HEP Spring 2012

SPECIAL SUPPLEMENT ON HIV/HCV COINFECTION A SMART+STRONG PUBLICATION WINTER/SPRING 2012 HEPMAG.COM

YOUR GUIDE TO HEPATITIS

Wayne Starks

C is for Courage

Determination and resolve can lead to better health for those living with HIV and hep C.

CONTENTS 2 FROM THE EDITOR 3 LOVE YOUR LIVER 4 OVERCOMING ADVERSITY 5 MANAGING HIV AND HCV ON THE INSIDE PRISON POINTERS 6 DOUBLE TROUBLE 7 LET’S TALK ABOUT SEX NEEDLE KNOWS 8 TIME FOR TREATMENT? 10 MR. COINFECTION 11 RESOURCES 12 SURVIVOR’S INSTINCT TRANSPLANT TRENDS

The fight against chronic hepatitis C virus (HCV) has reached a long-awaited turning point. Similar to the arrival of lifesaving protease inhibitors for the treatment of HIV in the mid-1990s, the debut of drugs that cripple HCV’s protease enzyme has ushered in a great deal of hope for people living with the liver-damaging disease—including those coinfected with HIV. The arrival and ongoing exploration of HCV protease inhibitors and other drugs couldn’t be happening at a more critical time. The reason? Chronic hepatitis C affects roughly 3.9 million people in the United States, including about 300,000 of the 1.2 million U.S. residents living with HIV. It is also a leading cause of death among people living with HIV, both nationally and globally.

Making matters worse, people coinfected with both viruses are less likely to be treated, or cured, than those who only have hep C. Many health care providers are reluctant to treat the “complex” cases of coinfected people. Their reasons include the fact that people living with both HIV and HCV are more likely to have advanced liver disease (which can be harder to treat), that they are less likely to respond to hep C treatment, and that they have higher rates of other medical and mental-illness problems (which can make the side effects of hep C treatment even more severe).

But the good news continues to arrive as well. Though not yet officially approved for coinfected people, the newest protease inhibitors are expected to increase hep C cure rates in people living with HIV, just as they have in people only infected with HCV. What’s more, the research pipeline is filled with new drugs that, like the protease inhibitors, were designed specifically to target HCV. Some may prove so formidable in combination that they’ll do away with the need for the toxic, only moderately effective duo of pegylated interferon and ribavirin that’s been the standard treatment for hep C. For people coinfected with HIV and HCV, much remains to be learned about these new HCV drugs, specifically about their safety, efficacy and, just as important, their interactions with meds used to treat HIV—thus far, only a small handful of meds have been suggested to be safe to use with HCV protease inhibitors.

But activists such as Jules Levin (see page 10) are pushing for the necessary studies, and researchers and pharmaceutical companies are starting to answer these important questions about coinfection.

With fresh tools to fight HCV, the future looks particularly bright. It won’t be long before the high rates of liver failure and cancer, like those of AIDS-related illnesses in the pre-protease inhibitor era, become a thing of the past for people living with HIV and HCV. TIM HORN EDITOR-IN-CHIEF HEPMAG.COM FACEBOOK.COM/HEPMAG TWITTER.COM/HEPATITISMAG

WITH THE EDITORS OF POZ MAGAZINE

Published by Smart + Strong, publishers of Hep and Hepmag.com.

Copyright © 2012 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored or transmitted in any form by any means, electronic, mechanical, photocopying, recording or otherwise, without the written permission of the publisher.

Send feedback to HEP SPECIAL EDITION c/o Smart + Strong, 462 Seventh Ave., 19th Floor, New York, NY 10018. Tel: 212.242.2163.

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Editor-in-Chief: Tim Horn Managing Editor: Jennifer Morton Senior Editor: Laura Whitehorn Copy Editor: Trenton Straube Researcher: Kenny Miles Art Director: Steve Morrison Production Manager: Michael Halliday

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SMART + STRONG President: Ian E. Anderson EVP and Publisher: Megan Strub Editorial Director: Regan Hofmann Integrated Advertising Coordinator: Ross Zuckerman

(COVER) KARL SIMONE; (HORN) KEVIN MCDERMOTT

FROM THE EDITOR

L VE YOUR LIVER THIS VITAL ORGAN WORKS HARD FOR YOU. HERE’S HOW.

ISTOCKPHOTO.COM/YEVGEN DELYAMURE

LIVING (AND WORKING) LARGE The liver is your body’s biggest internal organ, reflecting its giant job as all-purpose filter. Tucked under the lower right side of the rib cage, it is a spongy mass of tissue that metabolizes, or processes, everything you eat, drink, breathe and inject. Carried there by the blood, all kinds of substances—from nutrients in food to HIV drugs to heroin and hooch—get broken down into wealth (used by the body) or waste (eliminated as urine, sweat, etc.).

