Na­tional Mar­row Donor Pro­gram pushes for sign-ups Find­ing match proves dif­fi­cult for mi­nori­ties

The Washington Times Weekly - - National - BY LAURA KELLY

The Na­tional Mar­row Donor Pro­gram has a list of 30 mil­lion po­ten­tial bone bar­row donors. Yet, Shel­don Mba is still search­ing for a donor six years af­ter he was di­ag­nosed with a rare, life-threat­en­ing dis­or­der in which the body de­stroys its own blood cells.

On top of fight­ing against the sta­tis­ti­cal prob­a­bil­ity of find­ing a stranger with a ge­netic makeup iden­ti­cal to his own, Mr. Mba faces chal­lenges be­cause of his race.

As a black per­son, he has a 66 per­cent chance of find­ing a match through Be The Match, the na­tional bone mar­row registry, while some­one who is white has a 97 per­cent like­li­hood. His­pan­ics, Amer­i­can In­di­ans and Asians also have a lower chance of find­ing a match.

Sim­ply put, the registry lacks di­ver­sity, said Erica Sevilla, Be The Match’s newly ap­pointed mul­ti­cul­tural pub­lic strate­gist. Her job is to raise aware­ness and in­crease the num­ber of mi­nori­ties reg­is­tered.

“We know that the best match for a pa­tient is most likely to be some­body who is a ge­netic match, and a lot of times that’s based on your race or eth­nic­ity,” she said.

But the makeup of the registry for mi­nori­ties is tiny — 4 per­cent of the pro­gram’s po­ten­tial donors are black and 7 per­cent are His­panic.

“Those low num­bers, the low par­tic­i­pa­tion of those races and eth­nic­ity in the registry re­sult in hav­ing lower out­comes and lower prob­a­bil­ity of find­ing a match,” Ms. Sevilla said.

Mr. Mba, 24, was di­ag­nosed with aplas­tic ane­mia PNH when he was a high school se­nior in North Carolina. As a dancer, he was in the best shape of his life, but for months he suf­fered fa­tigue, body aches, stom­ach virus’s and flu-like symp­toms.

While get­ting ready for a per­form­ing arts ban­quet, Mr. Mba col­lapsed.

“I could barely move … when I got to the hos­pi­tal, I had barely any platelets, my white blood cells might as well have been non-ex­is­tent, and my red blood cell count was so low, I was flushed out,” he said in a phone in­ter­view with The Washington Times. “There was no blood in my fin­ger­tips, I had white lips, I was re­ally skinny, I was frail.”

He has been able to man­age his dis­ease with blood trans­fu­sions and med­i­ca­tions, but his best chance of long-term survival is a bone mar­row trans­plant from some­one who shares an iden­ti­cal ge­netic foun­da­tion of his blood.

Nei­ther his brother nor sis­ter share enough DNA to be donors and his mother is only half a match.

“Af­ter no one in my im­me­di­ate fam­ily was a match, that’s when we turned to Be The Match and we started tak­ing our search na­tional,” he said.

Since his di­ag­no­sis, Mr. Mba has hosted lo­cal reg­is­tra­tion events on his un­der­grad­u­ate and grad­u­ate cam­puses and done in­ter­views in na­tional news­pa­pers and tele­vi­sion morn­ing shows. He’s work­ing on his Mas­ter of Fine Arts de­gree in The­ater at the Uni­ver­sity of South­ern Mis­sis­sippi, although his danc­ing has taken a back­seat af­ter hav­ing hip surgery from de­vel­op­ing os­teo­poro­sis as a re­sult of his ill­ness.

“Peo­ple see me ac­tive, they think ‘he must be do­ing OK, he must be do­ing well,’ and that’s not the case,” he said. “Hon­estly, I’m still in a life-threat­en­ing sit­u­a­tion, but I’m in a bet­ter po­si­tion than most pa­tients that deal with the same ill­nesses that I deal with.”

