'Speak out, patients'

Last modified: 6/24/2012 12:00:00 AM
In court papers, they're called John or Joe Doe. The news describes them only by their age, their gender and, perhaps, their hometowns. We know their numbers - 19 at least - but not their names.

So much of the hepatitis C outbreak linked to Exeter Hospital has been mysterious, including the identities of its victims. Why? Because these people are shocked, confused, probably mad as hell and learning that they, like millions of other Americans, are infected with a disease that carries a brutal stigma.

I know the ramifications of an HCV diagnosis firsthand. In 1978, a few hours after my premature birth, I contracted the virus through a tainted blood transfusion. Since then, I have contended with ridicule, misinformation and social hardships related to the disease, which can cause life-threatening liver damage but is fairly difficult to transmit in the course of daily life.

Two years ago, after decades of avoiding situations that would force me to reveal my condition, I decided to document the HCV epidemic and my attempt to treat the virus through a clinical trial in a series published in the Monitor.

Writing those stories was one of the scariest things I've ever done, but divulging my diagnosis in such a public way has been a largely positive experience. To borrow a term from the gay and lesbian community, I came out. And, in doing so, I stripped the virus of the power it had held over me for so long. Hepatitis C became simply a medical condition, a stroke of bad luck, something to be watched and someday, hopefully, cured.

But the stigma persists, as illustrated by the anonymity surrounding the Exeter Hospital patients who public health officials say contracted hepatitis C after an infected hospital employee misused syringes filled with pain medication. It's a horrible situation, one that's weighed on me for weeks. I sympathize with the victims, but I'd also like to present them with a challenge:

Speak up. Come out. Tell us your names. Help prove that HCV, while a serious medical condition, should not be a source of shame. Disclosures by patients like us will weaken the stigma. They're also a crucial step toward having the kind of rational conversation necessary to control this widespread and expensive epidemic.

For whatever reason, we assign moral values to disease. We cast people who have certain illnesses, like breast cancer or Parkinson's, as heroic warriors waging battle against human frailty. Those of us with other conditions - mental illness, addiction, AIDS, hepatitis C - are often seen as suspect, somehow deserving of our afflictions.

These preconceptions are subtle, as ingrained in our psyches as stereotypes about race or gender. They're seldom malicious and all of us - myself included - are subject to them. They make us uncomfortable and unwilling to have the kind of conversations that will improve patients' lives.

The secrecy surrounding HCV has big consequences. Public health officials have long struggled to determine how many Americans have HCV, but most estimates put the figure somewhere between 3 million and 4 million.

It kills about 10,000 people in this country each year, and that number is expected to triple in the next 20 years as more carriers reach end-stage liver disease. Nearly 80 percent of people with hepatitis C have yet to be diagnosed.

Such ignorance brings staggering economic costs. The longer people are infected, the more difficult - and expensive - it becomes to treat the virus. An actuarial report released in 2009 estimates that HCV patients in the U.S. require about $30 billion in medical care annually. The price tag will grow over the next two decades, according to the study, costing public and private health insurers $85 billion a year by 2027.

The numbers associated with the HCV epidemic are dizzying, but I believe that small acts - like debunking rumors, smashing stereotypes and disclosing your infection - can make a big difference.

In the weeks since the Exeter outbreak became public, some of the newly-infected patients have inched their way into the spotlight. On Thursday, one of the 44 people who have joined a class action suit against Exeter Hospital spoke a press conference. His face appeared on TV and alongside news stories in print and online, but he asked to be identified as "John Doe Number One." Earlier this month, the Portsmouth Herald quoted the son of William Rooney, a Seacoast man who has struggled with mounting health problems since he was diagnosed with HCV.

Rooney's son, the Herald reported, wanted "the public to know what the victims and their families are going through."

That's my goal, too. Everyone needs to understand that hepatitis C is a virus that afflicts human beings. Real, live human beings, with names, faces and stories to tell.

(Meg Heckman can be reached at 603-369-3313, by email at mheckman@cmonitor.com or on Twitter at @meg_heckman)

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