By Alex Distefano
By Scott Snowden
By Anna Merlan
By Steve Almond
By Jena Ardell
By Jon Campbell
By Alan Scherstuhl
By Tessa Stuart
"There are a lot of ignorant people on the job," says an infected police officer we'll call Nick. "They'll treat you like a leper if they find out." To avoid this fate, Nick has told hardly any co-workers about having the virus. Nevertheless, his illness has been hard to hide. Diagnosed as being in the second of four stages of hepatitis C, which means his liver is already scarred, he says he's been constantly fatigued to the point of being unable to work. After more than a year of feeling under the weather, during which he found himself trapped in a building alongside the twin towers on September 11 ("Try running from the collapsing World Trade Center when you're feeling weak," he jokes darkly) and working as much as 60 hours a week right after the attacks, Nick went out on sick leave in December. But when he went before the medical board in January, it acknowledged his hepatitis infection but denied him a line-of-duty disability designation.
What's more, like so many others with hepatitis C, Nick has been struggling with the exorbitant cost of medication. The newest drug regimena combination of interferon and ribavirin that fully removes the virus in slightly more than half of the patientsis more effective and more tolerable than previous treatments. But the drug combo costs some $26,000 a year, making it a financial burden for some and fully out of reach for others, even among the insured. Police officers, who receive prescription benefits through their union, have a $5000 annual cap on drug costs for each family, a limit Nick says he hit in just two months.
The cost of the new drugs exceeds the limit of many other insurance plans, as well. "The cap is a huge issue," says Douglas Dietrich, chief of gastrointestinal disorders and liver treatment at Cabrini Hospital. Insurance companies "are always trying to find some excuse not to pay for it," Dietrich says. And Medicaid doesn't pay for the test necessary to determine the level of virus in the blood, which costs about $150.
Without much information about the disease or an inexpensive way to be tested, most people with hepatitis C still don't know they're sick. Among police officers, firefighters, and emergency workers, who represent just a tip of the iceberg of New Yorkers afflicted with the virus, there are undoubtedly thousands of infections still undetected. When firefighters in Philadelphia underwent department-wide testing for hepatitis C recently, 130 of 2100 tested positive; at that rate, New York City, which has a police force of nearly 40,000, could have some 2500 infected officers. Both Michael and Nick say they know others on the force who are infected but afraid to come forward.
Indeed, while a dozen police officers with HIV on the job have formed a support group, those with hepatitis have remained largely closeted. The relative obscurity of the disease ends up making it particularly damaging. About 20 percent of people who come in contact with the virus rid themselves of it on their own, but without treatment, the rest develop hepatitis, often without recognizable symptoms. As many as 50 percent of those go on to develop serious liver problems, including cirrhosis and cancer.
Because such deadly outcomes could likely be avoidedor at least delayedby the new drugs, the disease is also ripe for activism. "We're like 10 years behind HIV with hepatitis C," says Dietrich, who blames the lack of attention on the fact that, like HIV, this virus strikes drug users and other disadvantaged groups. "People with hepatitis don't have a lobby like the people with HIV do, even though there are four times as many people with this virus. The huge number of people may be the reason the medical establishment is trying to not pay for this."
Officers with hepatitis have their own theories about why the disease is proving a sticking point within the police department. Some say the reluctance to treat hepatitis C as a real occupational disability is a sign of discomfort with a virus that is often associated with drug use and sex. Others say it is to a simple matter of finances. A more charitable view is that the police department is merely slow to adjust its medical system, which is usually faced with more traditional line-of-duty injuries. "If I had blown out my knee, the city of New York would pay for that, no problem," say Nick. "But when you get an illness, it's usually not job related, so there's no mechanism in place for care."
Whatever the explanation, the fact that some of New York's finest are unable to find sympathy for their condition suggests the even greater suffering endured by the majority of people with hepatitis C. As many as a third of homeless are estimated to be infected, though they are rarely diagnosed, let alone treated. And despite a 2000 ruling that prisoners have a right to the new treatment, Maddy DeLone, a lawyer at the Legal Aid Society's Prisoners' Rights Project, says many still don't get it because of a loophole in New York's policy that requires prisoners to have a sentence of at least a year in order to receive treatment.