Monday, June 17, 2013

Of blessings, curses, and transplanted lungs / Balak

(NB: This drasha was written two weeks ago, before Sara Murnaghan's name was placed on the transplant list alongside adults waiting to receive lungs. Sara received lungs that were transplanted into her on June 12, 2013.)

Parshat Balak tells a pretty wild story: Balaam, a Moabite prophet hired by the Moabite king to curse Israel, is prevented from doing so by God, who uses a talking donkey to insure that Balaam cannot fulfill his mission, which originally God had enjoined him to reject and subsequently gave him permission to pursue, at least somewhat. Is your head spinning yet?

We all get caught up in the talking donkey, which is arguably the most intriguing animal in the Bible. But I have always wondered: Does Torah believe that Balaam has the power to curse Israel in such a way that Israel’s fortunes and future are determined, or even influenced, by his utterances? Given that Balaam’s intended curse is antithetical to God’s desire, how could his curse — or for that matter, his blessing — make a difference?

Upon meeting King Balak, Balaam tells him:

How can I damn whom God has not damned,

How doom when Adonai has not doomed? (Numbers 23:8)

It appears that the Torah believes Balaam to have life and death power, which is why God is so interested in telling him what he may, and may not, say.

As I write this, 10-year-old Sara Murnaghan survives only thanks to a respirator in Children’s Hospital of Philadelphia (affectionately known as CHOP).  She suffers from cystic fibrosis, an autosomal recessive genetic disorder that has so severely damaged her lungs that Sara cannot breath without the ventilator. She has been on a transplant list for 18 months. Well, sort of.

The Organ Procurement and Transplantation Network (OPTN), established by Congress in 1984, maintains the national waiting list. The United Network for Organ Sharing  (UNOS) is a non-profit organization that does the administrative work of the OPTN, determining who receives the drastically inadequate supply of lungs available for transplant in the United States — that is, for people 12 years old and up. Sara, you’ll recall, is 10. The system does not cover her.

In short, the two primary factors under consideration are how long the patient is expected to live without a transplant, and how long the patient is expected to live if given the transplant. Calculating these probabilities is not simple. Among the many factors are age, body mass, blood type, and geographic location, because in general the transplant must take place within two to four hours of removal from the donor. The new technique of “ex vivo” for assessing, storing, and reconditioning damaged lungs may extend this deadline considerably. A computer program makes the calculations according to the criteria and scoring people have devised, and patients are placed on a waiting list accordingly. The computer also makes the shidduch (match) when donor lungs become available. The computer program is, in a strange way, the purveyor of blessings and curses: its programming makes life and death decisions.

The current system was set into motion in 2005, replacing a previous first-come first-served system; it has significantly decreased mortality on the waiting list. (Here is an excellent explanation of how the system works.)  Many people poured countless hours into creating the current system, and we have reason to be grateful to them for the vast improvement they put in place in 2005. There is also good reason to re-examine the current criteria and formula for assigning donor lungs. There are 50 times as many people on the waiting list as there are lungs to transplant. Therefore, there is good reason to ask whether 12 years old is a medically sound, or somewhat arbitrary, cut-off. If a 10-year-old is large enough to accommodate adult size lungs (which no doubt come in a range of sizes, as do 10-year-olds), why exclude Sara from the waiting list? The claim has been made that there is insufficient data on children to include them in the program. The problem with that approach is that children are far more likely to be consigned to death if they don’t have a chance at the national supply of donor lungs. Moreover, perhaps the data is lacking because children so rarely receive lungs; we then have a vicious circle going. Certainly, we might say that living with cystic fibrosis is a curse. But we might also say that children under 12 are cursed in the pursuit of lungs for transplantation by the current system.

Sara secured a spot on the list on June 5th because her parents sued Health and Human Services, and a U.S. District Court Judge Michael Baylson ordered HHS Secretary Kathleen Sebelius to suspend the 12-year-old cutoff rule and include Sara on the list. Almost immediately, the mother of Javier Acosta initiated a lawsuit, as well. Javier is 11 years old; his older brother died of cystic fibrosis in 2009.

The system for determining who receives donor lungs will now be revisited, as it should be. Together with improved technology (and “ex vivo” research does indeed look promising) I hope and pray that many more children and adults will receive the transplants they so desperately need to live and enjoy the blessings of life.

As Balaam looked up and saw Israel encamped tribe by tribe, the spirit of God came upon him. Taking up his theme, he said…

How fair are your tents, O Jacob,

Your dwellings, O Israel!

Like palm-groves that stretch out,

Like gardens beside a river,

Like aloes planted by the Lord,

Like cedars beside the water… (Numbers 245-6)

May all those in need receive the supreme blessing of life-saving organs; may they stretch out like palm trees, aloes, and cedars beside the river, enjoying a full and meaningful life.

© Rabbi Amy Scheinerman

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