BUSY BODY The liver works overtime making bile (to aid digestion), immune agents (to fight infection), proteins (to build muscle) and clotting factor (to stop bleeding). The organ even stores up energy and has an awesome ability to regenerate. It can do this even when two thirds is removed, allowing for transplants and second chances.

LOWDOWN HIJACKER Into this finely tuned multitasking system crashes the hepatitis C virus (HCV), targeting the very liver cells—called hepatocytes—responsible for all the heavy work. Super sneaky C slips its own genetic mojo into the cell, so that when the

infected hepatocyte reproduces, it will also birth the virus. No wonder the liver gets inflamed—that freeloading trick would enrage anyone.

SCAR-Y NEWS In the months after they become infected with HCV, roughly 20 percent of people who also have HIV will clear hepatitis without treatment. The other 80 percent will go on to develop chronic hep C, though 20 percent of them may not have any problems at all (but they can still pass the virus to others). For the rest, hep C—if left untreated—will progress, damaging the liver slowly but surely over the coming decades. The damage can advance through four stages. First is inflammation: The liver gets swollen, even painful. Next up, fibrosis: Scar tissue forms over the inf lamed cells.

Then, possibly, cirrhosis, when knots of scar tissue block the flow of blood between cells and compromise the liver’s structure and function. Last and worst is either liver failure or cancer.

THE HIV ANGLE HIV targets the immune system, leaving the liver to hep C and other viral villains.

So why is coinfection double trouble for the organ? Because HIV causes hep C infection to progress faster—one more good reason to take the meds that keep your HIV viral load low and your CD4 cells high. But beware of coinfection’s catch-22: You need HIV meds, but certain ones can stress your liver—and push an HCV-infected organ over the edge. That’s why it’s important to pick the kindest, gentlest meds and test your liver during treatment.

TRAFFIC JAM Mixing meds can make a mess, which is a special concern if you’re using HIV drugs and your doc wants to prescribe one of the new meds for hep C: Victrelis or Incivek. These drugs and many HIV treatments compete for the same processing pathway. This can cause too much of a drug to build up in the blood (producing side effects and toxicity) or too little of the drug to get through (causing resistance or lower efficacy). Treating HIV and hep C calls for the right balance—make sure your doc double-checks the meds you’ve been prescribed and, if necessary, switches your HIV meds to ensure magical matches.

—Cindra Feuer

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Visit hepmag.com to read more of Wayne Starks’ story.

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KARL SIMONE

OVERCOMING ADVERSITY

For Wayne Starks, 51, a former New York City bus driver, overcoming addiction and staying sober have been central to his fight to be healthy while living with both HIV and hepatitis C virus (HCV). “I wouldn’t have survived if I had kept using drugs and alcohol,” Starks says.

When he was diagnosed with HIV in 1986, though, his doctors didn’t think Starks, who has two children, would live long. That grim outlook made curbing his addictions harder.

Starks started HIV meds in the early 1990s but returned to using drugs and drink on and off for over a decade, grabbing the quick fix to temporarily forget his problems in times of tragedy. Then in 2000, when Starks learned he also had hep C, he committed to sobriety.

Today, as a board member for VOCAL-NY (formerly New York City AIDS Housing Network), a group advocating for the rights of HIVpositive people, Starks draws on his years of living on the streets and in HIV/AIDS Services Administration (HASA) housing. “I know what it is to be homeless,” Starks says.

Where you live can influence your health for better or worse, and drug-free housing is definitely for better. After cycling through several drug-infested housing complexes—smoky hallways in one gave him asthma attacks—Starks has found permanent scatter-site housing that helps him put his health first, take his HIV meds on time, make doctor’s appointments and get enough rest.

Starks wasn’t surprised to learn he had hepatitis C—several of his friends had it too. He points out the danger of so many HCV cases remaining undiagnosed: “People are living with hep C for years and don’t even know they have it. They’re drinking and using drugs. Little do they know it’s eating up their liver slowly but surely.” You can’t make informed decisions about your health, Starks says, without a full picture of your diagnosis—especially when considering giving up alcohol.

People also tend to make bad decisions if they’re told their outlook is hopeless, so Starks works to spread optimism and encouragement. “If you have HIV, if you have hep C, there’s treatment out there for you,” Starks tells people in his work for VOCAL. An HIV or HCV diagnosis is not a condemnation, he says, but a chance for a better, healthier way of life.

