Thank you for sharing this. I have experienced this a little bit years ago and had to play the insurance game. They don't care about us. They only care about the money in their pocket. It is disgusting and despicable. I shared this.
So sorry to learn about your daughter’s ordeal and your efforts to help her. Unfortunately, it’s not “healthcare” anymore, the insurance companies have turned it into a “revenue extraction model.”
I also have IBD -- in my case it's Ulcerative Colitis, diagnosed when I was 48. It's under control now, with Stelara, a biologic that is really easy for me -- it's injections rather than infusions, so I don't even have to go to the doctor's office. With that said, the specialty pharmacy that I am required to use by my insurance company (which not surprisingly is affiliated with the insurance company) does everything it can to make it difficult to impossible to obtain in a timely way. I have to argue with the insurer _and_ the pharmacy in order to get the medication. Every two months, I spend at least an hour on the phone.
One of my father's brothers died from complications of Crohn's and his daughter, my cousin, has a much more extensive case of UC than I do. I'm lucky that I was diagnosed within a few months of first showing symptoms -- so many people go much longer without a clear diagnosis.
Please let your lovely daughter know that she is not alone and better treatments are continuing to be sought for auto-immune disorders. The CRISPR technology is being used to treat a different auto-immune disorder in a trial in China, with some reported success. I feel very sure that, within Hannah's lifetime, a cure will be found. In the meantime, there are a number of online support groups, one very good one is on reddit.
Your daughter is so beautiful--truly a gift! I am sorry for all of the pain she has and continues to go through. My heart goes to you and your family as we fight these assholes and finally get universal healthcare for the sake of all our children! 🕊️♥️🤲
I witnessed firsthand the greed of health insurance companies.
After Trump won the first time around, I decided to leave my dead-end job and get into health care. I felt I was making a difference working at a Medicaid insurance company. I learned very quickly that I was so wrong. I saw what the members had to endure to get their needed care. In one case (and I will try to be as vague as possible), there were siblings who both had a debilitating disease. They both needed medication, which would cost the insurance company a lot of money and they kept denying the treatment. With no medical background, I researched the drug and found that the medication was almost a necessity for this disease. The parents were persistent for two years until the drug was finally approved. Around the same time, the insurance company hired a new CEO to turn around the health insurance company, as it was losing money. Several months prior, the insurance company laid off several people, with the offensive term "Project Nickel," - insinuating that people's livelihoods were just pocket change. Fast forward five years, and this CEO is now one of the highest-paying health insurance executives in the country.
I always think about that family. I am so sorry you went through this, as well.
Thank you for being brave and vulnerable enough to allow us in to view the indefensible way your family was treated by the health care industry. We would all do well to remember that this didn't happen by accident, but by design--bipartisan design by those in power.
As David Sirota of The Lever political journal noted earlier this week:
"Joe Biden promised that “the first thing I would do as president” is enact a public option to compete with health insurance giants, and then never once mentioned it again when he won the election… which I guess isn’t surprising since he launched his 2020 campaign with a fundraiser with the CEO of a health insurance company.
The only real mention of health insurance profiteering in the 2024 campaign was a New York Times story and The Lever’s own coverage noting that both parties had decided to never talk about the issue during the election."
Absolutely horrible what your daughter suffered because of the corporate greed in our country and it is only going to get worse with all the criminals that rump is putting in his cabinet! Millions of people women and children and blacks and browns are Going to suffer in ways no one can imagine as of yet! These people in charge have nothing but hate and greed in their heart and minds so the American people are Headed for unknown horrors! I cannot sleep at night knowing how horrible it is going to become and so many have no idea! My daughter thinks I am “ obsessed “ with what I have no idea about because she knows nothing about what has been happening and does not want to know! It is really not going to be that bad in in 4
Years there will be another election …. I do not believe that either! You do. Or loose democracy and get it back in 4
Years! He is going to take it away in degrees! I guess in the end many will jay die in quiet and alone no one will notice! 😪🥲🤬🥵😤
This brought me to tears that I'm struggling to see thru as I write this note. I don't understand how I as a complete stranger can be so affected by what your little girl has gone through but your insurance company can just see her as a potential cost to their bottom line. Even if she weren't just a child, even as an adult this should never happen but it most assuredly should never happen to a child. I'm really glad you were able to afford the costs they don't cover, I would not have been able to. And I am more than thrilled that the treatment is working.
If our government was worth a crap you'd have given that same story before Congress and they'd be working on a true solution. The truth is our government is more interested in what works gor them politically and the healthcare industry have lobbyists that our politicians on both sides are afraid of. Not all of them, we have some brave souls like AOC, Warren, and Porter. Have you tried to contact your local reps? If that doesn't work, try one of those ladies.
Qasim, this story just made my heart ache. I had no idea of the depth of the horrors of what you and your family were dealing with at the hands of our insane insurance system. This country's pathological fear of "socialism" is doing incalculable damage to its citizens on a daily basis.
Also, I'm so grateful that Hannah is well. My daughter's name is Hannah Joy and I named her because of what her name means. And today is her birthday.
Thank you for sharing this. I have experienced this a little bit years ago and had to play the insurance game. They don't care about us. They only care about the money in their pocket. It is disgusting and despicable. I shared this.
"It is better to die on your feet than to live on your knees"
La Passionaria of the Spanish Civil War
"The Civil War, and the Foreign One, have MURDERED bourgeois liberalism in its official robes"
Andrew Kopkind, the New York Review of Books, August 1967
https://davidgottfried.substack.com/p/in-praise-of-luigi-mangione-slayer
Outrageous!
I’m so sorry to read of your child’s suffering.
And yes, what of the families that don’t know experts?
