Bone-marrow Screening Drive paper
The bone-marrow screening drive for Turlough Meehan held on November 10, 2007, at Dennis Fire Department headquarters was unprecedented in terms of the number of potential donors who made the commitment to be tested. Elisé Collins, donor center manager at Dana-Farber Cancer Institute, reports that the drives usually draw between 100 to 300 people but by the end of the event at 5 p.m. an estimated 1,300 people had come forward. Ms. Collins reports that 745 swab kits were taken that day, the third-largest number in the seven years that she’s been associated with the Institute.
The drive — known as the “Mighty Meehan Event” — was organized by a team at the Dennis Fire Department using the National Incident Command System.
Turlough Eoghain Meehan was born on June 23, 2007 at Cape Cod Hospital in Hyannis, Massachusetts. The first child of Amanda-Clare and Phelim Meehan, Turlough weighed 7 pounds, 7 ounces at birth, a healthy baby boy. Sadly, in August of 2007, Turlough was diagnosed with myeloid/lymphoid leukemia (MLL), a form of the disease rarely seen in infants (A form of Acute Lymphoblastic Leukemia- ALL). By October, after months of chemotherapy failed to arrest the disease, the baby’s final hope came down to a bone-marrow transplant provided by a suitable donor.
Friends and colleagues respond
Dennis firefighter Lt Chris Guerreiro recalls the day that Amanda-Clare Meehan came to Dennis Fire Headquarters. “Amanda was in the dispatch room. She had gotten bad news about the baby and was upset. She said that Turlough needed a bone-marrow drive to help find a donor. She gave me the contact name for the Dana-Farber Cancer Institute – Elisé Collins.”
Lt. Guerreiro contacted Ms. Collins and learned that the sooner they had a drive the better for Turlough. He recalls that she gave him a rundown on what to expect and how quickly they could do it. “She gave us two dates and we took the closest one – November 10, 2007.”
“This was the first time the Meehans asked for help,” says Guerreiro. “And there were lots of people who wanted to help. The next person I talked to was the Fire Chief Mark Dellner. He was behind it 100 percent. He wanted to have the drive at the station because it was for one of our own. Later on, other facilities were offered to us but we decided to keep it at the station.”
Dana-Farber Cancer Institute
Ms. Elisé Collins is the Donor Center Manager for the National Marrow Donor Program at Dana-Farber’s Department of Medical Oncology. She relates the usual chronology of events leading up to a “pitched, patient-focused” bone-marrow drive:
“The patient and family will get news that a bone marrow transplant is a likely treatment. The first step is to get the patient tissue-typed along with that of the parents and siblings to look for a family match. If none is found, then we do a search of the “unrelated donor” registry. At some point during this process, the family will get in touch with us regarding the possibility of a donor recruitment drive. We don’t start the recruitment process, though, until the registry has been searched, There are approximately 6 million entries in the US database and 5 million in the international donor worldwide databases.”
As it turned out, there was no match for Turlough so the next step would be a donor recruitment drive.
Ms. Collins says, “It was great that Chris Guerreiro from the Dennis Fire Department called because we don’t want the patient’s family to do donor recruitment. They have enough on their plate already. They need to focus on themselves.”
Organizing a drive
Elisé Collins says that for this type of “pitched patient-focused drive” to succeed, promotion is critical.
The first action of Phelim’s colleagues on the Dennis Fire Department was to draft a letter that said, in part,
“As firefighters, we are by nature men and women of action … We see the need, we find the remedy, and we take action on those conclusions. The need is obvious. The remedy is to locate a matched donor for Turlough. Therefore, we are calling on anyone and everyone who reads this letter to take action to help Turlough fight this battle.”
As Captain Robert Marseglia says, “The baby needed a bone marrow transplant. That was our primary concern.”
“We wrote a letter and sent it out quickly and we were amazed at the response,” Guerreiro says. “Dana-Farber started getting calls immediately and we knew that it was going to be bigger than the usual 300 people that we heard would sign up to donate. From that first announcement – in a two- to three-day period — word spread on the Internet and we even got a call from England.”
