HEP Fall 2019

A SMART+STRONG PUBLICATION FALL 2019 HEPMAG.COM

Let’s Dance

Grooving to life after hep C

David Whiters

Got Ink? An estimated 3–5 million Americans are living with hepatitis C. Most don’t know it.

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FROM THE EDITOR

Just Dance

D

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CONTENTS 3 FROM THE EDITOR Moving to the rhythm of your life after hep C

avid Whiters is a busy guy. At work, he is a behavorial health manager in Atlanta at Someone Cares, an HIV/AIDS, hepatitis C virus (HCV) and substance use treatment agency.

On the first Saturday night of the month, however, Whiters dresses up to go steppin’—an urban dance style similar to swing and disco combined. He’s also involved in the 12-step recovery community and with his church.

Things weren’t always this good for the 61-year-old. He didn’t finish high school because of his heroin addiction.

He tested negative for HIV when he was using but lost a nephew to AIDS. Unfortunately, he did test HCV positive.

After getting sober, he went back to school, eventually earning a PhD in social work. During a clinical trial for a new hep C treatment, he got cured. He has been advocating for people living with HCV—and dancing—ever since. Go to page 8 to read more about Whiters.

Not only did Whiters overcome HCV, he experienced no side effects from his treatment. Older hep C treatments were often difficult for people to tolerate, especially because of the side effects.

The new HCV treatments are also faster. It used to take six to 12 months to get cured with older drugs. Now it takes just two or three. The major issue these days with hep C isn’t the treatment itself but getting access to it because of high drug costs and lack of insurance coverage.

Advocates are fighting every day to get HCV cures to everyone who needs them.

Among the many folks who could benefit from access to hep C treatment are people who inject drugs. Whiters

and countless others contracted HCV through the use of shared needles.

A new study shows that people who inject drugs adhere better to their hep C therapy if they receive directly observed treatment compared with being given direct-acting antiviral medication to take on their own. Go to page 7 for more.

Among efforts to prevent HCV transmission, needle exchanges for people who inject drugs have been shown to be effective. Nonetheless, many jurisdictions have resisted introducing needle exchanges for political reasons. In a major win for health advocates, Florida has allowed them. Go to page 4 to learn why.

A promising HCV prevention intervention is safe injection sites. People who inject drugs would access sterile syringes and receive medical support while they inject at these sites. A new study shows people would use these sites if available. Go to page 4 for more.

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4 NEWS Needle exchange goes statewide in Florida • willingness to use safe injection sites in the United States • fatty liver disease crisis in Appalachia • U.S. renews support of hep E research

6 CARE & TREATMENT Curing hep C lowers death risk • hep C linked to coronary artery disease • supporting people who inject drugs • exercise lowers risk of death from cirrhosis

8 PROFILE Health advocate David Whiters has mastered some smooth moves since overcoming addiction and hep C.

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NEWS

Needle Exchange Goes Statewide in Florida In an effort to ease the local opioid crisis and resulting health issues, Florida is the latest red state to pass a law permitting needle exchanges.

Republican Governor Ron DeSantis signed Senate Bill 366, which was sponsored by Democratic legislators Senator Oscar Braynon and Representatives Shevrin Jones and Rene Plasencia. The bill received near-unanimous support in the House and unanimous support in the Senate. The law went into effect July 1.

Formally known as the Infectious Disease Elimination Act (IDEA), the law expands the IDEA Exchange program already in place in Miami-Dade County, until now the only legal needle exchange program in the state. The program also offers HIV and hep C testing and connects clients to care.

The new law permits the creation of mobile health clinics where injection drug users can exchange dirty needles for clean ones.

HIV, hepatitis C virus and other blood-borne pathogens can be spread through the sharing of needles. By providing clean needles to people who inject drugs, needle exchanges

reduce the rates of viral infections and remove dirty needles from the streets. Such programs have been legal in states across the country for decades, but until recently, they were mostly forbidden in the Republican South.

That’s because conservative lawmakers feared that the programs would promote drug use. But after seeing the impact of the IDEA Exchange program in Miami-Dade County, many have warmed to needle exchanges. IDEA has pulled more than a quarter of a million used needles out of circulation and, through the distribution of the opioidreversal agent Narcan, prevented more than 1,000 overdose deaths since it was established in 2016.

A study on safe consumption spaces has found that a majority of people who inject drugs not only support but also would be willing to use such harm reduction facilities if opened up across the country.

Published in the Journal of Urban Health, the study surveyed opioid users in Baltimore, Boston and Providence about their views on safe injection sites— where people who use heroin, fentanyl and other drugs can access sterile syringes and medical support while they inject.

Such sanctioned venues are not yet legal in the United States but have been set up and evaluated in countries such as Canada and Australia, where studies have shown that they help significantly reduce the risk of HIV, hepatitis C virus (HCV) and hepatitis B virus (HBV) transmission as well as cut down on overdoses and public drug use.

