THE ONE FOR ME? How do I know if I have hep C? COINFECTION CHRONICLES... Carmen Rivera Age: 55 • Bronx, NY Robert Lewis Elizabeth Parrilla
By Jules, he means Brooklyn nativeand ex–Wall Street trader Jules Levin, whose name has become synonymouswith advocating for the estimated one-third of HIVers coinfected withhep C. (About 10 percent of HIVers have a chronic form of blood-bornehepatitis B.) Diagnosed with HIV and HCV while kicking heroin in the’80s, Levin in 1995 founded the National AIDS Treatment AdvocacyProject (NATAP) to decipher scientific data for everyday HIVers. He hasbecome one of the most respected voices with Big Pharma, federal AIDShonchos and countless HIVers like Zimmerman, who mob the forums heholds throughout the country, which star top researchers. NATAP alsoprints several data-packed newsletters a year, distributed to the tensof thousands.
Though treatment cleared Levin’s hep C in 2003,he maintains a deep bond with coinfected HIVers, who depend on him forlifesaving information. Many are, like Levin, current or formerinjection-drug users (IDUs), whom hep C affects most (it is transmittedthrough shared needles far more easily than HIV). Many are, like Levin,heterosexual men. But unlike him, they tend to be low-income people ofcolor, underrepresented among the HCV-free gay white HIVers (and theirHIV negative peers) who have dominated AIDS policymaking and treatmentactivism. They are beset with challenges ranging from HIV to addiction,mental illness, poverty and prison time.
But Levin says thatright now, the main thing that’s killing them is hepatitis C. His owndrawn, AIDS-weathered face and wiry frame spark with righteous fury:“If you go into the inpatient AIDS ward at Bellevue [a New York Citypublic hospital], the people dying there are dying of hepatitis-relatedliver disease,” says the fiftyish-looking Levin, who won’t give hisage. “All the studies show that it’s the number one cause of death[among HIVers].”
Fact is, he’s right: Studies show that up tohalf of recent deaths among HIVers were attributable to liver diseasecaused by hep C, which afflicts up to 90 percent of HIVers who haveinjected drugs. Though people with HCV alone often see the virusprogress so slowly that they never need treatment, several studiessuggest that HIV at the very least doubles the speed of HCV-relatedliver disease.
What’s more, HIVers don’t respond to HCVtreatment as well as those with HCV alone and are harder hit by theside effects. (On top of that, for unclear reasons, African Americansdon’t respond as well to HCV treatment as whites.) Optimistically, therecent APRICOT study found that when HIVers with HCV genotype 1 weretreated with a combination of pegylated interferon plus ribavirin, 29percent cleared HCV—a rate approaching the 40 percent clearance ratesamong non-HIVers with that genotype. That data led the FDA in Februaryto approve drugmaker Roche’s versions of the two drugs specifically forcoinfected people.
But standing before even such modestsuccess rates are many obstacles, from too few coinfection-savvy HIVdoctors and support programs for coinfecteds undergoing hep C treatmentto the many states whose AIDS Drug Assistance Programs (ADAPs) don’teven cover the grueling, months-long regimen. (At press time, POZ learned that Schering-Plough would provide the treatment to 1,500 needy HIVers on ADAP; for information, call 800.521.7157.)
Clearly,coinfection is an urgent issue demanding a strong, effective leader.But numerous AIDS advocates, many focusing on coinfection themselves,wonder privately whether Levin is the best choice, calling him anabrasive, self-congratulatory lone wolf. “He’s better at alienating andmaking noise than forging coalitions,” says one advocate close to him,echoing many others interviewed for this story. “He’s not the bestperson to be carrying this message.” Levin’s response reflects hissignature Brooklyn bravado, at once infuriating and weirdly endearing:“It’s easy to criticize me,” he says blithely, “because I’m veryhigh-profile.”
DISSERS AND DISCIPLES
Foreveryone who criticized Levin privately (few would speak forattribution, saying that they still had to work with Levin onoccasion), just as many praised him, especially coinfected HIVers likeZimmerman who don’t work at the top levels of AIDS advocacy. And he hascertainly raised coinfection’s profile, enlisting nearly 100 groups inhis National HIV/Hepatitis C Coinfection Coalition, which in recentyears has pled its case before federal biggies like former health
secretaryTommy Thompson and the staff of such lawmakers as Senator Teddy Kennedy(D-Mass.), Senator Arlen Specter (R-Penn.) and Rep. Maxine Waters(D-Calif.)—not to mention the nation’s biggest AIDS advocacy groups,including the National Assocation of People with AIDS (NAPWA), theCAEAR (Communities Advocating Emergency AIDS Relief) Coalition, theNational Alliance of State and Territorial AIDS Directors (NASTAD) andthe AIDS Institute.
