Thursday, July 28, 2011

A Compelling Story

To Whom It May Concern,

I have what I believe will be a story of interest to you and your public. A few weeks ago, international news media carried a story concerning the the first synthetic organ tissue transplant performed by Dr Paolo Macchiarini (see First Successful Transplantation of a Synthetic Tissue Engineered).

Dr. Macchiarini is a newly appointed Professor of Regenerative Surgery at the Karolinska Institute in Stockholm, Sweden and also works in Florence, Italy and Barcelona, Spain. He performed the historic surgery last month in Stockholm transplanting a trachea which had been grown on a bio-synthetic matrix using the patient's own stem cells.  Macchiarini and his team have performed ten such operations in the past two years using stem cell regeneration, but all previous operations have used a matrix or "scaffold" from a human donor.  The successful medical breakthrough of the use of a bio-synthetic matrix means that not only will doctors in the near future be able to reconstruct ailing body parts using the patient's own stem cells, and thereby greatly reducing the possibility of rejection of the transplanted tissue, but they will also be able to precisely construct those parts using a computer to create a matrix that will exactly match the structure of the patient's original tissue.

Dr Macchiarini is in Burlington, Vermont this week speaking at a conference on Regenerative Medicine at the University of Vermont. However, most people are not aware that a part of the reason for his visit was to evaluate my wife, Rachel Phillips, a Burlington resident, for this surgery. Rachel is 34 years old and a former dancer with the Royal Ballet of London. She also danced at the Kirov in Russia, the Nashville Ballet, Ballet West in Salt Lake City, Utah and other dance companies both here and abroad. Rachel and I moved to Vermont originally to start a performing arts school. Unfortunately she developed a serious medical condition that has caused her to put her life on hold for the past several years. Her airways are failing from severe tracheobronchomalasia (TBM), a condition that causes trachea and bronchial airways to collapse. The underlying condition that brought about this problem in her case was Elhers-Danlos Syndrome (EDS) - a genetic, connective tissue disorder that affects the collagen in the body.

Over the past two years, doctors have tried numerous surgeries, tests, and other procedures - including over 30 bronchoscopies in the past twelve months alone - in an attempt to try to find a solution for her. However, recent test have verified that she is currently collapsing approximately 90% on normal exhalation - a condition which requires her to wear a special, portable CPAP unit with oxygen support to be able to keep her O2 levels acceptable. She also has a special service dog, named Siena, a four year old Labradoodle who is specially trained to detect, by scent, a decline in her O2 levels and warn her when they fall below acceptable limits. Last fall, Rachel had a tracheobronchoplasty surgery in Boston to try to hold her airways open using a surgical mesh to strengthen the back of the tissue. However the procedure has proved unsuccessful.

Last month we met with Armin Ernst, MD - Caritas Christi Health Care in Boston, MA who has been advising us on the case for over a year now. After his bronchoscopy and review, we were told that there were no other options that they could offer us in the US and that the collapse has rapidly worsened since the operation last fall. Dr. Ernst recommended that we contact Dr. Macchiarini to seriously consider the regenerative transplant option.

We initially met with one of Dr. Macchiarini's associates who was in Burlington, Vermont last month for a review of her case. At that time we were told that they would likely be able to offer the surgery to us, pending additional tests and a final review of the case. Earlier this week, we met with Dr. Macchiarini at Fletcher Allen Medical Center in Burlington, Vermont for an extensive evaluation of her condition, including, yet another bronchoscopy. After looking at the results, Paolo offered to take our case and is currently preparing the paperwork to allow him to operate on Rachel to attempt to repair the failed surgery. He will be taking stem cells from Rachel to grow a bio-synthetic airway replacement to be able to transplant immediately if the surgical repair is unable to correct the situation. We were also told that we have exhausted all other options and, without the surgery, Rachel will die from the condition. The extent of the collapse has progressed so rapidly that waiting as much as a year is no longer an option.

Dr. Macchiarini is making tentative plans to do the surgery sometime in October. At this time, it is uncertain if the procedure will be done in Europe or here in the US, which may be more problematic than the European option due to regulatory issues. My wife and I are currently in the process of trying to find funding options to offset the costs of the procedure which, we are told could run up to $300,000.00, not including our cost for an extended potential stay oversees for the procedure and recovery period, if it cannot be done in the States. This is in spite of the fact that Dr. Macchiarini has offered t do his part at no cost to us. None the less, the financial issues represent a huge mountain for us to climb.

Macchiarini is also an outspoken advocate of health care reform. He told us he believes it to be “criminal” for patients in the US to have viable lifesaving treatment options which are not available to them due to the lack of funds. On this subject he brings his considerable expertise to bear in very practical terms. He quickly compared for us the on going cost of over 30 bronchoscopies and numerous hospitalizations that could be more than offset, in Rachel's case, if stem cell regenerative surgery could resolve the problem. When you add the additional costs of numerous Emergency Room visits, and several extended stays in the Intensive Care Unit, to say nothing of the medications and ongoing visits to our primary care physician and other specialists, it is easy to see what the potential saving could be.

Dr. Dan Weiss (UVM College of Medicine) is our pulmonologist in Burlington. He is involved in stem cell research at the University of Vermont and was instrumental in bringing Macchiarini to the Regenerative Medicine conference. Dr. Weiss is the person responsible for putting us in contact with Dr. Macchiarini over a year ago. Together with our primary care physician, Dr. Anne Knott (see Winooski Family Health), the two doctors have given selflessly of their time over the past two and a half years to advocate for Rachel. For example, Dr. Weiss has been present at all of the more than 30 bronchoscopies performed on Rachel, even though another physician performed the procedure. He has done this without regard to the fact that these are “un-billable” hours simply to keep himself apprised of her situation and to reassure her that someone is keeping tabs on her case. Dr, Knott has advocated with doctors, clinics and hospitals here, in Boston, in Maryland, and in the Washington, D.C. area to help find viable treatment options for us. The endless forms these doctors and their staff members have had to complete for us and dozens of phone consultations that they have made have not been something they could bill to our insurance. But without their tireless support, none of this would have been possible nor would we have had the current opportunity with Dr. Macchiarini.

It is our understanding that ABC News has expressed interest in doing a documentary if Dr. Macchiarini does, in fact, choose an American for the new surgical procedure. For this reason e specifically gave us permission to discuss our case with the news media.

It was my thinking that, given the the fact that this represents an American and a resident of Vermont who was being evaluated for this ground breaking medical procedure within weeks of the first transplant hitting the news, you would doubtless appreciate the local and perhaps national news interest in such a story. In addition, the fact that it also involves stem cell research being done in the US, the fact that the patient is a former London Royal Ballet dancer, the fact that she has a special trained "O2 Sniffing" service dog to assist her, etc., there would be numerous additional reasons this story would be compelling to your audience. Should you or your staff wish to be in contact us and/or Dr. Macchiarini you can reach us at this email address, or by phone at 802-735-2211 or by cell phone at 802-503-1211.

For photos of Rachel at the Royal Ballet as well as several pictures showing the service dog and Rachel's current condition please visit:

For a brief clip about the story done on our local ABC TV station please visit:

Thank you for your consideration.
Very Truly Yours,

Steven and Rachel Phillips

1 comment:

  1. Rachel and Steven
    Your strength and perseverance is more than inspiring. May all the necessary elements perfectly align for this historic event in yours and all of our lives. You are in so many hearts at this very moment. May this story spread to those who will be of help. I will do everything that I can. It is an honor. Always, G.Melvin, M.A.-SLP