Are Some Patient Advocacy Groups Going "Corporate?" Ok. I am sounding off again. I am an entrepreneurial kind of guy. I spent some time in "Hollywood" and thought it was cool that some big movie deals were actually worked out by producers and studios over lunch at a deli (I love corned beef!) and with the terms scratched out on a napkin. It really does happen. So when it comes to partnering on programs for patients, like interviews and webcasts, I believe a producer/host like me should be able to just pick up the phone or send an email to...

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Frank Burroughs is a man on a mission. His daughter, Abigail, died of a serious illness when a new medicine, in the late stages of approval might have helped. She was out of options and did not qualify for a clinical trial. Would the FDA give her access to the promising drug? No. Abigail died and Frank made it his life's work to get things changed in Washington, D.C. It has been tough. Frank has new friends: men who are upset a promising anti-prostate cancer vaccine (Provenge) is being delayed by the FDA even after its scientific advisory committee voted...

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As you may know, I host a live radio show most days called Patient Power. I am often bowled over by the people who my producers line up to be on the show. Many are truly among the most "powerful patients" you will ever meet. A great example was just the other day (link to replay) when, at long last I hosted a program on Cystic Fibrosis, a serious condition where problems in the lungs lead to nutritional deficiencies and death. It used to be that children diagnosed with CF would die as children or, at best, as young adults....

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It's not yet Breast Cancer Awareness Month, but I am not one to believe we need to wait for a given "month" to put emphasis on a health concern and write about it. So here's an unusual breast cancer story that's also a story of family love and sacrifice. It started with me doing what you probably do too – glance at the photos of friends and family when you are in someone else's house. Typically, these are on their refrigerator, held there by magnetized frames. So there I was in friend Shellie's kitchen after a Jewish New Year gathering....

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The other day I met Roger Gruss from near Seattle. He's 54 and has been fighting a subtype of Sarcoma, a rare cancer to begin with. There are only 150 in the U.S. diagnosed with this cancer type each year. So, not surprisingly, his cancer was first misdiagnosed and then later became quite interesting to university doctors who had hardly ever seen it before. Its rarity also means there are no great treatments. But fortunately there are doctors who have made it the subject of research. Roger found out about this by searching on the Internet and consulting with his...

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I was on a weekend visit to California to see friends and relatives. The man, in his 70's, was waiting for me as I took my 10-year-old son for a swim at the pool at grandma's condo in Los Angeles. "Hi Andrew," he said as he pulled up a chair alongside me at poolside. "I'm Bill and, like you, I have CLL," he continued as he launched into his story of diagnosis and on-going discussions with his local oncologist about when he might need treatment and with what. Bill had heard I had been treated for CLL (my in-laws had...

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Many of the people who visit this website have a serious health concern. Maybe you are living with MS, arthritis, or you are a cancer survivor. And from time to time you have medical tests to help you and your doctor see how you are doing. For me, I have blood tests about every six months to see if my leukemia is still in deep remission. The next test is this week and I am getting a bit anxious. I have felt some occasional aches and pains, worried about swollen lymph nodes, or if I was losing weight even when...

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I just got back from a cruise on the Baltic Sea. There was entertainment on the ship. One night a veteran comedian was on stage and part of his bit was to poke fun at doctors. He complained that when you are not feeling well these days, and don't know the cause, it's hard to find a doctor who can look at the whole person and consider all the possibilities. The funny man worries everybody is a specialist (they make more money) and just sees everything in terms of what they treat and how they treat it. Of course, seeing...

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Off the Coast of Sweden, Baltic Sea, August 3, 2007Our cruise continues on the M.S. Rotterdam as we head toward Tallin, Estonia. Today is a day at sea with no ports of call. It's during these times that we mingle more with other passengers and get into more in-depth conversations. Shortly I will be interviewing Dr. Michael Rie from Lexington, Kentucky – another passenger. I literally met him in the hot tub the other day. After pleasantries I learned he is a critical care doctor at the University of Kentucky Medical Center and he has strong feelings on how healthcare...

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I am on a Northern European cruise with my family and friends on Holland America's M.S. Rotterdam. This is my first time on a cruise since I was 7 years old and went with my parents on a small trip from New York City to Nassau. Things have changed a lot: casinos, variety shows, and an on board infirmary that rivals many emergency rooms. Coming up I will host a Patient Power hour long program on "Health and medicine" at sea. Today's situation presents an interesting point of discussion. We are at sea today – no ports of call –...

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September 2007
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