Sign­ing up for the registry re­quires swip­ing a cot­ton swab to the cheeks and fill­ing out con­tact in­for­ma­tion. If a match oc­curs, a donor typ­i­cally will be asked to do­nate his or her pe­riph­eral blood stem cells, or PBSC, un­der­go­ing a pro­ce­dure that is sim­i­lar to giv­ing blood.

“You’ll go into the hos­pi­tal, you’ll have blood ex­tracted from one arm, it will be pro­cessed and the mar­row will be ex­tracted, the stem cells will be ex­tracted and then your blood will be re­turned to your body in the other arm,” Ms. Sevilla ex­plained.

About 25 per­cent of donors un­dergo the more sur­gi­cally in­va­sive bone mar­row ex­trac­tion from the hip.

Mr. Mba calls sign­ing up for the registry “fight­ing a bat­tle where there’s no way you could lose,” but also wants to en­cour­age peo­ple to think about what it means to do­nate and be ready if the time comes.

“I re­ally want peo­ple to know it’s a com­mit­ment, you’re com­mit­ting to save a life,” he said. Those who are a match are un­der no obli­ga­tion to do­nate.

That was the choice fac­ing Lau­ren Ash­ley Ward, a 21-year-old stu­dent at the his­tor­i­cally black Prairie View A&M Uni­ver­sity in Texas, who was spurred to join the registry af­ter hear­ing about the lack of black reg­is­trants.

Within six months of sign­ing up, Ms. Ward was no­ti­fied that she matched with a 1-year-old boy suf­fer­ing from an im­mun­od­e­fi­ciency dis­or­der.

“Some peo­ple are on the registry for years, and they never match, and I matched at six months,” she said. “I was kind of like, this is why it felt so right to join the registry, be­cause there’s ob­vi­ously a rea­son, a pur­pose.”

The pro­ce­dure re­quired Ms. Ward to give her­self twice-daily in­jec­tions of a white blood cell-boost­ing med­i­ca­tion for a week be­fore do­nat­ing. She spent a few hours in the hos­pi­tal, with her blood taken from one arm, the mar­row cells har­vested, and then put back into her body through her other arm.

Ms. Ward said she was hes­i­tant to tell her fam­ily that she was do­nat­ing be­cause of an in­grained mis­trust in the black com­mu­nity to­ward hos­pi­tals and doc­tors, which she thinks keeps peo­ple off the registry in the first place.

“As far as fam­ily mem­bers … when they find out they’re still very shocked,” she said. “It’s kind of like … the re­la­tion­ship be­tween the med­i­cal com­mu­nity and African-Amer­i­can com­mu­nity, there’s a lot of dis­trust.”

The black com­mu­nity suf­fers the high­est rates of death and dis­ease in the U.S.

“We can be up­set, we can be an­gry about the past and the sys­tem that has been in place be­fore us,” Ms. Ward said, “but if there’s an op­por­tu­nity for us to make a change, even in the slight­est, and we don’t do it, it’s our fault.”

Be­sides over­com­ing a fear of nee­dles, Ms. Ward said the process went smoothly.

“Ev­ery­one was so nice and so pleas­ant, it was one of the most re­ward­ing ex­pe­ri­ences that I’ve ever been able to do,” she said.

Ms. Ward wants to share her story in the hope that it in­spires other peo­ple, es­pe­cially black peo­ple, to do­nate.

“I would highly sug­gest any­body, es­pe­cially African-Amer­i­cans, to join the bone mar­row registry be­cause our health is our re­spon­si­bil­ity, at the end of the day.”

BE THE MATCH PHO­TOS

“I would highly sug­gest any­body, es­pe­cially African-Amer­i­cans, to join the bone mar­row registry be­cause our health is our re­spon­si­bil­ity, at the end of the day,” said col­lege stu­dent Lau­ren Ash­ley Ward. Ms. Ward’s do­na­tion helped a 1-year-old child.

Mba

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