Santa Fean Jeffrey Hockersmith spent three years waiting for a liver transplant, and gradually came to accept that he was going to die.
"Your organs start to fail—your liver first; your kidneys will go, heart, lungs," Hockersmith says. "At the end of that process, I wasn't comatose, but I sure wasn't doing anything. It was just so hard to even get up out of bed."
On Feb. 1, 2004, Hockersmith's intuition—and abysmal blood test scores—lead him to believe it was his last day on the planet. But that night, he received the long-awaited call. By the next day, while Hockersmith was being prepped for transplant surgery at a hospital in Omaha, Neb., his new liver, nestled in a picnic cooler, was being driven 180 miles from Kansas City, Mo., in the midst of a snow storm. Lying on the operating table, Hockersmith felt himself leave his body and observe the scene from the ceiling—altered states of consciousness caused by a buildup of toxins in the blood are a symptom of end-stage liver disease.
"I was looking down at this whole wasted husk of a body, and they said, 'Should we pronounce him?'" Hockersmith says.
Hepatitis C was Hockersmith's old liver's undoing. He believes he contracted the disease from either a bad blood transfusion or an unsanitary dentist. Although Hockersmith was symptom-free at the time of diagnosis, he says that his health deteriorated precipitously without warning.
"You can go along perfectly well—no symptoms, no limitations—and, all of a sudden, you're sick and you get sicker; my metaphor is a bowling ball rolling off a table," Hockersmith says. "Lost mental acuity—certainly, that's maybe the saddest thing; it does happen quite quickly…The physical symptoms are tolerable, but when you add them all together, it's quite difficult, and it really accelerates; that curve just takes off."
Hepatitis C virus is commonly mistaken as strictly a heroin junkies' malady that need not concern law-abiding citizens. The virus has never incited the public outcry caused by HIV, nor the sweeping changes in federal public-health policies that averted a potential HIV epidemic back in the early 1990s. But while incidence of HIV in New Mexico has never been high, the state leads the nation in deaths from chronic liver disease due to the deadly combination of HCV and alcoholism. Furthermore, the rate of HCV infection in the state's prisons is the highest reported by any state.
Now, a new antiviral treatment, which is expected to become available next month, has the potential to change the HCV landscape in New Mexico—but not without a dramatic shift in public attitudes and in treatment protocols in the HCV incubation tank known as the state prison system.
"I wish we could get [more advocacy and funding] going for hepatitis C," Dr. Sanjeev Arora, director of University of New Mexico's HCV treatment program, says. "It's needed; otherwise, huge numbers of deaths will occur."
HCV particles are nubby-looking balls of genetic material and protein only 50 nanometers wide—2,000 together would fit in a hair's breadth. Though mystery continues to surround much of the virus' activities, it's believed that it causes damage partly by hijacking the body's normal immune response, causing fibrous scarring, or cirrhosis, of the liver. Since the liver's work is integral to so many bodily functions, including filtration of waste products from the blood and production of certain proteins and hormones, symptoms of liver disease range from skin rashes to accumulation of large amounts of fluid in the abdomen. Classic symptoms include jaundice, evidenced by yellowing of the skin or eyes, as well as a lack of energy. Cirrhosis can also lead to liver cancer, which is inoperable in 80-90 percent of cases, according to the National Cancer Institute, and typically kills the patient in three to six months. Unlike cousin strains hepatitis A and B, there is currently no vaccine for HCV.
Compared to the average American, New Mexicans are twice as likely to die of chronic liver disease caused by HCV and alcoholism, which work synergistically to disable the liver. A 2009 Department of Health epidemiology report found that chronic liver disease deaths nationwide decreased by 14 percent between 1981 and 2004 while, during the same period in New Mexico, deaths from chronic liver disease increased by 30 percent. However, deaths due to other infectious diseases decreased in the state during the same period.
Nationwide, HCV levels in prison settings are much higher than levels in the general populations of those prisons' respective communities. A 2008 study in the journal Hepatology cited a range of 12-31 percent of prisoners in most states as infected, compared to approximately 1.5 percent of the general US population. In New Mexico, the DOH estimates the state prison system infection rate at more than 40 percent—and that data is taken from when the prisoners initially enter the facilities. According to Caleb Alarid, a peer educator who taught HCV prevention tactics to inmates, an estimated 80 percent of inmates have the disease by the time they're released.
