August 31, 2020
To our donor families, recipients, partners and all those in our donation and transplantation community, we need your help.
As one of 58 organ procurement organizations (OPO) in the United States, Live On Nebraska’s job is to facilitate organ donation and to provide healthy organs to transplant centers throughout the country.
We care for donors across the entire state of Nebraska and in Pottawattamie County, Iowa, helping them become heroes and save others through the gift of donation. Our service area is designated by the Department of Health & Human Services (HHS).
Like any other business, we have a job to do and expectations to meet.
All OPOs are required to follow regulations directed by HHS and must also meet HHS performance metrics to remain in good standing and continue their lifesaving operations.
Right now, there are more than 100,000 people in the United States waiting for an organ transplant.
HHS has proposed new performance metrics for OPOs designed to reduce the waiting list by increasing donation rates among lower-performing OPOs.
Live On Nebraska is always pursuing improvement and whole-heartedly supports new donation metrics.
However, we feel there are issues with the proposed metrics that will not lead to the most accurate measures, and could, in fact, cause significant disruptions to the donation and transplantation system.
Understanding the Metrics
HHS is proposing two updated metrics to determine OPO performance:
Organ Donation Rate
The organ donation rate is intended to determine an OPO’s success in recovering organs from all potential donors in their services area.
The current calculation for this metric is outdated, relies on self-reported data and does not factor in all donation opportunities.
HHS has proposed updating the metric to rely on death certificate information to determine the number of potential donors in the service area. However, studies show that 30 to 60 percent of death certificates inaccurately report cause of death and, therefore, would not accurately determine the true potential number of donors in the service area.
We support using the number of ventilated deaths in a donation service area as a way to determine the potential number of donors. A potential donor must be on a ventilator, in a hospital, at the time of death for organ donation to occur. The calculation of donation rate should include only these patients for the most accurate performance metric.
Organ Transplantation Rate
The organ transplantation rate is intended to measure’s the OPO’s ability to recover as many healthy (transplantable) organs from each donor as possible.
The metric currently in place is independently-reported, verifiable, and widely supported by all stakeholders in the donation and transplantation community. It compares data from previous donations (across the country) to determine which organs should be healthy enough for transplant based on the donor’s age, size, a variety of health conditions and other risk factors.
However, HHS is recommending changing the metric to again use the death certificate information to determine potential donors. Not only does this pose the same problems mentioned above, it also does not account for the uniqueness of each donor and their risk factors. Additionally, the entire metric is too similar to the organ donation calculation, essentially only providing one opportunity to measure the OPO’s performance.
We believe the current metric is a fair measure of an OPO’s success at recovering quality organs and should be retained.
The Consequences of Falling Short
According to HHS, OPOs whose metrics are below the top 25 percent of all OPOs would be subject to decertification or closing.
This means that 75 percent of all OPOs could be shut down in a short period of time.
In the proposed rule, there is no opportunity for an OPO that falls below the threshold to put together a plan to improve their performance.
Decertification of a large number of OPOs would create chaos in the system and ultimately result in a decrease in donation and transplantation.
How You Can Help
Live On Nebraska is working with the Association of Organ Procurement Organizations (AOPO) to advocate for meaningful change. AOPO is a non-profit organization that represents all OPOs .
Please contact your representatives in Congress and ask them to address the problems with the proposed metrics. Using AOPO’s online advocacy tool, you can find and send a personalized message to your representatives in five minutes or less.
We encourage you to add to and personalize the message provided within the tool with more information relating to your connection to donation. Feel free to copy the suggested text below to get started. Be sure to update the bracketed text with your personal information:
- If you are a transplant recipient/recipient family:
[Number of months/years] ago, I received a [type of organ] transplant. Because of this gift, I have been able to [include important events, career opportunities, family milestones, and other personal information]. Please support OPO metrics that will lead to positive change so others on the waiting list have the opportunity for a second chance at life too.
- If you are a donor family:
My [loved one’s relationship to you – son, mother, sister, etc.] gave the gift of life. [He\she] is remembered as a hero for saving and healing others through organ and tissue donation. Please support OPO metrics that will lead to positive change and provide the opportunity for future donors to help as many people as possible.
- If you are in need of a transplant:
I suffer from [name of condition] and need a [type of organ] transplant. My transplant will allow me to [include goals you have – health, family, work, hobbies, etc.]. Please support metrics that will lead to positive change so myself, and others like me, have the opportunity to receive a transplant, have more time with our loved ones and give back to our communities.
- If you are a donation partner:
I am a [title or connection to donation – physician, social worker, chaplain, DMV clerk] and am proud to support organ donation. I know the difference donation can make for those in need of a transplant and those that love them. Please support OPO metrics that will lead to positive change and improve the future of donation for everyone.
Questions or Comments?
This is a complicated topic and there is much at stake. If you’re unclear about any of the subject matter or are curious about Live On Nebraska’s performance, I welcome your questions. Please feel free to email me for more information.
President & CEO, Live On Nebraska