HCV regimens don’t work well in African Americans with genotype 1 HCV—a situation that applies to Starks—so he put off considering treatment. But in 2006 his doctor told him his liver enzymes were high, and Starks gathered the courage for a liver biopsy. Instead of another grim medical assessment, he was told his liver was stable. This allowed him to postpone HCV treatment for at least another five years, when drugs with greater success rates in black patients might be available.

Anticipating his next appointment with the specialist, Starks says he’s comforted that some such drugs recently arrived, with others on their way.

Meanwhile, with the support of his family and a 12-step program, Starks is now 11 years sober and enjoying his role as a father and grandfather. He eats nutritious meals, drinks lots of water and has checkups with his primary care doctor every two to three months. His HIV viral load is undetectable, but his advocacy by example can be detected—loud, clear and courageous.

—Reed Vreeland

MANAGING HIV AND HCV ON THE INSIDE Hep C cases behind bars outstrip those on the street by almost 10 to 1, and in a recent survey, 23 percent to 41 percent of prisoners in the United States had hepatitis C virus (HCV). Within the walls, the chance of being coinfected with HIV and HCV can also be much higher than outside the walls. So if you have both HIV and HCV, you’re far from alone.

If you are lucky, your prison follows proper guidelines for HIV and hep C testing and treatment, with a sympathetic, knowledgeable medical staff. But many don’t: Only 24 states test prisoners for HIV, and hep C screening is even spottier.

Because people living with HIV more often have hep C than people who are HIV negative, for once, HIV could give you an advantage. As Frederick Altice, PhD, of Yale School of Medicine, says,

“Generally, I think, prisoners known to be HIV positive—but not others—are screened for HCV.” That might not be true where you are though. If you’ve tested positive for HIV, make sure you’ve had an HCV test too. If not, ask for it: Federal health agencies recommend HCV screening for prisoners.

Then there’s treatment. Altice and others say most states don’t offer access to HCV treatment in prison. “Cost— especially for the newer drugs—is a major factor,” adds Josiah Rich, MD, professor of medicine at Brown Medical School in Rhode Island. Cost makes many prisons reluctant even to test for HCV, Rich says.

What’s a C-sick prisoner to do? Become your own advocate. Learn about hepatitis C and HIV, and take steps to preserve your health. —Laura Whitehorn

PRISON POINTERS

KNOW THE GUIDELINES The Federal Bureau of Prisons and many state systems have guidelines on HIV and HCV. Ask your counselor, medical staff or prison law librarian for them. Or have an outside friend print them from the Internet (some are available at hcvinprison.org/treatment-guidelines).

Learn about monitoring and treating hep C (see “Double Trouble,” page 6) so you can discuss your care with the doc.

BE YOUR OWN HEALTH TEAM Be wise: Promote liver health by drinking more water, exercising and eating less fat. Avoid hootch, cigarettes and drugs, including other people’s meds.

Tat not: Prison tattoos can spell trouble—with a capital C. Free world tat parlors are regulated, with sterilizing equipment and disposable needles. In the joint, those precautions aren’t available, and bleach (if you can get it) won’t do. Reused ink can spread HCV too.

Use your own: Don’t share razors, toothbrushes, nail or hair clippers or— above all—needles and rigs. If you mess around, be safe. If you can’t be safe, don’t mess around.

Pester the tester: If you haven’t been tested for hep C (or HIV), ask. You may have to file grievances to get results.

GETTY IMAGES/BILL FRITSCH

Follow through: If you have hep C, the next step is getting liver tests to see whether you need treatment.

Exert viral control: Take your HIV meds to stay healthy and help you manage coinfections like hep C. Getting hep C treatment? Make sure you take all those meds too. Ask the medical staff for help managing any side effects. Discuss possible drug interactions, especially if you can get the newest HCV meds.

Behind bars? Stay healthy, even with HIV and hep C.

Know the staff: Learn the names of medical personnel so you can address queries and complaints appropriately.

Be patient and polite while being —LW persistent.

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DOUBLE TROUBLE A SECOND VIRUS CONFRONTS PEOPLE LIVING WITH HIV.

In the crisis days of AIDS, opportunistic infections posed the greatest threat to HIV-positive people. Today, potent HIV regimens can deliver undetectable viral loads and robust CD4 counts, dramatically extending life spans of those with access to treatment.

Success, however, has opened the door for another viral scourge.

Enter liver disease, a leading killer of people with HIV. It usually results from the hepatitis C virus (HCV), which infects about 30 percent of HIV-positive people in the United States.

That’s at least 300,000 Americans facing a potentially deadly viral assault on livers already stressed by the toll of HIV, the toxicity of HIV meds and, for some people, the damages of drug and alcohol abuse.

