Tom Limes was a desperate man in 2013. Hepatitis C had scarred his liver so badly, he needed a transplant. If he didn't get one, he would die.
But then in June, the phone rang.
It was a doctor from the University of Colorado asking if he wanted to join a study on a new hep C treatment called sofosbuvir (Sovaldi).
Limes, of Aurora, CO, was a perfect candidate. He had the right type of the virus (genotype 2), the amount of it in his blood (his viral load, as doctors call it) was off the charts, and previous treatment with interferon injections and a pill called ribavirin didn’t help.
If he accepted a spot in the trial, Limes would take sofosbuvir and ribavirin pills for 12 weeks, in addition to weekly interferon shots. The hope was that he’d be cured quickly.
Limes jumped at the chance.
“It was either that or die,” he says.
Just 4 weeks later, the hepatitis C he had lived with for decades was completely gone.
A Revolution in Hep C Treatment
More than 3 million Americans have a long-lasting hepatitis C infection. Most don’t know it, because there usually aren't symptoms.
Sofosbuvir was one of the first direct-acting antivirals (DAAs) to target hep C,the viru a disease spread through direct blood-to-blood contact. DAAs work in different ways to stop hep C from making copies of itself.
These drugs are kinder and gentler than the old standard of care -- interferon shots and ribavirin alone. That route could take as long as a year, it only cured about half of the people, and the side effects were brutal.
“Imagine taking an injection and a pill that made you feel -- every day -- worse than you ever felt from the infection that was being treated,” says Alexea Gaffney-Adams, MD, an infectious disease specialist in Smithtown, NY.
Side effects included flu-like symptoms, joint pain, anemia, and depression.
Limes says the old treatment felt like pouring gasoline into his system. “It was like killing me to keep me alive.” In fact, it made his hep C worse, so his doctors took him off it.
Today’s therapies are pills only and don’t need interferon. They have very few side effects and double the cure rate -- to 90% to 100%. They work in as little as 8 or 12 weeks.
“My [folks] who had been on the older regimens -- and failed, and now have the luck of being able to experience these new medications -- can’t believe the difference,” says Gaffney-Adams.
The FDA has approved several DAAs. Some fight several hepatitis C genotypes. Some work on all six.
These so-called pan-genotypic DAAs simplify treatment, says Amesh Adalja, MD, an infectious disease specialist and senior associate at Johns Hopkins Center for Health Security in Baltimore.
This means more primary care doctors -- not just specialists like liver doctors or infectious disease experts -- may be able to treat people with hep C easily. It’s possible hepatitis C treatment will be handled by your family doctor just like high blood pressure is today, he says.
Deciding on Treatment
You and your doctor will figure out the best therapy and how long you’ll need to take it based a few things. These include:
- Your genotype
- The condition of your liver
- Other health problems you may have
Your doctor will monitor you and test your blood to see if the virus is gone. About 12 weeks after treatment ends, you’ll be retested to see if it’s still undetectable. If it is, that’s called sustained virologic response -- a cure. Nearly all of people will stay virus-free for the rest of their lives.
If you’re not cured, your doctor may suggest trying again or waiting for new drugs to come out.
Thankfully, Limes was cured. He completed the 12-week treatment and is still virus-free more than 4 years later. His liver has healed, and he’s never felt better.
“I’m almost 60 years old, and I’m running circles around kids at work,” he says.
When these new drugs first came out, the sticker price was huge -- reaching almost $100,000 for some therapies. Some insurance companies and state Medicaid programs balked. Only the sickest people got the drugs.
But the situation is getting better, Gaffney-Adams says. Some of the newer meds are less expensive, and the prices of others are coming down.
“Certainly, I have had to fight less hard to get prior authorization last year (2017), versus a couple of years back when they first hit the market,” Gaffney-Adams adds.
More state Medicaid programs are expanding coverage to folks with hep C regardless of the condition of their livers. Medicare covers the drugs through Part D benefits.
In 2016, the Department of Veterans Affairs began treating all vets in its health system who have the virus, thanks to more funding from Congress and lower prices.
Adalja believes the cost discussion needs to be reframed. The drugs are a cure for hep C, which is a leading reason for liver transplants, he explains.
“You can’t look at the price of hepatitis C drugs and compare it to aspirin. You have to compare it to the cost of liver transplantation. When you look at the full context of how these drugs are going to impact the future of hepatitis C and the future of liver transplantation, basically, they’re priceless.”