Starting this September, the system used to determine the medical urgency status of candidates on the heart transplant waiting list and how donor hearts are allocated will change — here’s what you should know.
Heart transplantation is widely accepted as the most effective treatment option for patients suffering from advanced and end-stage heart failure. However, while the number of people being added to the waiting list has continued to increase, the number of available donor hearts has remained limited — in other words, patient demand has greatly outpaced supply.
In the United States, the United Network for Organ Sharing (UNOS) is the organization responsible for the allocation of donor hearts to patients on the waiting list for a heart transplant. Because there simply aren’t enough donor hearts to go around, UNOS has developed a system to prioritize patients on the waiting list based on their medical urgency status.
Originally instituted in 1992, UNOS has revised its allocation system a number of times over the years, both in an effort to make heart allocation fairer and more equitable, and to keep pace with advances in heart failure treatments and technologies. UNOS recently announced that it will be implementing a revised adult heart allocation system starting this September, but before we discuss these changes, let’s cover some of the basics.
How do I get on the heart transplant waiting list?
First you need a referral from a doctor who specializes in heart disease. Once you have a referral, learn as much as you can about the 200+ transplant hospitals in the United States and choose one based on your needs, including insurance, location, finances, hospital expertise and experience and support group availability. Because heart failure is progressive and unpredictable, it’s important to select a hospital that offers, and is experienced with, the full spectrum of cardiac devices currently available in case you should need one.
Once you’ve selected a transplant center, contact the heart failure/transplant program to schedule an evaluation to determine if you are a good candidate for a heart transplant. If the hospital’s transplant team determines that you are, they will add you to the national waiting list.
How does the organ allocation system work?
The UNOS adult heart allocation system is based on medical urgency (how sick you are) and benefit gained from transplantation (how well doctors predict you’ll do after receiving a transplant). Each transplant candidate is assigned a medical urgency status by their hospital’s transplant program based on specific medical criteria. A candidate’s status may change over time depending on their health and the treatment(s) they are receiving.
For patients with special needs, issues or complications that the system does not directly address, their transplant team can request an exception that allows them to list the patient in a status that more accurately reflects their level of urgency. A regional review board (RRB) of medical experts reviews the request, taking into account only the patient’s medical information — no personal information will be considered in their decision.
Typically when a donor heart becomes available, it is offered first to candidates who:
Are listed at a transplant hospital within close proximity to the donor hospital
Have a matching blood type with the heart donor
Have the highest medical urgency status on the waiting list
If a match becomes available for you, your transplant team will receive more detailed medical information about the donor heart, at which point they will decide to decline or accept the offer. A hospital might decline an offer if the transplant candidate is too sick at the time to be transplanted, or because certain medical facts suggest the heart wouldn’t be a good match.
If there are no local matches for urgent candidates, or if no local programs accept the heart, candidates who match the donor listed at hospitals farther from the donor hospital will get offers next. The most medically urgent candidates are considered first, followed by less urgent candidates who are a good match to the donor. At any level of match, if two or more candidates share the same status, then the person who has been waiting the longest in their status gets priority.
Why is UNOS changing its allocation system?
Since the last revision of the heart allocation system in 2005, technological advances in device therapy, improved patient selection criteria and increased clinician experience with device management have resulted in improvements in outcomes for advanced heart failure patients, which has prompted UNOS to reconsider how patients are prioritized.
How are the statuses changing?
The revised system expands the three existing medical urgency statuses (Status 1A, 1B and 2) to six (Status 1 – 6). If you are listed Status 1 or Status 2, you are considered to be in the most urgent need of a heart transplant. You will be considered before patients with Status 3 through Status 6 for heart offers from a much wider geographic area than under the current system — up to 500 miles from the donor’s location.
Your status may change over time if your condition improves or worsens, or if your treatment changes. Your transplant team is the best source of information regarding your current priority status.
How will these changes affect SynCardia TAH recipients specifically?
Under the current system, SynCardia temporary Total Artificial Heart (TAH) patients are listed Status 1A while in the hospital, then Status 1B after they’ve been discharged using the Freedom® Portable Driver. Under the new system, TAH patients will be classified as Status 2 and remain Status 2 for as long as they are supported by the device, regardless of their discharge status.
Where can I go for more answers and information?
If you have additional questions, your transplant team should be your primary resource. They can provide you with detailed information about your condition, treatment options and medical urgency status on the waiting list.
You can also reach out to UNOS Patient Services at 1-888-894-6341 for more information about the upcoming changes to the heart allocation system or heart allocation in general.
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