Philadelphia’s hepatitis C community has a breakthrough to celebrate this World Hepatitis Day: In January, Pennsylvania opened up access for more hepatitis C patients to receive the life-saving drugs that hit the market over five years ago. Because of the cost of the drugs, Medicaid was denying access for patients whose livers weren’t in bad enough shape or didn’t abstain from alcohol or drugs.
Now, Medicaid patients in the state can get the eight to 24-week treatment, no matter their liver status or drug and alcohol use. It was a big win for patients, clinicians, and the public health officials in the city and beyond who advocated for expanded access to direct-acting antiviral drugs – which have a 95 percent cure rate.
“That’s something I think as a community we should be really proud of and grateful for,” said Stacey Trooskin, MD, PhD, the director of Viral Hepatitis Programs at Philadelphia FIGHT, a health services nonprofit, who also serves as a clinical assistant professor of Medicine in the division of Infectious Diseases at Penn Medicine and the community co-chair of the Hepatitis C Allies of Philadelphia (HepCAP).
But the fight is far from over. Today, nearly 53,000 Philadelphians are living with hepatitis C, and only about half of them know it. Testing and connecting patients to care are among the toughest battles, along with the rise in new infections, which has ties to the opioid epidemic.
Aware of the challenges and needs of the community, experts in Philadelphia have set the city on a path toward eliminating the virus. Non-profits, the Philadelphia Department of Public Health, and clinical care providers like Penn Medicine are working together to help make this a reality by improving care and access to testing and education for vulnerable populations.
“We have the cure,” Trooskin said. “Now the question is, how do we deliver it in the most effective way?”
The News Blog talked with Trooskin to learn more about the challenges the city – and country – face, her roles in this fight, and what people should focus on this World Hepatitis Day, which falls on July 28.
Q: Hepatitis C is the most common viral infection in America that’s typically transmitted by blood, but also via sexual transmission, although not as easily. Who is most at risk for contracting it?
A: We know that people born between 1945 and 1965 are at high risk for hepatitis C, and the CDC [Centers for Disease Control and Prevention] recommends they be tested at least once in their lifetime. The reason for their increased risk is because the blood supply was not able to be tested for hepatitis C until 1992. That generation may have also participated in experimentation with drugs in the 1970s and 1980s. There also may be an unrecognized component of sexual transmission.
I think the most relevant risk factor now, however, is intravenous drug use. We are in the midst of a major opioid epidemic in our country and certainly Philadelphia is not being spared.
We have what has historically been an epidemic of the baby boomer generation, but now we have an entire new generation of individuals who are being infected because of injected drugs [by sharing needles]. So, I would say that currently, this is the most common mode of transmission in the U.S.
Q: What are some misconceptions about the hepatitis C virus (HCV)?
A: One misconception is that hepatitis C is a disease that only affects the liver. And certainly over time it can affect the liver; it can cause scarring to the liver, known as cirrhosis.
But not everyone with hepatitis C will develop cirrhosis. There are other manifestations that can also occur as a result of an HCV infection including fatigue, muscle aches, specific types of rashes, and other skin conditions. The virus may also impact the kidneys, and is associated with increased rates of diabetes.
Q: Pennsylvania expanded drug access to Medicaid patients, a population you mostly serve as an infectious disease physician working in the community. What has been the impact of that decision?
A: It’s been such a gratifying experience to live in a state that has opened up access so that all individuals can be treated for HCV, regardless of disease stage or whether they are actively using drugs or alcohol. It has been really extraordinary to be able to offer a cure to all the patients that walk through the doors of our clinics.
However, what I still feel really concerned and passionate about is the individuals who are living in other states across the country. There are still parts of our country where when someone goes into a provider’s office to be treated for hepatitis C, they could be told that their liver isn’t sick enough to be approved for treatment. To me, that’s unacceptable. We know that if we treat HCV early we can prevent scarring to the liver and decrease rates of liver cancer and liver failure.
Similarly, the data supports the fact that cure rates for individuals who are actively using drugs are just as high as in individuals who are not using drugs, yet in some parts of the country, there are restrictions in place that require someone to abstain from drugs or alcohol from anywhere from one to 12 months before a payer will approve HCV medication. That is inappropriate. There is no medical or scientific basis for those requirements.