Collins notes that the success of the initial promotion for Turlough’s drive was based on the firefighters putting the word out within the firefighting community. “There were tons of different stations wanting to help. For instance, the Holbrook Fire Department couldn’t come but they requested forms by mail.”
Collins says that the key activities for the local drive sponsor are securing a location, promoting the event, and recruiting volunteers “Drives are most often held in church halls and schools. We rely on the drive sponsor as the local expert who can get people in the door. We provide a guidebook and have a communications department that will help with poster templates and press releases. Tissue typing is covered by insurance but we will not turn people away who cannot pay.”
“We really recommend that people go out and try to get as much donated as possible. That can range from a school waiving the fee for the use of its gym to a printer discounting the cost of posters to the local grocery donating some snacks. We don’t want the drive sponsor to incur a lot of expense,” says Collins. “Dana-Farber will not reimburse expenses.”
Scoping the project
Group 2 Captain Robert Marseglia recalls that his group met and discussed how they could organize and manage the drive. “ We knew that this was bigger than Group 2, bigger than the Dennis Fire Department. It was going to involve the whole community.”
Marseglia knew it was important to focus on what the effort was about. “We needed to avoid head-butting right in beginning. That was the first thing I wanted Group 2 and the chief officers to know.”
“We did a lot of up-front work,” says Marseglia. “Chris Guerreiro handled planning. FF Jeff Perry stayed in contact with Phelim and worked on PR. Jeff and I went to the Dennis selectmen to inform them of what we were doing and to ask for their support and the support of the town.”
Jeff Perry reports that Jeff Larkowski was instrumental in contacting the Cape Cod Times where Sarah Harrington and Ken Borden were strong supporters. Phelim Meehan and Jeff Perry went on WQRC radio with Kevin McGonagle.
Perry says, “The whole thing ended up being a two-and-a-half-week ramp out. We knew that we had to have a good plan in place and blow it in with any and all the help we could get. We were also representing Dana-Farber at the event. It was a way for thanking Dana-Farber for all they have done. I can’t say enough about them. We wanted to help them and other families in same situation.”
National Incident Command System
According to Perry, “Captain Marseglia came up with the idea of using the NICS program and then we took it to Deputy Chief John Donlan. Deputy had been through the process. He is an instructor. His intelligence into how it worked was a huge success factor.
Lt. Guerreiro sys that using the framework of ICS “works as long as everyone buys into it. We were fortunate in having great communications.”
Captain Marseglia says he took the position of incident command because “I felt I could make the people work and feel good about what they were doing and alleviate problems – solve problems with people by helping them solve it themselves.”
Lt. Guerreiro notes “We had just gone through ICS training and we felt it was a great opportunity to use it as a group level drill. We are usually busy going to calls so any opportunity to incorporate a drill is welcome. The incident command system is something we don’t use every day.” All planning for the drive was done while maintaining normal duties. The planning team did a lot in their off hours as well.
Objective: move people
“Once we decided that we would keep it at the station we knew that flow was one of the biggest things we had to deal with, along with parking and access and egress. We were not going to have chaos – the objective was to move people,” says Marseglia. “We were challenged by the fact that we had a limited amount of space and we also had to keep our equipment free to respond. We never wanted people to be going against each other. We didn’t want to have two-way traffic.”
Marseglia details the thought process: “We needed to control in and out so we brought people in through the mechanic’s bay. That gave us apparatus floor to work with. We looked at examples of Disney theme park management. Not knowing what the weather would be, we wanted as many people inside as possible. Everything that Dana-Farber told us we needed we doubled. We wanted to be over-prepared. We made sure our photocopier was ready to go. We didn’t want one person to be turned away.”
“The DPW delivered a gravel-sand mix to create a ramp for extra parking on the grass at the side of the station,” reports Marseglia. We were fortunate to have a lot of people offer help like the AMVETS Cape Cod Post 333. They mustered 10 to 15 men for managing station parking. The Sons of Erin volunteered 3 to 6 men for controlling flow in and out of Route 28.
