By On any day of the week, you might see Andy Fisher wearing his “kidney shirt” as he walks around Woodfield Mall in Schaumburg, IL, a suburb of Chicago. His t-shirt says it all: “In Dire Need of an O+ Kidney Donor Under Age 50 Call Andy Fisher 847-371-1966”.
Andy went through a kidney and pancreas transplant 21 years ago; however, that kidney is now failing. He needs a kidney from a living donor because of type 1 diabetes, which has had him battling illness after illness and ailment after ailment for decades. Why does Andy need a living donor to pull through for him? Because the wait for a kidney from a cadaver is about eight years.
He doesn’t have the luxury of waiting eight years.
Andy was diagnosed with type 1 diabetes when he was just eight years old. In order to stay alive as he prays for a donor, he has to undergo dialysis three times a week. He’s on the donor lists at University of Madison (UW Health) and Northwestern Memorial in Chicago, and has a Facebook page dedicated to his life, his story, and his search for a kidney.
Unfortunately, Andy has lots of company on donor waitlists. According to UNOS, the United Network for Organ Sharing, as of 5:55pm EDT on August 1, 2018, there were 114,486 people on the waiting list of transplant candidates. Since January of 2018, there have been 17,935 transplants performed, thanks to 8,615 donors (one donor can save up to eight lives). Sadly, every ten minutes, someone is added to the waitlist and on average, 20 people die every day waiting for a transplant. In 2016, more than 7,000 people lost their lives while on the wait list or within 30 days of leaving the list.
Why is there Such a Gap between Available Organs and the Number of People who Need Them?
One of the biggest reasons for the shortage of donors is that people have many misconceptions about organ donation, despite it having been around for decades. Some people are under the impression that it costs money for the donor or the donor’s family when in fact, there is no cost at all to them. Many people incorrectly think that organ and tissue donation goes against their religion, but the truth is that donation is consistent with most major religions.
Additional misconceptions include those regarding age restrictions; however, anyone of any age and any medical health background could be a donor and should consider donating. Some people don’t want to be organ donors or don’t want a deceased family member to be a donor because they think an open-casket funeral isn’t possible with donation – but in truth, it is possible. For those who may be worried about privacy matters, a donor and recipient can keep their identities private; identities will only be revealed if parties so choose it.
One of the other major misconceptions is that donating organs or tissue is dangerous for a potential living donor, or that for a deceased donor, it devalues the person. Dr. Jeffrey Punch, Director of the University of Michigan Transplant Center states, “Donating organs has no risk, damages no party, and causes no problem with any large-scale religious communities.” Laura Siminoff, a bioethicist, Director of the bioethics program at Case Western University, and board member of the Minority Organ Tissue and Transplant Education Program in Cleveland says, “From a very clinical point of view, you can ask what is the difference if the donor is dead. Except as a society, we don’t view dead people as garbage. People have very definite feelings about how dead bodies should be treated and what they represent,” she explains.
The “Wallet Biopsy”
Transplant centers across the country rely on UNOS to maintain a nationwide patient waitlist. While it’s true that available organs are given to those patients who have been waiting a long time or to those who are most ill, there remains a hurdle to patients being able to even get on the list: the means to pay.
There are 256 organ transplant centers in the United States, and it is those centers that decide who gets on the waitlist. Each center is able to set its own criteria, and that often includes the ability to pay. The term “wallet biopsy” is used by Siminoff. “If you’re a well-to-do patient, you can shop around to centers. But if you don’t have any money, you will go wherever is closest, and their policies are what you are stuck with,” she explains. “Every transplant center can do what they want.”
Bridging the Gap between Donors and Recipients
There are some transplant centers out there that really go above and beyond to not turn away uninsured or underinsured patients. Some are also able to help their candidates pay for medications that must be taken after transplantation as anti-rejection drugs. In some instances, these medications can cost more than the original transplant surgery.
The University of Michigan Transplant Center staff tries to help underinsured patients pay for their procedures; for low-income patients, sometimes Medicare or Medicaid can be arranged. Dr. Punch says that they almost never do a transplant without a plan for how it will be paid for. They rarely turn away people because of a lack of insurance. “In virtually all circumstances,” he says, “the patient can arrange coverage of some sort.”
If more centers were able to put forth enhanced efforts to help their patients pay for their surgeries and treatments, perhaps there would be an increase in the number of people who are able to get on the waitlists and receive the transplants they need.
Something else that could help narrow the organ donation gap would be more widespread, accurate, readily available information being accessible about being a donor and being a recipient. Despite continuing efforts to educate the public regarding organ and tissue donation, inaccuracies about it persist. For donations to increase, people must be made aware of the facts in order to better understand organ and tissue donation.
The Daily Fight to Live
For Andy Fisher and thousands of others awaiting organ or tissue donation, every minute counts.
While some patients have been dealing with failed organs almost their entire lives, like Andy, others, like Ann Schofield, suffer with symptoms that came quickly and without warning, becoming life-threatening in less than 48 hours. With continuing education, an unrelenting effort to advance payment options for patients, and the grit, hopes, and perseverance of patients, families, donors, and medical staff, we can close the gap between donors and patients, turning the tide in a battle against a serious issue that could one day threaten the very lives of someone we love – or even ourselves.
Answering the Prayers of Those in Need
You never know if you hold the answer to someone’s prayers for a life-saving organ. If you’d like to connect with Andy Fisher about his needs for a kidney donor, you can reach out to him at (847)371-1966 or through his Facebook page. For more information on organ and tissue donation or to find out if you’re eligible to become a living donor, visit the UNOS website; to join 138 million people who are registered as post-mortem organ donors, you can sign up today online at www.organdonor.gov.
