An Open Community Call to Discuss the Barriers to
Hepatitis C Care for People Who Use Drugs
Monday, March 6, 2017, 4 pm Eastern
1-800-216-6327, access code 716341
Summary
The More Than Tested, Cured project began in 2017 as a partnership between the National Viral Hepatitis Roundtable (NVHR), the Atlanta Harm Reduction Coalition (AHRC), the People's Harm Reduction Alliance (PHRA) and the Urban Survivor's Union (USU), to work together nationally to improve access to hepatitis C care faced by individuals who use drugs. This call was the first public activity of this project and was held on March 6, 2017 and involved over 100 participants. The discussion focused on challenges that community organizations face in accessing hepatitis C prevention, care, and treatment services for people who use drugs. Common concerns included insurance coverage inequities, stigma among providers, and provider resistance to treat due to concerns about reinfection. Some solutions that were discussed included provider education programs (mostly intended to reduce stigma), patient education programs (that involve peer educators) and working with community partners to improve access to care for people who use drugs.
Learn more about this project and see updates on our webpage here
1.Welcome and introductions
Tina Broder, Program Director, National Viral Hepatitis Roundtable (NVHR) (and call moderator) welcomed everyone to the call. She then gave some background information about NVHR. NVHR isa coalition of nearly 500 organizations as well as government and industry partners nationally working to fight and end the hepatitis B and hepatitis C epidemics in the U.S. The More than Tested, Cured Project began this year as a partnership between NVHR, the Atlanta Harm Reduction Coalition (AHRC), the People's Harm Reduction Alliance (PHRA) and the Urban Survivors Union (USU), to work together nationally to improve access to hepatitisC care faced by individuals who use drugs. Tina said that the goal of the call was to provide everyone with some additional information about the project, learn more about what everyone is experiencing in the community, and begin to identify ways that service providers and advocates can work together nationally to improve access to hepatitis C care.
Next, people on the call introduced themselves.There were 103 participants on the call, including community members, advocates, healthcare providers, and health department representatives, as well as federal and industry partners.
2.USU project overview – Louise Vincent
USU a national union made up for former and active drug users. The aim of the Union is toprotect their rights, improve their lives, health and social conditions. The organization works on a federated system with national and local chapters. The Piedmont chapter is working on this project that is investigating what the barriers are for people who use drugs in hep C testing and treatment. There is a specific focus on insurance issues, women and hepatitis C and stimulants. By the end of the project, they hope to have a short video highlighting barriers to care for people who use drugs. The intervention should be for anyone who wants to train, but specifically for health educators. Their other grant deliverables include a literature review, a survey of over 100 drug users and holding several focus groups.
3.PHRA project overview – Shilo Murphy & Kara Bensley
PHRA is a drug user run needle exchange program in Washington and Oregon with the intent to love drug users just the way they are. In this project, they’re looking at people who have been tested and need treatment, focused on decreasing barriers in patient/physician interaction (stigma). They have people doing this work locally in Seattle, Washington and nationally looking at common barriers, and are going to be surveying physicians. PHRA will be creating materials that will address these major themes to increase physician understanding of this population.
4.AHRC project overview – Dr. Mojgan Zare
AHRC has been providing services to the intravenous drug user community for 22 years. AHRC aims to decrease risk for contracting hepatitis, HIV/AIDS, STIs and other communicable diseases. AHRC is working with specialty providers to decrease barriers to treatment and decrease patient detraction stigma. The activities occur after the patient has been tested and confirmed, and is awaiting referral to a specialist. To reach their goals, AHRC’s partner is the Grady Liver Clinicwhich provides treatment for people who have acute or chronic hep C.The clinic also provides treatment to active substance users (certain criteria must be met). AHRC is working with the liver clinic to learn what system is used to decide to treat the patient or not (discovering whether or not the system is consistent). They’ve identified 30 specialty providers close to their office that patients can attend their clinic. They're asking if these providers can provide treatment to substance users and if they cover the cost. AHRC is conducting research on specialty providers locally and nationally to find out why don't they treat active drug users. As a project outcome, AHRC will create questionnaires and a PowerPoint presentation to educate specialty physicians and providers on harm reduction and how to work with drug users then link patients to these providers and then see what barriers continue to exist.
5.Discussion
- What are the biggest challenges that you or your consumers face in accessing hepatitis C prevention, care, and treatment services?
Cyndee Clay – HIPS - a harm reduction organization in Washington DC
The population they help include drug users, sex workers, and transgender people. They started a hep C clinic about a year ago with the University of Maryland & NIH. They did testing and began to look at what access for treatment might look like andfound there were no docs in DC who would even talk about treatment for drug users. Potential patients were told they had to abstain for 6 months before even talking about treatment. They continue to see this issue. There is a research now study that intends toprovide treatment for 100 active users. In initiating the study, they observed that the medical team was having conversations with users about what different insurance companies would accept as far as treatment. This was challenging for the team and for drug users because they weren’t using same language at all.
Dr. Trang Vu – Mount Sinai – Hep C primary care based liver clinic
They treat drug users at their clinic and face pushback from insurance about them. Some insurers require no drugs to be in the patient’s system, other insurance plans don’t. For them, insurance is a big barrier.
Jessie Ross – USU
The site for their needle exchange is Raleigh on site with a methadone clinic. To be referred to hep C, patients have to be clean for one year. They’re talked down to horribly.