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The study found that 77% of participants reported a willingness to use safe consumption spaces. Willingness to use these sites among people who relied on public spaces—such as streets, parks and abandoned buildings—to use drugs was even higher, at 84%.

“This is important because the voices of people who use drugs are not always included in policy debates or in the implementation of public health inter ventions,” says lead study author Ju Nyeong Park, PhD, MHS, an assistant scientist in the Department of Health, Behavior and Society at the Johns Hopkins Bloomberg School of Public Health.

Researchers say the willingness of opioid users to use safe injection sites suggests that such facilities would provide a safer and more viable alternative for them to using drugs on the streets.

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Willingness to Use U.S. Safe Injection Sites

Fatty Liver Disease Crisis in Appalachia More than 30% of people in Appalachia are obese, and the proportion of people affected is on the rise.

In addition to contributing to health risks such as heart disease, diabetes, high blood pressure and certain cancers, obesity is driving a spike in non-alcoholic fatty liver disease (NAFLD).

According to reports from hospitals in West Virginia, Kentucky and Ohio, between 56% and 60% of patients are at risk for NAFLD, more than twice the national average.

That represents more than 130,000 individuals across the region, and health workers say almost none of them are aware of the risk.

Liver disease researchers also fear that hospitals across Appalachia do not have the capacity to handle the growing liver disease epidemic. Their biggest fears revolve around nonalcoholic steatohepatitis (NASH), the advanced stage of NAFLD that can lead to life-threatening conditions, including cirrhosis, liver cancer, liver failure and the need for a liver transplant.

A liver transplant is the single most expensive surgical operation in the United States, costing on average between $600,000 and $1 million per patient.

The procedure requires nearly six months of aftercare, a steady supply of donated organs, hightech operating rooms and massive quantities of blood for transfusion.

Local doctors say many area hospitals lack the technology and care capabilities to handle a potential influx of new NASH transplant patients, meaning many patients would need to be transferred elsewhere to receive proper care.

U.S. Renews Support of Hep E Research The National Institutes of Health (NIH) has renewed a five-year $2 million grant for the study of hepatitis E virus (HEV), an understudied and sometimes fatal liver disease that can pass from animals to humans.

Researchers at the VirginiaMaryland College of Veterinary Medicine have for decades sought to better understand the risks and treatments for HEV. Though significantly less common than hepatitis B virus (HBV) and hepatitis C virus (HCV), 20 million people worldwide contract HEV annually, which causes more than 44,000 deaths per year.

Hep E, which is most prevalent in low-income and developing countries, has garnered attention in recent years for two major reasons: 1) It’s gaining prevalence among immunocompromised people around the world; and 2) the incredibly high mortality rate

(up to 25%) among pregnant women with the virus.

Researchers don’t know why the virus is so deadly in expectant women. However, they had already discovered that the virus could be passed on to humans by pigs, chickens and a dozen other animals that have been identified as reservoirs for the virus. These findings alone had intensified public health concerns about the potential for future foodborne and zootonic (animal-tohuman) infections.

In 2007, researchers discovered that nearly 11% of pig livers sold in the United States tested HEV positive, meaning they could infect humans if served undercooked.

Since then, researchers have helped design more effective strategies for preventing cross-species hep E infection while seeking to better understand the genetics of the virus.

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CARE & TREATMENT

BY BENJAMIN RYAN

Hep C Linked to Coronary Artery Disease

Curing Hep C Lowers Death Risk Curing hepatitis C virus (HCV) with direct-acting antivirals (DAAs) is associated with a lower risk of death from both liver-related and non-liver-related causes.

Italian researchers examined data on nearly 5,000 people in Sicily who were treated for HCV with DAAs and then followed for a median of 65 weeks. Of these, 24% did not have cirrhosis, 68% had compensated cirrhosis (the less severe form of the advanced liver disease) and 9% had decompensated cirrhosis (the more severe form).

More than 90% of the cohort members achieved a sustained virologic response 12 weeks after completing therapy (SVR, considered a cure).

Following treatment, 53 participants (1.1%) died, 23 of them of liver-related causes and 30 of other causes, including cardiovascular disease and sepsis.

Compared with those who were cured of hep C, those who were not cured were 29 times more likely to die of any cause, including 42 times more likely to die of liver-related causes and 15 times more likely to die of other causes. Those with decompensated cirrhosis were 30 times more likely to die of liver-related causes and three times more likely to die of non-liver-related causes than those without this condition.

A higher body mass index and diabetes were each associated with a higher risk of non-liver-related death. “An interesting finding that deserves further investigation was a reduced risk of cardiovascular mortality for patients achieving SVR,� notes the study’s lead author, Vincenza Calvaruso, MD, PhD, of the University of Palermo in Italy.

