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.
"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." -- Geraldine Joseph
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.
"Because HIV is associated with sexuality and drug use, and has been framed as a 'gay' message, many people weren't interested ... 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. " -- Hadiyah Charles
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.
For New York state, that one element in Albany, along with the fact that new medications have the potential to change the trajectory of the virus, and the fact that hepatitis C is killing more people now than HIV, the stars were really aligned for this legislation to pass in both the Assembly and Senate houses in New York. It was also a bipartisan bill; Senator Kemp Hannon, who introduced it on the Senate side, is a Republican, out of Long Island.
New York City and Long Island are the epicenters of hepatitis C in the nation. It's really amazing the way that the New York state legislators came together to promote New York state as a patient-centered state.
There's an entity called the United States Preventive Services Task Force (USPSTF) that informs what insurance companies will reimburse for. They're the entity that kind of changed the recommendations for mammograms, in terms of how often you can get one and how insurers would reimburse for it.
Hepatitis C screening for the baby boomer cohort originally had a C grading from the USPSTF; and when something has a C grading by them, it's going to be really hard for medical professionals to get reimbursed for giving a test to anybody born in that cohort. We developed our bill in order to codify the CDC guidelines; it passed the Senate and House on a Thursday. On the following Monday, the USPSTF changed their rating from a C to a B rating. And so now, you have the CDC and the USPSTF speaking in one voice in terms of the risk categories.
The USPSTF also acknowledged that injection drug users and people who had a history of drug abuse were high-risk populations. So now, if somebody presents to their physician as a baby boomer or a person who is actively using or had a history of using injection drugs, the hepatitis C screening test cost should be covered by health insurance.
Olivia Ford: This is a bit of a devil's advocate question: Hadiyah, just now you mentioned that if physicians follow this law (once the bill is signed into law), this will provide an excellent opportunity for people who wouldn't otherwise be screened for hep C to be screened. We know from the example of routine HIV screening that that's a pretty big if. The CDC has been recommending that HIV testing be offered in primary care since 2006. That's a CDC recommendation, not state legislation, of course; but the uptake has been fairly paltry.
What's the difference here, with this law? Will there be consequences for not adhering to it?
"At most, what we can do at this point is to make sure that \[physicians are\] properly educated and know that it will, in fact, be state law to offer the test." -- Hadiyah Charles
Hadiyah Charles: The Medical Society of the State of New York was in full opposition of this legislation, because they don't believe that you should legislate medical care. There's not enough funding at the New York State Department of Health to really police physicians around this law. At most, what we can do at this point is to make sure that they're properly educated and know that it will, in fact, be state law to offer the test.
In the screening bill, we added an amendment where New York State Department of Health has to evaluate the testing and linkage to care aspect of the law. That's one tool that we implemented within this legislation to really get an idea of whether or not the law is being followed -- and if it is, how well. There is a similar evaluation mandate with the HIV screening bill.
Olivia Ford: Do you have a sense of what hepatitis C advocacy and education look like in other states? What's the potential impact for other states and their health departments, following New York state's landmark bill?
Hadiyah Charles: New York is definitely the first domino that will trigger other states with high hepatitis C prevalence to follow suit. We're currently working on developing a campaign tool kit that will be entitled something like "How to Pass the Hepatitis C Screening Law in Your State." People are definitely reaching out to Harm Reduction Coalition to find ways to pass similar legislation in their state.
It's an ideal situation, when a person finds out they have a condition or a disease, that there'd be good news at the end of that tunnel. Under the ACA, people will have access to medications that are offering an almost 100 percent cure rate. In terms of being promoted as a patient-centered state, I think that hepatitis C advocates across the country will be able to really push legislators in their states to do their part in changing the trajectory of the epidemic.
Olivia Ford: How can medical providers and other members of the community get involved in advocating for the passing of this bill into law, and the passage of similar legislation in other states?
Hadiyah Charles: The Harm Reduction Coalition, in partnership with the National Black Leadership Commission on AIDS (NBLCA), as well as the Coalition on Positive Health Empowerment (C.O.P.E.), launched an inaugural African American Hepatitis C Action Day. It happened last month, on July 25. We gave people the opportunity to learn about hepatitis C, how to prevent it, and the treatment and care options that are currently available. It's specific to African Americans, because, again, we are disproportionately affected by hepatitis C.
We did a series of free testing events in Albany, N.Y.; Atlanta; Buffalo; Detroit; New York City (including East and Central Harlem, Brooklyn and the Bronx); and Rochester, N.Y. We offered educational resources as well. In the Bronx alone, C.O.P.E. tested 82 people, 21 of whom had a positive hepatitis C result.
Thanks to OraSure Technologies, Inc., we were able to leverage new rapid hepatitis C testing technology to ensure that those who tested positive for hepatitis C received their results and were immediately linked to care so that they may benefit from new therapies.
This Action Day was really just a kickoff to what we will be working on throughout the year, leading up to July 25, 2014. There's now considerable hope with hepatitis C screening, care and treatment. We are committed to making sure that everyone, and particularly African Americans, know all that there is to know about hepatitis prevention, treatment and care.
"Hepatitis C is a curable disease. It's not like diabetes or HIV or high blood pressure, where you're going to be on medications for life. We can cure people of this, or even eradicate it. But people actually have to know about the disease." -- Geraldine Joseph
For anybody who is interested in doing more, they could certainly contact the Harm Reduction Coalition, NBLCA, C.O.P.E., NATAP (National AIDS Treatment Advocacy Project), VOCAL-NY or the National Viral Hepatitis Roundtable. We're really working together, along with our federal government partners at the CDC and Health and Human Services, to educate communities about hepatitis C.
Olivia Ford: Geraldine, what would you like to see happen, as far as education for your fellow medical providers about hep C and this new screening law?
Geraldine Joseph: I would like to see some forums focused on primary care providers, especially internists and family practice physicians. They are the ones that are actually seeing a lot of the patients early in their disease, with slightly elevated liver enzymes. A key point is getting people evaluated when they have early disease, and not late disease, where you run into complications like liver damage (cirrhosis), or even end-stage liver disease, which can cause death. When we see patients in more advanced stages of hep C, where it's progressed as far as cirrhosis, it's harder to cure the disease. It'll be important for primary care providers to be educated properly on testing, and referral to the appropriate places for hepatitis C evaluation and treatment.
Hepatitis C is a curable disease. It's not like diabetes or HIV or high blood pressure, where you're going to be on medications for life. We can cure people of this, or even eradicate it. But people actually have to know about the disease.
This transcript has been edited for clarity.
Olivia Ford is the executive editor for TheBody.com and TheBodyPRO.com.