In a story Thursday, I dove into the societal implications of the new $84,000 hepatitis C treatment. There's one part I want to expand upon further: the patient experience with the drug Sovaldi.
There's a reason why Gilead Sciences' Sovaldi had the best drug launch of all time. Past treatments for hepatitis C, a disease affecting an estimated 3.2 million Americans, were at best effective about half of the time and could come with truly terrible side effects.
One person who knows this is 53-year-old Allan Hurst, whom I quoted in my original story. Hurst, who's been living with his infection for more than 30 years, went through a grueling, 48-week course of treatment in 2007 to try to cure his disease. That treatment included several oral medications, as well as a weekly injection of interferon, the source of the trouble for Hurst and many other patients.
Hurst said he took the interferon injection every Friday night and would spend the entire weekend -- and sometimes longer --recovering from the symptoms. "A flu-like hell is the politest way I can describe it," he said. "The most miserable experience of my life" was another.
He also experienced a "brain fog," often quickly forgetting where he was going or what he was doing. He had taken to carrying around Post-it notes in his home to remind him of why he left one room for another. "I felt like I was losing my mind," he said.
That was life for Hurst during the 48 weeks of treatment, plus some of the following six months it took to recover from interferon. His doctors at the time thought the was cured, but just a few months after treatment ended, they found that Hurst still had the infection. After going through the agony of interferon, Hurst was angry that the treatment didn't take — but he also knew he could wait a few years for better treatment options in the drug development pipeline.
When Hurst developed cirrhosis in December, his doctor recommended Sovaldi and another new hepatitis C drug, Olysio. The 12-week drug combination cost about $150,000, and Hurst said he experienced minimal side effects. Weeks out of treatment, Hurst said doctors believe his infection has been cured, but it will be another couple of months before they know for sure.
If his condition had allowed him more time, Hurst said he would have wanted to wait for a cheaper option. But he said he also recognized that paying for the drugs, which were shown to have cured nine in 10 people during clinical trials, could help him avoid even greater costs if he needed a liver transplant.
Amid the public outcry over Sovaldi's price, Gilead and the drugmakers' lobby have been pushing this narrative. And they hope that as more stories about patients being cured emerge — Gilead said it knows of 9,000 who have been cured so far — there'll be a greater recognition of the long-term savings from having healthy patients.
But state officials are worried about the immediate drug costs for their low-income residents. Matt Salo, executive director of the National Association of Medicaid Directors, acknowledges Sovaldi could lead to eventual savings, but state officials can't budget for that.
"It's really hard to do this upfront payment for a return that may never come and will certainly come many years later," Salo said.
I also spoke with Margaret Dudley, 62, who got hepatitis C from permanent cosmetic tattooing in 2001. Like most people with the disease, it took years for symptoms to show up. She was diagnosed in 2011 after months of feeling constantly tired.
Last year Dudley was enrolled in a clinical trial involving a combination of Sovaldi and another drug, for which Gilead is expected to get FDA approval. Dudley said the combination of drugs cured her infection.
"When I started the treatment, it was amazing. It was like being in a fog and having that fog lift," she said. But Dudley, who said she received the drugs without cost through the clinical trial, questions Sovaldi's price tag.
"Who can afford that?" she asked.