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Hepatitis C virus (HCV) is associated with a higher risk of coronary artery disease, in which blood vessels that supply the heart muscle get narrowed or blocked, typically by plaque buildup.

Chinese investigators conducted a meta-analysis of 14 studies assessing the link between HCV and coronary artery disease. They found that having hep C, compared with the absence of the virus, was associated with a 25% increase in the risk of coronary artery disease.

The study authors also narrowed their analysis to exclude the cohort studies that were either retrospective (the researchers looked back at an earlier cohort of people) or prospective (the cohort was followed forward over time).

This left five case-control studies (observational studies in which people with the disease and those without are compared to search for factors associated with that disease) and one crosssectional study (the participants were studied only at one time point). These two types of studies are considered to be in the middle of the hierarchy of study design in terms of the strength of evidence supporting their conclusions.

In the combined six studies, HCV was associated with a 94% increased risk of coronary artery disease.

However, treating hep C is associated with a reduced risk of cardiovascular disease overall, according to another recent study.

Supporting People Who Inject Drugs People who inject drugs adhere better to their hepatitis C virus (HCV) therapy if they receive directly observed treatment compared with being given directacting antiviral medication to take on their own.

Researchers conducted a randomized controlled trial at three medication-assisted treatment programs for those with opioid use disorder in New York City. One hundred fifty participants were randomized into three study arms and received directly observed hep C therapy, treatment as a group or treatment to take on their own.

About two out of three of the participants had used drugs during the previous six months, and almost half used opioids or cocaine. Three quarters of the study members reported a history of injection drug use.

Those in the directly observed therapy group took an average of

86% of their HCV medication doses, compared with 75% of those in the self-administered individual treatment group. This difference was statistically significant, meaning it is unlikely to have been driven by chance.

Those in the group-treatment arm had an average adherence rate of 80%, which was not significantly different from that of the selfadministered treatment group.

Overall, 94% of the study members were cured of HCV. There was no difference in the cure rate based on the study group or other participant characteristics.

Noting that research has not clarified the optimal level of adherence to hep C treatment that best predicts whether someone will be cured, the study authors called for a larger study that might definitively conclude whether these three ways of delivering therapy for the virus

are truly the same in terms of cure outcomes.

“Our study supports the treatment of HCV in people who are currently injecting drugs,” says the study’s lead author, Alain H. Litwin, MD, MPH, an internist at Prisma Health in Greenville, South Carolina. “In order to move toward the World Health Organization HCV elimination goals, we should urgently treat HCV in people who inject drugs.”

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Exercise Lowers Risk of Death From Cirrhosis People who routinely walk and engage in strength training have a lower risk of death from cirrhosis than sedentary individuals. This is according to the first study to follow participants over a prolonged period of time to compare their physical activity with their rate of death from cirrhosis. Fatty liver disease, which is associated with obesity and a lack of physical activity, is a growing cause of cirrhosis.

Researchers followed some 68,500 women and 49,000 men who began the study without a diagnosis of liver disease. Then, every two years between 1986 and 2012, the participants provided detailed accounts of their exercise habits, including the type and intensity of physical activity.

The participants in the top quintile of weekly walking distance had a 73%

lower risk of cirrhosis-related death compared with those in the bottom quintile. This risk reduction was even more pronounced when the researchers looked at the combination of walking and weight training.

“In the U.S., mortality due to cirrhosis is increasing dramatically, with rates expected to triple by the year 2030. In the face of this alarming trend, information on modifiable risk factors that might prevent liver disease is needed,” says Tracey Simon, MD, the lead researcher of the study and an instructor of medicine at Harvard Medical School and Massachusetts General Hospital in Boston. “Our findings support further research to define the optimal type and intensity of physical activity to prevent adverse outcomes in patients at risk for cirrhosis.”

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PROFILE

David Whiters enjoys steppin’—a dance style that combines swing and disco.

Dance to the Music Health advocate David Whiters has mastered some smooth moves since overcoming addiction and hep C.

By Tim Murphy Photography by Stephanie Eley

D

avid Njabulo Whiters, PhD, not only loves

stepping up to talk about life after hepatitis C, he also loves steppin’—the Chicago-derived urban Black dance style that’s a bit like swing and disco dancing combined.

“It’s a fairly difficult dance to learn, but I love it,” says Whiters, 61, a behavioral health manager at the HIV/AIDS,

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hep C and substance treatment agency Someone Cares Atlanta. The first Saturday night of the month, he says, “I’ll put on linen slacks, a short-sleeved shirt and some dress shoes. Blue is my favorite color. And I do have a white suit.”

He’s also involved in the 12-step recovery community and with his church, so all around he’s a busy guy with a thriving life.