"[Inmates], many of them eventually come out of prison, and that's how hepatitis C can be spread…on top of that, they come out and they become a burden to society, financially and in the health care system," Jules Levin, executive director of the National AIDS Treatment Advocacy Program, says. Levin has been studying HIV and HCV since the late '90s, after contracting both viruses himself; he has gone through antiviral treatment and no longer has HCV.
Not a single HCV-infected inmate in New Mexico had received antiviral treatment in 2003, when Arora came up with the idea for Project ECHO (Extension for Community Healthcare Outcomes), which is funded partly through the state DOH and partly through private grants. Inmates weren't the only ones suffering; Arora's hepatology practice at University of New Mexico Hospital had an eight- to nine-month waiting list. Many patients developed liver disease before they could get in to have the antiviral treatment and, by then, it was too late.
Realizing the challenge the disease presented for both prison clinics and rural health care providers without in-house hepatologists or gastroenterologists, Arora designed Project ECHO to link far-flung practitioners with UNMH specialists through teleconferencing. Once a week, participating providers around the state discuss patients with a panel that usually includes Arora, infectious disease and internal medicine specialist Dr. Karla Thornton, a psychiatrist, a pharmacist and a distance-learning coordinator. The patients' identifying information is withheld to protect their privacy.
Project ECHO's teleconferencing model has been so successful that it spun off ECHO programs to treat diabetes, HIV/AIDs, and other diseases and conditions that benefit from specialized care. The University of Washington took its cue from Project ECHO to start its own program by the same name, beginning with HCV treatment, before expanding to treat other diseases and health problems. In 2007, UNM's Project ECHO won the international Robert Wood Johnson Foundation's Askoha's Changemakers award, one of numerous honors it has garnered. This summer, Arora is scheduled to give a keynote address at a hepatitis C symposium in Beijing, China.
Yet despite its award-winning program, New Mexico's hepatitis C problem remains systemic—with many people unaware they have even been exposed to the disease.
Eric Montoya, 27, of Española, knew intravenous drugs transmit HCV, but thought he was safe because he had always used clean needles from the DOH's Harm Reduction Program. A few months after a stint at Santa Fe County Adult Detention Facility, he woke up in the middle of the night feeling uncomfortable, and noticed his skin felt hot to the touch. Montoya had developed inflamed red patches all over his body; a blood test showed he had HCV. After learning that items as innocuous as a toothbrush can, when contaminated with HCV-infected blood, transmit the disease, Montoya pinned his affliction on a pair of electric hair clippers that he says were shared by a whole cell block at SFCADF. The facility's director, Annabelle Romero, counters that SFCADF "follows the same rules that you'd follow in a barber shop—we clean the equipment after each use."
Household items and other often-overlooked HCV vectors present problems not only because people inadvertently expose themselves to the disease, but also because they don't realize they need to get tested.
Even nonintravenous drug use can create risks, as HCV can be transmitted on paraphernalia used to snort cocaine or methamphetamine.
"I see lots of people that are lawyers and doctors, professional people that are now in their 40s and 50s and did some coke when they were in their 20s," Jessica Doyle, a physician's assistant at Northern New Mexico Gastroenterology Associates in Santa Fe, says. Doyle specializes in HCV treatment.
Tattoos, especially in a prison setting, also present a significant risk because the virus hangs out not only on dirty needles, but also in ink. Because HCV is transmitted through blood-to-blood contact, it's less easily transmittable sexually than HIV; sex between men presents the most risk. Babies born to HCV-positive women have approximately a 5 percent chance of contracting the disease. Health care workers and law enforcement are other at-risk groups, the latter when performing pat-downs of needle-toting suspects.
In addition to Montoya, SFR interviewed six HCV-positive or formerly HCV-positive patients for this story; three said they contracted the virus through IV drug use, two implicated a dirty blood transfusion or other medical procedure, and one blamed sex with an IV drug user.
