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How Do You Stop a "Silent Epidemic"?

Baby Boomers, African Americans, and Big News in Hepatitis C

August 15, 2013

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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.

Hepatitis C: A Minority Health Disparity in the U.S.

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?

Hepatitis C Action Day 2013

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 and

Copyright © 2013 Remedy Health Media, LLC. All rights reserved.
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