There is a remarkable drug which treats Hepatitis C. It’s expensive, and it works, but you can’t get it until you get really sick.
By Joe Fiorito Columnist
People get sick. We have health care. Those in need get treatment. What’s the problem? Money, faulty accounting and, in some cases, morality.
I know two women, Sheryl and Celeste. They both have Hep C, a progressive disease of the liver. The manner in which they got it doesn’t matter, although it is instructive.
Sheryl is 42. She said, flatly, “Injection drug use.” How’d that happen, beyond the obvious? She said, “The larger part is being trusting. I was in my early 20’s. I trusted my boyfriend to tell me if he had anything. He didn’t tell me.”
It is just that easy — we fall in love, and we trust the ones we love or else there is no love, and sometimes the ones we love are jerks.
Celeste is 24. Her story is similar. “I knew my boyfriend had Hep C, but I didn’t check to see if he had a new syringe.” There it is again — love and trust, the speedball of relationships.
Sheryl said, “I was using heroin and opiates. It feels good. That’s why people do it.”
Celeste said, “I was 19 years old. I was using crystal meth and heroin and other opiates.”
Sheryl still uses, occasionally. “When I feel it’s out of control, I stop – people don’t know you can do that.” They know now.
Celeste said, “I used to be out of control. I was sober for two years straight. Now I’m an occasional user.”
And if you met these two women today you would not be able to tell if they have ever used anything stronger than peanut butter cookies.
What’s life like with Hep C?
Sheryl said, “There is a range of symptoms. I get brain fog sometimes. I used to think I had a learning disability. I was back in school. I’d read my notes – some of the letters were written backwards, I was losing my vocabulary. It was hard to focus.”
Celeste said, “The main one for me is fatigue.” That, plus nausea, plus muscle ache. “I need 12 hours’ sleep to be well-rested; that’s not normal.”
She also said, “I’m not on treatment yet. I’m in a support group.” But there is something much stronger than a support group. Celeste said, “There are some meds, but they’re very expensive.”
Thing is, they work. Thing is, they cost in the range of $100,000 for a 12-week course of treatments. Thing is, to get the treatment, Sheryl and Celeste are going to have to wait until they reach Stage 2, or chronic liver disease.
Sheryl said, “’Go ahead and die.’ That’s what it feels like.” Celeste said, “They assume that, because we got it through drug use, it’s our own fault. When I go to the hospital, they treat me hostile, like I’m some sort of mangy animal. The nurses, the doctors; it’s worse with the nurses.”
Medicine and morality?
A toxic mix.
But smart women don’t stand still. Their support group is fighting for help. Cheryl said, “We have some demands about equity, about training, about racism, about having the same access to health care that every person should have.”
I remind you, by the way, that just because they still use drugs they are not disqualified from medical help; there is, after all, such a thing as safe use.
But here’s what I don’t get, and it’s not about medicine or compassion: The cost of restoring health, in the case of a person with Hep C, is cheap compared to the benefits of returning a person to productive capacity – fitter, stronger, capable of doing good work and contributing to society in the form of taxes which, in the end, easily covers the cost of medication.
The cost of waiting for people to sicken?
Let’s shift gears for a moment: there is news both good and bad. The good news is that the drug patent expires in 2020, which should drop the price considerably, and make treatment affordable.
The bad news? If the Trans-Pacific Partnership, a huge multinational trade deal, is signed, then the patent for that marvelous drug will remain in force until 2034. I wonder if my two friends will be around that long.