The Value of Openness by PatientsLikeMe ®

Last Friday we kicked off our new weekly podcast series called “It’s Friday – Let’s Journal Club.” Thanks to everyone who tuned in. This week’s guest interview is with Dr. Kevin Dykstra, PhD, who is President and CEO of qPharmetra, a pharmacometric consulting company. Dr. Dykstra stopped by PatientsLikeMe headquarters to talk to our team about the use of modeling and simulation to aid drug development.

After this insightful “Journal Club” session, PatientsLikeMe’s Aaron Fleishman sat down with Dr. Dykstra to learn more about how his team is working to measure the clinical utility of treatments in a systematic, quantitative way. Listen in to hear what exactly that involves and why Dr. Dykstra feels PatientsLikeMe is a “treasure trove of information” that is “incredibly useful” for both patients and drug developers

Today, July 28th, marks the first official World Hepatitis Day sponsored by the World Health Organization (WHO) and the World Hepatitis Alliance (WHA). Hepatitis kills more than one million people each year, while millions more suffer acute sickness or long-term ill health. The goal of this new event is to raise awareness of this global health issue while increasing prevention and control efforts.

Specifically, World Hepatitis Day focuses on hepatitis B and hepatitis C, which are both viral infections. Approximately 1 in 12 people worldwide is living with chronic hepatitis B or C, which represents a far greater prevalence than better-known conditions such as HIV or cancer. Yet hepatitis remains poorly known and understood, and the majority of those infected are unaware. Hopefully that can begin to change. With that goal in mind, here are a few quick facts to help raise your knowledge.

Did you know that…

• …there is a vaccine available for hepatitis B that is effective in approximately 95% of cases?
• …both hepatitis B and C can be transmitted through sharing household items such as razors and toothbrushes?
• …these viral infections are considered “silent” because many people experience no symptoms for years?
• …if a hepatitis B infection doesn’t resolve on its own and becomes chronic, it can cause liver cirrhosis or liver cancer? And a liver transplant may be needed?
• …hepatitis B can be spread through unprotected sexual contact, while hepatitis C is contracted through blood-to-blood contact only?

If you didn’t know a few of these facts, learn more about viral hepatitis and how it can be prevented and diagnosed today. You can also learn firsthand from our hepatitis patients here at PatientsLikeMe. As of today, 156 members report hepatitis C while 41 patients report hepatitis B. In both conditions, Prograf, an immunosuppressant drug used to prevent organ rejection following an liver transplant, represents one of the most commonly reported prescription medications while men represent a higher percentage of our membership: 62% for hepatitis C and 63% for hepatitis B. There are also more than 600 discussions of hepatitis across 29 different forum rooms at PatientsLikeMe.

Are you living with chronic hepatitis B or C? Break the silence and share your story in any language on the WHA’s global “Wall of Stories.”