Town Hall on Hepatitis C in South Philadelphia
February 4th, 2019
South Philadelphia Library
44 people filled the room for our first town hall, including representatives from 19 different organizations. It was wonderful to see so many new faces.
Jack & Stacey kicked off the town hall with opening remarks, an introduction to HepCAP and a quick knowledge primer on hepatitis C.
Danica Kuncio from the Philadelphia Department of Health’s Viral Hepatitis Program provided a data update, emphasizing the prevalence and urgency of this epidemic in South Philadelphia. We learned that there have been 1,596 new diagnoses of hepatitis C in South Philly alone since 2013.
Dr. Priya Mammen spoke about the lessons she’s learned as a doctor in the emergency department, using the ED as a point of access to test people for hepatitis C and connect them to treatment.
Destinie Campanella provided insight into how harm reduction guides her work engaging people who use drugs in South Philly. This philosophy of “meeting people where they are at” is a key part of HepCAP’s work and a powerful reminder of what it will take to eliminate hepatitis C in Philadelphia.
HepCAP’s founder Alex Shirreffs ended the Town Hall with a rousing call to action, reminding us that we need to work together.
Discussion takeaways
After hearing from our speakers, we got into small groups and put our heads together to discuss the conversation around hepatitis C in South Philly, as well as the resources, gaps and opportunities in addressing the local epidemic.
In a diverse and unique region of Philadelphia characterized by strong social networks and varied opportunities for outreach, we recognize the immense barriers to care that different people face in protecting themselves and in getting cured of hepatitis C. We also recognize the strengths that make this work possible: strong social networks, public space infrastructure, and a diverse and politically active population.
Hepatitis C is a silent killer. Particularly for an older population, we should prioritize scaling up testing for those who may not see themselves as engaging in “risk factor” behaviors. While PA Act 87 mandates screening for all people born between 1945 and 1965, the recommendation isn’t universally followed.
We need to stand with harm reduction advocates and call for expanded access to supervised injection sites, syringe exchange programs, and other harm reduction services. As long as legal status and funding for these services hang in the balance, we lose opportunities to help people protect themselves from hepatitis and HIV.
Stigma and blame directed towards those who use drugs function as barriers to accessing resources and care. In South Philly’s close-knit communities, a need for privacy may keep people away from more public options such as mobile outreach vans. We need to make it easier for recovery and drug treatment centers to integrate hepatitis C testing and treatment.
Models of advocacy and outreach should be adjusted to fit the community’s needs. Events such as this Town Hall should take place in accessible community settings: churches, tattoo parlors, senior living and community centers, rec centers and libraries.
Conversations about hepatitis C and its driving factors need to happen more often, particularly among politicians, providers and the
general public.
South Philly is a diverse region of the city with strong social networks and unique opportunities for region-specific outreach models, and where those who are homeless and/or who are using drugs face immense barriers to care.
WEST PHILLY TOWN HALL
35 people filled the Fellowship Hall at the Calvary Center for Culture and Community for our second town hall on 4/19, including representatives from 15 different organizations. It was wonderful to see so many new faces. If this was your first HepCAP meeting, welcome!
Jack & Stacey kicked off the town hall with opening remarks, an introduction to HepCAP and a quick knowledge primer on hepatitis C.
Danica Kuncio, Viral Hepatitis Program Manager at the Philadelphia Department of Public Health, provided a data update emphasizing the prevalence and urgency of this epidemic in West and Southwest Philadelphia. We learned that 1 in 85 people in West and Southwest Philly are living with hepatitis C, and there have been 3,280 new diagnoses since 2013 alone. Around 57% of West and Southwest Philly residents who are diagnosed with HCV are baby boomers. However, every group is affected, and there has been a rapid increase in new cases due to drug use. Across the board, there are low rates of engagement in care and treatment.
**Do you have questions about this data or want to know more? E-mail: danica.kuncio@phila.gov **
Jody Gilmore, ANP-BC has been treating hepatitis C patients for nearly 20 years. She’s seen all of the progress made in treatment and treatment access for HCV treatment and cure. In her current position as the Viral Hepatitis Coordinator at Penn Presbyterian, she’s also seen firsthand the gaps and barriers in care that make up the current landscape of HCV services in the Philly. The three Penn Emergency Departments combined get 2,109 visits a year from patients with opioid use disorder. Jody spoke to us about how PPMC is increasing HCV screening and treatment rates with people who are engaged in mediation assisted treatment. Within the challenges of the care cascade, including referring people from the ED to primary care for HCV treatment, PPMC has treated 402 patients between 2014 and 2019.
