Alex Shirreffs, then Viral Hepatitis Prevention Coordinator at the Philadelphia Department of Public Health, formed HepCAP as part of the Philadelphia Viral Hepatitis Coalition alongside HepTREC, Hep B Free, the Philadelphia Department of Public Health, the Office of Addiction Services at DBHIDS, Prevention Point Philadelphia, and the Philadelphia Hepatitis Outreach Project (PHOP), among others.
The Philadelphia Viral Hepatitis Coalition aimed to facilitate collaboration among Philadelphia’s hepatitis stakeholders, support programming, and evaluate hepatitis services in the city.
New Therapies: The U.S. Food and Drug Administration approved two new antiviral drugs for the treatment of chronic HCV. However, treatment regimens still included interferon (the gold standard treatment prior to 2011), and cure rates were still as low as 30 percent.
HepCAP’s first official meeting brought together hepatitis C stakeholders from all over the city. Our mission was to improve the continuum of hepatitis C prevention, care and support services by improving communication and collaboration between the many existing services in Philadelphia.
Over 300 people have participated in HepCAP. We became a member of the National Viral Hepatitis Roundtable, through which we engage with other national leaders to improve hep C policies.
On the local level, we built capacity by convening experts and advocates for peer support. We began focusing our advocacy work on treatment and cure access through eliminating treatment restrictions for patients with Medicaid coverage in Pennsylvania.
The introduction of the antiviral drug Sofosbuvir/Sovaldi demonstrated a 90% cure rate for hepatitis C. The price of treatment -- $1,000 a pill -- spurred another wave of conversations about treatment access and limits.
Despite restrictions on HCV treatment limit access to only the “sickest patients”, those with advanced liver disease, HepCAP and advocacy groups nationwide continued to make the case for treating ALL patients.
Patients with Medicaid coverage were disproportionately affected by the high cost of the new medications. Access restrictions put in place by Medicaid have made it extremely difficult for clinicians to obtain medication for their patients.
At this point nationally, up to 75% of baby boomers did not know they have HCV, and 73% of HCV-related deaths were in baby boomers. A new clinical recommendation regarding baby boomers gained support and relevancy: Anyone born between 1945 and 1965 should be tested once, regardless of risk factors.
In a rapidly changing treatment paradigm, HepCAP needed to stay up-to-date and educated on what options are available, to educate physicians and patients alike.
March: HepCAP traveled to Washington, D.C. to join other hepatitis advocates on Capitol Hill. We focused on hepatitis B and C federal policy issues, shared the experiences of people living with hepatitis B and C, and educated Members of Congress and their staff about hepatitis B and C and how they can support our policy goals.
May: With support from the CDC, the Viral Hepatitis Prevention Coordinators for the Philadelphia Department of Public Health and the Pennsylvania DOH coordinated to host a state stakeholder summit with leaders from public health, health systems, government and academia. This was a landmark moment in our advocacy journey, as it presented HepCAP leaders with the opportunity to meet and establish a relationship with PA Medicaid officials.
Barriers to access by the end of 2015
- Physician prescribing requirements: Physicians must get 2 letters of rejection from insurance companies in order to then get medications from drug companies
- Sobriety requirement: Insurance companies require 6 months free of alcohol and drug use before they will supply medications
- Fibroscan requirement: Insurance companies require a fibroscan before a patient can be treated
- Insurance companies limit treatment only to those patients who have end stage liver disease rather than curing patient while their liver is still relatively healthy ignoring current guidelines and accepted clinical practice.
Hepatitis on the Hill 2016
March: HepCAP joined national stakeholders in D.C. again in 2016 for another Hepatitis on the Hill summit sponsored by NVHR, APCHO and NASTAD. We visited legislative offices as part of a Hep on the Hill event and asked for support for an increase to CDC’s budget for the Division of Viral Hepatitis. We also supported an end to the ban on federal funds for syringe exchange programs.
State and National Policy Changes
March: Federal funds may now be used to support various components of SSPs, including HCV/HIV testing kits and naloxone (but not other supplies like syringes and cookers).
- Challenge: Public health and substance use are governed by two different departments in the city, with two different streams of funding
- Overdose advocacy is helping bridge the gap between these agencies; threat of infectious disease outbreaks (like the 2015 HIV outbreak in Indiana) has increase calls to treat overdose and other adverse effects of drug use criminalization as public health issues.
- In Philadelphia, the Department of Public Health’s Viral Hepatitis Program is part of the overdose prevention task force
September: Pennsylvania’s Hepatitis C Screening Act (Act 87) takes effect, requiring everyone born between 1945 and 1965 who receives health services as an inpatient in a hospital or who receives primary care services in an outpatient department of a hospital, health care facility, or physician’s office, to be offered a hepatitis C screening test.
Pharmacy & Therapeutics Committee Meeting
May: We went to Mechanicsburg, PA to advocate for treatment access by showing up for the Pharmacy & Therapeutics state advisory committee. It was a success– they recommended that PA Medicaid pay to treat all patients living with hepatitis C.
Press Conference at City Hall
Councilman David Oh hosted a press conference with City Hall so that viral hepatitis advocates could speak up about
Expanded Treatment Access for PA Medicaid
April: There is no longer a sobriety requirement to access care. This applies to both Fee For Service and Managed Care Organizations. There is, however, a screening and counseling requirement, and this is left to provider discretion.
May: The PA Department of Human Services announces long awaited changes to the state’s Medicaid policy regarding HCV treatment access. Over the course of the next year, major treatment access restrictions for direct-acting antivirals based on fibrosis scores will be phased out in Pennsylvania.
July: HCV patients on Medicaid with METAVIR liver fibrosis scores greater than F0 are granted access to treatment.
Under pressure from advocacy organizations that had threatened a lawsuit, the Wolf administration said Tuesday that it would expand Medicaid coverage for treatment of hepatitis C, a major change that many states have put off over fear of spiraling costs.
January 1st: All restrictions based on fibrosis score removed. There are officially no liver fibrosis limitations for treatment of hepatitis C for PA Medicaid patients, patients will no longer need to wait for their disease severity to increase before they can be treated.
Hepatitis C patients routinely denied drugs in 45 states, a Penn study shows (Philadelphia Inquirer, June 2018)
“Now that the policies have changed, it would be great to see hep C treatment become more integrated into primary care – which would make access much easier for patients,” Hildick-Smith said (…) “given the scope of Philadelphia’s opioid crisis and the fact that stigma can make health care access challenging for many people with a history of drug use, having treatment available in settings where people feel comfortable is important.”
HepCAP Town Halls: As HepCAP moved from its meeting place at 500 S Broad Street, we pivoted to a new structure of community meetings in different parts of Philadelphia, in order to share information and resources and to get a better sense of the landscape of hepatitis C awareness, services and barriers throughout the city.
February: Town Hall on Hepatitis C in South Philadelphia
April: Town Hall on Hepatitis C in West Philadelphia
June: Town Hall on Hepatitis C in North Philadelphia
Our #HepCAPHepFACTS Campaign brought together local, state and national hepatitis C champions to raise awareness of their work, important HCV messages, and of HepCAP as a coalition.