“CDC estimates that 55 percent of adults – and 28 percent of adults with a risk factor for HIV – have not been tested. Too many people living with HIV are being tested and diagnosed too late to take advantage of effective HIV treatment and prevention options.” - Dr. Kevin A. Fenton, Director,
CDC’s National Center for HIV/AIDS Prevention
Today is National HIV Testing Day, now in its 17th year. Given that 1.2 million Americans are living with HIV and one in five is unaware of his or her infection, the goal of this annual event is to promote regular testing and early diagnosis.
If you haven’t gotten tested recently, here are three quick ways to locate a testing center near you:
Visit HIVtest.org to find locations and learn about different tests.
Send a text message with your zip code to KNOWIT (566948).
Scared to take the test? It’s perfectly understandable. But there are good reasons to do it. If you test negative, you can be certain of your status. If you test positive, you can begin receiving specialized care and treatment to help you stay healthy. You can also look to the 3,000+ patients in PatientsLikeMe’s HIV community for information and support.
Today, we continue the series by highlighting examples of the choices patients like you have made in the past twelve months (pulled from 2010 newsletter interviews).
Patient Choices About…
Being Open
“I decided to make my profile public with the hope that something I have experienced, have done, or could say may help someone else along the way. Because my family seems to still live with the stigma of HIV/AIDS and prefer I don’t allow others close to our family to know of my status, I guess maybe in a way it is my subconscious defiance to my family’s fears.” – memyselfandHIV
Staying Active
“I imagine that by running the races I do, and talking to people about the benefits of a healthy and active lifestyle, that I might motivate a few people to become more active themselves. I mostly want people who like me have MS, but are still capable of being active, to know that it might help their symptoms and make them more comfortable.” – Ramilla
Making Lifestyle Changes
“I can’t drive under no means because where I live you need to be seizure-free for five years and I never am. So that’s a challenge having to depend on people or public transportation. Plus, where I work my co-workers aren’t as understanding as people were when I was a child.” – Blueeyedgoddezz
Tackling Challenges
“My biggest challenge of late has been to deal with my newly diagnosed diabetes. I am fortunate, because it was discovered in the early stages, so I’m doing quite well controlling my glucose levels. I’m learning to accept that there will be some high readings, rather than stressing over them, since my doctor is very pleased with my progress.” – Dirty Butter
Retiring
An interview with AlwaysLearning on her choice to retire from teaching.
Posted by Lori Piscatelli Scanlon | December 1, 2010
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.
DID YOU ALSO KNOW…
You can all find patients like you by searching by CD4 count, viral load, years since infection and more.
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.
Some of the top topics “tagged” in our forum discussions to date include blood counts, support groups, relationships, newly diagnosed patients and side effects.
Posted by Lori Piscatelli Scanlon | December 31, 2009
As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year. Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months. Wishing you all a Happy New Year!
Community Milestones
This year, the 15+ disease communities at PatientsLikeMe became an online home to more than 50,000 members. The fibromyalgia community was expanded this past fall to include patients with chronic fatigue syndrome, and we announced a new community scheduled to launch early next year for people with epilepsy. In addition to celebrating our communities’ awareness days and months within the site and right here on the blog (including Fibromyalgia Awareness Day, MS and PD Awareness Months, National HIV Testing Day and World AIDS Day), many of our members also participated on PatientsLikeMe teams in walk/run efforts to raise awareness and money in the name of their disease. Congrats to the 40+teams walking at events to support non-profit organizations like ALS Association, National MS Society, NAMI, Parkinson’s Alliance, APDA, and the MS Society of Canada. The real-time sharing and learning happening on PatientsLikeMe was also highlighted in the report series called The Patient Voice (starting with inpatient therapy for people with Mood conditions). Check out highlights from all these programs on these videos from the Fibromyalgia, Parkinson’s, Multiple Sclerosis and Mood communities.
“I find this site so beneficial in looking for the tools to cope with the disease. People post research and real-life patient experiences of current trials and treatments. Hope is a major focus of PLM and I encourage others to join. We are strong in numbers and we have a voice.”
“PLM is a wonderful way to express what and how to live with this disease. It has changed my life for the better, have met wonderful individuals and we have shared, cried and grown by reaching out and expressing from our hearts, have made wonderful friends and have learned so much.”
Throughout the year, the team has also shared insights via videos (like this series on the history of ALS or a recap of a study on the antidepressant Amitriptyline) and various presentations (such as an overview of our work at the at Eurordis AGM in Athens and updates on our lithium study at the International ALS/MND Symposium). In addition to working on the development of our new communities, the team took additional steps to incorporate genetics into the PatientsLikeMe platform. By participating in new partner studies (such as 23andMe and NEALS) and utilizing new product upgrades, including the launch of the Genetic Search Engine, patients are learning more about their condition and coming closer to answering the question: “Given my status, what is the best outcome I can expect to achieve, and how do I get there?”
Keep your eyes out for more to come in 2010 as our R&D team rolls out more insights and outcomes measurements (like the Quality of Life scale in HIV), more improvements to the PatientsLikeMe platform, and cutting edge research in the peer-reviewed scientific literature.
The Business Side
As Ben said in a recent blog post, “we can’t have a business without you [the patient] and our communities can’t exist to help patients without a business.” Throughout the year, the PatientsLikeMe executive team traveled around the world to present to industry partners, researchers, healthcare professionals and government leaders about the power of real-world patient data-sharing. Here are some highlights from ’09:
Government: Piloted in our MS community this year, PatientsLikeMe members now have the ability to voluntarily report adverse events directly to the FDA; in fact, Jamie recently presented about adverse event reporting at an open FDA hearing on the “Promotion of FDA-Regulated Medical Products Using the Internet and Social Media Tools.” PatientsLikeMe was also one of the collaborating organizations responsible for writing the Declaration of Health Data Rights and launching HealthDataRights.org this past June. Finally, Jamie testified before the National Committee for Health and Vital Statistics, and gave an exciting rapid-fire presentation on the future of medicine at the Gov 2.0 Summit.
Innovation: As a leader in Health 2.0, PatientsLikeMe executives are often asked to speak at various industry events. Check out photos of Ben speaking at The National Summit and stay tuned for videos from Jamie’s presentation at TEDMED and David’s presentation at Bil:Pil. You can also tune in to our live event tweets on the PatientsLikeMe Twitter account in 2010.
Media Highlights: PatientLikeMe members, data and executives were also featured in media mentions throughout 2009, including WIRED, Forbes, U.S. News & World Report, Fox Business Live, Newsweek, New York Times, as well as Seed magazine, Nature Biotechnology and Neurology Today.
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.
Posted by Lori Piscatelli Scanlon | September 24, 2008
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.
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….
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.
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Conferences/Events, HIV/AIDS, Openness 
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In a recent series on patient choices, we’ve highlighted a lot of the decisions patients like you have to make on a daily basis. A few weeks ago, 
our members also participated on PatientsLikeMe teams in walk/run efforts to raise awareness and money in the name of their disease. Congrats to the 40+ teams walking at events to support non-profit organizations like ALS Association, National MS Society, NAMI, Parkinson’s Alliance, APDA, and the MS Society of Canada. The real-time sharing and learning happening on PatientsLikeMe was also highlighted in the report series called 
AGM in Athens
Innovation: As a leader in Health 2.0, PatientsLikeMe executives are often asked to speak at various industry events. Check out 