“A key to incident command is to minimize freelancing yet it wasn’t so rigid and we didn’t micromanage. We gave the AMVETS a task and let them handle it. We had good groups to use. We knew we could count on them.”
The incident began with three screeners and three swabbers but at the end of the day there were 10 screeners and 10 swabbers at work. The team was able to bring more people online as demand grew. “We learned what was working and not working as the event progressed” says Marseglia.
Elisé Collins says, “The Incident Command System worked well. We didn’t know what to expect. Variables included the weather and what else might be going on in town. The DFD was able to be flexible in how the event was organized.
“At one point, we locked the elevator in the open position and turned it into a screening room. When we were running out of registration forms the firefighters acted as though there was nothing worth getting worried about. Sometimes people panic and make mistakes. In Dennis, people pitched in and moved around to help with flow and swabbing. The way it was set up worked really well because the medical screening was very private. It was excellent. Everyone was aware of what was going on. There was a great communications network.”
She reports that 745 swabs were taken at Turlough’s drive. “We had brought about 1,200 registration forms. 800 forms were used between 11 a.m. and 5 p.m.” She thinks that over 1,300 people came. As far as the number of people who showed up, the Might Meehan drive was the largest. In terms of swabs, she reports that it was the “third-largest drive in the past seven years.” She further states, “In a typical month we will have anywhere from 10 to 30 requests for mail-in kits. With the Meehan event, that number hit over 200.” And that number keeps on growing.”
“Turlough will be helping people far in the future because of the outpouring of support for him.” Says Collins. “In fact, that prediction has already come true in a most remarkable way. Turlough’s uncle, Kevin, who had participated in Turlough’s drive, received a call from DFCI on the day that Turlough died, telling him that he was a match. After going through a series of further tests, he donated bone marrow that saved a woman’s life.”
“The firefighters did a great job. Their desire and their need to make it work and the fact that they were so calm stand out in my mind. I really commend them for putting it together. They took it seriously. They were the ones who made it happen – motivated by the brotherhood. It was really amazing.”
Table 1 shows the total number of registered donors inspired by Turlough. There were certainly more people interested in being tested who, due to age, health or some other reason, were not eligible to join the donor database.
|Table 1. Total of registered donors inspired by Turlough Meehan|
|Dennis FD Drive – November 10, 2007||745|
|Firefighters Academy – date?||51|
|Boston College – date?||4|
|West Barnstable FD Drive – date?||173|
|Walk-ins through Jan 2008||196|
Commentary on Donor Retention Rates by Elise Collins
To date, four donors from these drives have been requested as possible matches for four different patients.
Unfortunately, two of these four donors (both from the Dennis FD drive) have declined to go forward with additional testing and have been removed from the donor registry. This is discouraging and is a big problem we face with patient-focused drives As you can see, there is much more to this process than getting people in the door.
In this case, the focus of the drive was to save Turlough. Although our staff asked each donor “Are you willing to donate to any patient,” people who only wanted to be tested for Turlough did still join. This is unfortunate as it gives false hope to other patients in need. Because these four came up as possible matches so soon after joining (almost immediately after their tissue-typing was completed) we can infer that they have fairly unique tissue types and that the patients they matched probably had few possible donors. When a patient finds out they have a possible lifesaving donor and then that hope is taken away from them, it is devastating. This happens far too often.
Although the drive organizers did their best to educate donors and did an amazing job on the day of the drive, some donors did not understand that joining the donor registry is more than “just a cheek swab,” it is a commitment. We have discovered through this process that we need to have a much greater hand in publicizing the donor drives so that people are motivated to come to a drive, but also know what they are joining. I am sure that the majority of people who joined are willing to donate to any patient, but so far we have only a 50 percent donor retention rate.
Donor and Volunteer List
Cape Cod Hospital
Cape Cod Regional Transit Authority
Cape Rental World
Dennis Department of Public Works
Dennis Police Department
Ezra H. Baker School
Sons of Erin
Harwich Fire Department
Yarmouth Fire Department
Hyannis Fire Department
Cape Cod Mall
Cape Cod Times