Nick Genes and Mike Sevilla and I had a fascinating series of interviews with key exhibitors at HIMSS yesterday. I hope you enjoyed them on UStream. We will edit them a bit and offer them up on the blog soon. Please join us from 8am-6pm today for more HIMSS coverage. Here is our interview schedule (all meetings will be held in the Better Health conference room, located behind the Information Desk in the lobby of Building B (near HIMSS Central):
Our first day of social media coverage at HIMSS was a lot of fun. We had hundreds of people join in our UStream interviews and I spoke at the “Meet The Bloggers” panel with some very cool peers. Today we’ll be conducting more interviews at the Better Health media center, located in the lobby of Building B, just behind the information desk. I hope you’ll join us for live coverage. Simply follow along by clicking here. Here’s who Dr. Mike Sevilla, Dr. Nick Genes, and I will be interviewing:
Better Health bloggers, Val Jones, Nick Genes, and Mike Sevilla are in Atlanta to talk to interesting exhibitors at the largest health information technology (HIT) event of the year.
Monday, March 1st has a full schedule of interviewees… Please join us live on UStream to tune in for the interviews and participate on Twitter! Ask your question in real time. Drop by the UStream channel at the designated time to hear from your favorite vendor…
Dr. Jan Gurley just returned from a mission trip to Haiti, 5 weeks after the earthquake hit. In this audio clip, she relays a horrific first-hand account of the current realities of life in Port Au Prince. With no running water, bathrooms, or place to shelter – and packed into a field with 100,000 people – some young women are choosing to stop drinking water in an effort to commit suicide.
Dr. Gurley describes the loss of human dignity associated with the crisis in Haiti, including a near stampede when sanitary napkins were offered in a crowd of women. She explains that the place is becoming dangerous – and the screams of women being raped in the night fill the dark air. In the day time, people huddle together for safety while the stench of rotting corpses surrounds them. With the rainy season approaching, and tent cities perched precariously on land-slide prone hills, Dr. Gurley predicts a second wave of disease, violence, despair, and death in Haiti.
[Audio:https://getbetterhealth.com/wp-content/uploads/2010/02/haitiupdategurley.mp3]
In honor of World Rare Disease day and the Global Genes Project, I’d like to repost a fascinating interview with a young man who has hemophilia…
Hemophilia A is a blood clotting disorder sometimes referred to as the “disease of kings” since it is a genetically inherited (X-linked) bleeding disorder that was introduced by Queen Victoria to the Russian royal family in the mid 1800’s. Women are carriers of the gene, while males express the signs of the disease, so only the “kings” display the trait.
Today there are fewer than 18,000 individuals with hemophilia A in the United States. Those with the most severe form of the disease make less than 1% of the regular amount of a certain blood clotting glycoprotein (known as factor VIII) and are often dependent on the regular intravenous administration of this expensive factor to keep them from bleeding to death. The cost of factor VIII and associated medical care and hospitalizations is estimated at $150,000/year.
How do people with hemophilia A manage to get their medical needs met in our current healthcare system? I spoke with a young man with hemophilia A (we’ll call him “J”) to find out.
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