For the coinfected folks in his coalition,he is unquestionably a hero. Coloradan Catherine McCartin, 48, who hasaccompanied Levin on Capitol Hill, says he “takes clinical informationand makes it people-friendly.” Washington, DC’s Beri Hull, 49, acoinfected black female activist and former IDU, calls him “more of anadvocate for…populations on the fringes than some so-called mainstream[AIDS] organizations.” AIDS activists, too, applaud his tenacity,passion and openness with his own HIV history, rare among straight maleHIVers. “He is relentless, and that is a good thing,” says JamesLearned, director of treatment education at the AIDS Community ResearchInitiative of America. When it comes to coinfection, “Jules is thepioneer,” says Tracy Swan, a Levin coalition member who works oncoinfection issues at Treatment Action Group.
But Levin’scritics say that as he shouts for more money and attention forcoinfection services, he offers no clear plan to bring them into theAIDS infrastructure—and, worse, is unable or unwilling to collaboratewith those who could help him design one. They call him rude,egotistical and reluctant to acknowledge that he isn’t the only onefighting. Says one: “He’s…very myopic. He needs to hire a good lobbyistand not come near the Hill, [where] he yells. He’s kind of scary.”
“Nobodyhas asked me to sit down with them and put together a program,” Levincounters. But he seems slyly delighted with his bad-boy reputation,repudiating it lushly: “For people who want to work with me, I’m easy—apushover. I have a facade. If I really were so tough, I wouldn’t bedoing this work.”
It’s his most recent work, though, that hasadvocates really worked up. He’s setting his sights on AIDS’ mostprecious—and overstretched—moneypot: the Ryan White CARE Act.
THE FIGHT OVER RYAN
Enactedin 1990, the $2.1 billion Ryan White CARE Act serves hundreds ofthousands of HIVers not covered by Medicaid, Medicare or privateinsurance. It funds everything from state ADAPs, which dispense freemeds, to primary-care clinics and peer-led treatment education. Yet theprogram has been flat-funded throughout the Bush administration as itscaseload has risen, causing an estimated $425 million shortfall, ADAPwait lists in several states and a scramble to preserve services. Thisyear, Congress will almost certainly reauthorize Ryan White for anotherfive years—but amid across-the-board domestic cuts, all of Ryan Whitebut ADAP (which may get a small increase) will likely be flat-fundedagain. Says Learned, “Some mind-bending choices will have to be made.”
Inthe middle of such anxiety, say AIDS advocates, Levin last year did theunthinkable: He called for a mandated amount for hep C within RyanWhite. Levin denies that he did so. But Carl Schmid, who handles policyfor the AIDS Institute, insists that, in a meeting, Levin proposed theearmark. Schmid says he told Levin he would never “receive support fromthe AIDS community” because shortages in Ryan White made it “difficultto support new set-asides.”
Plus, says AIDS Institute headGene Copello, “The CARE Act is built on the concept of local planning”for anything deemed a priority in a given city or area, includingcoinfection. “So there’s always this hesitation to have any top-downmandate.” He is echoed by Robert Cordero of the CAEAR Coalition, whosereauthorization recommendations, issued in February with the group AIDSAction, don’t call for special focus or funds for hep C. Says Cordero,“We have to make sure that a shrinking pool of resources can addressHIV first.”
At least one AIDS poobah, NAPWA executive directorTerje Anderson, has echoed Levin’s demand by suggesting a separate RyanWhite funding stream for hep C. Though Anderson says he hasn’t formallyproposed the idea and acknowledges that “it’s a crappy time for [new]appropriations,” he says he has
discussed it with “a number ofcongressional offices” crucial to Ryan White reauthorization. Anderson,it’s worth noting, is perhaps the only top-level AIDS advocate besidesLevin to have been coinfected (he cleared HCV with treatment in 1997).
Levinseems to have since “backed away” from his earmark demand, saysSchmid. Indeed, Levin never broached the earmark with POZ,saying only that his coalition has submitted “language” on beefing uphep C services that it hopes to see in a reauthorized Ryan White, thenadding cryptically, “if and when the discussion moves to [money], Iwill assess the situation.” But HRSA’s Laura Cheever, MD, deputyassociate administrator for HIV/AIDS, says, “It’s up to [Ryan White]grantees to figure out how to best use the funds,” while adding thatHRSA will urge grantees to offer more hep C screening, even if ADAPsdon’t provide treatment.
