In the United States, more than 100,000 people are currently on transplant waiting lists for organs, including more than 4,700 people in Illinois. But each year — because of the scarcity of donor organs — less than half of those who need transplants will get them.
“The number of donors simply isn’t keeping pace with the growing need for organs,” says Robert Higgins, MD, chairperson of cardiovascular-thoracic surgery at Rush University Medical Center, who has taken a special interest in organ distribution throughout his career. He is immediate past president of the board of directors of United Network for Organ Sharing (UNOS), which generates and maintains the transplant waiting list, and he is currently a physician liaison on the UNOS Foundation board, which is looking at ways to increase organ donation. He previously sat on the Secretary of Health and Human Services Advisory Committee on Transplantation, which addresses transplant-related issues and concerns at the national level.
In this post, Higgins discusses the state of organ donation today, and what efforts are under way to address the increasing need for donor organs in the United States.
How are organs distributed — who gets them and why?
It’s a very complicated sequence of matching need with the availability of organs. If you have a diagnosis of end-stage heart, liver, kidney or lung failure, as determined by a physician, you are entered onto a recipient list that has certain predefined criteria. Local organ procurement agencies, such as the Gift of Hope in Chicago, help manage the organ donor lists at the local and regional levels. When an organ becomes available, they contact UNOS, which generates and maintains the national transplant waiting list. UNOS then generates a list of potential recipients — the people who are the right blood type, height and weight, and who have been waiting the longest or who are the sickest. The local agency then notifies the physician that the patient is being offered an organ.
Do famous or wealthy people have a better chance of getting an organ?
There is no favoritism in the system as it stands now. These listing criteria and practices and supervision of the process have evolved over the last 27-plus years. So everybody has an equal shot at getting an organ once they get on the UNOS list. Some medical issues do come into play — for instance, heart or liver failure patients who are expected to die within 30 days get priority over people who have chronic stable heart failure or liver disease. But there isn’t any way to jump the list except by the criteria of how sick you are, what your blood type is and how rare it is, and special medical circumstances.
Do lifestyle factors influence who gets organs?
I personally don’t see that our job is to judge people based upon past mistakes, but we are concerned about people who show an inability to change the behavior that led to the organ damage. If a person is actively smoking or drinking, for example, we consider that as a behavior issue that must be changed before that person would be considered for a transplant. There are so many people who would do anything to get an organ that it doesn’t make sense to offer organs to those who aren’t willing to do whatever it takes to improve their health. Patients must also demonstrate compliance with the complex regimens — exercise, medications and diet — prescribed by their physicians.
For which organ is there the largest disparity between supply and demand?
Kidneys, without a doubt. The majority of those on the waiting list are in need of kidneys, and both the ethnic and geographic disparities are higher for kidneys than for any other organ.
For instance, blacks make up 35 percent of the waiting list for kidneys, yet they represent only 12 percent of kidney donors. They are donating kidneys proportionate to their representation in the population, but their need is higher, so there’s a huge gap. And unlike other organs, kidneys are “matched” based on common genetic markers. Because the system is set up to allocate organs based on genetic similarities rather than compatible blood types, it’s likely that blacks will wait longer for kidneys than other ethnic groups.
Additionally, there is a geographic disparity between the need for kidneys and the supply of donor kidneys: One part of the country may receive a larger number of donor kidneys, which leads to higher rates of transplantation, while other parts of the country receive fewer kidneys. This is also true for livers, hearts and lungs.
What is being done to address these issues?
In response to the growing need, a number of things have been happening over the past five to 10 years, both locally and nationally. It’s important to note that clinicians are doing a better job today of recognizing potential donors, getting consent from patients’ families when appropriate and educating the public about organ donation. There has also been a significant increase in the number of living donations and donations after cardiac death.* Currently, 50 percent of organs come from living donors and 50 percent from deceased donors, and of the deceased donors, 11 percent are donations after cardiac death.
But even though the total number of donors has increased to approximately 7,000 to 8,000 per year, we’re still nowhere close to meeting the demand for organs. So the Organ Procurement and Transplant Network and UNOS have put policies in place to help alleviate this gap. In addition, the Transplant Collaborative, an initiative of the Health Resources and Services Administration, has developed best practices and is putting processes in place to better identify potential donors, enhance affirmative consent and make operational improvements regarding the placement of organs. We hope that these efforts will lead to further increases in the number of organs that will be available to those who need them.
One of the issues we still face is how to create policies that ensure equitable allocation of organs nationwide. The Board of Directors of UNOS is trying to improve and fine-tune the allocation policies to make sure everyone on the waiting list gets a fair shot at receiving a donor organ. The board also wants to ensure that every region has the same ability to identify potential need, comparable access to transplantation services, and a sufficient supply of donor organs to help patients no matter where they live.
Why is living donation a good option?
Statistics from Rush and other transplant centers around the country show that kidneys from living donors typically function better and last longer than kidneys from deceased donors because most of the patients are well matched; in fact, the donor and recipient are often related. A living donor transplant is also done in a controlled setting and can usually be scheduled, rather than surgeons and recipients having to respond quickly when a deceased donor organ becomes available. Finally, every time someone receives a living donor kidney, it enables another patient on the waiting list to then receive a deceased donor kidney. So living donation not only extends the success of organ donation and transplantation, but it has the potential to enable more than one life to be saved.
People considering living kidney donation might feel scared or awkward asking a relative or friend to donate a kidney. Where can you find guidance about how to have this important conversation?
UNOS has an excellent resource page that contains general information about living donation as well as guidelines to help patients discuss living donation with family members or friends. It’s vital that potential donors fully understand their rights, as well as the risks and benefits of living donation for both themselves and the recipients.
Why aren’t there more organ donors?
A lot of people simply haven’t discussed it with their families; they haven’t signed an organ donor card or put it in their will, so their families are not prepared to face the issue. People — especially young people — don’t expect tragedy to strike, so they don’t plan for it. But having a conversation with your family about organ donation is a healthy thing. It allows them to have some guidance about your wishes should something happen to you. Of course, organ donation may not be for everyone; but everyone should have the choice to donate organs if they wish. Quite simply, it’s the most extraordinary gift with the greatest impact that any person can have. A lot of people aren’t aware that just one organ donor can save the lives of as many as eight people, and one tissue donor can enhance the lives of as many as 50 people. It’s truly an extraordinary gift, and it really speaks to the selflessness of those who donate their organs so that others can live.
* Organ donation after cardiac death occurs when a patient has an illness (e.g., a brain injury) from which he or she cannot recover and is being kept alive by artificial means, including ventilators and supportive drugs. Once the family makes the decision to withdraw artificial support, the family is given the option to donate the patient’s liver and kidneys after his or her heart stops beating.