While the problem for many at-risk populations in the state seems to be a lack of HCV awareness, areas that are hardest-hit may face a different obstacle to treatment—a fatalistic attitude toward the disease.
"A lot of people [in Española] are so familiar with IV drug use and everything like that, that they know hep C is very common," Ry Parker, 24, who is HCV positive and preparing for treatment, says. Parker plans to be treated at El Centro Family Health Clinic in Española, the northern New Mexico clinic that works with Project ECHO. "And it's like, 'Oh, I probably already have it.' It's such a common thing around here that it's almost an expected thing to get…They know about it, but they're careless about it. They figure, 'Well, I'm on this road anyway; hep C isn't anything to me. My uncle has it; my cousin has it'…But they don't see the long-term effects. They're like, 'It's not like it's AIDS or anything.'"
Public health practitioners warn that HCV's reputation as HIV's annoying but relatively harmless kid brother is part of what makes it so insidious. Generally speaking, HCV does take longer than HIV to become fatal, and not everyone with HCV develops
cirrhosis. But an infected patient who waits until he or she becomes symptomatic to seek treatment can end up in line for a new liver.
"That's a big problem because we end up seeing people at our clinic that have end-stage liver disease, and they can't be treated anymore," Thornton says. "Then they have to get a transplant, and that's a very big deal."
According to the Organ Procurement and Transplantation Network, more than 16,000 people nationwide are awaiting new livers. Approximately 2,000 people per year die waiting.
Unassuming as the 3-pound, pinkish-brown organs may appear, livers come with a price tag of $250,000, plus $80,000-$100,000 in health care costs for the rest of the patient's life. And perhaps most gallingly, they become reinfected by the virus, which lurks in an artery connecting the liver and spleen, waiting for its next hurrah. A transplant operation usually compromises a patient's immune system too much for post-op antiviral treatment to be advisable.
Those antiviral treatments, however, can be extremely effective in countering the virus when used in time. But the peginterferon and ribavirin cocktail actually seems more infamous than the virus it was designed to eradicate. Like many pharmaceutical drugs whose TV commercials list absurd-sounding litanies of terrifying side effects, peginterferon and ribavirin are not without their drawbacks. The "peg-riba" cocktail is known to cause (temporary) flu-like symptoms, tiredness, depression and moodiness, and is typically taken for six months to a year. Its cure rates also vary depending on the patient's particular HCV strain. The most recalcitrant version, called Genotype 1, has cure rates as low as 40 percent, depending on the clinic. But most post- and mid-treatment patients SFR spoke to say peg-riba doesn't live up to its fearsome image.
"People shouldn't be scared; get it done because [HCV] will kill you later," Susan Johnson, who spoke to SFR on condition that her real name not be used, says. "I'm glad its not on my brain anymore. I'm not sitting there drinking a glass of wine, going, 'Oh God, it's going to my liver.'"
Johnson, 48, of Los Alamos, waited five years before treatment out of fear of the side effects and squeamishness about giving herself a shot every week. The peginterferon shot turned out to be less intimidating than Johnson had anticipated—the shot comes premeasured in a syringe with a small needle, similar to an insulin pen. Johnson had shortness of breath and achiness during the treatment, but was able to keep working at her commercial cleaning business and take hiking trips. Her viral loads became undetectable after four weeks of treatment, which meant she was done after six months.
David Rodriguez, 32, of Nambe, also responded quickly to the drug and, after three months of treatment, was halfway through when he spoke to SFR. According to his wife, Sonia Porter, he "has his days." Porter has used her knowledge of traditional remedies to help Rodriguez through side effects such as body aches and short-temperedness, and recently a fever, which she helped reduce by having him wear vinegar-soaked socks. Rodriguez' friends who have been scared off the treatment (and may not have heard he's worn vinegar-soaked socks) consider Rodriguez courageous for attempting it.
"I have a couple of homeboys; one of them was like, 'Don't even do it. You're gonna end up dying'…I had seen one homeboy just the other day…I told him I started the treatment, and he's like, 'They wanted me to do that…Shit, bro, I heard it's a harsh treatment,'" Rodriguez says. "I said, 'You know, it is—you got your good days and your bad days—but, in the long run, it's going to be worth it.'"
