The new miracle drug was Sovaldi, which then was combined with another drug to be marketed as Harvoni. Preliminary tests showed it was nearly 100 percent effective in eliminating the strain of hepatitis C that was attacking Hurley’s body. Her doctor submitted her for the trials, but she was never called up. Finally, in October 2014, Harvoni was approved by the FDA for the treatment of hepatitis C.

Sovaldi and Harvoni were developed by a company called Pharmasset, and, in a November 2011 press release, pharmaceutical giant Gilead said that they had purchased Pharmasset for $11 billion –– right about the time Hurley was first diagnosed with hepatitis C. In 2015, Bloomberg News reported that Pharmasset originally planned to charge a staggering $36,000 for a 12-week treatment, but Gilead upped that to $90,000-plus. Hurley, now having been sick for three years while caring for her daughter who had been diagnosed with autism, was on Medicaid. She went to her doctor to try to get the medication to save her life.

“I go to my doctor and said, ‘What do we do now?’ ” Hurley recalled. “ ‘It’s on the market. Let’s get it.’ She’s like, ‘OK, let’s see if you get approved first.’ I didn’t get approved. So I’m looking into why people don’t get approved. The people who get approved for any kind of program that helps with the costs are basically on death’s door. They’re already on the transplant list. They are very, very sick. They’ve already had cancer. … I don’t have $94,000. It’s insane. What’s really messed up is that [the drug] was mostly publicly funded.”


How much public funding went into the drug’s development is difficult to know. Pharmasset did receive government grants but not specifically for Sovaldi research, according to an 18-month U.S. Senate investigation into the pricing of the drug which concluded in last December. With the fungible nature of such funding, Hurley’s tax dollars most likely went into the development of the drug that she was now being denied. In an article last month, the Los Angeles Times quoted Peter Arno, director of health policy research at the University of Massachusetts-Amherst, as saying that Pharmasset “got millions of dollars in grants for research exactly along the lines of the approach that was the source of Sovaldi.”

The Senate investigation found the following: “Gilead pursued a calculated scheme for pricing and marketing its hepatitis C drug based on one primary goal: maximizing revenue, regardless of the human consequences. There was no concrete evidence in emails, meeting minutes, or presentations that basic financial matters such as R&D costs or the multi-billion-dollar acquisition of Pharmasset, the drug’s first developer, factored into how Gilead set the price. Gilead knew these prices would put treatment out of the reach of millions and cause extraordinary problems for Medicare and Medicaid, but still, the company went ahead.”

Gilead did not respond to requests for comment for this article.

Hurley was accompanied on her trip by her friend Dorian Dane. Photo courtesy Elle Hurley.

The cost to Medicaid was staggering. In 2014 alone, Medicaid spent more than $3 billion on Sovaldi. And it wasn’t just Medicaid patients who were denied the medication. United Healthcare, Blue Cross, and other insurers had similar restrictions until class action lawsuits filed against the companies for denying the medication to their insured customers prompted the companies to make the drug available to their customers.

Hurley had lost hope. Depression set in, and, knowing that she was dying, she isolated herself.

“At that point, I pretty much thought I’ve got the death sentence.” Hurley said. “At this point, I was already starting to feel sick. It messed with my head. Depression. I ended up in a hospital because I was going to kill myself. Life spun out of control. I stopped playing music. I gave up everything. I pushed everyone that I loved away as far as I possibly could because I was going to die.”

In Australia, Jefferys was facing the same harsh reality. The drug was out, but like the private insurance companies, the Australian public health service was restricting access to the drug to only people who were on death’s door.

Because of the “high cost” of Sovaldi, Jefferys wrote on his blog, “the government would not be able to make [the drug] available to everyone with hep-C. At $90,000 a treatment, with more than 250,000 people with hep-C in Australia, that would cost over $200,000,000,000 ($200 billion) and bankrupt the health system. … The government would only make [Sovaldi] available to the sickest of people.”

Due to the social stigma attached to the disease, Hurley kept her illness from everyone but close friends and family. There’s no danger from casual contact, but people were understandably frightened.

“I could see it when I talked to people,” Hurley recalled. “Their eyes would glaze over, and they’d get that look like ‘What do I know about this disease, and can I catch it? Have I touched anything that she’s touched?’ So I didn’t talk about it to people. I started really pushing everybody away.”



Early this year, Hurley received a call from her mother that would change her life. Mom had seen an interview with a man from Australia. It was Greg Jefferys. He had found a solution to his problem, and because he chose to go public and blog about his experiences, Hurley now had a solution as well.

“A typical hep-C treatment from Gilead or other pharma companies,” Jefferys told me in an email, “will cost between $60,000 and $90,000, even though the cost of making the meds is less than $100 per treatment. They take the position that people can make the choice: ‘Buy or Die.’ The other option is to buy generic versions of these drugs. These are chemically identical but cost only $1,000 per treatment delivered. This price is often lower than the co-pay for people with insurance.”