So sorry to learn about your daughter’s ordeal and your efforts to help her. Unfortunately, it’s not “healthcare” anymore, the insurance companies have turned it into a “revenue extraction model.”
Thank you for sharing this story. So many stories like this one and unless it happens to you, most people don't know.
I also have IBD -- in my case it's Ulcerative Colitis, diagnosed when I was 48. It's under control now, with Stelara, a biologic that is really easy for me -- it's injections rather than infusions, so I don't even have to go to the doctor's office. With that said, the specialty pharmacy that I am required to use by my insurance company (which not surprisingly is affiliated with the insurance company) does everything it can to make it difficult to impossible to obtain in a timely way. I have to argue with the insurer _and_ the pharmacy in order to get the medication. Every two months, I spend at least an hour on the phone.
One of my father's brothers died from complications of Crohn's and his daughter, my cousin, has a much more extensive case of UC than I do. I'm lucky that I was diagnosed within a few months of first showing symptoms -- so many people go much longer without a clear diagnosis.
Please let your lovely daughter know that she is not alone and better treatments are continuing to be sought for auto-immune disorders. The CRISPR technology is being used to treat a different auto-immune disorder in a trial in China, with some reported success. I feel very sure that, within Hannah's lifetime, a cure will be found. In the meantime, there are a number of online support groups, one very good one is on reddit.
Outside the USA, there ARE NO DEATH THREATS nor murders of healthcare executives, because nothing would motivate anything like that, cf Norway: https://open.substack.com/pub/egberto/p/what-healthcare-looks-like-in-norway?r=f0bj9&utm_medium=ios
Your daughter is so beautiful--truly a gift! I am sorry for all of the pain she has and continues to go through. My heart goes to you and your family as we fight these assholes and finally get universal healthcare for the sake of all our children! 🕊️♥️🤲
I witnessed firsthand the greed of health insurance companies.
After Trump won the first time around, I decided to leave my dead-end job and get into health care. I felt I was making a difference working at a Medicaid insurance company. I learned very quickly that I was so wrong. I saw what the members had to endure to get their needed care. In one case (and I will try to be as vague as possible), there were siblings who both had a debilitating disease. They both needed medication, which would cost the insurance company a lot of money and they kept denying the treatment. With no medical background, I researched the drug and found that the medication was almost a necessity for this disease. The parents were persistent for two years until the drug was finally approved. Around the same time, the insurance company hired a new CEO to turn around the health insurance company, as it was losing money. Several months prior, the insurance company laid off several people, with the offensive term "Project Nickel," - insinuating that people's livelihoods were just pocket change. Fast forward five years, and this CEO is now one of the highest-paying health insurance executives in the country.
I always think about that family. I am so sorry you went through this, as well.
Your poor dear daughter! I hope she is able to get some stability back in her health. I hope your family is feeling less stressed as a result.❤️
Thank you for being brave and vulnerable enough to allow us in to view the indefensible way your family was treated by the health care industry. We would all do well to remember that this didn't happen by accident, but by design--bipartisan design by those in power.
As David Sirota of The Lever political journal noted earlier this week:
"Joe Biden promised that “the first thing I would do as president” is enact a public option to compete with health insurance giants, and then never once mentioned it again when he won the election… which I guess isn’t surprising since he launched his 2020 campaign with a fundraiser with the CEO of a health insurance company.
The only real mention of health insurance profiteering in the 2024 campaign was a New York Times story and The Lever’s own coverage noting that both parties had decided to never talk about the issue during the election."
The way he ran away from healthcare was a sight to behold. smh
Absolutely horrible what your daughter suffered because of the corporate greed in our country and it is only going to get worse with all the criminals that rump is putting in his cabinet! Millions of people women and children and blacks and browns are Going to suffer in ways no one can imagine as of yet! These people in charge have nothing but hate and greed in their heart and minds so the American people are Headed for unknown horrors! I cannot sleep at night knowing how horrible it is going to become and so many have no idea! My daughter thinks I am “ obsessed “ with what I have no idea about because she knows nothing about what has been happening and does not want to know! It is really not going to be that bad in in 4
Years there will be another election …. I do not believe that either! You do. Or loose democracy and get it back in 4
Years! He is going to take it away in degrees! I guess in the end many will jay die in quiet and alone no one will notice! 😪🥲🤬🥵😤
Thank you for sharing this. I'm keeping your family in my heart and I'll be fighting for you, just as much as I am for my own family.
This brought me to tears that I'm struggling to see thru as I write this note. I don't understand how I as a complete stranger can be so affected by what your little girl has gone through but your insurance company can just see her as a potential cost to their bottom line. Even if she weren't just a child, even as an adult this should never happen but it most assuredly should never happen to a child. I'm really glad you were able to afford the costs they don't cover, I would not have been able to. And I am more than thrilled that the treatment is working.
If our government was worth a crap you'd have given that same story before Congress and they'd be working on a true solution. The truth is our government is more interested in what works gor them politically and the healthcare industry have lobbyists that our politicians on both sides are afraid of. Not all of them, we have some brave souls like AOC, Warren, and Porter. Have you tried to contact your local reps? If that doesn't work, try one of those ladies.
Thank you for your love and compassion, Lisa. I truly appreciate it.
Qasim, this story just made my heart ache. I had no idea of the depth of the horrors of what you and your family were dealing with at the hands of our insane insurance system. This country's pathological fear of "socialism" is doing incalculable damage to its citizens on a daily basis.
Thank you, my friend. I am grateful for your incredible and limitless compassion.
I must share with you that reading your books have inspired her immensely and Hannah Noor keeps re-reading them because they give her hope. ❤️✊🏽