My wife has relapsing polychondritis. This is how her ear looks in a flare. You can easily see that the part of the ear with cartilage is inflamed. It is fire red. It feels hot and very sore. The disease is rare and impacts only three out of a million people. This is a deadly chronic disease that killed its victims in five years 40 years ago. It is an autoimmune disease. In this condition, the body makes antibodies against its own cartilage which is widespread in the body. Cartilage supports the ears, the bottom half of the nose, and the trachea or windpipe. There is cartilage in every joint and between every vertebral body in the spine. In relapsing polychondritis, all cartilage is under attack, and it is very inflamed. The ears, nose, and trachea collapse and that is how these people die. Because their trachea collapses, it narrows like a collapsing drinking straw when they try to breathe in. Without the proper treatment, they develop pneumonia, or they suffocate. It is an awful way to die. This is a chronic illness. She never has a good day. It is not fair. She is the kindest person I know.
Another clear, to the point, insightful and moving piece from Dr. Bestermann. He always gets to the heart of the matter, and in the most human terms. He is a national treasure.
Sadly, most patients have to deal with high drug prices. This has nothing to do with the pharmacy. The Pharmacy Benefits Manager (PBM) industry manipulates and controls drug prices. They own pharmacies, supply chain, provider networks, judges and politicians to ensure there's no transparency and ensure the monopoly game is in their favors.
I am so sorry Bari has such a hard time. I am going to pray she has more good than bad days ahead. You have my support with whatever can be done about the outrageous drug prices. My daughter has faced that for many years as well, buying insulin and diabetic supplies out of pocket with her high deductible. Take care!
Thanks Jean. If a politicians is not supporting negotiated drug prices, that is really all you need to know. They are not acting in your daughter's interest. We could have lower drug prices in months. These politicians are acting to protect pharmaceutical company interests, not your interests.
I am taking an online course from IPAK-EDU.org titled "Wholistic Approaches to Human Health." The professor, Dr. David Brownstein, has written several books including 2 on thyroid and iodine. In his first 2 lectures, he presented findings on the association of autoimmune disorders with hypothyroidism and iodine deficiency. He also presented papers showing that iodine levels showed a linear relationship with symptoms of rheumatoid arthritis. He stated that the majority of Americans were deficient in both thyroid and iodine. He believes we need very high doses of iodine to reverse problems (50 mg. obtained from 2 drops of Lugol). He has seen remarkable clinical improvement from use of iodine alone. In fact, many times thyroid isn't necessary once iodine deficiency is corrected. He measures level of iodine with 24 hour urine test to determine how much iodine is excreted after a challenge dose 50mg. is taken. If very low levels are excreted, then the patient needs to take iodine. Your wife has an autoimmune disorder. Would iodine have any effect? It is horrible that pharma only treats common diseases and prefers to rely on vaccines and chronic diseases (insulin, statins) and "disorders" that require drugs for everyone (viagra). Rare diseases and diseases common in the 3rd world (not profitable to treat) are ignored. This is so outrageous. Thanks for your post.
Medicare Advantage is funded by private insurance. It seems like a good deal because it has lower premiums, lower deductible, more coverage (dental, optical). Unfortunately, many people who opt for this plan discover that the insurance denies their claims once they develop a serious illness or need surgery. Classic Medicare is better in the long run. The problem is that healthy seniors will pay MUCH less but also get less coverage when they finally need it. The private insurance companies are cherry picking the healthier seniors.
Bill, you continue to be an inspiration for urgent reform. $12K/month, insane. I wonder what a TDABC analysis of that drug would reveal is the true cost of the service? Keep up the strong advocacy for our patients.
Thanks Steve. You are an accomplished medical leader and your comment means so much to me. If you can think of anything I can do to be more effective, please let me know. Our current system is not serving us very well. I feel a sense of urgency.
Another clear, to the point, insightful and moving piece from Dr. Bestermann. He always gets to the heart of the matter, and in the most human terms. He is a national treasure.
Thanks Brian. You made my day.
Sadly, most patients have to deal with high drug prices. This has nothing to do with the pharmacy. The Pharmacy Benefits Manager (PBM) industry manipulates and controls drug prices. They own pharmacies, supply chain, provider networks, judges and politicians to ensure there's no transparency and ensure the monopoly game is in their favors.
https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC7054854/
Thanks for summarizing. I know that you are a leading pharmacist and your comment is very valuable.
I am so sorry Bari has such a hard time. I am going to pray she has more good than bad days ahead. You have my support with whatever can be done about the outrageous drug prices. My daughter has faced that for many years as well, buying insulin and diabetic supplies out of pocket with her high deductible. Take care!
Thanks Jean. If a politicians is not supporting negotiated drug prices, that is really all you need to know. They are not acting in your daughter's interest. We could have lower drug prices in months. These politicians are acting to protect pharmaceutical company interests, not your interests.
I am taking an online course from IPAK-EDU.org titled "Wholistic Approaches to Human Health." The professor, Dr. David Brownstein, has written several books including 2 on thyroid and iodine. In his first 2 lectures, he presented findings on the association of autoimmune disorders with hypothyroidism and iodine deficiency. He also presented papers showing that iodine levels showed a linear relationship with symptoms of rheumatoid arthritis. He stated that the majority of Americans were deficient in both thyroid and iodine. He believes we need very high doses of iodine to reverse problems (50 mg. obtained from 2 drops of Lugol). He has seen remarkable clinical improvement from use of iodine alone. In fact, many times thyroid isn't necessary once iodine deficiency is corrected. He measures level of iodine with 24 hour urine test to determine how much iodine is excreted after a challenge dose 50mg. is taken. If very low levels are excreted, then the patient needs to take iodine. Your wife has an autoimmune disorder. Would iodine have any effect? It is horrible that pharma only treats common diseases and prefers to rely on vaccines and chronic diseases (insulin, statins) and "disorders" that require drugs for everyone (viagra). Rare diseases and diseases common in the 3rd world (not profitable to treat) are ignored. This is so outrageous. Thanks for your post.
Thanks for the comment. I will look into the iodine issue.
Medicare Advantage is funded by private insurance. It seems like a good deal because it has lower premiums, lower deductible, more coverage (dental, optical). Unfortunately, many people who opt for this plan discover that the insurance denies their claims once they develop a serious illness or need surgery. Classic Medicare is better in the long run. The problem is that healthy seniors will pay MUCH less but also get less coverage when they finally need it. The private insurance companies are cherry picking the healthier seniors.
This drug pricing issue impacts all Americans regardless of insurance type.
Bill, you continue to be an inspiration for urgent reform. $12K/month, insane. I wonder what a TDABC analysis of that drug would reveal is the true cost of the service? Keep up the strong advocacy for our patients.
Thanks Steve. You are an accomplished medical leader and your comment means so much to me. If you can think of anything I can do to be more effective, please let me know. Our current system is not serving us very well. I feel a sense of urgency.
I will send you an invite to join the Moving To Value Alliance (MTVA). Listen to Christin Deacon tomorrow...thanks again Bill
Right on. You’ve diagnosed the problem and why we don’t fix it is corrupt politics.
Thanks David. Great to hear from you. We are all paying the price. None of us are immune.