6 posts tagged “AIDS.gov”

Working Together for an AIDS-Free Generation

Posted November 30th, 2012 by

World AIDS Day Is Saturday, December 1, 2012

Saturday, December 1st, is World AIDS Day (hashtag #WAD2012), a time for re-upping your vigilance and awareness levels about HIV/AIDS.  The global AIDS crisis is not over until an AIDS-free society is achieved, and unfortunately, we’re not there yet.  That’s why the US theme for World AIDS Day 2012 is “Working Together for an AIDS-Free Generation.”

More than 30 years after the first reports of AIDS in the United States, approximately 50,000 Americans are still contracting HIV – the virus that can lead to AIDS – each year.  In addition, nearly 1 in 5 individuals living with HIV is unaware of his or her infection.  That’s why we can’t become complacent about HIV prevention and treatment.

Facing AIDS Is an Ongoing AIDS.gov Social Media Campaign

Join PatientsLikeMe partner AIDS.gov in “Facing AIDS.”  What can you do to help?  Start by reminding everyone you know that they can locate a local HIV testing site by texting their zip code to “KNOWIT” (566948) or using the HIV/AIDS Prevention and Service Provider Locator.  You can also set an example in your peer group by going and getting tested yourself.

Living with HIV?  Connect with the 3,000+ members of PatientsLikeMe’s HIV Community for information, support and advice.  If you know your HIV type (e.g., HIV-1: Group M: Type B), you can now search for those with the same type as you and learn from their experiences, including what medications they’ve taken and how they rate each drug’s effectiveness, costs and side effects.  From Atripla to Truvada to Norvir, discover how our patients evaluate commonly prescribed HIV treatments and read their battle-tested tips.

The point is that working together can improve care – and increase prevention.  Join the millions of Americans working towards an AIDS-free generation today.


Write, Snap and Share for World AIDS Day

Posted December 1st, 2011 by

Join AIDS.gov in "Facing AIDS" for World AIDS Day

Today, December 1st, is World AIDS Day.  30 years after the first reports of AIDS in the United States, HIV – the virus that can lead to AIDS – is still a reality for 1.1 million Americans.  Complicating matters is that fact that one in every five people living with HIV in the United States is unaware that he or she is infected.

That’s why, despite increased awareness of HIV/AIDS, we still need to do more to ensure that every American who may be at risk gets tested. PatientsLikeMe is joining the AIDS.gov initiative in “Facing AIDS” today.  This social media campaign is an easy way to show your support of The National HIV/AIDS Strategy – and it’s inspired by the current trend of taking photos while holding a sign with a message written on it.  Are you ready to join the campaign too?

As the video above illustrates, here’s how it works:

  1. Write. Download a sign and add a message about why you are “Facing AIDS.”
  2. Snap. Take a photo holding your sign and upload it to the Facing AIDS Gallery.
  3. Share. Use social media (Facebook, Twitter, your blog, etc.) to share your photo.

What else can you do?  Remind people that you can locate your local HIV testing site by texting your zip code to “KNOWIT” (566948) or using the HIV/AIDS Prevention and Service Provider Locator, which includes maps and directions.   Also, check out and share our video about how one member has faced HIV/AIDS for more than 25 years (it has 40,000+ views on YouTube so far!), and if you’re a PatientsLikeMe member, subscribe to AIDS.gov’s profile page for updates.

Only by facing AIDS can we prevent it.


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.

PatientsLikeMe Facing World AIDS Day 2009

Posted December 1st, 2009 by

Join AIDS.gov in Facing AIDS for World AIDS Day. December 1, 2009Every December 1st, we join hands with the HIV community at large in recognition of World AIDS Day.

The theme of World AIDS Day this year is leadership — a fitting theme for the 2500+ patients who are leading the way through openness in the PatientsLikeMe HIV community.  These leaders have chosen to share their health data and their personal stories of living with HIV, not only to manage their own disease, but also to help better the lives of others with HIV.

