A Cure Delayed

Welcome to the 3rd Annual POSITIVELY AWARE HCV Drug Guide. A big thanks and huge shout out to Andrew Reynolds of Project Inform, for his superhuman efforts in writing and putting together this guide for the second year in a row.

As treatment continues to evolve and improve for people with HCV infection, as well as those co-infected with HIV, we have the ability to eradicate a disease which today affects between 3 and 5 million people in the U.S. alone. SVR (cure) rates are now at 95–100% for all-oral regimens that last as few as eight, 12, or 24 weeks, with little to no side effects. It’s exciting to hear the news of friends, family members, and co-workers who, one by one, are being cured of HCV.

Sadly, these live-saving and life-changing medications continue to be out of reach for most.

In “The Value of an HCV Cure,” Andrew Reynolds talks about the personal, public health, and societal benefits of a cure, and makes a strong argument that a cure should be made available to everyone living with HCV. Unfortunately, availability doesn’t always ensure access.

“There’s a difference between prescribing (hepatitis C) drugs and actually being able to get these drugs for our patients,” said Dr. Andrew Aronsohn, a liver specialist at the University of Chicago Medical Center, in a story for the Chicago Tribune dated November 16, 2014. “It’s becoming a very complicated issue.”

Federal law requires that Medicaid must make drugs from certain pharmaceutical companies available, but that access can come with strings attached. According to the Tribune article, with higher costs facing an already cash-strapped state, and states being allowed to restrict who gets access, Illinois Medicaid will only pay for treatment for the sickest patients. Other criteria such as no history of alcohol or drug abuse in the last 12 months, or requiring patients to come in for medication refills every two weeks, place additional roadblocks that are unnecessary, and, frankly, bordering on unethical. In Illinois, “a ‘once in a lifetime’ provision in the criteria means that if treatment fails, the program will not pay for the patient to try again.”

In my own experience, I have several friends who have recently been cured of HCV, and another, Doug, who just started treatment. Doug is one of the lucky ones because he’s on Medicare, but even that comes with a monthly $1,500 co-pay for just his HCV treatment. He opted to add ribavirin (and its side effects) to his regimen, which cuts the duration of his treatment down from 24 to 12 weeks, thereby avoiding three additional months of co-pays. But at a cost.

René, who’s featured on our cover, is not as lucky. Medicaid has denied his application to receive HCV therapy four times. But he will continue to persevere, and hopefully one day get access to a cure which remains elusive for so many.

Some have chosen not to wait, and are taking matters into their own hands by engaging in medical tourism. Medical tourism is an industry popping up for people who choose to travel to another country to obtain access to less expensive medications and treatments that are cost-prohibitive, or unavailable, in their own country. Of course medical tourism comes with certain obvious risks, including counterfeit medications. But there are reports of people who are successful, as in one man who traveled from Australia to India to get his entire course of treatment for HCV using generic drugs, for only $1,000.

Others, like Vermont Sen. Bernie Sanders, are asking the government to intercede. In May Sanders asked the Department of Veterans Affairs “to invoke emergency powers to make expensive hepatitis C drugs available at affordable prices to treat tens of thousands of veterans now being denied the most effective care.”

So while there continue to be barriers to access and treatment, the future is looking brighter for people living with HCV, as newer and easier-to-take medications become available. A cure is now attainable, and advocates and policy makers will continue to fight to ensure access for everyone, until one day this disease is finally eradicated, once and for all. Let’s hope when a cure for HIV is available, it’s not priced out of our reach as well.

Take care of yourself and each other.