There Is a Cure for Hepatitis C, If Only Patients Could Access It

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.

New York Gov. Andrew Cuomo plans to fight the spread of hepatitis C using the same strategy that’s worked to curb HIV infections.

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.

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EDITOR’S NOTE: A PREVIOUS VERSION OF THIS ARTICLE MISIDENTIFIED VOCAL-NY.

In Connecticut, Saving Lives Comes With an Unexpected Perk: Saving Money

Across much of the U.S., a person who’s poor, overweight and a candidate for obesity-related diseases might not visit a doctor until they’ve already contracted diabetes — that is, if they can even find a physician who will accept Medicaid, the federal health insurance program aimed at the neediest Americans.
But in Connecticut, they’re doing things differently. There, state employees actually reach out to those at the greatest risk before they’ve exhibited any noticeable symptoms, then work diligently to connect them with the right care. Doctors are paid a bonus for getting a patient to see the appropriate specialists, and out-of-the-box arrangements are made when other solutions prove necessary; a low-income senior facing eviction, for example, might be given a “prescription” of a rental voucher so that she can remain in her own neighborhood.
In treating poverty as an ailment in and of itself, Connecticut has adopted a proactive approach to improving the health of its poorest residents — and it’s saving money in the process. After switching to a rarely used Medicaid payment model, known as fee-for-service (FFS), the state faced a daunting challenge: Keep those unable to pay out of the emergency room, or see its budget eaten up by soaring medical costs.
Here’s how it works: Using the extensive data collected from all Medicaid patients, the state’s predictive modeling identifies those most in danger of expensive, chronic ailments like diabetes. Then, says Dr. Robert Zavoski, a former pediatrician who now serves as the state’s medical director, “We make sure they’re getting preventive care so that, 10 years from now, we’re not paying for dialysis for renal dysfunction and amputations for limbs that would have been better left where they were.”
After Connecticut dropped three private companies who administered its Medicaid program and decided to run the massive entitlement on its own, other states practically took bets on when the system would implode.
“They patted us on the head and said, ‘Good luck with that,’” Kate McEvoy, who oversees all of Connecticut’s public health services, recalls of the 2010 decision.
In booting private insurance companies off the job (in Hartford, a city that’s known as the insurance capital of the world, no less), Connecticut was bucking a trend. Thirty-nine other states, representing nearly three-quarters of the nation’s enrollees, have hired managed-care organizations, or MCOs, to oversee Medicaid, with even more governors pondering following suit. Of the rest, only Alaska and Wyoming have a system like Connecticut’s.
Without relying on MCOs to set standards and manage the process, Connecticut’s been on the hook for whatever care its Medicaid population requires, which can include check-ups, specialist visits and hospital drop-ins. The looming receipts have created an incentive for Connecticut to keep its poor healthy.
The tactic has already paid off in the short term and promises to deliver even bigger dividends in the future.
According to a recent analysis of federal payment data published in the journal Health Affairs, Connecticut led the nation in reducing Medicaid costs. The state’s per-patient spending on Medicaid dropped by an average of 5.7 percent each year between 2010 and 2014. One explanation is simple. “We got rid of [the MCOs’] profit and overhead,” says Ellen Andrews, the head of Connecticut Health Policy Project, a nonpartisan analyst. But officials also believe, financially and morally, they’ll do better by paying upfront.
“The old adage went, ‘If you can predict something, you can prevent it.’ And yet as a practitioner, when we look at the population of inner-city children, a lot of stuff was happening that you could predict but nobody was preventing anything,” Zavoski says. “Standing in the capital city in the richest state in the richest country in the world, that’s not acceptable.”
Under Connecticut’s FFS system, primary care doctors are given bonuses for coordinating their Medicaid patients’ care. “They don’t just say, ‘You have a heart problem.’ They’ll make an appointment with a cardiologist and follow-up,” Andrews says.
Paying out doctor bonuses won’t break the bank, but other preventive measures do involve five-figure decisions. Previously, under managed care, insurers denied coverage of top-dollar treatments — exclusions the state has now reversed. For example, Connecticut will pay $94,500 for a prescription that cures Hepatitis C, with the confidence that it will lower costs in the long run. Zavoski reasons that a one-time course of drugs, paired with education about reinfection, might be cheaper than a lifetime supply of the older pills, which put the patient at risk of severe liver and kidney damage.
Of course, the resources might not always be there. As Connecticut’s legislature faces a massive budget deficit that could slash health programs and congressional Republicans attempt to dismantle Obamacare’s expansion, Medicaid is under constant assault. But if the Nutmeg State has one lesson for the rest of the country, it’s that deferring treatment will cost us later — in dollars and in lives.
Homepage photo courtesy of Joe Raedle/Getty Images.
Continue reading “In Connecticut, Saving Lives Comes With an Unexpected Perk: Saving Money”

