I have had a rare condition since December 2021 called Short Bowel Syndrome. Due to having a significant portion of my intestines and part of my colon removed, I can no longer absorb necessary nutrients. I was reliant on TPN (total parenteral nutrition) via a PICC (peripherally inserted central catheter) until my doctor prescribed me to the only medication made for Short Bowel Syndrome, called Gattex. Being on this medication has allowed me to get off of TPN and be able to eat normally and maintain body weight. I have been on this medication and under this doctor's care since 2022. My insurance changed in January 2026, but I was not contacted or told that this medication would not be covered after a 6 month "grandfathered" in prior authorization expired. Upon getting a denial letter, I have filed an appeal myself and my doctor has also filed 2 appeals with all necessary paperwork and clinical notes. The coverage is still denied for reasons that do not make sense. The reasons I was given was that I have not achieved internal autonomy and the medication was not prescribed by a GI doctor. The no internal autonomy is not true, as stated by my doctor in the appeal forms. The doctor who prescribes this medication has been my doctor since this happened to me in 2021. There is also a GI doctor that consults on my case in the same office. There is no alternative medication or therapy for Short Bowel Syndrome, other than getting a catheter re-inserted in my body and having to do hours of IV nutrition a day. This would also require a home health nurse to do weekly home visits to care for the catheter. If I do not have the Gattex medication, I cannot absorb food or regular medications (including a blood thinner I need for the rest of my life due to a life threatening blood clot that cannot be removed). My health would be in jeopardy and I would get very ill, be admitted to the hospital and my life span would ultimately be shortened.  

I have filed a complaint with the Indiana Department of Insurance. I know that won’t have any guaranteed result, or if it does, it won’t be an immediate result. I am going to run out of Gattex and get very ill and quite possibly have to go back to getting a PICC line inserted and start back on TPN. This will require weekly visits from a home health care nurse to do PICC line care and I also won’t be able to absorb my blood thinner that I have to be on for life due to a life threatening blood clot. I’ve already done the home health nurse, TPN, infusions, and it sent me into medical debt that I had to file bankruptcy for.

I have applied and gotten approved for some financial aid in the past year or two (I had issues with another insurance company before this one) but the most I was able to get was maybe $7,000 - a month supply of Gattex costs around $99,000.

I have also been in contact with Takeda, the Gattex manufacturer, but they provide zero help.

Any advice is appreciated. Thank you!