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Advocacy Anyone? A Commentary

Outrage. Whether it’s saving the whales, or saving the hungry from starvation, advocacy begins with outrage, a sense of righteous indignation, a belief in having been wronged. And so it is with the high price of curing hepatitis C. There it is, dangled right in front of us, and it might as well be Cibola – the Seven Cities of Gold, unreachable, off-limits, a mirage, creating despair in many of us. We’ve been told, some of us, not to worry. We’re far more likely to die of something else before the virus gets us.  But my own experience tells me differently. Death by HCV came calling for me. One by one, I’ve watched my oldest and dearest friends, all part of a cluster of infection, succumb to this insidious disease.

The Wyden-Grassley Senate investigation into the pricing of Gilead Science’s Sovaldi tells us that the pharmaceutical company arrived at its price point by adopting a new marketing model: price-per-cure, and abandoning its previous model, price-per-treatment. The company’s goal: set the price for Sovaldi, known to Gilead as the first wave, as high as possible without incurring major access restrictions. This benchmark price would prepare consumers for the even higher price point of the second wave, Harvoni. Harvoni cure rates would be better than plus other preparations. More cures, higher price. At the original price point of $1,200 per pill, Gilead proclaimed the cure a bargain. Pay for it early, all at once, instead of letting the patient suffer and pay for secondary health issues linked to HCV infection. “We believe the price reflects the value of our product.”

But Gilead had made a major miscalculation: the company’s pricing brought on the very restrictions it had sought to avoid. The result: the cure was no longer a bargain. We were now destined to pay twice, and Gilead admits it arrived at Harvoni’s price without factoring in patient access to the drug. More friends will die without it.

Outraged yet? It is true – advocacy is difficult. Who wants to come out and say, “I shot up drugs. That’s how I got infected.” As long as we’re racked with guilt from our past or present behavior, we fall prey to social stigma. Even those innocents who were infected through a tainted blood supply are often suspected of intravenous drug use. There are many who say, “Relax. New drugs are in the pipeline, and on their way. Competition will force Gilead to lower their price.” An ode to free market capitalism, to be sure, but this was not the conclusion of the Wyden-Grassley report. The US Senate committee arrived at a different conclusion: Gilead had set a benchmark price for any forthcoming cures. After Sovaldi, pharmas would likely feel free to charge outrageous prices – per cure.

How about a demonstration? Demonstrations are getting noticed these days. But only a few are willing to be seen in public because of stigma, and rightfully so. No one can fault hep C patients for avoiding personal shame. So, how about this: anonymous demonstration? Costume masks are cheap, and we don’t all need to go as Guy Fawkes. But there is another problem. HCV-induced fatigue. I’ve missed advocacy events; I’ve been far less than my best because of fatigue and feeling unwell. I was often anemic, nauseated, head-achy, irritable, and mainly, in dire need of a long nap.

Perhaps we can take a lesson from the early advocates for patients with HIV. The outrage came from spouses and partners. The outrage came from love. Still, this situation was never transferable – the death of Arthur Ashe and the announcement of Magic Johnson changed the perspective of the public to one of sympathy. It’s easy to lose sympathy with HCV patients. Unlike HIV, some hep C manifestations occur far below the skin: fatigue, personality changes and a lack of motivation are common, and mostly annoying to others. “My husband/wife/partner quit his job. He sleeps all day. When he wakes up, he’s crabby and demanding. He’s lost interest in his stamp collection. If he would just do something, I’m sure he’d feel better. I think the whole thing is psychological.” Who’s going to advocate for lazy? Or, for short-term memory loss? For lacking a sense of responsibility? Are we going to show up at the Washington Mall for hepatic neuroencephalopathy syndrome? HNS? Nobody gets excited until the inevitable decline of physical health, when the options are only transplant or death.

I’m not a cynic. I’m an optimist. I believe that in these times, despite the political and socioeconomic landscape, our better angels will prevail. Folks are preoccupied with gun violence, immigration (with a heavy dose of xenophobia), and a debate over semantics (violent extremism, or Islamic terrorism?). What about viral terrorism? With 8,000 – 10,000 deaths per year, hepatitis C – okay, I’ve wandered into mild sarcasm, and politics, which I try to avoid. Lingering encephalopathy? In my current state, it’s easiest for me to talk about our problems with a renegade pharmaceutical corporation. I think I understand our problems. I’m asking you for a solution. Please, if you have insight into a possible solution to the high cost of curing HCV, post it in the comments section. Together, we can bring the cure to everyone. Advocacy, anyone?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.