Yet Levin blames not only Ryan Whitegrantees. He says few HIV doctors know much about coinfection, tellingpatients that they’re OK because their liver enzymes are normal. (Notso; see “Coinfection 411,” below). HCV information “should be part ofan infrastructure, just like HIV treatment education,” says Levin. “OurASOs [AIDS service organizations] are doing shit,” he adds, saying theyfail to screen clients for hep C, educate the coinfected ones andsupport those who undergo treatment.
Battling two bugs at once
EveryHIVer should be tested for HCV. • Ask for an HCV antibody test—but ifyou test positive, confirm it with an HCV viral-load test. You may havecleared HCV naturally.
If I have hep C, do I need treatment?
Youneed to assess hep C’s damage to your liver. Blood tests can check yourliver functions, but they can be normal even with liver damage. • Learnyour hep C genotype: 1 is more common and harder to treat than 2 and 3.• An alpha-feto protein blood test screens for liver injury; anabdominal sonogram for liver cancer. • The best assessment is a liverbiopsy, which will show the level of fibrosis (scarring).
What if I have advanced fibrosis?
Beforeyou start hep C treatment (which combines pegylated interferon withribavirin), you need a full evaluation, including a psychiatric screen.• Women can’t get pregnant during or for six months aftertreatment because ribavirin may cause birth defects • You can’t takeribavirin with the HIV medsVidex or AZT. • You’ll respond better to treatment if you startwith 350 or more CD4s, but start with less if you really need to.
What is the goal of treatment?
The goal is to “clear” your hep C, defined as having negative HCV viral load six months after treatment ends.
•HIVers usually are on treatment for at least 48 weeks. • Your HCVviral load at week 12 of treatment will predict whether you will clear,but even if it’s unlikely, consider staying on treatment to reverseliver damage.
• You need major support to get throughtreatment, so plan ahead with your job and a support group if possible.• You can get HCV again after clearing it, so be careful.
What if I delay treatment?
Besure to repeat your liver biopsy within the next three years.• Love your liver by chugging lots of water; quitting or reducingdrinking, drugging and cigarettes; and eating more leafy greens andless fatty, greasy foods. • Get vaccinated for hepatitis A and B ifyour blood doesn’t show immunity to it.
Will there ever be better hep C treatment?
HCVprotease inhibitors and polymerase inhibitors are in early developmentnow, providing hope for HCVers who’ve failed or are putting off today’streatment.
Where can I learn more?
ContactJules Levin’s NATAP at www.natap.org or 888.26.NATAP—and his coalitionat www.hepcadvocacy.org. Also check out Andi Thomas’www.hep-c-alert.org, Alan Franciscus’ www.hcvadvocate.org,www.hivandhepatitis.com and www.lola-national.org (for Latino HCVers).
Simmering beneath thesegrievances is his conviction that coinfected people are the AIDScommunity’s undesirables: “Look at who [hep C] affects,” he says.“IV-drug users mostly—that group is completely stigmatized. Peopledon’t care about them.” What people exactly? In a 2002 POZ interview,Levin asserted: “The gay white men who are still doing treatmentadvocacy aren’t as affected by hepatitis. They’re not sympathetic tothe injection-drug users, blacks and Latinos who are coinfected.”Today, he’s careful not to go that far. He seems not to want toalienate people—too much.
ASOsin cities with significant coinfected percentages strongly deny they’re“doing shit.” Charles King, who leads New York City’s Housing Works,says, “We aggressively address coinfection” with hep C prevention andtreatment counseling, testing and treatment. Uptown, Harlem United notonly offers on-site hep C education but screens all clients for thevirus and treats in conjunction with gastroenterologists at a majorhospital, says the agency’s medical director L. JeannineBookhardt-Murray, MD.
Outside New York, the AIDS Foundation ofChicago’s Laird Petersen recites a long list of programs that thecity’s ASOs, AIDS clinics and departments of health provide to increasehep C services for HIVers (but notes that few HIV doctors have signedon to a hep C training program). And at any one time at PhiladelphiaFIGHT, as many as 30 coinfected clients are treated for HCV onsite by acoinfection-specializing doctor and are offered support groups and peereducation, says the agency’s Laura McTighe.
