How Did Kids in Princeton Get HCV?

An outbreak of hepatitis C in mostly young, white, suburban heroin users who live in or near Princeton, NJ, made headlines after it was reported Oct. 7, 2015 at IDWeek 2015 in San Diego, CA.

Ronald Nahass, MD, was a co-author of the IDWeek study. He is president of ID Care, the facility where these patients were diagnosed after they got heroin detox treatment at Princeton House, a psychiatric facility that is part of the Princeton Healthcare System. ID Care has 50 clinicians and nine offices practicing out of 26 hospitals.

In an interview, Nahass discussed the outbreak and its implications.

Q: What did your study find?

We started partnering with Princeton House because they were recognizing a very high number of people under 35 who had hepatitis C. We very quickly found that almost 42% of the young people being admitted to this inpatient psychiatric facility for detoxification off heroin were positive for hepatitis C—a huge problem with this region.

Q: Are these people who knew each other and shared needles?

There were only two strains of the hepatitis C virus circulating within that community so that would lead us to believe that this is what’s called a network phenomenon. A lot of the folks did not know each other, but it’s the degrees of separation. They may have acquaintances with the region and therefore share that virus within the region.

Q: Were they all injecting drugs at the same location?

It’s a five-county area and within each of the counties there were certain smaller geographic distributions of the individuals, but honestly, it was widespread. One shouldn’t believe that it’s only specific cities or specific location.

Q: What else did your study find?

Over 90% of the individuals affected by the addiction and hepatitis C were white and more than 50% were women. We also saw a rather unique distribution of hepatitis C genotypes. Twenty percent were GT3, which is unusual since it represents about 8% infections [in the US].

Q: Is genotype 3 as treatable as the other genotypes?

Yes, because of the newer treatments, but it tends to be a bit more aggressive as a strain and it is important to identify it and get it treated so that the complication of HCV don’t occur.

Q: What were the reactions of patients when they found out they had hepatitis?

These patients are in the middle of [heroin] withdrawal and they are dealing with challenges that affect them personally, professionally, and socially. So it’s yet another burden and it can be a pretty emotional experience. A couple of patients that I can remember, it just brings me to tears. It’s their youth, being young and struggling and then to have yet another burden.

Q: Do most of the patients have insurance that will cover direct acting antivirals?

These patients are young and do not have a lot of injury to their liver. Many of the insurance companies don’t pay for treatment who do not have liver scarring, that is, fibrosis. Also they are using heroin and many insurance companies will not pay to treat active users. We struggle with getting approval from the insurance companies because of those two reasons.

Q: Did you track patients to see how they did with follow-up, whether they got hepatitis care or not?

That would be what we call completing the cascade of care. We identified them, but we only successfully linked 15% of them to care.

Q: Isn’t that very low?

It is very low. Previously the rate was zero, so it’s better than that but it’s certainly unacceptably low.

Q: Why is there such a gap?

Our next project is to identify the challenges for linkage to care. Part of it relates to recidivism, the rate for use of heroin is really quite high. Linking and somehow partnering treatment of the addiction to the treatment of the hepatitis be believe would be better.

Q: That’s not generally done?

Generally not. The tragedy is that treatment is almost universally effective. . you might actually have an opportunity to stem the epidemic. Insurance issues are part of the problem, though transportation and geographic accessibility can be issues as well.

Q: NY State has agreements with major insurers that require them to cover hepatitis C treatment even when a patient is still abusing drugs or alcohol. Is that groundbreaking?

Yes, I’m hopeful that will happen in NJ.

Q: How can you be certain that patients listed as lost to follow-up did not go on to get care?

We do not know. Maintaining contact with this group is a challenge.

Q: What about needle exchange, don’t these patients know about that?

Most seem to be aware, but I don’t know that they know how to access these [needle exchange programs] and that perpetuates the epidemic.

The exchanges were set up for HIV prevention. In our group thankfully there is no HIV. We’ve tested close to 600 individuals and we have yet to find somebody who has both HIV and hepatitis C. It’s a big concern of ours.

Q: How typical are your findings compared to other parts of the country?

Heroin use and hepatitis C infection has been pretty widely described in a lot of states. NJ is now added to that list.

Q: Did your finding that these young people had hepatitis did it surprise you?

The magnitude surprised me, that it was almost 42% of of people under 35 using heroin who had HCV.

Q: What comes next for you?

We’re looking intently at the factors that are challenging our ability to link to care and we want get funding to address some of the specific issues.

Q: What lessons could you share with other providers?

The recidivism issue has to be addressed. It can’t simply be a matter of just detoxifying somebody. Keep them involved in the care system with folks who are engaged and interested in caring for them.

Also, that this a second peak in the hepatitis C epidemic, a second wave of young suburban heroin users. The first peak was related to drug use in the 60s and 70s but those folks are now productive members of society and they’ve got jobs and they’ve got families. I think it’s important to not lose sight of the fact that folks can get past that. Heroin is not a dead end.

Q: How long do these newly infected young patients have before they get liver damage?

It varies, but the virus is slowly moving. Twenty percent of people will spontaneously cure it. Of the 80% who become chronically infected, 25% will go on to develop late complications including liver failure, cirrhosis and liver cancer after 20 to 40 years. But it’s easier to treat when you’re young and when it’s an early infection.

Q: And they won’t spread it to others, right?

Yes, that could potentially end, or I call it bend the curve, of the epidemic.

Q: Final thoughts?

I think the message is really one of hope that it is curable and you just need to work harder at it.