Similar to the way HIV co-opts CD4 cells in the body’s immune system, HCV infects and multiplies in the cells of the liver, the body’s detoxifyer. As the immune system attacks the infection, inflammation results, which can damage the liver. (“Hepatitis” means “inflammation of the liver.”) The consequence is often scar tissue, known as fibrosis in its milder form and cirrhosis when it is more advanced. A needle biopsy performed by a doctor detects the degree of damage. Roughly 20 percent to 30 percent of people living with hep C develop cirrhosis, putting them at risk for compromised liver function and, ultimately, liver failure or cancer.

To complicate matters, HCV often exhibits no symptoms for decades, even while it can slowly erode liver health. And so, like HIV, hepatitis C often goes undetected, potentially wasting valuable time when treatment could cure hep C and prevent critical liver damage.

Unlike hepatitis A and B, there is no vaccine for HCV. Because HIV and HCV are both blood-borne infections, many people with HIV also have hep C. Sharing needles and drug works is by far the main route of HCV transmission. While semen does not seem effective at transmitting HCV, there are cases of sexual transmission, particularly among HIV-positive gay men. (See “Let’s Talk About Sex,” page 7.) In general, people with HIV are more vulnerable to HCV. In other words, having HIV itself is a risk factor for HCV. Guidelines recommend that all HIV-positive people undergo HCV testing and regular liver function screening. Abnormal liver enzymes can be a sign of acute HCV infection. (Most HIV docs follow these guides, for once giving people with HIV an advantage; HIV-negative people might not get such screenings.)

Early detection is crucial because treating HCV in the first six months can triple the likelihood of a cure, and it can cut treatment to just 24 weeks, half the usual time.

Compared with people mono-infected with HCV, those coinfected with HIV face steep challenges.

“These diseases have a negative effect on each other,” says Laveeza Bhatti, MD, director of the Hepatitis C/HIV Coinfection Clinic at the AIDS Healthcare Foundation in Los Angeles. “It’s kind of like adding fuel to the fire.”

Coinfected people can experience more rapid liver disease progression, developing cirrhosis at a rate double that of people with HCV alone. Though many people living with both viruses remain stable for years, up to 30 percent may progress rapidly, with their livers worsening significantly over the course of a few years, not the usual decades. This

may be partly because the liver processes many HIV meds, risking liver toxicity.

Studies suggest, too, that HIV itself hastens liver damage, though some meds may be more toxic than others so be sure to discuss with your doc.

The good news, says Daniel Fierer, MD, of The Mount Sinai Hospital in New York City, is that suppressing your HIV viral load with HIV meds may slow HCV’s liver damage.

Though hepatitis C can be cured with the standard drug combination of pegylated interferon plus ribavirin, cures are less common for coinfected people. On the (big)

plus side, the FDA recently approved two HCV protease inhibitors that are expected to improve cure rates—a cure is known as a sustained viral response (SVR)— for people coinfected with genotype 1 hep C and HIV. (See “Time for Treatment?” page 8.) Also encouraging: Many more new HCV drugs are in the pipeline.

Another promising therapy? Awareness. What you don’t know can hurt you, but knowledge is good medicine.

—Benjamin Ryan For more information, visit hepmag.com/ hivcoinfection.

(DOCTOR) GETTY IMAGES/THOMAS BARWICK; (CONDOM) ISTOCKPHOTO.COM/RUDYANTO WIJAYA; (SYRINGE) ISTOCKPHOTO.COM/JAMES MCQUILLAN

LET’S TALK ABOUT SEX Recent research suggests that unprotected sex between gay men—especially if they are HIV positive—is promoting hepatitis C transmission in major urban areas across the globe.

Daniel Fierer, MD, of The Mount Sinai Hospital in New York, says many of the HIV-positive gay men he treats are shocked to find themselves suddenly coinfected with HCV, often after what he calls a “bad weekend.”

Unlike HIV, HCV doesn’t seem to be transmitted among monogamous heterosexual couples. The HCV risk for gay

NEEDLE KNOWS If you’re living with HIV and hep C and still using drugs and alcohol, typically the best advice for you is to get clean.

Alcohol can wreak havoc on an already taxed liver, and drug dependence brings its own baggage, including that some docs are reluctant to prescribe hep C treatment for active users. If you’re not ready to abstain, make sure you know some harm-reduction basics.

SHOOTING SAFE To avoid other infections and protect shooting pals, don’t share—that goes for syringes, cookers, cottons and water.

Use new needles. If you can’t stick to your own rig, use bleach to soak your cooker and flush your syringes.

