Billy Partain, left, and his husband Joseph Keenan are shown in a photograph taken around 1997, when the couple began dating. Keenan, a registered organ donor, died in January 2018 of an asthma attack, and saved three lives with the organs he donated. (Photo courtesy of Billy Partain)
Joseph Keenan only needed to check a box.
Some years ago, when Keenan and his husband Billy Partain visited the Rhode Island Department of Motor Vehicles (DMV), the couple briefly discussed the “organ donor” box on their license applications. Both men became licensed organ donors when they filled in their respective squares.
It was that tiny, affirmative mark that led to the donation of three of Keenan’s organs — kidneys, liver and heart — when he died at age 48 of a sudden asthma attack in January 2018. Time has not healed all of Partain’s wounds — but he can still hear his husband’s heartbeat, thanks to the bond he’s formed with the recipient’s family.
“I am invited to every holiday and birthday party of theirs, and there’s always a stethoscope around,” Partain, a Pawtucket resident, said in an interview. “I want to listen to his heart again.”
Partain’s story may resonate with a few more Rhode Islanders this year: Data released Jan. 14 by New England Donor Services (NEDS) shows the Ocean State had a record number of donors and transplants in 2024. There were 47 organ donors and 125 transplants through the organization in Rhode Island.
Across New England, there were 648 deceased donors who made possible the 1,570 transplants coordinated by the Waltham, Massachusetts-based NEDS. The organ procurement nonprofit organization works with about 200 hospitals in New England. Last year was the fourth consecutive year that donations increased: The 2024 numbers represent an 80% accumulative increase since 2020, according to the donor service.
Five of the six New England states saw a record number of donors, according to NEDS.
- Connecticut: 166 donors and 398 transplants, a record in both categories.
- Massachusetts: 291 donors and 688 transplants.
- Maine: 78 donors and 183 transplants.
- New Hampshire: 65 donors and 175 transplants.
Numbers were not immediately available for hospitals in Vermont. NEDS is one of two organ procurement organizations in the state.
The good news comes as organ procurement organizations face more pressure to connect donor organs with the people who desperately need them. Federal rule changes approved by the Centers for Medicare and Medicaid Services (CMS) tie certification for organ procurement organizations with performance metrics. A final rule, first codified in 2020 and amended in 2022, will take effect when organizations are recertified in 2026 — the first recertification under the new rule.
The new final rule is meant to “hold underperformers accountable,” according to a CMS blog post. In this case, underperforming means not transplanting enough organs. In 2023, only 26% of procurement organizations were considered to be Tier 1 quality by CMS, which guarantees recertification. The three-tier system was created as part of the 2020 rule. NEDS has been rated as Tier 2 since 2021 and was Tier 3 in 2020, according to CMS data from 2023.
Informing the CMS rules is federal data showing there are thousands of people waiting for organ donation. Health Resources and Services Administration numbers from September 2024 showed 103,223 people on the waiting list, with an estimated 17 people dying each day because they couldn’t get a transplant. In the meantime, the feds have worked to streamline the organ transplant pipeline.
Last July, the New Hampshire Bulletin reported that NEDS, like many organ donation services in the country, could potentially drop to CMS’ list of “Tier 3” organizations, meaning it wouldn’t be recertified automatically and would need to vie with other procurement organizations for a CMS contract. NEDS President and CEO Alexandra K. Glazier told the Bulletin then that procurement orgs don’t always have control over hospital’s actions with the organs. A December blog post from NEDS continues to argue that recent data shows the new CMS methodology for tiers is flawed.
I am invited to every holiday and birthday party of theirs, and there’s always a stethoscope around. I want to listen to his heart again.
– Billy Partain, whose late husband was an organ donor
Glazier wrote in an email to Rhode Island Current that the 2024 numbers were very encouraging, and that NEDS was the third-busiest organ procurement organization nationwide, “and well above the median” required by CMS for easy recertification, she noted.
“However, it is not possible to know for sure how the metrics will reflect our 2024 efforts when the federal government releases their performance report for this year, which will not be until in 2026,” Glazier said, arguing that CMS metrics are “are not risk adjusted for such basic factors as the donor’s age and cause of death” and are statistically biased against large organ procurement outfits like NEDS.
But the recent numbers made Glazier optimistic: “We are confident we will remain certified by CMS but given the significant flaws in the metrics, nothing can be 100 percent certain,” she said.
In Rhode Island, bipartisan House bill H5020 would also make it easier for living donors to give an organ, at least if you’re a state employee. Introduced Jan. 10 by Rep. John Edwards, a Tiverton Democrat and the Majority Floor Manager, the bill was referred to the finance committee but is not scheduled for a hearing as of this writing. Established state employees who worked enough hours in the year previous to the transplant could get up to 60 calendar days of paid leave for kidney or liver segment donation. Donating bone marrow could grant up to 30 calendar days of paid leave.
‘This saved my life as well’
But when the system works and donations are received, they can change the lives of recipients and donors alike. Partain said the man who received his husband’s heart was able to walk his daughter down the aisle at her wedding.
“You know that we talk a lot about the recipients of organ donation, and it literally saves their lives,” Partain said. “But you know, this saved my life as well…They’ve just completely helped in my healing.”
The day Partain and Keenan signed up to be organ donors was early on in their two decade-long relationship. The couple had just moved in together, and they went to get licenses with their new, now shared, address.
Partain’s long relationship with Keenan, who worked as a stylist at Impulse Hair Designs in Providence, has motivated him to be an activist among LGBTQ people, and has volunteered for NEDS at events like Rhode Island Pride to publicize organ donation registration to a community that might not always consider it.
“A lot of people in this community mistakenly believe that we cannot become organ donors,” Partain said, a confusion he attributed to the longstanding ban on blood donations from “men who have sex with men,” as the Food and Drug Administration (FDA) defines the demographic.
That ban began in 1985 amid the AIDs crisis, and barred men who have ever had sex with men from donating blood. In 2015, the FDA narrowed the ban from a lifetime prohibition to a yearlong one — meaning gay men could finally donate blood, but only if they hadn’t had sex in at least a year.
In 2023, the FDA slashed away the final remnants of exclusion, and made eligibility for blood donation based on individual risk factors, rather than a person’s sexual preferences.
Keenan’s corneas weren’t donated, Pertain said, “even though we were in a monogamous, 20-year relationship.” Corneas, the protective layer of an eyeball, are made of soft tissue, and have been regulated in ways similar to blood when it comes to organ donation. But that could soon change, too: A set of draft guidance documents issued Jan. 7 by the FDA would restructure tissue donation eligibility to also be based on individual risk factors.
Partain continues telling the story of his husband’s gift — even in his work as a clinical quality coordinator at Roger Williams Medical Center and Our Lady of Fatima Hospital in Providence. Every few weeks, he tells Keenan’s story again to new hires during orientation, hoping a few more people might check that organ donation box when renewing on the DMV form.
“When it comes to death, no one wants to talk about it, and people get very uncomfortable around it,” Partain said. “It’s impossible to find anything positive in death. But organ donation is something that is positive, and it gave me such peace and comfort. I just think that that’s important for people to know.”
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