Jackie Johnson never considered himself a risk-taker. In fact, he says, he had a pretty normal existence working as a manager of a Taco Bell in Dallas.
“My life was nothing crazy,” Johnson, 42, tells NationSwell. So it was an unexpected and devastating blow when he received a double-whammy diagnosis of HIV and the hepatitis C virus, or HCV, 12 years ago. “I was confused for three months. I tried to stay optimistic, but your body just goes through denial.”
Johnson can trace his transmission to one of two events: getting tattooed with a possibly unsterilized needle in 2006, or a sexual assault that happened around the same time. But no matter the method of infection, he was well aware that he was carrying two viruses that, at the time, were completely incurable.
There are thousands of cases like Johnson’s each year, where HIV transmission coincides with contracting hepatitis C. In the past decade, HCV has become a national health problem, with the Centers for Disease Control estimating that the number of new infections increased nearly threefold between 2010 and 2015. Much of the rise has been attributed to increased intravenous opioid use.
But in the past four years, new drugs that can cure most cases of HCV have become available. The problem: Many people in need of the cure — which can cost thousands of dollars — are the same people who depend on Medicaid, which has rolled back HCV treatments nationwide. And in addition, reaching the population most at risk for spreading HCV is a task that continues to elude health officials.
But in New York, a new plan that has shown success in an earlier incarnation is taking hold. If it works, it might just pave the way for other states looking to curb the rise of HCV infections.
AN ‘AMBITIOUS’ VIRUS
Hepatitis C is different than other viruses. Whereas most die when they make contact with the air, HCV is — by one health advocate’s description — “ambitious.”
“In theory you can get hepatitis C from sharing toothbrushes or razors — anywhere where blood-to-blood contact is possible,” says Clifton Garmon, senior policy analyst for VOCAL-NY, an advocacy group for those living with HIV and HCV. “As long as you have blood in your body, you’re at risk.”
What’s more, experts estimate that of the roughly 3.5 million Americans living with HCV, more than half of them don’t even know they’re infected. Those who do have symptoms may experience fatigue, jaundice, nausea or dark urine. In either case, if left untreated HCV can eventually result in liver failure or even death.
In New York State, the rate of people diagnosed with acute HCV more than doubled between 2011 and 2013, according to annual reports. In 2016, the total number of infections again jumped, from 14,000 to nearly 19,000 cases.
While HCV rates were rising in New York, Gilead Pharmaceuticals developed and patented the first known drug that can eradicate the virus. Called Harvoni, the drug debuted in 2014 with a hefty price-tag; one treatment cost around $60,000, a figure that initially led many states to decline to offer it.
With generic drugs hitting the market in the years since, costs have dropped significantly, though many states still restrict access to them. Until recently North Carolina, for example, only offered treatment if a patient developed stage two liver damage as a result of HCV.
But even with a more affordable cure available, people who need the treatment often aren’t getting it, and that’s due to a lack of education, say advocates and organizations working to close the gap.
“The primary issue is finding people who have hep C,” says Terry Leach, head of pharmaceuticals for Amida Care, a nonprofit insurer in New York City, adding that drug users who shoot up are a tricky population to reach. “You can never quite track them down, and they’re never quite engaged in care. You may have somebody who gets identified with hep C and knows it, but they don’t follow up with their therapy.”
As a solution, the New York health department has modeled an educational campaign after a similar one that helped stem the tide of another virus that was once out of control: HIV.
USING A VIRUS TO FIGHT A VIRUS
Only a few years ago, New York health officials faced the daunting task of dramatically reducing HIV cases. At one point, the state had the highest rate of infections in all of the Northeast (the South, for decades, has been and continues to be the hardest hit). A task force was put together in 2014 with the goal of reducing the spread of HIV, particularly in vulnerable communities.
Last year, for the second year in a row, the state reported that the number of new infections of HIV had dipped, putting the Ending the Epidemic initiative closer to its target of no more than 750 new cases by 2020.
Much of that downturn, health experts say, is due to increased awareness and usage of pre-exposure prophylaxis, or PrEP, preventative medication that reduces the chances of HIV transmission by up to 99 percent. New York was one of the first states to allow Medicaid recipients at most risk — including gay men and men who have sex with other men — to take the drug Truvada.
Simultaneously, subway and bus ads started appearing in neighborhoods with the highest rate of HIV infections — the same New York City neighborhoods, in fact, that also tend to be the most affected by HCV.
Just last month, New York Gov. Andrew Cuomo announced increased funding that will expand the Ending the Epidemic campaign to include HCV prevention and treatment — the first state-level plan of its kind. In addition, New York also is expanding the promotion of its Good Samaritan Law, which allows drug users who need help to call emergency assistance without fear of arrest.
For Leach, of Amida Care, using New York’s HIV-education initiative as a primer for combating HCV makes sense. Most of the nonprofit’s patients are living with both HIV and HCV, and its program has been able to tackle one virus through education and treatment of the other. By providing the drug Harvoni and similar medications, Amida Care has eradicated HCV in 95 percent of its patients, he says.
“Our treatment paradigm for HIV sets the stage for hep C,” he says. “If you follow that treatment regimen, it fits nicely.”
Amida Care finds those most at risk through outreach and word of mouth. Treatment first tackles a patient’s HIV infection by lowering their viral load to an undetectable level, which means they’re unable to spread the virus. Then, the focus turns to treating a concurrent HCV infection.
It’s the same way Amida Care approached working with Johnson, who went there after moving from Dallas to New York five years ago.
“I was skeptical,” Johnson says, adding that he had been through injection treatments that weren’t effective in curing his HCV, and instead had rough side effects including nausea and aches and pains. “But before I even started, they gave me as much knowledge as needed to make me comfortable with [HCV] treatment. And it was something that was simple to do.”
Johnson, who now resides in The Bronx, was cured of HCV two years ago. He says that now, thanks to treatment, he’s closer to his former, normal self.