Hepatitis C (hep C, or HCV), a virus that affects the liver, is sometimes called a "twin epidemic" to HIV. At least a quarter of people living with HIV in the U.S. are coinfected with hepatitis C, which is also transmitted through contact with an infected person's blood. As with HIV, African Americans are disproportionately affected -- they are two to three times more likely than whites to have been exposed to hep C, and far less likely to be cured using current treatments. That's where hep C differs from HIV: It can be cured -- and when promising new treatments become available in the near future, it will be more curable, especially for African Americans.
Yet, of the estimated 5 million people living with hep C in the U.S., more than 70 percent are not aware they have it. The population most at risk is "baby boomers" -- those born between 1945 and 1965 -- but most people who've been exposed don't even know they've been at risk. And in its silence, hep C kills more people in the U.S. per year than HIV.
So, how do you get baby boomers who may have tooted a little cocaine in their day to be tested for a disease commonly associated with injection drug use? How do you advocate for people who don't know they need an advocate? The answers lie in some exciting sea changes in hep C screening and care -- including a landmark New York state bill requiring health care providers to offer a hep C test to their baby boomer patients. Here to talk about these changes are Geraldine Joseph, a physician assistant with the Ryan Network and the St. Luke's Medical Group in Harlem, where she coordinates the Hepatitis C Program; and Hadiyah Charles, hepatitis C advocacy manager at the Harm Reduction Coalition (HRC), a national advocacy organization based in New York City and Oakland, Calif.
Olivia Ford: Could you paint a picture of hepatitis C and its prevalence in the U.S.?
Geraldine Joseph: In general, hepatitis C is an infection that we see most often in baby boomers -- people born between 1945 and 1965. The majority of these people, about 75 percent of them, have not been tested; and quite a few of them that have been tested have never been linked to care for hepatitis C. Because people may have hepatitis C and be asymptomatic (they have no symptoms), they unfortunately don't see the importance of following up with their providers about it. The patients that I am seeing are people that have had hepatitis C quite some time, and their primary care provider has told them, but they've never followed up.
Olivia Ford: Why are baby boomers at particularly high risk for hepatitis C?
Geraldine Joseph: The period in which baby boomers were coming of age was a time where there was a lot of "free love," and people used drugs casually. Even a person who used drugs once or twice could have been at risk for hepatitis C -- I have patients that used drugs only once or twice; maybe they'd just done some cocaine with a group of friends.
Speaking of which: When people think of hepatitis C, they usually think of injection drug use. I do see quite a few patients with injection drug use histories that have hepatitis C; but I've also seen people that have never used injection drugs, but have snorted drugs. People have blood vessels in their noses, and when you share drug paraphernalia to snort drugs, there can be an exchange of blood, and you can get hep C.
Also, prior to 1992, blood and organ banks did not screen for hepatitis C, so people who had blood transfusions or organ transplants prior to 1992 would be at risk.
Olivia Ford: Why is hepatitis C screening of particular concern for African Americans?
Geraldine Joseph: Demographically speaking, African Americans are disproportionately affected by hepatitis C. We also see the lowest cure rates for hepatitis C among African Americans -- and also people of Latino descent. That has to do with the IL28B gene, which has three subtypes (CC, CT and TT). We can do an IL28B genotype test to check a person's subtype and see how likely that person is to respond to hepatitis C treatment. If you're CC, you're highly likely to be cured from hep C with the standard of care that we have available for genotype 1 patients, which would be triple therapy: injectable interferon plus oral ribavirin, combined with either of the protease inhibitors Incivek (telaprevir) or Victrelis (boceprevir).
If you're CT: you're pretty good, also.
But with TT, you're really less likely to be cured of the disease. And, unfortunately, African Americans have higher rates of the TT subtype.