The High-Tech Way Foster Youth Are Safeguarding Their Records (And Their Memories, Too)

Florida’s child welfare system shuttled Jay Schad to a new home every of couple months — roughly 25 placements in all. (He lost the exact count.) The most disruptive move sent him to a group home in Tallahassee, two hours east of Panama City, his hometown, and plopped him into a new high school. Already a month behind his classmates, the freshman attempted to make friends by trying out for the football team. But with many of his records back in Panama City, including his latest physical exam, the coaches couldn’t let him take the field. Eventually, Schad got the go-ahead from a local doctor and started playing. But the setback made him feel, as he says, “let down by the system.” Hadn’t the 14-year-old been through enough with his mother’s meth addiction, his father’s violence and dozens of destabilizing moves to have to worry about his personal papers?
Record-keeping, a seemingly bureaucratic task, poses a huge challenge for the nation’s 428,000 foster youth. Already struggling to keep up with their peers, these adolescents might not realize the need to preserve their important documents until it’s too late. Even if a diligent social worker does compile a binder, it might be lost in a hectic move, and in some states, there are extra hurdles for a teen who’s aged out of the system. This means most applications — whether for financial aid, a new job or housing — can be stymied simply because documents are missing.
Cloud-based technology, however, might have an answer for these teens. My JumpVault, a virtual storage locker, allows a foster kid to upload and protect their essential files, like a birth certificate, medical history and school transcripts. Developed by Five Points Technology Group (FPTG), a business headquartered in the Tampa suburb of Bradenton, Fla., and funded by the state, My JumpVault currently has about 7,000 users. The digital records it holds, maintained securely behind several layers of authentication, won’t disappear like hard copies might.
Former foster youth played a large role in building My JumpVault. In 2009, two 19-year-old former foster kids led a statewide campaign to streamline access to Florida’s child welfare records. (Previously, emancipated youth needed a judge’s order to see their case file.) After successfully pushing a bill through the legislature, they started to question what access truly meant. Even though they’d won the legal right to look at their papers, did adolescents truly have access if the process of obtaining a copy was so difficult? That’s when the young men — Thomas Fair, now a member of the design team, and Mike Williams, an assistant product manager — signed on with FPTG to advise the team behind My JumpVault and help code the nascent app.
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Accessible by desktop or smartphone, an email address is all a teen needs to sign up for the service. Once they’ve locked the account with a password, they might log in to scan an important document they’ve just received or to locate an image, like Schad did eight months ago when applying for a waiter job at a restaurant. He’d misplaced his social security card, and his new manager told him he couldn’t clock in until he found it. Schad pulled up his electronic copy, and luckily, the boss accepted it.
To further ease the process, a couple of agencies recently partnered with FPTG to store files directly on My JumpVault’s servers. For example, Sunshine Health, the state’s Medicaid provider, lists a kid’s prior hospital visits and prescription medications. Soon, My JumpVault could integrate with the court system to track hearing dates and with local schools to keep report cards. “Tactically, it frees caseworkers up from having to provide documents over and over again in hard copy, and it puts youth in a better position for independence,” notes Chris Pantaleon, the company’s business development director.
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In addition to vital records, one of My JumpVault’s unique features provides storage space for memories. Because foster children might have only one or two pictures of their birth parents, storing photos is the best way to preserve a sense of self. Without these keepsakes, “You don’t understand who you are,” says Williams, who knows the feeling firsthand. “It’s like having no identity.” That’s why they encourage users to add pictures, certificates and awards. Even if a foster kid is relocated to another home, one whose walls might be covered with family portraits, he can take comfort in his own background and family roots, too.
Another powerful feature, which Fair pushed to include within the app, is a series of guides to help foster youth navigate difficult situations. These worksheets might list the names of all service providers in a metro area, provide instructions on applying for food stamps or explain the types of questions employers ask in an interview.
Schad knows there are plenty of issues still plaguing the foster care system. But at least with My JumpVault’s storage in the cloud, those kids don’t have to worry about whether paperwork might hold them back.

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This article is part of the What’s Possible series produced by NationSwell and Comcast NBCUniversal, which shines a light on changemakers who are creating opportunities to help people and communities thrive in a 21st-century world. These social entrepreneurs and their future-forward ideas represent what’s possible when people come together to create solutions that connect, educate and empower others and move America forward.
 