While patients outside of prison sometimes need to be coaxed into treatment, inside the Penitentiary of New Mexico, they're often desperate to get on it, according to Jenny Martinez, a current PNM nurse who, concerned she could lose her job, spoke to SFR on condition her real name not be used.
"They always ask the nurses about hepatitis treatment, if they're going to get treated, if they're going to get [lab testing], and they just have to wait in line until they get an appointment. And then, when they do get an appointment, [treatment] is not done anyway," Martinez says. "[Correctional Medical Services, the private health care provider contracted with the Department of Corrections to provide inmates' medical care is] really, really, really slow on the process of getting inmates started on the treatment, and I don't know what the reason is."
Nationwide, approximately 26 percent of HCV-infected inmates were being treated with antiviral drugs at the time of a 2000 US Department of Justice study. According to state Department of Corrections Health Services Director Stephen Vaughn, 22 inmates in the New Mexico corrections system are currently receiving treatment. Since a conservative estimate of the total number of inmates carrying the disease is 2,520, that means that the state corrections department with the highest reported rate of HCV infection nationwide also has one of the lowest treatment rates, at less than 1 percent.
Martinez claims only one patient in the whole PNM is being treated with antiviral drugs, though she believes the facility is supposed to treat between nine and 12 at any one time. She says she sees many HCV-positive inmates who have high levels of the liver enzymes that correlate strongly with cirrhosis and liver cancer, yet aren't being treated.
Patricia Clark, a source who worked closely with the HCV program in the state prison system until 2008 and spoke on condition that her real name not be used, says CMS obstructed Project ECHO's efforts to treat HCV. The state not only fully funds HCV treatment, but pays the salary of an infectious disease nurse at each facility who is charged with treating inmates' HCV.
Clark says that, at the facility where she worked, the infectious disease nurse instead tended to other duties on the state's dime. Meanwhile, Clark saw files on hundreds of patients who needed treatment for HCV, some with evidence of "very advanced fibrosis" from liver biopsies done before they entered the prison system. Over a two-year period, Clark saw only six inmates start treatment.
"I was told on probably six different occasions, 'CMS is not interested in treating hepatitis C patients. It is not a priority. You need to back off,'" Clark says.
In an email, CMS spokesman Ken Fields attributes low prisoner-treatment rates to the prisoners' own reluctance about treatment, and denies that CMS screens inmates before presenting them to Project ECHO.
"If a patient requests medication therapy, that request is evaluated through a multi-disciplinary process established by the University of New Mexico…The Treatment Review Committee takes into consideration each patient's overall health status, the likelihood that [the] patient will benefit from medication therapy and other issues that may affect the patient's future health status," Fields writes.
Neither Thornton nor Arora acknowledged any problems with CMS when they spoke to SFR, emphasizing that they are grateful to be treating patient prisoners and to have access to the prisons for the Peer Education Program. Thornton says they don't see barriers to patient treatment on their end.
"We don't want to put our relationship with the corrections department in jeopardy because, if we did, it just wouldn't work out," Thornton says. "They trust us and we have this relationship, and we're treating people and we're educating people, which is what we really want to do."
Maria Romero, a former PNM and Central New Mexico Correctional Facility nurse who recently resigned but also requested SFR withhold her real name, says inmates had to have a certain viral load to even be considered for treatment by the DOC, even though Thornton tells SFR that there is no minimum viral load required for participation in Project ECHO—in fact, lower viral loads make a cure more likely.
"There was one guy—he was pretty close to end-stage [liver disease]," Romero says. "He wasn't on interferon or anything because they said it was already too late for him—I doubt it, though. One other guy, he just lived to the end on medication to control his ammonia levels. He ended up dying in the clinic there at Los Lunas."
Jacob Miller, an ex-con who spoke on condition of anonymity because he's still on parole, says he tried to get on HCV treatment at PNM without success.
"They really discourage it," Miller says. "I had hepatitis C when I went into prison, and I tried to get on the treatment and they kept putting me off and putting me off…My experience and some people that I talked to, was that the medical people would put them off, being like, 'Your [virus antibody] levels aren't that high; it looks like you're doing fine right now.'"
