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.
Fortunately, there are disease modifying treatments available today as there are for many autoimmune diseases. The all work the same way. The body is immune to some component of itself. Antibodies attack that tissue and that creates severe inflammation. We cannot yet neutralize the specific antibodies against the specific tissue. So, we knock down the inflammatory process. My wife takes adalimumab or Humira. It is used in other, more common, autoimmune disorders like rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, Crohn's disease, ulcerative colitis, psoriasis, hidradenitis suppurativa, uveitis, and juvenile idiopathic arthritis. It works the same way in each of these conditions and would be expected to work in my wife’s rare illness. It has worked. As soon as she started it, her elevated inflammatory markers came right down, but there have not been clinical trials because the condition is so rare. That represented a problem in getting the drug approved. It was a huge struggle even for me, and I know the system and the critical importance of this medication in her illness.
Humira is an antibody against tumor necrosis factor alpha or TNFa. TNFa occurs upstream in the inflammatory cascade. When you neutralize that, you dramatically reduce inflammation, and you compromise immunity. Because of that disease modifying drug, Bari’s nose and trachea have not collapsed. She has not had pneumonia. But it is not a perfect answer, and she still suffers. It is a life-saving, disease modifying drug. She must have it to live.
Here’s the rub. The retail price of Humira in our country is over 12 thousand dollars a month even with the GoodRx discount. The same medication costs $1570 per month in Germany and $1230 in Switzerland. I will pick up a supply of Humira for Bari in the next couple of days. They have already told us the copay out of pocket will be over $2900 for a month’s supply. I have paid for this regularly in this same town for 5 years. Still the pharmacy has called us twice to be sure that we will have the copay before they send the drug. It is not just the price, it is the constant aggravation of working to gain timely access to this critical medication. Because of these barriers, she is already two days late for this weeks dose. Both of us are on Medicare. I have Medicare Advantage insurance. I paid insurance premiums my entire adult life. I made the maximum social security contribution annually and I still pay much more than the cash price in Germany. Most Americans cannot pay $2900 a month out of pocket. They just can’t do it. I guess those people just slowly smother. Overall, Americans pay two to three times as much for drugs as people in other advanced countries.
Why are so many Americans struggling with drug costs? That is pretty easy to understand. In other countries, the government negotiates drug costs. They are the biggest purchasers in each country. They have tremendous leverage, and they get a better price. Medicare is forbidden by law from negotiating prices in the US. That’s crazy. Right? The reason for that is easy to understand. The pharmacy and healthcare industry spends the most of any industry on lobbying the Congress of the US. That was $306 million dollars is 2020 alone. They spend almost as much as the second and third industries combined. That is a massive conflict of interest for our Congress. Politicians willing to oppose drug price negotiation get most of the money. This situation impacts everyone reading this. We all pay for Medicare through our taxes. Prices for people not yet on Medicare are based on Medicare prices in most of American medicine—Medicare plus 50% or something like that. Medical costs are so high it takes money away from roads and schools. It is so expensive medical costs are the leading cause of personal bankruptcy. No leading industry would buy huge amounts of something without negotiating the price. The pharmaceutical companies have a huge ad campaign going, saying if we lower prices, we won’t have access to these medications. That is crazy. The Europeans have access. Drug companies doing everything they can to benefit the few at the expense of the many. Simply put, better health at lower cost is a political and regulation issue. It is a transparency issue. We won’t have better health at lower cost until we do the work, understand the issues, and vote accordingly. This is yet another way our system is far from the best.
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.
https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC7054854/