The Short-Term Benefits of Helping Low-Income Kids Are Apparent. But What About the Long-Term Impact?

Parents often wonder if all the money they pour into their kids will pay off in the end, resulting in productive adults. The federal government could ask the same, considering that it’s provided assistance to children through various programs, including Medicaid, which extended benefits to children back in the 1980s with the formation of the State Children’s Health Insurance Program.
Economist Amanda Kowalski of Yale University decided to find out. Partnering with David W. Brown and Ithai Z. Lurie of the U.S. Treasury Department, she analyzed tax return data and found that giving Medicaid benefits to kids does pay off in the long run. Those who relied on Medicaid as low-income children earned more money and paid more in income taxes when they became adults working than those of a similar income level (during childhood) who did not receive benefits.
Researchers found that, for every Medicaid dollar spent on a child, 14 cents were returned during their first few years as working adults. The amount rose to 56 cents by the time the recipient was 60 years of age. Additionally, they discovered that people who received Medicaid benefits at kids were less likely to die as young adults than people in the non-Medicaid low-income group. Plus, they were more likely to attend college.
The study’s huge sample size of 14.6 million people gives strength to its findings.
“Although it will take years to know the long-term impact of current expansions of Medicaid undertaken as part of the Affordable Care Act,” Kowalski tells the Yale News, “this study shows that the investments that the government made in Medicaid in the 1980s and 1990s are paying off in the form of higher tax payments now.”
MORE: 40 Years Ago, Researchers Sent Half These Children to Preschool. And What an Amazing Difference it Made

Could a National Sales Tax Ease American Inequality?

The U.S. has one of the highest levels of income inequality among the world’s industrialized nations. The imbalance between rich and the poor is a popular political topic — President Barack Obama even focused his State of the Union address on the issue. Michigan State University law professor Reuven S. Avi-Yonah has an idea that he can help: he wants to implement a national sales tax.
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Sure, this idea is probably at the very top of the list for politically unpopular topics, but don’t write Avi-Yonah off just yet. By using the Gini Coefficient, a measure of statistical dispersion that represents income distribution, Avi-Yonah discovered that income inequality in the U.S. is on the rise while social mobility is on the decline, making it one of the most unequal developed economies, while countries like Germany and Japan are more balanced. By comparing the U.S. to these countries, he found a clear difference: the presence of a national sales tax — or, more specifically, a value added tax (VAT). While states levy a sales tax on consumers who purchase goods and services, funds from a national sales tax could go even further.  “One key to reducing inequality in the U.S. is to bolster the social safety net,” Avi-Yonah writes in his report.
But why a national sales tax over other forms of funding? For one, these types of taxes are used in more than 150 countries and have a demonstrated ability to raise revenues. VATs are not income taxes, which are easy for some Americans to avoid and can discourage work. Sales taxes are also paid by all members of society — the old and young, rich and poor. Plus, a sales tax is cheaper to administer than income taxes. Sound like a no-brainer? Well, try getting any new tax past congress.
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This Clinic Is Saving Immigrants’ Lives, No Questions Asked

Being an undocumented immigrant nearly cost Mery Martinez her life. Martinez, 38, was recently diagnosed with leukemia, but because she lacked legal status — and health insurance — she was unable to find consistent treatment to fight the disease. That is, until she relocated from New York to Philadelphia and visited Puentes de Salud, a nonprofit clinic run by volunteer doctors, nurses and med school students. Puentas de Salud, or “bridges of healing”, was created in 2006 for the sole purpose of providing health care to the area’s low-income, undocumented, and uninsured Latino community, Dr. Steve Larson, one of the organization’s cofounders, told the New York Times. The group also pinpoints social determinants of health in the community and focuses on prevention as much as treatment. “It’s not about me writing prescriptions,” Dr. Larson says. “This is an underground health system.”
So far, Puentes de Salud, which operates only two evenings a week, has treated about 3,300 patients. Initial visits to the clinic cost $20. Each follow-up visit costs $10. Since the Affordable Care Act doesn’t provide assistance to illegal immigrants, and this group is generally ineligible for Medicaid, people like Martinez are often forced to either forego medical care or take advantage of inexpensive or free clinics like Puentes de Salud. With a growing need for such operations, Dr. Larson is seeking funding to open a 7,000-square-foot clinic devoted to medical services and health education, so even more immigrants like Martinez can take control of their care.
MORE: Health Reform’s Next Crucial Step: Winning Immigrants’ Trust