February 9th, 2011 by StevenWilkinsMPH in Opinion, True Stories
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Let me start by saying I really like MD Anderson Cancer Center. There is a lot to like. Take their tag line for example: “Making care history.” If anyone finds a cure for this cancer or that cancer, MD Anderson will have a hand in it, I’m sure. Hospitals could also learn a thing or two about the meaning of comprehensive care, clinical integration, and customer service from MD Anderson is well.
I have another reason why I like MD Anderson so well: They saved my wife’s life. You see, she was diagnosed back in November of 2004 with stage four non-small cell lung cancer (NSCLC). As anyone familiar with lung care knows, lung cancer is a very tough adversary. It’s an even tougher adversary when your insurance company insists that your local community hospital and oncologists are “just as good” as MD Anderson’s in terms of quality and outcomes.
You guessed it. In 2004, my wife and I had to fight long and hard to get our insurance carrier to authorize my wife care at MD Anderson, an out of network provider. I’m happy to say we won that fight back in 2004 and again just last week when my wife’s employer’s new insurance carrier refused to authorize her continued care at MD Anderson. You see, her new carrier wanted to rehash the whole medical necessity thing all over again.
Now you would think that a world-class organization like MD Anderson would do everything possible to help prospective patients deal with these kinds of insurance issues. After all, they seem to do everything for you once care is authorized. But you would be wrong. Read more »
*This blog post was originally published at Mind The Gap*
January 22nd, 2011 by admin in Opinion, True Stories
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This is a guest post from Dr. Steven Reznick.
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Patient Advocacy: It’s Worth The Effort
I have a 61-year-old patient who has been seen in my practice for over thirty years. When she first started developing strange aches and pains as well as abdominal symptoms, her evaluation turned up nothing. At that point she was very active: Playing ball with her two growing sons and dancing the nights away wearing out dance partner after dance partner at community social functions.
When I could not determine the cause of her ills, I asked for help at reputable places including the University of Miami rheumatology division and gastroenterology division. Like so many illnesses, the disease remained a mystery until it was ready to show itself and until technology and progress developed diagnostic tools to allow us to see what is actually there. With the help of a brilliant local gastroenterologist and rheumatologist, and after trips to Johns Hopkins Medical Center and the Mayo Clinic, collagenous colitis and sarcoidosis were documented. In the interim, local medical doctors and her friends branded this poor woman as “another neurotic spouse of a doctor who liked narcotics.”
She developed a peripheral neuropathy, which meant her feet and legs hurt all the time with burning/shooting discomfort exacerbated by walking. She went from dancing the Lindy to hobbling with the assistance of her husband, and a cane from the bedroom to her kitchen. She would then have to sit down, massage her legs, and put on thick-cushioned sweat socks to tolerate the foot and leg discomfort. Read more »
January 4th, 2011 by AndrewSchorr in Better Health Network, Health Tips, Opinion, Research
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You are an individual right? To your mom and dad you are/were like no other. Hopefully your family and friends continue to see you as one-of-a-kind. Had you considered your doctor should see you that way too? Not as yet another one with diabetes, or heart disease, or cancer, but as a singular human being with biology that may be different from even the next person through the door with the same diagnosis.
This is the age of “personalized medicine” and it will accelerate in 2011. It is our responsibility as patients to ensure the power of this concept is leveraged for us each time we interact with the healthcare system. This is especially true as we manage a serious chronic condition or a cancer.
Now, in research and in clinical practice there are refined tests to determine what our specific version of a disease is and there are tests to see how a targeted therapy is working in our bodies. In other words, there’s the opportunity to see which therapy might be right for us that might be different than what is right for another person, and then there is the opportunity to monitor the therapy early on to see if it is doing its job. Read more »
*This blog post was originally published at Andrew's Blog*
December 18th, 2010 by KerriSparling in Better Health Network
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I loved diabetes camp. Actually, that should be in present tense because I continue to love diabetes camp, even though I’m not a camper anymore. Attending Clara Barton Camp for those five summers changed the way I looked at life with diabetes, and my health has always been better for it.
But I’ve talked about camp before. I’d love to play a role in sending other kids to diabetes camp. And thankfully, we as a community now have that chance.
The Diabetes Education and Camping Association (DECA) is in the running to win one of the Pepsi Refresh Project grants. If they earn one, they’ll use their winnings to send kids to diabetes camps and will also arm them with digital filmmaking skills so that the campers can chronicle their experiences with type 1 diabetes. As a diabetes camp alum, a patient advocate, and the wife of a filmmaker, I think this is a fantastic idea. Read more »
*This blog post was originally published at Six Until Me.*
November 30th, 2010 by AndrewSchorr in Better Health Network, Health Policy, Opinion
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We are invading their home turf. Increasingly, in among the thousands of doctors, scientists, and medical industry marketers at the largest medical conventions you are finding real patients who have the conditions discussed in the scientific sessions and exhibit halls. Patients like me want to be where the news breaks. We want to ask questions and — thanks to the Internet — we have a direct line to thousands of other patients waiting to know what new developments mean for them.
I vividly remember attending an FDA drug hearing a few years ago and how there were stock analysts sitting in the audience, BlackBerries poised for the “thumbs up” or “thumbs down” on whether a proposed new drug would be recommended for approval. (At that session it was thumbs down.) When the analysts got their thumbs moving, a biotech stock tanked in minutes and before long the company was announcing layoffs. Those analysts were powerful reporters.
Now patients are reporters, too, and their thumbs are just as powerful. So are their video cameras and microphones. These folks are a different breed than the folks from CNN or the scientist/journalists from MedPageToday. Their questions are all-encompassing: “What do the discussions about my disease or condition here mean for me? What should change in my treatment plan? What gives me hope? What’s important for my family to know?” Read more »
*This blog post was originally published at Andrew's Blog*
