LEFT FOR DEAD

Eight of the 16 poor pa­tients, who con­tracted Hep­ati­tis C Virus dur­ing dial­y­sis at Stan­ley hos­pi­tal in 2014, have died over the last three years. And sur­vivors are bat­tling crip­pling side-ef­fects, with lit­tle hope...

Sunday Express - - SUNDAY STORY - SUSHMITHA RA­MAKR­ISH­NAN @ Chen­nai One can con­trib­ute at https:// mi­laap.org/fundrais­ers/ hcv­pa­tients?utm_ source=what­sapp&utm_ medium=fundrais­ers-ti­tle or call 072000 20099

VEINS popped out of his weak hands, his legs were sore and medicines filled every cup­board at his home. U Bakki­yaraj, once a sales-busi­ness­man, had to end his ca­reer to bat­tle a virus that he had con­tracted from a gov­ern­ment hos­pi­tal. “I’ve lost the will to fight. I sold my house to pay for the treat­ment, and I am now fi­nan­cially de­pen­dent on my sis­ter and can­not af­ford even travel ex­penses to the hos­pi­tal,” he cried.

His en­tre­pre­neur­ial life took a sharp turn three years ago. On a fate­ful week in Au­gust 2014, Bakki­yaraj and 15 oth­ers ar­rived at the Stan­ley hos­pi­tal’s dial­y­sis ward. All of them had two things in com­mon: they had a re­nal com­pli­ca­tion that re­quired kid­ney trans­plan­ta­tion and could not af­ford surgery in a pri­vate hos­pi­tal. All 16 were on hold for trans­plan­ta­tion, had a liv­ing re­lated donor and hoped that the surgery would change their life for bet­ter. Lit­tle did they ex­pect their lives to get en­tan­gled over a tragedy.

The vic­tims of fail­ing kid­neys were all sud­denly di­ag­nosed with Hep­ati­tis C, a vi­ral in­fec­tion of the liver, dur­ing their treat­ment at Stan­ley hos­pi­tal. All pa­tients were screened for Hep­ati­tis C Virus (HCV) on ad­mis­sion at Stan­ley hos­pi­tal for dial­y­sis and all, with the ex­cep­tion of may be one, tested neg­a­tive. But the sud­den si­mul­ta­ne­ous in­ci­dence of the virus in 16 peo­ple alarmed the doc­tors and pa­tients alike.

Pa­tients were im­me­di­ately asked to move to other fa­cil­i­ties by the hos­pi­tal man­age­ment stat­ing that Stan­ley did not have the fa­cil­i­ties to con­duct dial­y­sis for peo­ple with HCV. Ac­cord­ing to the vic­tim’s nar­ra­tive, the hos­pi­tal had also warned them they may spread the dis­ease to other pa­tients. Star­tled by the sud­den on­set of the dis­ease, pa­tients in union with Aam Admi Party mem­bers, be­gan a protest seek­ing clar­ity from the hos­pi­tal.

Vic­tims deem it a clas­sic ex­am­ple of med­i­cal neg­li­gence by the hos­pi­tal but Madras High Court ex­on­er­ated Stan­ley hos­pi­tal of will­ful neg­li­gence. How­ever, ob­serv­ing that it’s im­pos­si­ble for 16 peo­ple in the same dial­y­sis ward to co­in­ci­den­tally con­tract at the same time, an in­de­pen­dent com­mit­tee com­pris­ing three gov­ern­ment doc­tors from MMC, was set up to in­ves­ti­gate the case. The re­port is­sued by the com­mit­tee agreed that most, if not all, pa­tients con­tracted HCV while un­der­go­ing dial­y­sis at the hos­pi­tal.

The symp­toms of the dis­ease are not very vis­i­ble in most pa­tients. Jaun­dice, nau­sea, loss of ap­petite and in­tense tired­ness are among the symp­toms of the seem­ingly harm­less dis­ease. But in about 75 to 85 per cent of peo­ple who con­tract it, the dis­ease es­ca­lates into chronic Hep­ati­tis C, lead­ing to can­cer of the liver or its scar­ring.

