Last modified: 11 May 2000
On October 4, I represented TRIO New England at a meeting convened by David Mulligan, Massachusetts Commissioner of Public Health. This meeting was called to discuss the issues concerning expansion of heart and liver transplant programs in Massachusetts, specifically at the University of Massachusetts Medical Center in Worcester. I was pleased to be a participant.
Because of the duplication of effort and a further splitting of our limited donor organs, TRIO New England took a position against the establishment of any new heart or liver programs in UNOS Region 1. We feel it would not help patients and we stated our position in a letter to the Commissioner prior to the meeting. However, at the meeting it became obvious that the Commissioner was inclined to grant the Determination of Need to UMass to establish a liver program and possibly a heart program.
The logic behind the Commissioner's position is that UMass Medical School does not have access to either a heart or liver transplant program as do the other four medical schools in Boston. This puts UMass at a disadvantage in the eyes of the Department of Public Health. Since the Department of Public Health and UMass Medical Center have similar interests (i.e., they are both state organizations) and work together quite closely, the Commissioner will probably approve this request to help UMass.
Although no decision has been made yet, one is expected by Thanksgiving. At the meeting, Commissioner Mulligan asked the existing transplant programs to voluntarily come up with a plan before this deadline which can include UMass without causing disruption to the current system. I am hopeful this will be successful and I expect TRIO New England to be part of this process.
As patients, we should be concerned with two possible ramifications of the expansion of programs and try to make sure these concerns are addressed as part of the final decision:
1. No patient currently waiting for a heart or liver should be disadvantaged or have their waiting times extended because of the establishment of a new program. In the past, new transplant programs have been given special consideration in organ allocation to get them started. As always, we believe the sickest patients should be given priority. Given the already long waiting times in this region, it is unacceptable for patients to be put at a disadvantage by any expansion.
The Commissioner's actions may have the unintended consequence of spawning more new transplant programs in the other New England states, outside the jurisdiction of the Mass. Dept. of Public Health. The ramifications of this possibility could further dilute our resources and make duplication an even larger problem. The unilateral actions of the Mass. Dept. of Public Health may have repercussions far outside of Massachusetts and harm patients in other states. This should be considered in making any final decision.
2. Accessibility and affordability. I heard the word "accessibility" bandied about by a lot of folks at the meeting. This was in the context of whether it was an added hardship to have to drive an extra hour to get to a Boston heart or liver program. However, there is a larger issue here that is not being addressed. The addition of new transplant programs increases capacity and adds duplication to a system which already has excess capacity.
Accessibility means affordability to many of us. We know the Boston programs are already expensive by national standards. Currently, some insurance companies are sending patients out of the region for transplants because it is economically advantageous elsewhere.
Duplication of services is one reason the Boston transplant centers have trouble competing in a managed care environment. They must become more efficient to make them more competitive or they will find themselves without patients because of the cost of treatment. Then we will not have to worry about going to Worcester or Boston. Instead, we will have to worry about going to Cleveland, Pittsburgh, or Nashville. This would be unfortunate and even more of a hardship. Hopefully, the transplant centers will agree on changes associated with the UMass expansion that will allow the Boston programs to become more competitive.
We have always felt there are too many transplant programs in this area. We can only hope the Boston transplant centers will be able to come to some agreement that will help us all. We will keep the memberships informed in the weeks to come.
Finally, a personal observation: If the area transplant centers would devote some of the energy and resources they now expend in program expansion, turf protection and in-fighting to organ donor education, we might find increase the region's donor consent rate from the current 55% to 75-80%. With the extra personnel, financial resources, and time provided by the centers, this goalÄwhich is in the best interests of all the patients and all the transplant centersÄcould be reached.
TRIO New England would be among those grateful for help in supporting our efforts to increase the consent rate.
A recent article I wrote to promote the U.S. Transplant Games was no where near as challenging as this one, which could be the most difficult piece I have even written! Trying to describe the "Games" to someone who has never attended is nearly impossible. How does one write what is ingrained in your heart and soul?
At one point during the deeply emotional opening ceremonies, I looked over at the most important people in my life who were there with me: my wonderful husband, my two precious daughters, and my sister Grace, my friend and donor. I said a silent prayer, wishing that everyone I knew and loved, especially my mother (my first donor), could share this event with me.