I think that if we were talking about a cure for breast cancer or for Alzheimer’s, we wouldn’t have these types of restrictions in place. There is a lot of stigma around hepatitis C that has led to some of these parameters that are not based in science or medicine.
Q: Tell us about the FIGHT conference, “Path Towards Elimination,” you’re speaking at for World Hepatitis Day in Philadelphia.
A: We’re bringing together thought leaders from community-based organizations, and people who have lived with HVC to celebrate Philadelphia’s goal of eliminating the virus from our city.
Philadelphia’s plan to eliminate HCV is called “C Change” and is a collaboration between HepCAP and the Philadelphia Department of Public Health. The goal of “C Change” is to increase testing rates among people who inject drugs by 25 percent in a 30-month period, and to increase cure rates among people who inject drugs by 20 percent.
Another objective is to measure some patient-centered outcomes, so we can understand from a patient’s perspective what it feels like to go through the testing, as well as the care and cure processes, so we can build better models moving forward.
I will be talking about how Philadelphia is poised to be a leader in the area of HVC elimination, and how we have all the necessary components in our community, including an amazing department of public health, to make HCV elimination a reality.
Q: You wear many hats. You’re on faculty at Penn, a Program Director at FIGHT, the principle investigator of “C Change,” and the Chief Medical Advisor to the National Viral Hepatitis Roundtable (NVHR). Talk to us about your different roles and how they fit into elimination efforts.
A: Working at Philadelphia FIGHT allows me to be embedded in the community. At FIGHT, I run a program called “C a Difference,” which is a testing program that is in close collaboration with different substance-abuse disorder treatment programs in the city. We work hard to get individuals tested and linked to care, and are trying to meet the patient where they are as much as a we can. If we can bring [a service] to them, that’s one less visit they need to make to a provider’s office. The “C a Difference” program works closely with the citywide elimination program “C Change.”
We also have a collaborative program with the Philadelphia Department of Prisons. They are committed to testing inmates for hepatitis C and providing FibroScans (liver tests) for them as well. We have our linkage-to-care specialists visit those individuals while they are incarcerated to make sure they get the care they need when they are released.
My work with the NVHR allows me to be keyed into the national policy work, to introduce HCV as an area of importance to aligned organizations, and to help disseminate programmatic best practices so they can be adapted by partners around the country.
My work with Penn allows me to tap into a community of great minds and intellectual resources. The time I spend working on the inpatient infectious disease consult service [at Penn Presbyterian] allows me to continue to keep the rest of my infectious disease skills nice and sharp, and certainty the collegiality and being part of a research community there has really been helpful.
Q: You can’t talk about hepatitis C without talking about the higher cost of the drugs to cure it.
A: Actually, the cost of these medications has come down considerably since they have come to market. We know that when the first drugs came to market, the [cost] was around $90,000 [for a round of treatment for a patient]. And we know that the latest iteration of medications is around $26,000.
To give you a comparison, the cost for a single-tablet regimen for HIV for one year is somewhere between $26,000 and $30,000. So, the cost for a hepatitis C cure is the same cost for one year of HIV meds, which someone would need to be on for a lifetime.
Hepatitis C drugs may still be considerable economic burden given the high prevalence of infection, but I do just want to acknowledge that prices have come down and put things into perspective.
Q: What’s one of Philadelphia’s biggest challenges with the disease?
A: Right now, it’s the intersection of the opioid epidemic and hepatitis C. The city’s commitment to support harm reduction services and access to clean needles and syringes is going to be key if we are going to curtail the transmission of HCV.
Q: What should people be made aware of or focus on for this year’s World Hepatitis Day?
A: I think the message for 2018 is that elimination is feasible, we have the tools to make it happen, and we just need everyone to come together to make it reality.
What we need is government engagement. We need backing for sustainable models of access to medications, and funding for testing and linkage to care programs. And we need the federal, state, and local governments to say we value elimination; we see the long-term benefits both in the health and wellness of our citizens but also financially.