Even with the developments in hep C treatment over the past several years, and the triple therapy we now have for genotype 1 patients, cure rates are still not the same for African Americans as they are for whites or Latinos, because we still have to use interferon. I'm not seeing the 85 percent cure rates in my practice that we saw in the clinical trials. I'm definitely seeing higher rates of success; but unfortunately, a lot of patients discontinue treatment because of the side effects of interferon and ribavirin, whether they use telaprevir or boceprevir.
Olivia Ford: Is there hope, as far as cure rates for African Americans, with any new hep C meds coming down the pipeline?
Geraldine Joseph: We anticipate, in the next 18 months to two years, the approval of all-oral treatment for hep C with the nucleotide polymerase inhibitor sofosbuvir (GS-7977). We're seeing, even in people of color, cure rates of 90 to 95 percent in some of these clinical trials. They're looking really, really promising. Because you don't have to use interferon -- which we can't use to treat patients that have mental illness that's not stable, or that have any autoimmune disease, which quite a few of my patients do. And many other patients, who have heard about the side effects of interferon, or have been on it before in past treatment, don't want to be on treatment because they don't want to deal with it.
Hadiyah Charles: Another thing with interferon is that it's administered through injections. For people who have a history of drug use, sometimes having to inject a medication triggers a difficult history.
Geraldine Joseph: There are a number of promising drugs in phase 3 trials that will definitely have interferon-sparing regimens, which will make a huge difference in one's cure rate, because they're tolerated better. To Hadiyah's comment, even people who haven't abused injection drugs may just not like giving themselves injections on a weekly basis.
Hadiyah Charles: The New York state hepatitis C screening legislation is particularly important for African Americans because, with the Affordable Care Act (ACA) coming down the pipeline, we're anticipating that people who didn't formerly have access to health care will now do so.
We're still waiting on New York state Gov. Andrew Cuomo to sign the hepatitis C bill into law. Once the bill becomes the law, baby boomers should be offered a hepatitis C rapid test when they see their physician for their annual checkup. That's an opportunity for them to be able to find out whether or not they have hepatitis C, and if they do have it, whether or not they're chronically infected.
The biggest, most amazing thing about it is that, if they are chronically infected, the new medications coming down the pipeline offer an eight- to 12-week regimen, all oral, no interferon.
Olivia Ford: As far as advocacy is concerned: With HIV advocacy, we know that stigma can be a big stumbling block to increasing awareness. Is the same true for hep C? Is the stigma different? What are some of the unique challenges around hepatitis C advocacy?
Hadiyah Charles: There is stigma associated with hepatitis C; but what's both fortunate and unfortunate is that most people do not know about the disease. And if they're aware of it, most people think that there is a vaccine for it, which there is not.
The CDC issued guidelines in August 2012. In those guidelines, they basically said that every baby boomer, every person born between 1945 and 1965, should have, or at least be offered, a hepatitis C screening test at least once, the next time they interface with medical professionals. That guideline more or less framed the message for hepatitis C. I think it was strategically done, in that they weren't necessarily targeting people that have a history of drug use. The difference between that and the framing of HIV is, because HIV is associated with sexuality and drug use, and has been framed as a "gay" message, many people weren't interested in getting tested; they just did not want to know more about it.
With hepatitis C being framed as a disease that really affects baby boomers, it's a little bit easier to introduce the conversation of how a person would contract hepatitis C.
When the coalition of advocates drafted the legislation, we thought long and hard about including injection drug use as a component of it. For HRC, that's our core population. But we realized that a huge segment of our society would be left out if we'd added that one component. We ultimately decided against it.
In New York, we had a unique situation, in that Assemblyman Kenneth Zebrowski, who introduced the hepatitis C screening legislation, saw his father pass away from complications related to hepatitis C. His father was of the baby boomer generation, and had had a blood transfusion prior to the time when the blood supply began to be screened for hep C. Unfortunately, he had gotten blood that was tainted with hepatitis C. Because there were no screening laws in place, even though he had access to health care and to primary care physicians, no one ever tested him for hepatitis C. And so, when they finally realized that he had the virus, it was too late.