We stand at the beginning of the end of hepatitis C (HCV). The only question is how fast can we end it, and so far, it’s not nearly fast enough. For most people with HCV, waiting for a cure has been the norm. This made sense when the “cure” consisted of interferon and ribavirin: A year’s worth of treatment with potentially debilitating side effects that maybe cured 50% of people overall was not an exciting prospect, so people waited for something better. In fact, waiting was so normal that we developed a term for it, “warehousing.” Warehousing was when doctors and patients made the choice to wait for better treatment options.
And wait people did. They waited until late 2013 when the new generation of HCV direct acting antivirals (DAAs) came on the scene. Now we could talk about interferon-free regimens that were shorter, far more tolerable, easier to take, and cured 90% or more of people with HCV. It was a remarkable achievement that, in the three years since, has only gotten better with newer regimens. The wait seemed worth it and patients and their providers were ready to be cured.
Don’t give up, and don’t let perceived barriers stop you from fighting for treatment. As restrictions are lifted and more and more people are eligible for treatment and getting cured, it is our hope that this HCV Drug Guide can help you.
As remarkable as these new treatments were, equally remarkable was their price. Media articles of $1,000 pills and sensationalistic stories of the cost burden that these new treatments would have on state and federal programs set the narrative on the access to care coverage discussion, and both public and private insurance companies set up barriers to these treatments. Some of these barriers include things like rationing access to care based on severity of liver disease (fibrosis scores), or substance use abstinence requirements before eligibility for treatment would be considered. Some coverage plans would cover treatment once, but not again if the treatment failed or the person was re-infected.
The hope for a cure was denied to most people.
In the years since, patients, providers, and advocates have fought for better access. And for all of the challenges with accessing HCV medications and the barriers patients face in getting cured, there is hope. On November 5, 2015, CMS (Centers for Medicare and Medicaid Services) released a letter to all state Medicaid programs informing them of their obligation to provide people living with HCV access to DAAs, and informing them that their restrictions were likely illegal, and setting them up for lawsuits. Indeed in recent months we’ve seen lawsuits or the threat of lawsuits lead to the loosening of restrictions in Washington, Florida, and Delaware. We are starting to see some private insurance carriers lift restrictions. There is much more to do to see universal access to HCV medications for all, but progress is being made.
Don’t give up, and don’t let perceived barriers stop you from fighting for treatment. As restrictions are lifted and more and more people are eligible for treatment and getting cured, it is our hope that this HCV Drug Guide can help you. In addition to information about the drugs themselves, we’ve included new material on tips for accessing treatment, resources for patient assistance, and techniques for preventing HCV. Use the resources section to learn more, and call HELP-4-HEP (I’m one of the counselors) for individualized information and support. You deserve to be cured, and we want to help.
Finally, on a personal note: It’s an honor and a privilege to get to write this drug guide every year for POSITIVELY AWARE. One of my first jobs in public health was as an HIV treatment advocate for homeless people who use drugs in an impoverished neighborhood in San Francisco. I would sit with patients as they were getting ready to start HIV treatment, and together we would review the POSITIVELY AWARE HIV Drug Guide pages for her/his respective medications to prepare them. I’d make photocopies of the drug pages and together we would review the side effects and drug interactions and plan for how to overcome them. I can easily say that POSITIVELY AWARE played a seminal role in my professional development, just as I can easily say it helped the patients I worked with then, just as it does for people today.
And now I get to write for them. The editorial and design team here at PA—Jeff Berry, Enid Vázquez, and Rick Guasco—are as committed to ending HCV as they are HIV. We are lucky to have them as resources for our friends and loved ones affected by these diseases. I count myself lucky to work with them, and I can only hope that this HCV Drug Guide helps people with HCV and is as impactful as their HIV Drug Guide has been for me and the people I worked with, then and now.
Andrew Reynolds is the Hepatitis C Education Manager at Project Inform, and facilitates several HCV support groups in the San Francisco Bay Area. He’s also a counselor on the HELP-4-HEP HCV phoneline listed in the resources section of this issue. Call him if you have any questions about HCV care and treatment.