For 27 years, HIV/AIDS has been a global epidemic.  Today, our online community has a few thousand patients whose experiences of living with HIV run the gamut – from the newly diagnosed to those who were infected long ago.  Approximately  334 patients (or 12% of our community) indicate they were infected with HIV more than 20 years ago (such as BrightonBear, an early member who shared his story with us in this interview).  Similarly, 84 patients indicate on their profiles that they have been living with AIDS for more than 15 years.  All of these members have a lot to share – both through data and conversation – about how they continue to face the symptoms, treatments and side effects, and stigma of living HIV-positive.  There are also members who are new to HIV, with 162 patients in our HIV Community indicating they were diagnosed less than 2 years ago.  Our patients, both newly diagnosed and veterans in the HIV community, are true leaders – openly sharing their real-world health data and personal stories about living with HIV.  Here are some interesting tidbits the community is sharing:

  • How are patients like you evaluating the most popular treatments used for HIV? See what they say in our treatment reports about Atripla, Ritonavir, and Truvada.
  • Ever heard of Coconut Macaroon Cookies used to “treat” HIV? A handful of PatientsLikeMe members cite it as a great way for patients to curb their diarrhea, a common side effect of their cocktails.
  • That numbness in your hands and feet could be peripheral neuropathy, a common symptom in HIV. Patients are discussing treatments ranging from prescription drugs to lifestyle modifications to lessen the effects.
  • Some of the most discussed topics patients in our forum include specific treatments (i.e., Atripla and Truvada) and side effects, common symptoms (like fatigue) and other quality of life issues like depression, relationships, dealing with a new diagnosis, and coping.

For the past two years, PatientsLikeMe has worked in cooperation with AIDS.gov, a government media program committed to improving the lives of patients with HIV.  Check out their “Facing AIDS” photo campaign in honor of World AIDS Day.

Thank you to all of our members who continue to share and learn. It’s you who are leading the way.

PatientsLikeMe member mcotter


It’s National HIV Testing Day

Posted June 27th, 2009 by

Today – June 27, 2009 – is National HIV Testing Day.

AIDS.gov, the one-stop access to U.S. Government HIV/AIDS information and an organization PatientsLikeMe collaborates with to raise awareness of HIV, has been running a campaign all month to promote National HIV Testing Day.  As part of the campaign, AIDS.gov launched the “I Know. I Took the Test” blog series, featuring videos and stories of people talking about what taking an HIV test means to them. The series highlights several HIV testing story campaigns from organizations such as the National Association of People Living with AIDS Exit Disclaimer, POZ Exit Disclaimer, Southern AIDS Living Quilt Exit Disclaimer, The Positive Project Exit Disclaimer, and others.

In support of this campaign, PatientsLikeMe recently invited members of our HIV community to tell us in a few sentences about their experience and/or thoughts about HIV testing.  Here’s what they had to say:

“I think it is probably the single most important thing a person can do for him/herself. The test will show if a person is infected, important knowledge no matter how it turns out.”

“Getting tested for HIV is so important. The knowledge of knowing can make a difference as to how you will live your journey in life.”

“Being tested for me caused me to change my outlook on sex, changed my life in such a way that gives me a opportunity to speak on the importance of being tested , and to share information about treatment, and that there is a life after testing takes place.  If we ever what to see an end to this very serious problem across the world we must continue to speak and encourage testing  in all walks of life.  Moot for me I think not, important to get the word out yes,yes, yes.   Experience is the best teacher.”

“I agree that experience is our best teacher. If you haven’t experienced things how could you give advice?”

“Knowledge is power, knowing your HIV status truly allows you to start living a healthier life, whether you’re are positive or negative.”

Want to know more about how to spread the word on HIV testing? Check out the latest promotions at AIDS.gov and, as always, feel free to share your own experiences there and with PatientsLikeMe.