Anonymous Healthcare provider
A barrier for care for her organization is that many providers are afraid of reinfection. They’re unsure of what insurance companies will do with reinfection. Will they treat again? The biggest fear is reinfection rates since they don’t have a great needle exchange program there. (They’re trying to build partnerships with this before treating active drug users.) She asked the group if anyone has experience with getting insurance to pay after reinfection. Joe Buffalo at Southwest Care Center in Santa responded that half of his patients are active drug users and Medicaid doesn’t mind treating reinfections. They’re considered successful because they prevent new infections and reinfection is rare. They have a harm reduction counselor on staff. Dr. Zare said that this is a common fear across providers. A big concern is drug treatment patient assistant programs from big pharmaceutical companies only pay one time. This is why the provider needs to make sure they’re ready (or to connect the patient to other support programs). One of the points of this program is to decrease stigma to not put away the whole population because they “might” get reinfected. Some might, but also many if plugged into services won’t get reinfected. The anonymous caller responded that their harm reduction services aren’t that great but they’re working on it with the regional health department.
Cynthia English – St. Louis County Department of Public Health
Cynthia asked what nurse case management system people use to keep patients consistent with their treatment. Joe Buffalo at Southwest Care Center said they have a pharmaceutical grant for a consistent case management system and check on patients as often as needed. They run more on an HIV model in terms of how they initially assess patients. Dr. Vuat Mount Sinai said they have a high success rate utilizing patient navigators, social workers and nurses. Meds are dispensed in the clinic, patients return every two weeks to pick up meds, they also see provider for medical, social work or nursing visit at that time. This helps patients stay on track with treatment.
Rich Baker from Boston said they use a peer support services model for HIV infection. There’s no funding for a peer support model now, which is a significant challenge for connecting to care. He’d like to see the peer model return for HCV support services.
Patrick – One Voice Recovery Utah
They have a syringe exchange program with health empowerment coaches, HIV/HCV peer navigators and HIV, HCV and syphilis RAPID testing. They also work with treatment centers in the area to train on HCV, create community partnerships with people who provide care for people who have HCV, and look for other organizations doing peer work to learn from them. All of this isn’t funded yet, so it’s paid out-of-pocket.
Kara (moderator) asked if there are any other barriers to mention as it pertains to providers.
Rich Baker – Boston VictoryPrograms
Some providers are assuming risk factors for HCV (i.e. telling people they don’t need a one-time HCV test). We’re trying to educate providers on who is at risk. This has been relatively unsuccessful there in Massachusetts.
Louise Vincent – USU
They’ve seen stigma within the drug community and lack of education. They’re working on it.
Stephanie – North Carolina AIDS Project
She’s seen transportation issues, especially among the uninsured in a rural area.
Joe Buffalo – New Mexico
Joe suggested setting up Echo in your state. Another caller said that the contact for this is the hep C program coordinator at the University of Utah – Justin .
- What’s working in your community to prevent reinfection and improve access to treatment? What hasn’t worked? What has been particularly useful or innovative to share?
Mike Selick – Harm Reduction Coalition
Mike is part of a peer-based program from each of the 15 syringe exchange programs in New York City. More information about this program can be found here. They’ve been able to get the peers trained and the program has been successful in getting the vast majority of people in the program screened for HCV and navigating treatment denials. They presented at a conference in San Diego last year and will be presenting this year at the Harm Reduction Conference.
TinaBroder (moderator) –Are there resources that would be helpful to your work in the community to address barriers?
Dan Bigg – Chicago Recovery Alliance
Sidestep this stigma in the medical community by working with active drug users, provide treatment with the respect that has been used in harm reduction programs.Suggest working with medical people there or having standing order to follow WHO protocol in all settings (methadone clinics, syringe sharing programs, etc.)
Tina (moderator) - Is anyone familiar with innovative programs that do services outside of traditional settings?
EmalieHuriaux – Project Inform
One example is a hospital-based methadone clinic, which has had 100% of its population tested for HCV and has made good progress in treating people. Another one is in a predominately African-American community across the street from a public health clinic. This close partnership is working well.
Kara Bensley – (moderator)
Part of PHRA’s work with this project is to create processes which would support people who want HCV treatment who participate at needle exchange. Part of this is working with doctors to try move more care (picking up meds, doing testing, etc.). What can PHRA feasibly provide at the needle exchange where people are already coming? Kara is interested in knowing what others are doing and what’s worked in community She can be contacted at This information will be helpful for what they’re doing in Seattle.
Jennifer Lorvick – RTI International
Jennifer asked Cyndee at HIP if the program she described is a needle exchange. Cyndee said that it’s a program within a center that combines harm reduction programs, drop in center, linkage to care, primary medical services on site. This is in addition to of hep C center services that include case management and housing navigation located with other harm reduction series. They combined health services with the peer navigator. This has helped people adhere to medication and can possibly help with reinfection concerns. The medical team deals with insurance rejections and related issues.
Unknown Caller - Mission Wellness Pharmacy in San Francisco – local specialty pharmacy
Pharmacy can help with prior authorizations, preform screenings, and receive mail-order prescriptions (for people without a mailing address)
Kara Bensley (moderator) - Kara thanked everyone for participating. Noted that there are different barriers that exist across the country with underlying themes.
Tina Broder – NVHR (moderator)
Tina announced that NVHR is currently accepting proposals for seven $10,000 minigrants to programs who want to expand their hep C education, screening and linkage to care activities. Find more information here. Applications are due in 3 weeks.
This project is ongoing. There will be a webpage to share resources, information and a summary of this call. Please look for additional webinars and calls over the course of the coming year.
Questions or comments? Contact Tina Broder, NVHR’s Program Director,
Supplemental Resources:
HCV Treatment in People Who Inject Drugs Co-located within A Needle Syringe Program
The Increasing Role of Methadone Clinics for HCV Treatment, Education
Can methadone clinics also fight hepatitis C?
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