PatientsLikeMe, the leading treatment and outcome sharing community for people with life-changing conditions, announces a new community for people with HIV and AIDS. With more than 650 members to date, patients can keep a pulse on the progression of their disease over time and compare their experience to others like them. Each patient’s personal health data (including CD4 count and virus load histories) is displayed in charts and timelines that are then openly shared with other members. In a review of the debate regarding sharing personal health information online, renowned journalist Thomas Goetz recently featured PatientsLikeMe in the New York Times Magazine article entitled, “Practicing Patients.”
“In this disease where there has traditionally been a high level of stigma for being HIV positive, we have found that people are surprisingly open to sharing their data,” explains Co-founder and President Benjamin Heywood. “By sharing information, members can vividly see the benefit of taking their medications consistently and how it can impact their quality of life.”
In a video series released today, PatientsLikeMe member, BrightonBear, shares his personal story of living with HIV for more than 25 years. One of the first to be diagnosed in the United Kingdom, BrightonBear has never had an HIV-related illness. He joined the PatientsLikeMe HIV community in an effort to find another person like him.
“I know I am incredibly lucky and unusual having never had an HIV-related illness in all this time,” says BrightonBear in the video. “I still share the same fears that other people have. Just because I’ve lived with 25 years with this and not been unwell doesn’t mean I don’t worry about the day that I’ll become unwell.”
The series also covers other topics, including the pros and cons of openly sharing health information online in a disease area that carries as much stigma as HIV. The videos are available on the PatientsLikeMe blog (http://blog.patientslikeme.com) and YouTube (www.youtube.com/PatientsLikeMeHIV).
PatientsLikeMe® (www.patientslikeme.com) is the leading online health community for patients with life-changing conditions. PatientsLikeMe creates new knowledge by charting the real-world course of disease through the shared experiences of patients with ALS, multiple sclerosis, Parkinson's disease, HIV, mood conditions (including depression, bipolar, anxiety, OCD and PTSD), fibromyalgia, chronic fatigue syndrome/myalgic encephalomyelitis, epilepsy and organ transplants. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world. PatientsLikeMe endeavors to create the largest repository of real-world disease information to help accelerate the discovery of new, more effective treatments.