Shawn Westfahl from Pathways to Housing PA spoke about HCV prevention in communal living, and about how the barriers to health care that affect people who are homeless or at risk of becoming homeless. Shawn’s talk led into a discussion about how West Philly residents can connect to people and resources that will help their communities take care of each other– whether that is educating your neighbors about proper syringe disposal, or by calling Project HOME’s 24-Hour Homeless Outreach Hotline at 215-232-1984.
Hannah Zellman, Program Manager of C-Change, ended the Town Hall with a call to action and asked attendees to think of one action they will take to improve HCV awareness and services in West and SW Philly. Here’s what we came up with:
- Pass on information about HCV to my mother who is a Block Captain in West Philly, so that she can tell the neighborhood
- Tell my husband, a nurse at a nursing home, about how he can educate the residents there about HCV
- Make my organization focus on proper syringe disposal practices
- Start having conversations at my own organizations about how we can support people who are at risk for or who are living with hepatitis C
Discussion takeaways
After hearing from our speakers, we got into small groups and put our heads together to discuss the conversation around hepatitis C in West Philly, as well as the resources, gaps and opportunities in addressing the local epidemic. We were able to to tap into the expertise in the room to creatively answer pressing questions. Here are some of our thoughts about HCV in West Philly:
- Conversations about hepatitis C should occur at the community level in both traditional health settings (such as primary care offices) AND other settings (such as pharmacies, churches, mosques, parks and libraries)
- There is a need in this area for mobile units for HCV testing. Between 2012 and 2015, Drexel’s Do One Thing mobile testing van increased access to HCV and tested 780 individuals in its first year of operations. The initiative was well-recieved by the community, and we need a similar service now in order to meet West Philadelphians where they’re at!
- People who are already talking about hepatitis C are having these conversations at their organizations are more likely to work in health care or with HIV/AIDS. We should further integrate conversations about HCV into HIV and STD care settings.
- Preventive health care is lacking, particularly for those who are uninsured or underinsured
- To educate the community and decrease stigma, we need widespread media campaigns that normalize HCV, featuring diverse and familiar faces. This would help fulfill the need to educate everyone, not just older people or those who have risk factors for HCV, about how to be safe and get tested and treated.
- Decreasing stigma and discrimination towards people living with HCV should be a priority for all health care providers. There is a need for non-stigmatizing language and for educating people about the realities of drug use,
- We should increase educational initiatives about HCV for nursing and health professions students in West Philly, as well as for staff at private practices who are not necessarily affiliated with big programs. There is an opportunity to raise awareness of resources and funding, etc.
- Community organizations such as AFAHO (African Family Health Organization) have been providing essential services and hepatitis/testing education to the African and Caribbean immigrant communities in Philadelphia. How can we partner with organizations who are already doing this work, in order to expand everyone’s capacity?
- Universities and big hospitals have an obligation to serve their surrounding communities. We should partner with students at these institutions.
- Along with health centers and hospitals, West Philadelphia is home to many neighborhood associations and community development corporations, as well as strong networks of block captains and community leaders. We all have the capacity to use these networks to spread the word about HCV in West Philly.
Our Town Hall in North Philly on Thursday 6/20 brought 34 attendees, HepCAP regulars and new members alike, to the Pennsylvania Recovery Community Center for an evening of learning and discussion around the hepatitis C landscape in North Philly.
Dr. Trooskin kicked off our meeting with an overview of hepatitis C and the role of HepCAP in removing treatment access restrictions in PA and our ongoing journey to eliminate hepatitis C from the city of Philadelphia. (Download the presentation [pdf])
Danica Kuncio from the Viral Hepatitis Program at the Philadelphia Department of Public Health gave us the data update on North Philly. The numbers were staggering in this diverse region of the city. According to the number of cases investigated by the Department of Public Health, 1 in 20 people living in North Philly have HCV. (Download the presentation [pdf])
Our first clinical perspective came from Halley Balkovich, an HCV navigator with C-Change, HepCAP’s hepatitis C elimination program. Halley shared some important insights from her work supporting integration of HCV testing into behavioral health settings, through navigating those who use injection drugs from HCV treatment through to cure.