KNOW YOUR LIMITS Drug and alcohol overdoses can be lifethreatening. Know your tolerance and be extra careful if you start using again after being on the wagon—overdose is more likely if you haven’t used drugs or alcohol in a while. Also be cautious of mixing. Combining heroin or alcohol with other illicit drugs can spell trouble. If you’re injecting drugs and have access to a syringe exchange pro-

men often lies in traumatic sex practices common to crystal meth–fueled sex between men. Group sex, fisting, use of toys and rough anal sex—anything that produces even microscopic amounts of blood—appear to put both the top (insertive) and bottom (receptive) partners at risk for hep C. Having HIV, as well as having other sexually transmitted infections, sharply raises the risk.

You don’t have to be celibate, though.

“It’s such an old message, it’s almost hackneyed,” Fierer says: “Wear a condom.”

—BR

gram, ask for an OD kit. It may contain a drug called Narcan (naloxone) that can slow the symptoms of an OD until medical help is found.

ASK FOR HELP Ready to quit? Your doc or other care providers can help find a program that works for you—residential, hospital, in-patient or out-patient. Meds can ease withdrawal symptoms and prevent relapses. Also consider 12-step programs at Alcoholics Anonymous (aa.org) or Narcotics Anonymous (na.org).

—Tim Horn

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TIME FOR TREATMENT?

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new era in hepatitis C treatment dawned in May 2011.

That’s when the Food and Drug Administration (FDA) approved two new meds, Incivek and Victrelis, each a protease inhibitor that fights the hepatitis C virus (HCV). For the past 20 years, the standard therapy to treat hep C offered most people the worst of both worlds—low success rates and often devastating side effects. Finally, hepatitis C treatment is emerging from its dark ages.

But despite the two new drugs’ promise to deliver improved cure rates, we haven’t quite reached a full treatment renaissance. Each new protease inhibitor (PI) must be taken in combination with the old treatments, potentially adding side effects. And the FDA hasn’t yet approved the PIs for people coinfected with HIV, so physicians who prescribe the hep C meds to HIV-positive patients must do so without full knowledge of the drugs’ challenges. For example, doctors

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and patients will need to navigate potential drug-drug interactions between these new PIs and HIV drugs.

Additional excitement is in the pipeline. Even without a crystal ball, it seems clear that the next three to five years could bring an HCV care revolution like the one we’ve seen with HIV. We now have numerous classes of drugs fighting HIV in multiple ways, with simplified dosing schedules, reduced side effects and better disease management. The

GETTY IMAGES/MARTIN BARRAUD

THE ODDS OF CURING HEP C ARE NOW BETTER THAN EVER.

same is on the way for hep C. “It ’s almost like retracing those steps,” says Laveeza Bhatti, MD, director of the Hepatitis C/HIV Co-infection Clinic at the AIDS Healthcare Foundation in Los Angeles, comparing today’s hepatitis C developments to the past 15 years of HIV research. “And the second time around, things are always better.”

In other words, fuller steam ahead.

The usual treatment for people living with HIV and HCV is a yearlong pairing of pegylated interferon with ribavirin.

Neither medication directly targets HCV. Interferon, given in weekly injections, prompts the immune system into a kind of virus-fighting overdrive. Consequently, its side effects often resemble flu symptoms—fever, aches and pains, headaches, chills and fatigue—and also include anemia, weight loss and depression. Ribavirin, taken orally twice daily, boosts HCV treatment success. Its exact role in the combo is not well understood, but its known side effects include anemia and birth defects.

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hile these meds have wo rke d b e t te r t h a n nothing, a type of drugs called direct acting antivirals (DAAs) is needed to really knock out hep C—it’s the same approach used to treat HIV. Fortunately, the HCV treatment pipeline is full of DAAs. Some have proven useful in combination, and they might eventually replace interferon and ribavirin altogether.

Incivek and Victrelis, each of which is taken three times a day orally, are the first DAAs to emerge. While not yet approved for coinfected people (both have FDA approval for use by people who have only HCV), they’re showing promise in their first studies in people living with HIV/HCV and starting hep C treatment for the first time. According to early results, 71 percent and 74 percent of those using Victrelis or Incivek, respectively, combined with pegylated interferon and ribavirin, had undetectable hep C viral loads after six months of therapy—good showings, considering only 34 percent to 55 percent of those using interferon/ribavirin alone have maintained similar outcomes.

The studies aren’t even half f inished—volunteers still have six more

months of treatment and will then need to be followed for another six months to determine actual cure rates. While some viral load rebounds are expected, adding either drug to standard treatment is already being called a marked advance for coinfected people.

One important area for research is drug interactions. These present an important challenge for coinfected folks, especially those who hope to use the new hepatitis C PIs. Many HIV meds can affect the levels of HCV PIs in the body, and vice versa, possibly reducing the drugs’ effectiveness and worsening their side effects.