But things weren’t always so good. Raised in Pontiac, Michigan, Whiters didn’t finish high school because he was deep into heroin, as were many in his family and neighborhood. He bounced around the country between relatives in Michigan, Atlanta and Oakland, California, often using drugs with a nephew his age who was his best friend. Then one day, that nephew was arrested.

“That was my wake-up call,” says Whiters. “The next day, I went to a 12-step meeting, an all-white meeting that I later figured out was a gay meeting. I shared for what must have been an eternity. Later, two guys came up to me holding hands. At this time, I was your classic homophobe, but they hugged me and told me that I might feel more comfortable going [to a meeting with more straight and Black people].

That’s where recovery really started for me.”

But then, in 1991, his beloved nephew was lost to AIDS.

Whiters was devastated. He also remembered that as far back as 1976, when he, too, was injecting drugs, a doctor had told him he had the symptoms of hepatitis. Thankfully, he had tested negative for HIV on several occasions. After getting sober, he earned his GED and then his bachelor’s and master’s degrees in social work. He also worked at Morehouse School of Medicine in Atlanta, where he recruited students to consider careers in substance use treatment.

He liked his work, but as the ’90s wore on, he increasingly suffered from fatigue and joint pain. “I dragged myself through work, then came home and got ready for bed,” he says. He took the test for hepatitis C virus (HCV), which had become available in the 1990s, and learned he was HCV positive. “I thought, Damn, David, you got clean, got a degree and now you’re about to die.” He was offered interferon, “but I’d heard enough people talk about how bad the side effects were that I said I’d die before taking it.”

He also told nobody about his hep C. “I didn’t have the courage,” he says.

would treat me like a leper. I realize now I was a hypocrite, because in my job I would convince people to become spokespeople for living with HIV.” The reaction to his post was “mind-blowing,” he says. “I had people from as far away as East Africa and Europe asking how to get the medication.” Then Gilead, the maker of Sovaldi, expanded its trials, the sign-up number for which Whiters put up on Facebook. “My girlfriend left me because of that,” he says. “She was embarrassed that I posted all my business.”

On the brighter side, people nationwide signed up for the study—and were cleared of their HCV. “Less than a year ago, I was in Charlotte, North Carolina, and a woman walked up to me and said, ‘You don’t know who I am, but I’m alive because of you,’” he says. “Same thing happened with a guy in Philly.” He even called an old drug buddy with whom he’d had a bitter falling-out and told him about the trial. The buddy, too, cleared the virus “and walked up to me next time I saw him and hugged me.”

Suddenly, he was talking about the new treatments at

recovery conferences. “Audiences full of brothers and sisters who’d been living with hep C for years and not telling anyone,” he says, “including a woman who said she’d had a hard time accessing the drug.” Whiters helped her cut through the red tape. “She called me and said, ‘Guess what? I’m on it.’” Both in and out of his job, “I’m the hep C spokesperson in Atlanta now,” he says, laughing.

He admits it’s sometimes hard to get people to consider treatment— especially African Americans with a long history of distrust of the medical establishment because of such incidents as the infamous 1930s to 1970s Tuskegee experiments, in which researchers withheld syphilis treatment from Black men in order to study the disease’s progression.

“There’s still a lot of paranoia,” he says. “I let folks know I’ve had those same concerns but also let them know I’m one of many who were tired and in pain all the time but aren’t anymore since doing the treatment.”

Meanwhile, Whiters remains plenty busy with his work—and, of course, his steppin’. “I just came off a sevenday Caribbean cruise where I danced two to three times a day for seven days straight.” The trip was the refresher he needed as he carries on his hep C advocacy, which he sees as “paying forward” the gift of his own cure. “To whom much is given, much is required,” he says, paraphrasing Luke 12:48. “This work makes me feel good inside. I think of how proud my nephew would be of me.”

And on top of it all? He’s now a doctor, having earned his PhD in social work from the University of Georgia in 2010.

“Every time I hear that, I laugh,” he says. “I used to be a drug addict, and now I’m a doctor!” ■

“I did what I thought was the right thing to do.”

Then, in 2007, he read an article about impending new

HCV drugs. His primary doctor sent him to a gastroenterologist, Shirley Harris, MD, who told him he’d have better options if he could sit tight for about five more years but still suggested he start interferon. He refused.

A year later, Harris called, alerting him to a clinical trial combining ribavirin with an investigational drug, sofosbuvir, which later became Sovaldi. He joined the trial in 2012. “I had zero side effects,” he says. “Not a single one.” Better yet, after a week, he learned that his hep C viral load had plunged from 6 million to less than 100. After 12 weeks, he was declared cured.

Full of gratitude and wonder, “I did what I thought was the right thing,” he says. “I posted my story on Facebook. I’d never told anyone I had hep C before. I was afraid people

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