Halley explained how integrated care models, like the one she’s a part of at Stephen Klein Wellness Center, can meet people where they’re at, allow for people to support each other through treatment, and foster innovation in care models. She observed that people who have been cured or are going through treatment can support their peers and loved ones to do the same.
Gina Simoncini also provided her clinical perspective as the director of Temple’s HIV program. Her story about a patient who came into the Episcopal ER to be treated for an abscess from injecting drugs and subsequently tested positive for both HIV and HCV illustrated that there are narrow windows to engage people in care, many transitions happening in peoples’ lives– this patient went from Temple Episcopal to prison and back– and medical co-morbidities, that make it difficult to get people to cure. In Dr. Simoncini’s own words: “We need to make it easy on patients, and the health care system in the U.S. does not.”
Dr. Simoncini also shared that, had Temple’s program had only screened baby boomers or only screened injection drug users, they would have missed out on a majority of people who are living with HCV in Philly. Simultaneously incorporating and thinking outside the boxes of risk factors and clinical recommendations contributes to breaking down silos and reaching people who need care.
Mike Battle, a drug and alcohol counselor at Gaudenzia, spoke about his experience as someone who had been engaged in HIV care from his time at recovery centers decades ago, to getting diagnosed then cured of chronic hepatitis C. Mike emphasized that, due to barriers to care and co-morbidities, HCV treatment can often be the last thing on peoples’ minds– short-term goals like getting into drug treatment or permanent housing, for example, can be more important.
Mike’s insight into how chronic illnesses, co-infection and addiction interact and lead to poorer health outcomes emphasized that we need to make it easier for people to know their status and be cured. His talk also opened up a discussion about how people undergoing treatment in recovery centers and homes are operating under unique constraints when it comes to their medical care.
Discussion Takeaways
- We need to raise awareness of the current hepatitis c landscape and oppose stigma. This includes getting the word out about the scope of the epidemic so we can grow our community, as well as getting information about how to get tested and cured.
- More provider education opportunities
- Media campaigns- thinking outside the box
- Need posters at corner stores
- Campaigns on buses and trains
- Need to identify community spokespeople – someone who is relatable and has shared experience
- Lead by example: get people’s stories of treatment and cure out to communities
- Working with social networks of people who use drugs, baby boomers, etc. to reach people
- Settings: meet people where they’re at!
- Many people at risk of HCV are involved in the criminal legal system, and we need to increase supportive services for this population
- We need mobile clinics for both screening and treatment
- Church/ places of worship have community days, we need more health partnerships with faith communities
- Educate at high schools: We should integrate HCV education with HIV education. This is also a way that we can reach parents and grandparents
- Integrate services and education into food banks, and other places where people are already accessing needed resources
- Develop pharmacies’ capacities to help people navigate treatment. We need to make it easier, not harder, on patients!
- Need peer leadership, people who can encourage each other to get tested and cured
- ‘Seeing’ is important – seeing someone who is cured that is like you and has shared experience and seeing them healthy makes an impact
- New partnerships
- With faith communities
- With recovery centers and addiction treatment programs
- North Philly is a diverse and large area of the city with a lot of HCV burden, full of people– whether they are doctors, nursing students, grandparents, faith leaders, harm reductionists, recovery specialists– this meeting was just the beginning of tapping into vast networks of people who can work together and gather the tools to end the epidemic in Philly.
- If you’d like to convene your own group or local meeting about hepatitis C, HepCAP can provide you with assistance and resources!
- Resources at the meeting included overdose prevention resources, information about the Philadelphia Hepatitis Outreach Project (P-HOP) and more! Please reach out if you have questions or would like to be connected to these resources.
Call to action- What will you do?
- Talk to my kids
- Tell my family to get tested- let’s go together!
- Invite my classmates to come to HepCAP meetings
- Reach out to educators I know, who are already doing this work
- Learn from other social movements like HIV activism
RSVP to our Kensington townhall!