Fight over fair­ness for liver trans­plant rules

New rules man­date wider shar­ing of or­gans

Santa Fe New Mexican - - FRONT PAGE - By Lauran Neergaard

WASH­ING­TON — Wil­nelia Cruz-Ul­loa spent the last months of her life in a New York City hos­pi­tal, wait­ing for a do­nated liver that never came. Doc­tors had urged the 38-year-old to move to an­other state that has more or­gans to go around. But she couldn’t af­ford to.

Where you live makes a dif­fer­ence in how sick you have to be to get a trans­plant, or if you’ll die wait­ing. Now the na­tion’s trans­plant sys­tem is aim­ing to make the wait for liv­ers, and even­tu­ally all or­gans, less de­pen­dent on your ZIP code. New rules man­dat­ing wider shar­ing of do­nated liv­ers went into ef­fect Tues­day de­spite a fierce and on­go­ing hos­pi­tal turf war in fed­eral court.

“Who­ever’s sick­est should have the greatest op­por­tu­nity” for an or­gan, said Dr. San­der Flor­man, a trans­plant sur­geon at New York’s Mount Si­nai Med­i­cal Cen­ter who helped care for Cruz-Ul­loa and pushed for the change. “This woman would be alive if the new rules were in place, or if she’d lived some­where else.”

But more than a dozen hos­pi­tals in parts of the Mid­west and South

sued to block the change, ar­gu­ing it will en­dan­ger their pa­tients, es­pe­cially in ru­ral ar­eas, if liv­ers must be shipped fur­ther to ar­eas with fewer do­na­tions. Late Mon­day, a judge in At­lanta de­nied their re­quest to put the rules on hold un­til the le­gal chal­lenge is de­cided. The next day, those hos­pi­tals ap­pealed, still seek­ing to halt the rules af­ter they be­gan.

At a hear­ing last week, U.S. Dis­trict Judge Amy Toten­berg made clear the de­bate weighs heav­ily: “Trans­plant is­sues have this life-and-death and emo­tional di­men­sion that car­ries over to ev­ery­one who is in­volved.”

More than 13,000 peo­ple are await­ing a new liver, ac­cord­ing to the United Net­work for Or­gan Shar­ing, which runs the na­tion’s trans­plant sys­tem. Just 8,250 got trans­plants last year, the vast ma­jor­ity from de­ceased donors. On av­er­age, three peo­ple die ev­ery day wait­ing.

That’s just liv­ers. Over­all, UNOS’ reg­istry shows nearly 114,000 peo­ple are wait­ing for an or­gan trans­plant.

Why does ge­og­ra­phy mat­ter?

Some parts of the coun­try, es­pe­cially the Mid­west, have more do­nated or­gans than other ar­eas, such as New York and Cal­i­for­nia, where the or­gan short­age is most se­vere.

And for decades, trans­plant pol­icy has been “lo­cal first” — mean­ing or­gans typ­i­cally are of­fered first to the sick­est pa­tients in the same gen­eral area as the do­na­tion, even if some­one sicker out­side the lo­cal bound­ary is a good match. The na­tion’s 11 trans­plant re­gions are sub­di­vided into lo­cal ar­eas with in­di­vid­ual wait­ing lists, with wide vari­a­tions in or­gan availability both within and be­tween re­gions.

Some pa­tients seek shorter wait­ing lists far from home, like the late Ap­ple CEO Steve Jobs, who lived in Cal­i­for­nia but in 2009 re­ceived a liver trans­plant in Ten­nessee, which at the time had one of the short­est waits.

For New York’s Cruz-Ul­loa, a den­tal as­sis­tant on Med­i­caid, that wasn’t a choice. Af­ter a years­long wait, she died in Oc­to­ber.

“They told us, ‘In Florida you could get the liver faster,’” re­called Wendy Gomez, CruzUl­loa’s wife. “I’m like, ‘But how are we go­ing to move to Florida and leave ev­ery­thing be­hind?’”

The change

Cruz-Ul­loa was part of a law­suit filed last sum­mer that ar­gued liver distri­bu­tion maps vi­o­late fed­eral law. For ex­am­ple, a liver could be shipped nearly 400 miles from Englewood, N.J., to Pitts­burgh be­fore it’s of­fered to nearby New York City. The gov­ern­ment told UNOS to find a so­lu­tion.

The new pol­icy: Pa­tients near death within 575 miles from a donor hos­pi­tal will be of­fered a liver first. If there are no tak­ers, it will be of­fered next to pro­gres­sively less sick pa­tients at dif­fer­ent dis­tances within that cir­cle. Like to­day, doc­tors will use a score based on med­i­cal tests that pre­dicts pa­tients’ risk of death over the next few months to rank those wait­ing.

UNOS pre­dicts broader liver shar­ing will save more than 100 lives as year as peo­ple with the worst scores get a shot at trans­plant ahead of those whose scores sug­gest they can wait a lit­tle longer.

Sim­i­lar shar­ing of lung trans­plants be­gan last year; changes for other or­gans are in the works.

Some hos­pi­tals fight back

Hos­pi­tals that coun­ter­sued say the new pol­icy is un­fair, too. They point to peo­ple in more ru­ral re­gions who al­ready face in­equities such as less ac­cess to health care that leave them at greater risk of death from a va­ri­ety of dis­eases.

If all or­gan banks re­cruited as many donors as the Mid­west, there’d be 1,000 more liver trans­plants a year, said Dr. Sean Kumer of the Univer­sity of Kansas Hos­pi­tal, one of the plain­tiffs. “We’ve been suc­cess­ful in do­ing this, and now peo­ple are com­ing to our area of the coun­try to take or­gans.”

Costs will rise as trans­plant teams travel far­ther to pro­cure or­gans, added a re­cent re­port from Wash­ing­ton Univer­sity in St. Louis that ex­am­ined the first months of broader lung distri­bu­tion. Spe­cial­ists cited one time when a team from St. Louis and an­other from Chicago were fly­ing to each other’s city at about the same time to retrieve lungs for sim­i­larly sick re­cip­i­ents.

UNOS pledged Tues­day to eval­u­ate if the new liver rules have the in­tended ef­fect, ac­knowl­edg­ing “this has been a chal­leng­ing time” of strife be­tween trans­plant cen­ters.

The big­ger is­sue: “I don’t think we can solve the fair­ness prob­lem un­til the sup­ply of or­gans ex­ceeds the de­mand,” Kevin O’Connor, pres­i­dent of LifeCen­ter North­west, an or­gan pro­cure­ment organization, who also heads a UNOS ge­og­ra­phy com­mit­tee, cau­tioned be­fore the lat­est court fight.

LATISHA OZUNA/WENDY GOMEZ VIA AP

This Au­gust 2017 photo shows Wendy Gomez, fourth from left, with her wife, Wil­nelia Cruz-Ul­loa, third from left, with their chil­dren and stepchil­dren at their wedding in New York. Cruz-Ul­loa spent the last months of her life in a New York City ICU, wait­ing for a do­nated liver that never came.

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