Jeffrey Holland, 42, an ex-con turned social worker and entrepreneur who now directs a sober living center in Albuquerque, did time at CNMCF and Southern New Mexico Correctional Facility in Las Cruces. Holland had HCV when he was in prison, but didn't undergo treatment until after he was released. He tells SFR that, based on his experience of the prison health care system in general, he knew better than to expect treatment for HCV.
"Unless you're at death's doorstep, you're not going to get that treatment," Holland says. "There's people in there dealing with cirrhosis and there's people in there who are yellow, have yellow eyes, and jaundice and all that stuff. Do I know for a fact that they're being purposely neglected? I can't say that, but let's put it this way: If you see someone like that and you're a staff member, whether they're asking for treatment or not, wouldn't you say, 'Hey, you need to go to the infirmary and get this checked out'?"
Although Project ECHO PEP Coordinator Miranda Haynes acknowledges to SFR that some DOC prisons have "long, extensive waiting lists" to get on HCV treatment, DOC spokesman Shannon McReynolds contends that there are no waiting lists, and that DOC's low percentage of patient treatment doesn't prove that the department is violating patients' rights to be free of "cruel and unusual punishment" by being denied medical care.
"The standard for measuring the Department's performance is not some statistical average but the Constitution and it is the Department's position that the NMCD is in full compliance with the Eighth Amendment," McReynolds writes SFR in an email.
McReynolds adds that, if only one PNM inmate is receiving antiviral medication, that does not mean the other inmates are being denied "treatment," which, according to McReynolds, is broadly defined to include "testing."
"Treatment also includes monitoring. So if an inmate were not receiving medication but was receiving regular testing, that would fall within the parameters of treatment," McReynolds writes.
Holland says he appreciates the public's negative perception of inmates and reluctance to provide them good medical care, but points out that, in the case of an infectious disease like HCV, prisoners' medical care also has an effect on the general public.
"You have a child molester in prison; most people are going to say, 'Yeah, so what? Let him die.' And to an extent, I can sympathize," Holland says. "But it's a cyclical thing where it's infecting people on the outside, it's infecting people on the inside. When [prisoners] get out, they're overloading the treatment out here and, when they go in, there's not enough treatment in there."
As early as next month, remaining excuses to not treat HCV will take a big hit when two powerful new antiviral medications arrive on the scene. While scientists aren't exactly sure how peg-riba works, telaprevir and boceprevir, which come in pill form, specifically target enzymes HCV needs to replicate and survive. When either new drug is administered along with peg-riba, the regimen cures 75 percent of patients with the stubborn Genotype 1 strain of HCV—in only six months.
"When we've talked to [Genotype 1] patients in the past and we told them that they had around a 40 percent change of cure, that just doesn't sound very good to many people, the way it does if you tell them you have a 75 percent chance of cure," Dr. Andrew Muir of Duke University School of Medical says. Muir is the director of gastrointestinal research at Duke and co-authored research papers on telaprevir.
"From a public health standpoint, this is a major step forward for this disease in our field. This is the first change in treatment in a decade, and it really bumps up the response rate for most Americans with hepatitis C. This is huge."
Southwest CARE Center in Santa Fe wrapped up a six-patient telaprevir trial April 25, and is testing other new antiviral treatment drugs this summer that could obviate the need for peginterferon, and injection-based HCV treatments in general.
"The stated goal of some [pharmaceutical] companies is to have what we have with HIV, a combination of three drugs in one pill, basically one pill a day, with success rates in the 80 percent range and [fewer side effects]," Dr. Trevor Hawkins, medical director of Southwest CARE Center, says. Hawkins is the principal investigator in the clinical trials.
Questions remain about how private insurance will deal with the drug—some may require that patients fail on the old drugs before getting authorization to use telaprevir or boceprevir, Thornton warns.
Nevertheless, health practitioners and treatment advocates involved with HCV issues say the new drugs "could change everything," in the words of Levin.
“In theory, we could cure everybody in the United States over the course of the next 10 years,” Levin says, “If we had the right commitment to do it.” SFR