Suffering from a health complication is challenging enough. Imagine when paying for treatment is impossible, even with full insurance coverage. As we researched in this post, for patients in need of an intestinal transplant, the average cost is a whopping $1,206,800 – the most expensive medical bill issued for a single procedure in the United States.

Last year, over 30,000 people received organ transplants in the U.S., but only 141 of them received an intestinal transplant. The million-dollar (plus) price tag can be attributed to the procedure’s complexity and duration — the intestine is the body’s longest organ, measuring 22 feet for the small intestine and 6 feet for the shorter (but wider) large intestine.

Why so expensive?

It’s complex. A transplant can take up to 12 hours to perform. While the majority of the cost of an intestinal transplant goes into hospital admission, procuring the organ alone costs tens of thousands of dollars, mostly for donor and recipient tissue typing and evaluation, and preserving the organ. The donors themselves cannot be paid.

A long recovery. The medical bill continues to stretch well after the surgery is over, given the need for rehabilitation, follow-up care, and the administration of anti-rejection drugs, or immuno-suppressants, that tell your body not to attack the transplanted organ. Hospital stays for intestinal transplants can last for several months.

It’s super risky. Intestinal transplant surgery carries a 50-50 mortality rate. Patients waiting to receive an intestinal transplant must have a life-threatening condition to warrant the surgery’s risk, including intestinal failure due to Crohn’s disease, short bowel syndrome, a digestive disorder, or advanced liver disease.

The Human Side of Intestinal Transplant Surgery

For Michael Mahan, who has been on the transplant waiting list at the University of Nebraska Medical Center since 2015, a small intestine transplant would help to cure a medical condition that renders his blood septic every six to eight weeks. It started in 2012, when his gallbladder was removed and his small intestine became 90 percent useless after twisting on a major artery.

Michael finally matched with a donor; however, the operation requires him to live at the transplant center for several months. Like many others in his situation, Michael’s insurance policy pays hospitals following a surgery, not beforehand. Michael must figure out a way to cover his hospital stay up front before the procedure can take place.

In addition, the transplant center requires a family member to stay with him at the center during the recovery process. While Michael’s insurance carrier may cover his expense, it won’t necessarily cover that of a family member. Michael is fortunate to have the support of his hometown community in Grand Island, which helped him raise money with a fundraiser and silent auction on April 8. He also has a public donation campaign.

Intestinal transplants are also performed on children who develop severe liver problems or infections. Data from 2004 shows that 92 of the 152 intestinal transplants in the U.S. were pediatric.

Matisse Reid was one of those children whose life depended on an intestinal transplant. Born with a rare medical condition, she could not digest food and could only accept nutrition intravenously through total parenteral nutrition (TPN). After 10 years of living this way, some of her veins became clotted, and Matisse was in danger of liver injury.

Her family decided to relocate from New Zealand to Pittsburgh in order to place her on the national transplant waiting list and receive care from Children’s Hospital of Pittsburgh. The move took years of fundraising and planning. It did not go unrewarded. Matisse received her twelve-hour transplant for a small and large intestine in 2010, and her quality of life has been much improved since.

As evidenced in the above examples, illness alone is not what disrupts lives, but the effort to receive and pay for necessary treatment. For a serious condition requiring an intestinal transplant, entire families must get involved, shuffling their lives and schedules to book flights to the appropriate medical facilities, leave jobs and relinquish wages for extended periods to care for their loved one, and find and pay for extra child care as needed while they are away. All of these supplemental expenses are considered non-medical costs that insurance will not cover, though they are crucial aspects that revolve around a patient’s road to healing and recovery. Matisse’s story shows that hope and recovery are possible, even when the most expensive medical bill in the country is called for.

[Image courtesy of Hey Paul Studios]