Daniel Fierer, MD, of The Mount Sinai Hospital in New York, calls the new hep C PIs “worse than HIV drugs” when it comes to interactions. Among HIV meds, only Isentress, Reyataz and

recommend doing so when tests—notably liver biopsy results—show liver damage tipping toward more critical disease. Making this personal decision involves weighing the risks of drug interactions and treatment side effects against your immediate need to address the health of your liver.

“Anybody who can wait should,” Fierer says. “[Or] you can get into clinical trials with newer agents that are easier to take, with fewer side effects.”

“Hopefully, everything will be better,” Douglas Dieterich, MD, of The Mount Sinai Hospital, says of the near future of HCV care. “The question is, Will your liver last?” he asks, adding that not everyone has the luxury of waiting for new meds.

This reemphasizes the importance of building a strong relationship with

Should coinfected people take their HIV meds while on HCV therapy?

Absolutely. efavirenz (in Sustiva and Atripla) can be taken with Incivek, he says, adding that the Incivek dose may need to be adjusted if used with Sustiva or Atripla. Less is known about Victrelis, though a study pairing it with Isentress is ongoing.

This raises the question: Should coinfected people take their HIV meds while on HCV therapy? Absolutely, Bhatti says, because of the non-specific way interferon prompts the immune system to pursue viruses. The key is to work closely with an HIV doc—and possibly a liver specialist—to make sure you’re avoiding drug interactions.

“I want the immune system to be in good functioning form, able to focus on one virus, not two,” Bhatti says, adding that an efficient immune system helps eradicate HCV. Which leads to the key question: when to start HCV therapy. Physicians

a doctor—ideally one who specializes in treating coinfected patients and who will closely monitor your liver.

“If you have hepatitis C, you need to be constantly evaluating your treatment options,” Dieterich says. “It’s not a matter of if you should be treated. It’s a matter of when.”

And, when treatment time does come, work with your health care team to predict and manage potential side effects along with drug-drug interactions.

“Patients do really well when they anticipate side effects,” Bhatti says. “I have patients who say, ‘Oh, you told me I would have five side effects; I’ve just had one, and that’s great.’”

The readiness is all.

—Benjamin Ryan To learn more about treatment options, log on to hepmag.com/hivcoinfection.

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nyone who has seen Jules Levin in action at scientific conferences, in activist meetings or at the podium knows he is knowledgeable, bold—and sometimes brash. The result? A steady stream of achievements that have helped transform care for people living with HIV and hepatitis C coinfection in the United States.

Levin, a 61-year-old native New Yorker, knows intimately the challenges of living with both HIV and hepatitis C virus (HCV). He cured his hep C despite three big obstacles—he was coinfected with HIV, his liver had already developed advanced scarring (cirrhosis), and he ultimately needed two rounds of HCV treatment known to cause debilitating side effects.

Along the way, Levin became well-versed on the intricate relationship between HIV and HCV. So as the founder of the National AIDS Treatment

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Advocacy Project (NATAP), he broke the silence and inertia surrounding HIV/HCV coinfection, educating not only policy makers, researchers and pharmaceutical companies, but also thousands of people living with both viruses. Here, the outspoken advocate shares his story.

When did you realize that someone needed to light the advocacy torch for coinfected people?

I tested positive for HIV in 1987 and only realized several years later that I was also at risk for hepatitis C. I had my doctor test me in 1997, and sure enough, I was infected. Not only that, but I had cirrhosis of the liver.

So it was personal?

Yes. I should have been tested sooner, but the seriousness of HCV coinfection wasn’t really on anyone’s radar at the time. So I started meeting with department of health officials in New York, Los Angeles

STEVE MORRISON

MR. COINFECTION

ACTIVIST JULES LEVIN BATTLES FOR AWARENESS FOR HIV AND HEP C

and Miami about the need for testing all people living with HIV. By 2000, guidelines started to recommend HCV testing for all people living with HIV. That was a tremendous first step.

Then what?

Because hepatitis C progresses faster in people living with HIV, there’s a big need for treatment, which really should be started before cirrhosis occurs. AIDS Drug Assistance Programs were covering treatment, but there wasn’t any money going to education and support programs for HIV-positive people starting hep C therapy. Coinfected people need special support, because HCV treatment can be really rough and adherence can be challenging—much more so than HIV combination therapy. So I started meeting with the Ryan White planning council in New York [the Ryan White HIV/AIDS Program provides services for those living with HIV who lack health care].

We got coinfection clinics started in public hospitals, and the city began spending money on HCV programs, including patient education.

When did you go national?

I started to meet with members of Congress, the Bush administration, the Health Resources and Services Administration [HRSA] and the CDC [the Centers for Disease Control and Prevention] in 2000. My goal was to get funding to increase access to hep C treatment and supportive services for coinfected people on a national level.