As my eyes met my sister's, I knew there was an unspoken understanding and love that I cannot describe. When Grace was called down to join other donors and donor families, I was grateful for this moment. I closed my eyes and thanked God. Oh, how she and my mom and all donors deserved this recognition! At that moment, the competition seemed so secondary. My sister received a donor medal, and we brought one home to my mother, which I presented to her several days later on her 72nd birthday. I felt then that all my training was worth those two medals. Who deserved them more? Later that evening I asked my sister, "Could you ever explain this to anyone?" She shook her head without a word, almost helplessly, as if to say "What a shame. I wish I could." There are no words explicit or powerful enough to describe this miracle called the U.S. Transplant Games.
From the opening ceremonies to the final good-byes at the airport, we were overwhelmed not only physically, but emotionally and spiritually as well. It was an experience never to be forgotten.
The sadness I felt as the team dispersed was bittersweet. I was glad to be home, as Utah did not agree with me, yet I was sad to leave my old friends and the new ones I had made. We were a team held together by common threads, the miracle of transplantation, hopefulness, commitment, perseverance, courage, celebration, and the gift of life.
It did not matter if you were old or young, black or white, rich or poor, male or female, each one of us was part of something important for what we had to offer and we were making a difference.
When the guys needed a fourth for a relay, they grabbed a man or a woman, it didn't matter. When you were tired or hungry, there was someone there to help you out. When you thought you couldn't finish the race, your team, your friends, your comrades were there to cheer you on. When you gave it your all and still finished last, here was someone there to say, "You did a great job." When you felt you could not compete in your event, there was someone there saying you can do it. When you kept stopping for air, breaking the flow of the game, your opponent hugged you and said it was OK. When you lost your event, you congratulated one another for a job well done. When you went to dinner, there was always someone there to sit with and talk to. There were no strangers at these Games, only friends we had not met.
For three days we shared a bond, a commitment, a loyalty that will forever change our lives. We shared an experience that far surpasses one's physical abilities. We were blessed with an emotional and spiritual high that knows no boundaries.
Behind the long and short distance runs, the swimming, the racquet sports, the track and field, the relays, the sweat and the tears, behind all that was one of the most precious and treasured times of my life.
As I said good-bye at the airport, I looked over at a dear friend who I had met in Atlanta at the previous Games. Our eyes met, and again no words were needed. I "signed" to him, "I miss you already. See you in '98!"
Ed. Note: Vanessa Underwood is a fitness trainer/wellness consultant. She is also a kidney recipient and was part of Team Massachusetts and Rhode Island at the recent Transplant Games in Salt Lake City.
Six-year honors go to Robert Crouter (heart, Univ. of VA), Annie Knights (heart, B&W), Beverly Sowerby (heart, B&W), and Fred Carter (heart, MGH). Jack Rossini (heart, MGH) has reached the five-year milestone, while Paul Redmond (kidney, B&W) is celebrating his four-year anniversary.
Three-year anniversaries are being celebrated by David Boocock (kidney, NEDH), Marcia Bujan (kidney-pancreas, BI), and James Heelon, Jr (liver, NEMC). Congratulations also to Nancy Russell (liver, NEDH) and Robert McIntosh (liver, UCLA Medical Center) who are both celebrating their second anniversaries.
Finally, best wishes to our freshman crop: Peggy Goosley (double lung, B&W), Ronald Forte (liver, NEMC), and Joy Knight (liver, Mayo Clinic) all had their transplants one year ago this month.
Both parties will be held at the normal meeting places (Maine Medical Center and Lahey-Hitchcock Clinic). There will be plenty of time for chit-chat and laughterÄmaybe we'll even have a few surprises. To add to the festivities, the chapter will serve light refreshments, so skip dessert that night.
Lahey Clinic
October 24, 7:30 p.m. Richard Rohrer, MD, Chief of Transplant Surgery at New England Medical Center and UNOS Regional Councillor, will give an overview of UNOS, discuss regional issues, and answer questions.
December 5. Holiday social.
Maine Medical Center
November 6. Leigh Baade of the New England Disability and Business Technical Center will speak on the ADA and employment issues.
December 4. Holiday social.
OTHER MEETINGS
In addition to the educational/ support series described above, TRIO New England sponsors meetings at the following locations:
Martin Smith
TRIO New England
Lakeside Office Park
607 North Avenue, Door 14
Wakefield, MA 01880
Phone: 617-224-1270
Fax: 617-224-1929
email: BYGJ31A@prodigy.com
Last modified:
11 May 2000