The Value of Openness: The PatientsLikeMe Blog

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 , POZ , Southern AIDS Living Quilt , The Positive Project , 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.

World AIDS Day is a milestone in so many different ways.  It has marked the persistence of HIV and its impact on our world, but we hope that we are approaching a turning point where World AIDS Day will come to mark progress.

What this day marks, however, is that being HIV positive doesn’t mean one will automatically get AIDS anymore.  People are living longer and medications continue to improve the health and quality of life for people with HIV.  There’s still a long way to go, but progress is being made.

A year ago on this day, the PatientsLikeMe HIV Community was open to a small group of beta-testers, and one of them asked in the Forum if people in the world-at-large even take notice of this day, or have any idea what it means for people with HIV?  Now, we have over 1,600 patients who are sharing their experience, giving each other needed information and support.  And they are using PatientsLikeMe to empower themselves to show the world on World AIDS Day and every day that there is life with HIV.

To learn more about our online community, check out our “2008 HIV Community Report:  Embracing the Positive.”

You’ve spotted us again!  This weekend, PatientsLikeMe was a proud sponsor of the AIDS Walk/Run at Grant Park in Chicago on September 20, 2008.  The event, benefiting the AIDS Foundation of Chicago and 70 other local organizations, brought together more than 7,000 people on this warm, sunny day to show their support in the fight against HIV/AIDS.  Together, participants raised a projected $400,000 for AIDS-related services.

David Williams, Catherine Brownstein and I were at this event, and we were thrilled to meet so many great people, including one of our current members.  As we saw at the AIDS Walk in Boston, there were an overwhelming number of support groups and organizational leaders there dedicated to helping patients.

The PatientsLikeMe HIV community, in particular, was met with great enthusiasm.  Our booth visitors loved that we had social networking components on the site, but were more excited about the patient profiles and treatment reports.  We displayed sample profiles to show how members can chart their treatments, symptoms and outcomes (like CD4 counts and viral loads), and use that information to find others exactly like them.  Many people had heard of websites that offer a place to chat with others, but this health data-sharing approach was new and interesting to all.  Let’s just say heard a lot of  “wows,” which is always exciting and validating for us.

If you’ve been following our blog, you’ll notice that we’ve been out and about quite a bit this Fall spreading the word about PatientsLikeMe.  We’ve exhibited and presented at many events, including the Young-Onset Parkinson’s Network Conference, DBSA Annual Conference, MS Challenge Walk and now the AIDS Walk Chicago.  We hope those we’ve met will find their way to our site, and share their stories, their health data, and their passion for advancing the knowledge of these conditions.

We’ll be here – our community arms wide open.

Are you on Facebook? We are! Simply search for “PatientsLikeMe” to find our new company page. Once there, click “Become A Fan,” and a “My Pages” link will be added to your profile. Remember, Facebook is an open platform that anyone can view and isn’t part of PatientsLikeMe. Therefore, any information you share about you is open to the 100 million Facebook members. Thanks for spreading the word about us to your Facebook friends.

Currently, our Facebook page features photos from the AIDS Walk Boston, which drew over 20,000 participants and raised $1.2 million. We were proud to be a sponsor of the Wellness Festival that accompanied the successful June 1st event. Where can you see us next? We’re a sponsor of the National Parkinson’s Foundation’s 6th Annual Young-Onset Parkinson’s Network Conference, August 7th-9th in Atlanta, Georgia. Staffers Paul Wicks, a speaker at the conference, and Maureen Oakes will be present.

Recently, PatientsLikeMe opened a community for people affected by HIV, our first outside the area of neurological diseases. Since then, we’ve gained some 700 patients in the community, including a member who goes by the name of “BrightonBear.” His experiences are quite unique as he’s been living with HIV for more than 25 years and has seen first-hand many of the tremendous changes that have happened in that time. Through my conversations with him, I’ve had to revise a lot of my views about HIV.

Part 1

Part 2

A few years ago, I did my PhD on the psychological impact of Amyotrophic Lateral Sclerosis (ALS, or more commonly called Lou Gehrig’s disease); a mysterious and rapidly progressive condition with no effective treatment and little public recognition. In examining other disease areas, I would sometimes look over the fence to other conditions to get a glimpse of what the future could be like. My hope was that one day, with a lot of work, we could replicate in ALS the great medical success story that has been HIV. In just 25 years, survival time has gone from being very brief to being effectively normal. The mechanism of the virus is well-understood, and as long as people have access to treatment, the problem is solved. Right?Through talking to BrightonBear I’ve learned that things are rarely so simple! Whilst anti-retroviral drugs have undoubtedly been a great scientific discovery, they require an almost obsessive level of compliance to avoid the development of drug-resistant strains. The problem is: if a drug regime doesn’t fit with a person’s lifestyle (say he/she does shift-work for instance), it’s going to be very hard for that person to stay compliant. It’s also worth pointing out that many people with HIV never feel sick, except for the side effects of the medication. So, here you have people living with HIV who feel well, but are being told they have to be 100% compliant with meds that made them feel nauseated, fatigued, or even change their appearance. If they decide to take a break from their meds for a while, they may feel much better as they’re no longer experiencing the side effects, but they risk developing drug-resistant strains of the virus whilst they do so. This is a very tricky and counter-intuitive balance to maintain.What’s really interesting to me as a psychologist though are the psychological issues that affect people with HIV. A positive test could have a massive impact on past, current, and future relationships. It can cast a cloud over happy memories of past relationships, introduce issues of trust and intimacy in current relationships, and present a real challenge in forming new ones. When I was first researching HIV, I was surprised to come across special dating sites just for people with HIV; where people could find others who would not be as judgmental or prejudiced about what it’s like to live with the virus. Today, people are turning to social networking sites. AIDS.gov is also hosting a blog series about how people with HIV and AIDS are using online communities to connect with one another. PatientsLikeMe is profiled on the blog this week, along with interviews from some of our members.

The message that comes across to me most strongly, however, is that HIV is still here. Sometimes it feels like the media has decided that HIV is a story that’s been resolved; science found the cure, so roll the credits and let’s all go home. But, in my opinion, we need to shift our views and understand that whilst we’re no longer confronted by images of people dying from HIV, the people living with HIV still need our support. I’m very grateful to BrightonBear for sharing his experiences with us, and helping me and many others understand that the story of HIV is far from over….