Trump or­ders re­vamp of kid­ney dis­ease care

The Olympian - - Front Page - BY LAU­RAN NEER­GAARD

Pres­i­dent Don­ald Trump signed an ex­ec­u­tive or­der Wed­nes­day re­vamp­ing care for kid­ney dis­ease so more peo­ple whose kid­neys fail can have a chance at early trans­plants and home dial­y­sis, and oth­ers don’t get that sick in the first place.

Trump said his or­der was aimed at “mak­ing life bet­ter and longer for mil­lions” by in­creas­ing the sup­ply of do­nated kid­neys, mak­ing it eas­ier for pa­tients to have dial­y­sis in the com­fort of their own homes and pri­or­i­tiz­ing the devel­op­ment of an ar­ti­fi­cial kid­ney.

The changes won’t hap­pen overnight be­cause some ini­tia­tives will re­quire new govern­ment reg­u­la­tions.

Be­cause a se­vere or­gan short­age com­pli­cates the call for more trans­plants, the Trump ad­min­is­tra­tion will try to ease the fi­nan­cial hard­ships for liv­ing donors by re­im­burs­ing them for ex­penses such as lost wages and child care.

“Those peo­ple, I have to say, have never got­ten enough credit,” Trump said. “What they do is so in­cred­i­ble.”

Another key change: steps to help the groups that col­lect de­ceased do­na­tions do a bet­ter job. Trump said it may be pos­si­ble to find 17,000 more kid­neys and 11,000 other or­gans from de­ceased donors for trans­plant every year.

For fam­i­lies like those of 1year-old Hud­son Nash, the lack of or­gans is fright­en­ing. Hud­son was born with dam­aged kid­neys, and his par­ents hope he will be big enough for a trans­plant in another year. Un­til then, “to keep him go­ing, he takes nu­mer­ous medicines, re­ceives mul­ti­ple

shots, blood draws and more doc­tors’ vis­its than I can count,” said his mother, Jamie Nash of Santa Bar­bara, Cal­i­for­nia.

To­day’s sys­tem fa­vors ex­pen­sive, time-con­sum­ing dial­y­sis in large cen­ters — what Trump called so oner­ous “it’s like a full-time job” — over eas­ier-to-tol­er­ate at-home care or trans­plants that help pa­tients live longer.

More than 30 mil­lion Amer­i­can adults have chronic kid­ney dis­ease, cost­ing Medi­care a stag­ger­ing $113 bil­lion.

Care­ful treat­ment — in­clud­ing con­trol of di­a­betes and high blood pres­sure, the two main cul­prits — can help pre­vent fur­ther kid­ney de­te­ri­o­ra­tion. But more than 700,000 peo­ple have end-stage re­nal dis­ease, mean­ing their kid­neys have failed, and re­quire ei­ther a trans­plant or dial­y­sis to sur­vive. Only about one-third re­ceived spe­cial­ized kid­ney care be­fore they got so sick.

“My health care providers failed me at the be­gin­ning of the dial­y­sis con­tin­uum,” said trans­plant re­cip­i­ent Tu­nisia Bul­lock of Rocky Mount, North Carolina. Her kid­ney fail­ure struck while she was be­ing treated for another dis­ease, and she woke up in the hospi­tal at­tached to a dial­y­sis ma­chine. She told Trump that she hoped the new ini­tia­tives help other pa­tients find care “with less con­fu­sion and more ease.”

More than 94,000 of the 113,000 peo­ple on the na­tional or­gan wait­ing list need a kid­ney. Last year, there were 21,167 kid­ney trans­plants. Of those, 6,442 were from liv­ing donors, ac­cord­ing to the United Net­work for Or­gan Shar­ing, which over­sees the na­tion’s trans­plant sys­tem.

“The longer you’re on dial­y­sis, the out­comes are worse,” said Dr. Amit Te­var, a trans­plant sur­geon at the Univer­sity of Pitts­burgh Med­i­cal Cen­ter, who praised the ad­min­is­tra­tion’s ini­tia­tives.

Too of­ten, trans­plant cen­ters don’t see a kid­ney pa­tient un­til he or she has been on dial­y­sis for years, Te­var said. While any trans­plant is prefer­able, one from a liv­ing donor is best be­cause those or­gans “work bet­ter, longer and faster,” Te­var said.

Among the ini­tia­tives that take ef­fect first:

Medi­care pay­ment

A changes that would pro­vide a fi­nan­cial in­cen­tive for doc­tors and clin­ics to help kid­ney pa­tients stave off end-stage dis­ease. The goal is to lower the num­ber of new kid­ney fail­ure cases by 25% by 2030.

A bonus to kid­ney

A spe­cial­ists who help pre­pare pa­tients for early trans­plant, with steps that can be­gin even be­fore they need dial­y­sis.

Ad­di­tional Medi­care

A changes so that dial­y­sis providers can earn as much by help­ing pa­tients get dial­y­sis at home as in the large cen­ters that pre­dom­i­nate to­day. Pa­tients typ­i­cally must spend hours three or four times a week hooked to ma­chines that fil­ter waste out of their blood.

Home op­tions in­clude portable blood-cleans­ing ma­chines, or what’s called peri­toneal dial­y­sis that works through an ab­dom­i­nal tube, usu­ally while pa­tients are sleep­ing.

To­day, about 11% of pa­tients in kid­ney fail­ure get at-home dial­y­sis and an ad­di­tional 3 per­cent get an early trans­plant. By 2025, the goal is to have 80% of peo­ple with newly di­ag­nosed kid­ney fail­ure get­ting one of those op­tions, of­fi­cials said.

Th­ese changes are be­ing put in place through Medi­care’s in­no­va­tion cen­ter, cre­ated un­der the Oba­maera Af­ford­able Care Act and em­pow­ered to seek sav­ings and im­proved qual­ity. The ad­min­is­tra­tion is re­ly­ing on the in­no­va­tion cen­ter even as it ar­gues in fed­eral court that the law that cre­ated it is un­con­sti­tu­tional and should be struck down en­tirely.

Other ini­tia­tives will re­quire new reg­u­la­tions, ex­pected to be pro­posed later this year. Among them:

Al­low­ing re­im­burse­ment

A of lost wages and other ex­penses for liv­ing donors, who can give one of their kid­neys or a piece of their liver. The trans­plant re­cip­i­ent’s in­sur­ance pays the donor’s med­i­cal bills. But donors are out of work for weeks re­cu­per­at­ing, and one study found more than one-third of liv­ing kid­ney donors re­ported lost wages, a me­dian of $2,712, in the year fol­low­ing do­na­tion.

DOUG MILLS NYT

Pres­i­dent Don­ald Trump greets a young at­tendee dur­ing an event about kid­ney health Wed­nes­day where he is­sued pro­pos­als aimed at im­prov­ing med­i­cal care.

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