Many AIDS leadersagreed with Levin that “there needs to be much more advocacy aboutHCV,” as King puts it, but most disagreed that the deficit stemmed fromindifference. “Most of my colleagues in other national organizationsare very concerned,” says Coppello. “It’s impacting the very populationwe exist to serve.” Again, such advocates say, it’s all about themoney. “People are terrified that things are going to get cut,” saysSwan, “and their first line is to preserve what’s there.”
But atleast a few people think Levin is on to something—a breach betweencoinfected HIVers and their C-free, IDU-free, often gay malecounterparts who influence policy and funding. “The HIV community hasnever been particularly welcoming of [IDUs],” says Learned. “I workedat NAPWA for years,” says black female coinfected Beri Hull, “andalways felt like it should have been called the National Association ofGay Men With AIDS. When you have a certain group running [things], theylook out for themselves.” Even NAPWA chief Anderson, a gay white HIVer,says that as a former heroin injector, “I feel disconnected from partof the [AIDS] movement. [My former injecting] sometimes makes peopleprofoundly uncomfortable.”
Others insist that the true issueis Levin’s contentious work style, which undermines his worthy agenda.“He considers himself a one-man show,” says a dissenter. “He’s a WallStreet guy. He only hears what he wants to hear. He doesn’t understandthe policy realities in Washington. He makes it seem so simple: Putthis in the CARE Act. You have to give a little more detail than that.A lot of [coinfection programs] are happening through Ryan White[already].” Says another: “I’ve heard that his coalition isn’t really acoalition—it’s just Jules.”
A MAN POSSESSED
While POZwas reporting this story, it discovered an entire network of people andprograms dedicated to hep C and coinfection, from both the AIDS worldand the budding world of hep C advocacy. So it was strange, to say theleast, that even when prompted, Levin hadn’t mentioned more than one ortwo. Why hadn’t he joined the National Hepatitis C Advocacy Council(NHCAC), chock-full of AIDS and HCV advocates lobbying for anindependent hep C funding stream, even after being “personallyinvited,” says council president Andi Thomas. According to Levin,council members “tend to focus their efforts on [HCVers-only] who werenot infected by injection-drug use and are not coinfected.” He addsthat he belongs to the Hepatitis C Appropriations Partnership (HCAP), asimilar effort.
But San Francisco hep C advocate and councilmember Alan Franciscus calls Levin’s characterization of the group“totally false. How could you have a group that doesn’t advocate forpeople at highest risk for HCV?” he asks, referring to IDUs.NASTAD hepatitis expert Laurie Schowalter, who works with the council,agrees, describing the group as “focused on helping all people withHCV, coinfected or not.” An HCAP member, she also questions Levin’sinvolvement with that group: “I have reached out to him several times,but he has put little effort forward. I respect his passion, but I’mnot yet convinced Jules is willing to do the hard work necessary to getmoney and attention for this disease.”
Asked why he hadn’tmentioned a CDC-funded program of the New York State’s respected AIDSInstitute to integrate “hep ed” into relevant services, such as thosefor HIVers, Levin scoffs: “It’s not doing nearly enough.” What of thefrequent complaints that he offers no HCV implementation program of hisown? He admits that he doesn’t have one, adding, “I put my eye not somuch on the day to day” but “the end goal.” Why hadn’t he at leastmentioned Swan, a member of his own coalition, whom many regard as acoinfection expert? Or her boyfriend, Daniel Raymond, who addressescoinfection at New York City’s IDU-serving Harm Reduction Coalition?“They try—but if you look at a great ballplayer like Larry Bird, how doyou compare?” he laughs. It’s hard to tell if he’s joking.
Reluctantto discuss his past, he allows that in his early years of recovery, hepracticed meditation. Today, he says, “my meditation is hep C educationand advocacy.” Is his work driven by memories of friends in NarcoticsAnonymous whom he says he lost to AIDS in the 1980s and who wouldlikely have been
coinfected today? “Absolutely,” he snaps. Does heremember their names? “There was Dennis,” he mumbles. “And Anthony. Andwhat’s-his-name.” He appears unable or unwilling to continue. “I’ve putthis behind me. It was 23 years ago.”
Yet in many ways he seemsdriven by an anger—and perhaps a grief—so strong that he can’t believeanyone could care for coinfected people as much as he does or advocatefor them as robustly. Inevitably, he provokes comparison to famed AIDSactivist Larry Kramer, who didn’t play well with others but effectivelyscolded and shamed enemies and acolytes alike into action. Perhaps thisis why AIDS advocates hold a soft spot for him, griping anonymously butpublicly applauding a survivor who devotes his life to nabbing the topkiller of HIVers. “Being able to spend time with Jules is alwaysrewarding,” says Learned. “He’s an incredibly warm man. I wish morepeople could see that. They might hear his message more clearly.”