Did you do all of that alone?

Yeah, for the most part I did, at least initially. A lot of national HIV advocacy and political organizations I talked to didn’t want to get involved. I think the fear was that money for hepatitis C would be taken away from HIV. A lot of the support I did get came from organizations and individuals in various cities who were particularly interested and concerned with this problem and understood the gravity of the situation. We worked together as the National HIV/Hepatitis C Coinfection Coalition, which I founded.

What did that group achieve?

A lot of our work focused on adding hep-

atitis language to the Ryan White CARE Act, which had previously been reauthorized in 2000 with no mention of hep C coinfection. The 2005 bill, reauthorized in 2006, needed this language so providers could get funds for hepatitis C services.

We proposed the language and then had to make sure we had support from the Senate and the House, so from 2001 through 2006 we held numerous HCV briefings with members of Congress and their staffers to make this happen.

What are some of the major coinfection advocacy goals for the next five to 10 years?

Pushing for newer drugs and making sure they work for coinfected people is really important, especially now that so many drugs are in the pipeline. It’s likely that we’ll have interferon-free regimens in two or three years, which is great news—better efficacy with far fewer side effects. We also need to keep fighting for access, especially through AIDS Drug Assistance Programs, and for education.

Hep C treatment is really important for coinfected patients.

You’re not a big fan of delaying hep C treatment until absolutely necessary?

Well, “absolutely necessary” can come really quickly for coinfected patients. I had cirrhosis when I started treatment.

The treatment wasn’t easy, and for me, [two rounds] took a total of two years.

Even though I’m cured, I still need to have regular MRIs to watch out for liver cancer. And besides, HCV is like HIV. A lot of inflammation goes on before it’s treated, which can have a lot of negative health consequences.

Any advice for coinfected patients who haven’t yet started treatment?

Treatment can be rough, but it’s definitely doable and it’s the only way to get rid of the disease. Make sure you’re talking with your doctor about the stage of your liver disease, which is important in deciding whether treatment should be started now or if you can wait until newer regimens come along. Also make sure you’re connecting with support services—there are lots available.

Yes, and a whole lot of people thank —Tim Horn you for that.

RESOURCES

FOR INFORMATION AND SUPPORT, HERE ARE SOME PLACES TO START. HEP: YOUR GUIDE TO HEPATITIS (HEPMAG.COM) Hep offers unbiased news, updates from major liver conferences, full information on hepatitis A, B and C, forums for people living with hepatitis (including HIV/HCV coinfection), a directory of services across the country, and more.

462 Seventh Ave., 19th Fl., New York, NY 10018. Phone: 212.242.2163 NATIONAL VIRAL HEPATITIS ROUNDTABLE (NVHR.ORG) NVHR, a coalition of organizations for hep C awareness and advocacy across the United States, offers fact sheets and a guide to federal health care agencies.

P.O. Box 1662, Rohnert Park, CA 94928.

Phone: 707.242.3333 NATIONAL AIDS TREATMENT ADVOCACY PROJECT (NATAP.ORG) Don’t let the name fool you. Founder Jules Levin loads his website with info, studies and research reports about hepatitis C and HIV/HCV coinfection too.

580 Broadway, Suite 1010, New York, NY 10012. Phone: 212.219.0106 HARM REDUCTION COALITION (HARMREDUCTION.ORG) Offers support and info for intravenous drug users, including needle safety and treatment for those with HCV and HIV. 22 W. 27th St., Fifth Fl., New York, NY 10001. Phone: 212.213.6376 1440 Broadway, Suite 510, Oakland, CA 94612. Phone: 510.444.6969 CLINICAL TRIALS (CLINICALTRIALS.GOV) A National Institutes of Health website with a searchable list of all hep C clinical trials in the United States and globally (with contact info and inclusion criteria).

Two newsletters for prisoners: PRISON LEGAL NEWS (prisonlegalnews .org; monthly, $30 per year for prisoners) P.O. Box 2420, West Brattleboro, VT 05303. Phone: 802.257.1342 PRISON HEALTH NEWS (quarterly, free for prisoners) c/o Philadelphia FIGHT, 1233 Locust St., Fifth Fl., Philadelphia, PA 19107.

Phone: 215.985.4448

hepmag.com WINTER/SPRING 2012 HEP COINFECTION SUPPLEMENT 11

SURVIVOR’S INSTINCT

Lillian Anglada

When Lillian Anglada, 53, learned she had hepatitis C, a deep sense of shock set in. After living with HIV for over 20 years, Anglada had made peace with those medications and side effects. She

understood HIV treatment. She had learned to navigate hospitals and doctors and all areas of her life—personal, social and professional. But a coinfection?

