6 posts tagged “AIDS.gov”

30 Years of AIDS

Posted June 1st, 2011 by

The Federal Government and 30 Years of AIDS

On June 5, 1981, the Centers for Disease Control’s Morbidity and Mortality Weekly Report (MMWR) described the first reported cases of AIDS in the US.  Thirty years later, AIDS.gov is observing this date with a campaign called “The Federal Government and 30 Years of AIDS.”

What have we learned about Human Immunodefiency Virus (HIV) and Acquired Immunodeficiency Syndrome (AIDS) in the last three decades? And how well are we doing as a country with HIV/AIDS education, screening, treatment and research?  Hear answers from the country’s top experts during a live webcast today, June 1, at 3:00 p.m. EDT.

Sponsored by AIDS.gov (who has a guest profile at PatientsLikeMe) and the White House, this live video chat features Surgeon General Dr. Regina Benjamin, Director of the White House Office of National AIDS Policy Jeffrey Crowley, and Director of the Division of AIDS at the National Institute of Allergy and Infectious Diseases, NIH, Dr. Carl Dieffenbach. To join in, submit questions in advance, watch live at WhiteHouse.gov/live and submit live questions during the discussion on Facebook.

Here at PatientsLikeMe, we have 2,948 members who report living with HIV. Beyond what they share on their individual patient profiles about their symptoms, treatments and quality of life, they also offer their perspectives in our forum, where common topics include the psychological aspects of being HIV+ and how to approach dating post-diagnosis. What can you learn from other patients? One example is what to expect. More than 290 of our members have been diagnosed with HIV for 20 years or more, showing that living with HIV long-term is now possible.

Check out the video below featuring a member who’s lived with HIV for 25+ years.  Now with more than 35,000+ views on YouTube, this candid interview reveals how HIV awareness has evolved and how helpful it is for long-term survivors to be able to connect with others like them.

Finally, there’s a key takeaway from “30 Years of AIDS” that impacts us all: the importance of getting tested now that HIV tests (some with results in as short as 20 minutes) are readily available. According to the Centers for Disease Control, of the estimated one million people living with HIV in the US, one in five (21%) are unaware of their infection. Have you been tested recently? If not, June 27, 2011, is National HIV Testing Day. Use this handy locator to find a screening facility near you.

If you’re older than 30, AIDS came about in your lifetime. If you’re younger than 30, you’ve only known a world with AIDS. What has that meant for you – and for your generation? Share your thoughts in the comments section.

World AIDS Day 2010: Did you know…

Posted December 1st, 2010 by

Did you know today is World AIDS Day? Thanks to the many different organizations (including those like AIDS.gov) recognizing the day and raising awareness about HIV and AIDS.

Now a few years old, the PatientsLikeMe HIV community currently has more than 2,800 people with HIV sharing their health information to help others learn from their experiences. In honor of today, here’s a snapshot of what patients like you are sharing and learning about in this community.

screen-shot-2010-12-01-at-41455-pmDID YOU ALSO KNOW…

  • You can all find patients like you by searching by CD4 count, viral load, years since infection and more.
  • In a PatientsLikeMe research study published in the Journal of Medical Internet Research, we revealed:
    • 63% of HIV community members on PatientsLikeMe agreed they had better understanding of the consequences of taking a “drug holiday” after using our site
    • 23% agreed they had decided to start therapy or counseling after interacting with others on the site
    • 29% agreed PatientsLikeMe had helped them decide to start taking antiretroviral drugs
  • PatientsLikeMe research scientist Mike Massagli spoke earlier this year in a PatientsLikeMeOnCallTM podcast interview about the benefits of measuring your quality of life.  How’s your quality of life been recently?  You can measure yours too.

How are our members treating their condition?

  • Members in the HIV community are using more than 793 treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, therapies, and more.
  • The top lifestyle modifications reported by our patients includes avoiding alcohol, diet and exercise and stop smoking.
  • The most widely used antiviral drugs (or cocktails) reported by members are AtriplaTruvada and Norvir; the top 3 supplements are Multivitamins, Omega 3 Fish Oil and Vitamin C.

What are their major symptoms?

What are they talking about?

  • Some of the top topics “tagged” in our forum discussions to date include blood counts, support groups, relationships, newly diagnosed patients and side effects.