On Saturday, August 1st, Providence marks the occasion with "C is for Cure: A WaterFire Lighting for RI Defeats Hep C."
Global impact, local reach
Hepatitis may sound like one of those far-off diseases afflicting the poor in other places. But it's much more widespread than you might think, and closer to home. Viral hepatitis affects nearly 400 million people worldwide, 150 million of them with hepatitis C. And in the United States, estimates are that between two and five million people may be infected with hepatitis C - and most have no idea.
The stakes are higher
This year, the stakes feel higher for people living with viral hepatitis and their advocates. That's because there are several cures on the market - not just treatments, but cures - this year when just a couple of years ago that wasn't the case at all. The end of hepatitis C is within reach.
Another reason the stakes are higher this year: the rate of new hepatitis C cases is on the rise, right here in the United States, even in Rhode Island. In Kentucky, the rate of new cases has nearly tripled, according to the CDC. Similar spikes are showing up wherever injection drug use is a problem. People who share needles to inject drugs are at the highest risk of catching hepatitis C. It's relatively easy to test people for hepatitis C. But unless they get tested, people who contract the disease now might not realize their liver is under attack until years, maybe decades later. That's why people sometimes call hepatitis C the silent killer.
So, we know there's lots of undetected hepatitis C out there. We have an effective test. And we have a cure. Why can't we eliminate hepatitis C?
The short answer? Money.
Drug prices soar
We have new drugs that can cure this disease in most people. But they're so expensive most people can't afford them. For instance, Gilead's drug Harvoni, one of the biggest drug launches in history, costs about $90,000 for a full course of treatment. Plus, in the United States, we don't spend much at all on prevention efforts, although that seems to be changing a bit, with new investments in substance abuse prevention and treatment from Health and Human Services (substance abuse and new cases of hepatitis C going hand in hand).
International efforts are underway to break Gilead's patent, and many countries have negotiated lower drug prices with companies. But in the U.S., Gilead can set prices as it pleases. Medicare, the health program for those 65 and up, is not allowed, by law, to negotiate drug prices (although that may be changing too). And Medicaid agencies are left to negotiate prices on their own. If they don't have a big enough patient base, why would Gilead do business? Medicaid gets an automatic discount on most drugs, but it's not much when you see the price tag on drugs like Harvoni and Sovaldi.
To cope, Rhode Island's Medicaid agency has had to prioritize who gets the drugs and who has to wait. Many state Medicaid agencies are doing this. The basic idea is that the sickest people get priority. And that's troubling to some advocates and patients, who don't like the idea they have to get sicker before they get better. Columbia University's Jeffrey Sachs just wrote eloquently about that here. Not everyone agrees with him, but the uproar over Gilead's pricing is near universal.
Gilead has told me in the past that its prices are justified by the fact that these drugs cure the disease. And several studies have come out showing the drugs are cost effective - meaning they're an improvement over the old, standard treatment and can deliver a longer, healthier life for less money in the long run. They may be cost effective, but there's only so much money in the health care system.
Out of the shadows
Perhaps the most ground has been gained when it comes to awareness, to bringing this disease out of the shadows. It's associated with injection drug use, and that carries stigma. So until recently, people weren't talking about this. But President Barack Obama issued a proclamation in honor of this World Hepatitis Day. Part of it reads:
"Today, we renew our commitment to those impacted by hepatitis and to all those we have lost to this disease. Let us resolve to break the silence surrounding hepatitis, and redouble our efforts to defeat it in all its forms."
There's nothing in this proclamation addressing drug prices, of course. That's not the stuff of presidential proclamations in a democratic, free market nation. But at least a proclamation can draw attention to an issue.