and Executive Director at HCMSG, so she could tell us more about their work, the purple bags, and how they’ve partnered with Weiner’s to serve communities across the country.
What is your mission?
Our mission is to empower individuals and communities to manage their own health. We provide education and supportive services for anyone affected by HCV and those living with both HCV and HIV. We are dedicated to eliminating HCV and addressing healthcare inequities through partnerships with syringe service programs, clinics, hospitals and any community based organizations in need of our services.
What has been your biggest challenge?
One of the biggest challenges is getting funding for programs that provide support and education for HCV. There has always been a big focus on HIV awareness, so it has been a lot easier for these programs to secure government funding. Unfortunately, there is a stigma around those who have HCV because they are often houseless and people with substance use disorder. This includes funding from all levels of government. Since COVID-19, and a greater focus on the opioid crisis, there has been a bit more attention to the issue, but still not enough.
Why did you become a Weiner’s client?
A big part of what we do is the distribution of care bags, now known as the “Purple Bags” to those we serve. Items include soap, condoms, shampoo, mouth wash, a razor, toothbrush, toothpaste, and now they include a face mask. Originally, we tried ordering white frosted bags, but they were not available. So we decided to go with purple bags. These bags are now a symbol of our organization. It also includes our logo, which is a zen-circle. Information on the back of the bag includes “all people 18+ should get screened for HCV”, and it lists the risk factors related to HCV.
With the introduction of the purple bag, we needed a supplier who could get us all the products we needed in bulk. They bend over backwards to help me get whatever I need. The purple bags and everything inside comes from Weiner’s. They also put the bags together, warehouse them for us and ship them to our associated sites. Whenever I have a site that I am shipping the bags to, I just call or email Kevin and he takes care of it. He is always on it, his team is always on it, it’s amazing. I can’t say enough good about him, Kevin really cares.
How do you dispense the products out to the community?
The sites that we send the purple bags to are other organizations using our Circle model. There are locations in North Carolina, Tennessee, West Virginia, Hawaii, and multiple spots in New York. We either ship the purple bags directly to these organizations, go to the organizations ourselves, or we hand them out to individuals on the streets. We also send these organizations forms to fill out that help us to collect data on how many people got tested, received treatment, and followed up, etc. Over the years, we have handed out thousands of purple bags to people of all ages throughout the country.
How are these products making a difference to the recipients?
Since COVID-19 hit, the purple bags have become a lifeline to those in need as they contain basic necessities. During this time, many syringe services were closed due to COVID-19, and there were people lined up all over to receive them. Normally, we have to track the bags we give out to collect data, but during this time, these rules did not apply. The purple bags contain the products that they desperately need in some cases. They are small and won’t last long, but for that time, they give them what they need. By giving them what they need, we are showing them that we care. It has helped open up a lot of conversations about HCV.
Last week, I went out with a mobile unit in the Bronx and we went around many neighborhoods talking to individuals who use drugs on the streets. The minute you show people that you care, that you are actually listening, you start to build trust. These people are very savvy, and they have to be to protect themselves. They know who is genuine and who is not. They accept me because they can see that I am genuine, it’s as simple as that. Showing a little kindness and compassion opens up the doors for many conversations with people, and they keep coming back and they follow up with us. We have many familiar faces.
What is the most rewarding part of what you do?
The most rewarding part is working directly with the people affected, and to watch their faces light up in some way because they know you really want to hear what they have to say. Everyone has a story to tell. I think that we all need to talk to people with lived experience, who better to tell it? So to me, working directly with those affected, is the most rewarding thing. I walk out of our sessions feeling like someone handed me a million dollars. Several of our programs are funded in part by New York City, so I have a team here, but I travel the country to places where they really need help, specifically rural areas. Those are the places I feel we make a big difference. Again, COVID-19 has kind of opened an interconnection to infectious disease. So it's a conversation you can have with everyone.
We are now also involved with the World Hepatitis Alliance, which is an effort for Hepatitis B and C, as well as the World Health Organization. The governor of New York appointed a task force in an effort to eliminate HCV. The target was to accomplish this by 2030 but we are set back by a few years due to COVID-19 causing services to be cut. But that is the path we are all on, because it is curable, drug prices have come down, and there is no reason we can’t get there.