Onething is certain: Right now, he’s the only lived-to-tell leader thatcoinfected HIVers have, and they’re standing by him. When Levin and hisposse presented on Capitol Hill, says McCartin, “he made us feelgood—like a team.” And don’t even ask Zimmerman if Levin’s the guy forthe job. “Oh, definitely,” he says. “Jules is number one.”
Age: 51 • Yonkers, NY
HIV treatment educator at St. John’s Riverside Hospital
Dx’d HIV 1992 • Dx’d HCV 1996
HEP C STORY:
Threeyears ago, a liver biopsy revealed Littles didn’t need hep C treatmentyet—but he’s due for another biopsy this year. “I want to wait for ahep C
protease inhibitor,” he says, “because the [current]treatment doesn’t work as well in African Americans with genotype 1,like me.”
HOW HE COPES:
“I smoke half a pack a day, but I’ve been clean from
drinking or drugs for 18 years.”
“Eventhough I almost died from HIV and two of my brothers died from it, I'mmore afraid of hep C. When your liver’s gone, it’s gone. But I don’twant to inject myself [with HCV treatment] once a week. I used to shootdrugs, and injecting might open some desires.”
LIFE BEYOND COINFECTION:
“Helping people who are newly infected with HIV get through the system—that’s what makes me happy.”
HIV/AIDS peer educator at St. John’s Riverside Hospital
Dx’d HIV 1989 • Dx’d HCV 2000
HEP C STORY:
Riveraprepared herself for hep C treatment last year, only to find out aftera biopsy that she didn’t need it yet. She was relieved because she alsohas diabetes. “Sometimes I get very tired,” says Rivera. “My mind wantsto keep going, and my body says no, no, no. I’m also going throughmenopause!”
HOW SHE COPES:
“Iused to drink tequila like water—now I’ll maybe have one or two. But Ieat everything I'm not supposed to eat—oxtails, pork chops. I try tostay away from that stuff, but I’m Puerto Rican!”
“I think hepatitis C is scarier than HIV. I had a friend with HIV who died from hep C.”
LIFE BEYOND COINFECTION:
“My boyfriend of 13 years makes me happy. When I feel achy, he’ll rub me all over. When I see so many lonely
people with HIV, I realize how fortunate I am.”
Age: 55 • New York, NY
HIV/AIDS case manager at Project Samaritan
Dx’d HIV 1987 • Dx’d HCV 1993
HEP C STORY:
Lewis improved his liver-
disease stage from grade 3 to 1 but didn’t clear HCV on
treatmentlast year. “I wanted to quit it,” he says. “The cold chills, thedepression—I would take my shot on Friday and have to stay in bed allweekend. Sometimes on Monday I couldn’t go into work.”
HOW HE COPES:
By taking a hiatus from his stressful job. “If I have to do the treatment again, hopefully I’ll be home resting.”
Lewis gives props to Levin: “He convinced me that I needed my biopsy. He breaks down the information for those of
uswho don’t have degrees.” And he agrees that hep C gets short shriftcompared to HIV: “We have [meds] to control HIV now, but look at allthe other complications!”
LIFE BEYOND COINFECTION:
“I like helping others [with HIV and HCV]. It’s hard for me not to be at work right now, but my clients still call me.”
Age: 44 • Bronx, NY
Social work student at Lehman College
Dx’d HIV 1998 • Dx’d HCV early ’90s
HEP C STORY:
“Rightnow, I’m on my fourth hep C treatment since 2001. I’m in the last stageof cirrhosis. I worry about not clearing hep C. I feel a little crabby,but I try to overcome that.”
HOW SHE COPES:
Bypostponing her duties as a peer volunteer at a residential treatmentprogram—but she’s sticking with classes toward her social-work degree.“I’ll be doing my internship before September,” she says proudly.
Hermessage to other coinfected folks: “Keep your head up. Be hopeful thatthere’ll be new meds. If I have to try hep C treatment a fifth time, Iwill. I’m not a quitter. And I don’t have anything to lose.”
LIFE BEYOND COINFECTION:
“Ilike to travel—I went to Cancun last year. Plus, my man makes me happy.And I’m the grandmother of four boys. They’re little darlings.”
THE ONE FOR ME?
How do I know if I have hep C?
Carmen Rivera Age: 55 • Bronx, NY