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Social Media and Pediatric Lung Transplantation in the US


George B Mallory, Jr, MD
Texas Children's Hospital
Houston, Texas
gbmallor@texaschildrens.org

Stuart C. Sweet, MD, PhD
St. Louis Children's Hospital
St. Louis, Missouri
sweet@kids.wustl.edu




The parents of 10 year old Sarah Murnaghan, a child with cystic fibrosis in Philadelphia who had been waiting 18 months for lung transplant, ignited a media frenzy when they made public their concerns that allocation policies in the United States might prevent their child from receiving a transplant [1].

The episode raised several important ethical questions, including the responsibility of the media and public officials to avoid propagation of misinformation regarding a complex issue, the role of the courts in decision making regarding complex policies involving allocation of scarce health care resources, and the inequity inherent in the media and others promoting the interests of a single lung transplant candidate when there are more than 1700 patients currently listed for lung transplant in the United States including (at that time) 29 others under 12 years of age [2]. Others have and will continue to opine in regard to these issues.

We would like to focus on the issues in this case relevant to pediatric organ allocation and transplantation. We believe that the following points of clarification may be helpful for families, transplant caregivers and other stakeholders to ponder:

First and foremost, there remains an important and life-limiting shortage of suitable donor lungs for candidates of all ages. Infants, children and adults are still dying on the wait list despite enormous past and ongoing efforts to increase organ donation and develop the most transparent, equitable system of lung distribution possible. Similar challenges exist for patients waiting for heart, liver and kidney transplant. As American Society of Transplantation President Dan Salomon put it succinctly in his recent blog "It's Organ Donation Stupid".

Lungs are the transplantable organ most likely to be unsuitable for transplant in a brain dead donor due to issues of infection, trauma, fluid overload or atelectasis. The assessment of the quality of donor lungs is a challenging endeavor and management of donors after organ offers has improved in recent years leading to an absolute increase in lung transplantation in the past five years. However, most of this increase is in adult lung transplant (the number of pediatric lung transplants in the United States has remained relatively flat over the past 5 years) and is a result of increased yield of lungs from adolescent donors. In recent years lungs are procured from more than 35% of adolescent donors of any organ, compared to less than 25% 10 years ago. In contrast, lungs are currently procured from less than 10% of donors aged 10 or younger and less than 15% of donors of any age [2]. This observation calls into question one of the fundamental arguments used in the Murnaghan case: that there are too few pediatric lung donors. The reality is that the number of pediatric lung donors reported in the OPTN/UNOS database reflects a combination of supply and demand. It appears clear from this data that there is an opportunity for improvement in yield of donors from this age group. This should be a focus point for pediatric lung transplant physicians and surgeons.

Even so, infants and children are particularly vulnerable to death on the wait list because many (such as infants with congenital surfactant disorders) are ventilator dependent from birth and others have diseases such as cystic fibrosis with unpredictable and often catastrophic progression of disease. Moreover, because allocation policies for adolescent and adult organs still favor local candidates ahead of other sicker patients, in the current allocation environment for many children the absolute and relative number of organ donors of comparable age and size is very limited. There are many weeks in which there will be no suitable donor lungs anywhere in the USA for a candidate less than 12 years of age. This epidemiologic fact is undeniable and sobering. One way to address this would be to increase access for young children to adolescent organs which may, particularly for children of Sarah's age, be of suitable size. As more than 90% of adolescent lungs in the United States are currently transplanted into adult recipients, and in any given year less than 5% of lung transplant recipients in the US are children, this would seem to be an equitable solution [2,3].

Indeed, we prefer broader access to adolescent organs over increased access for children to lobar transplant from adult donors. Although the successful performance of lobar transplantation instead of whole lung transplantation has been described in the published medical literature for over 20 years, in the published series, the majority of the recipients of deceased donor lobar transplant from adult donors are adults [4,5]. The youngest reported recipient of an adult deceased donor lobar transplant was a 9 y/o [4]. Although our experience with living donor lobar transplant suggests that there are anatomic reasons that lobes will not function with the same efficiency as whole lungs, the decision about whether to consider lobar transplantation must be a decision of the transplant surgeon. Transplant center physicians and surgeons should engage in transparent and evidence based discussion of benefits and risks of this approach with individual patients and families.

Finally, the UNOS system of committees, which includes a Pediatric Committee and a Thoracic Organ Committee, has and will continue to consider modifications of organ distribution with the possibility of modifying usual rules via specific requests for waivers based on clinical facts. In fact, each of us has been a member of each committee over a number of years and knows first-hand the diligence of this process. This system has historically been transparent with decisions, proposals and policies published in the public forum with invitation from any citizen for comment. The decision of the UNOS Board of Directors in June 2013 to allow such a waiver, while unusual, is a testimony to the willingness of this organization to consider the uncommon individual situations in which the current rules might lead to disadvantage. As a general rule, we believe that government officials and politicians should be well informed about the OPTN but that the function of the OPTN should rarely, if ever, be manipulated or changed by the political process.

Overall, we hope that this case leads to significant increases in lung donation, improved access to lungs for children and reaffirmation of the transplant models of organ allocation policy development, in the US and elsewhere.

Disclosure Statement: The authors have no conflicts of interest to disclose.


References:

  1. http://edition.cnn.com/2013/05/29/health/pennsylvania-girl-lungs
  2. http://optn.transplant.hrsa.gov/latestData/rptData.asp. Accessed July 21, 2013.
  3. Distribution of recipient age for young pediatric (0-11 years) donors. Lung Allocation Score System Data Update, based on OPTN data as of Aug. 3, 2012, presented to the OPTN/UNOS Thoracic Committee, Sept. 5, 2012.
  4. Marasco S. F. et al., Cadaveric Lobar Lung Transplantation: Technical Aspects. Ann Thorac Surg 2012;93:1836-42.
  5. Benden C. et al., Size-reduced lung transplantation in children - an option worth to consider! Pediatr Transplantation 2010; 14:529-533.



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