“I was devastated,” New Yorker Anglada says. “I needed time to process it.”

Her process was honed by what she had learned from dealing with her HIV diagnosis. “First I needed to find a doctor and health care team I was comfortable with. So I went to meetings on hep C and talked to friends who have hepatitis.”

She also assembled a support system—family, friends and colleagues.

After six months, Anglada was ready to start treatment for her new virus: a course of twice daily ribavirin pills plus once-a-week injections of pegylated interferon. She also switched her HIV regimen to better manage both conditions.

“I was worried about side effects—I’m prone to them. You read that small print?

I’m the one who gets all that. But I had

none,” Anglada says. “My process was to go to work on Thursday, come home, have the injection and go to sleep. I would wake up the next day feeling fine.”

Four months later, though, Anglada’s doctor told her the treatment wasn’t saving her liver. Her cirrhosis was too advanced, and she would need a liver transplant. She stopped her hep C treatment (though not her HIV meds) and signed onto a liver transplant list.

For now, Anglada continues to manage her liver health naturally (no alcohol, cigarettes or drugs). If her name comes up for a new liver, she will accept. She relishes her work as a community activist and consultant and appreciates her supportive network of family and friends.

Her tips on how to manage HIV/HCV coinfection are clear: “Get a good doctor and keep communication open. Control your stress, eat well, get good sleep. And enjoy life.”

—Cristina González

A little more than a decade ago, there wasn’t much hope for HIV-positive people with a failing organ, such as a liver ravaged by hep C–related cirrhosis.

Transplant surgeons were often reluctant to operate on—and prescribe immunesuppressing anti-rejection drugs for— people with low CD4 cell counts. Even if a surgeon was willing, he or she would likely have trouble securing an organ for someone widely perceived to have an already limited life expectancy.

Fortunately, times change. Newer, more potent HIV meds have lessened the worries about low CD4 counts and survival. At least 21 transplant centers in the United States alone have stepped up to provide organ transplants to people living with HIV, noting that the need is even greater today than it was before combo HIV therapy: As people live longer with HIV, infections such as hep C have time to fester and cause serious disease.

Survival rates following liver transplants are excellent, whether the recipient is coinfected or not. Roughly 73 percent of

transplant patients coinfected with HIV and hepatitis C virus (HCV) were still alive after three years, according to one liver transplant study. Not bad, considered the 78 percent three-year survival rate in those living with HCV alone.

Obstacles remain, though. Higher

12 HEP COINFECTION SUPPLEMENT WINTER/SPRING 2012 hepmag.com

cancer rates and post-transplant drug interactions are two major concerns for coinfected people to contend with. Fortunately, many transplant teams are now able—and willing—to help. You can find them at hivtransplant.com.

—Tim Horn

(ANGLADA) STEVE MORRISON; (SURGEON) ISTOCKPHOTO.COM/ABEL MITJA VARELA

TRANSPLANT TRENDS

online now @

HEPMAG.COM News From the Liver Meeting Read about upcoming HIV/HCV treatment options and other highlights from the 62nd annual meeting of the American Association for the Study of Liver Diseases in San Francisco.

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Overheard in the Forums

I was told my treatment [for hep C] will take six months.

Will I be able to drive (I live far away from the hospital where treatment will take place)? Will I be able to be a mom to my son? Will I be able to do the day-to-day things that a single mom has to do?

Check out the Hep Forums, a round-the-clock discussion area for people who have questions about hepatitis and liver health.

Scroll through recent posts or join the conversation yourself.

One in 33 ers baby boom you? o D . have hep C rt pecial repo Read our s rn a g.com to le on hepma t this more abou ler. il k t silen

To the Tune of C Read our exclusive interview with Alejandro Escovedo, a Texas-based rock ’n’ roll musician who fell critically ill from advanced hep C in 2003—and learn how he fought back.

How to Find Support Visit the Hep Health Services Directory, the Internet’s most comprehensive guide to hepatitis health care and services featuring thousands of organizations nationwide including drug treatment centers, methadone clinics and hepatitis testing centers.

(YOUNG MAN) GETTY IMAGES/BILL EPPRIDGE; (BLOCKS) ISTOCKPHOTO.COM/RICHARD MIRRO; (SAN FRANCISCO) ISTOCKPHOTO.COM/PGIAM; (ESCOVEDO) MARINA CHAVEZ

DID YOU REALLY LEAVE YOUR PAST BEHIND?

Hepatitis 101

Find out what you need to know about hepatitis A, B and C. Learn the facts about transmission, testing and treatment as well as prevention.

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SEX, DRUGS AND ROCK ’N’ ROLL