Peo­ple with HCV can­not un­dergo kid­ney trans­plan­ta­tion un­til the vi­ral load van­ishes in the body. Peo­ple with HCV are of­ten at risk of de­vel­op­ing other com­pli­ca­tions as their im­mu­nity goes for a toss. B Ko­teesh­waran (50), a vic­tim of the in­fec­tion in 2014, died on July 19 af­ter de­vel­op­ing mul­ti­ple com­pli­ca­tions.

De­spite trou­bling health con­di­tions, he con­tin­ued work­ing as a driver at a pri­vate com­pany even af­ter con­tract­ing Hep­ati­tis C. He was the only bread­win­ner of a fam­ily of five. A year af­ter con­tract­ing HCV, he was also di­ag­nosed with tu­ber­cu­lo­sis. Fa­tigue from HCV, its med­i­ca­tion, tu­ber­cu­lo­sis and its treat­ment drained his work-life dry un­til he could get out of his house no more. His son K Ma­hesh (20), who fondly re­calls his fa­ther be­ing a very ac­tive man, fell silent when nar­rat­ing his fa­ther’s down­fall.

“Af­ter he de­vel­oped TB, his lungs were of­ten filled with fluid, mak­ing it re­ally hard for him to even breathe,” said Ma­hesh, adding that fa­tigue and nau­sea left him bed-rid­den even­tu­ally. “He wanted me to be­come an IAS of­fi­cer and died even be­fore I could fin­ish col­lege,” he said, re­gret­ting that all money saved for his ed­u­ca­tion went into treat­ment for his fa­ther. Ma­hesh has al­ready started work­ing to sup­port his fam­ily and his ca­reer dreams have van­ished.

Lenin Kumar P (31), from Kr­ish­na­giri dis­trict, had to sell his cat­tle to pay for his med­i­cal ex­penses. He was ad­vised to take 12 In­ter­feron in­jec­tions to treat HCV which had side-ef­fects that in­cluded fever, vom­it­ing, body pain and in­tense fa­tigue. Af­ter ad­min­is­ter­ing 12 in­jec­tions, the hos­pi­tal found out that his vi­ral load re­mained high and rec­om­mended an­other 24 in­jec­tions. Lenin Kumar died at Stan­ley in June this year.

Ga­jalak­shmi Raju (29), an­other vic­tim of the Hep­ati­tis C in­fec­tion at Stan­ley hos­pi­tal, too de­vel­oped tu­ber­cu­lo­sis dur­ing treat­ment. Her dreams of re­turn­ing to her for­mer bank­ing job were dashed. “Her sit­u­a­tion wors­ened over the years and each sub­se­quent com­pli­ca­tion pushed the trans­plan­ta­tion even fur­ther,” said Raju, her hus­band. Ga­jalak­shmi goes thrice a week to the hos­pi­tal to un­dergo dial­y­sis now. She has nei­ther been able to re­sume her ca­reer nor take care of her four-year-old son.

Un­der­go­ing dial­y­sis will be a way of life for the ones who sur­vived un­til they un­dergo a kid­ney trans­plan­ta­tion surgery. Most of them un­dergo 2 or 3 ses­sions of dial­y­sis every week and each ses­sion takes nearly 5 hours. This will go on for years for many.

Peo­ple suf­fer­ing from HCV can­not un­dergo kid­ney trans­plan­ta­tion, as the treat­ment in­creases the risk of fail­ure. It is also risky to un­dergo trans­plan­ta­tion while be­ing treated for TB as the chances of re­jec­tion of the new or­gan are high. Till they are free of all in­fec­tions, trans­plan­ta­tion will be a far­away dream.

Vi­ral load has how­ever come down sig­nif­i­cantly among the eight sur­vivors. While they are ready for a trans­plan­ta­tion, they are stran­gled in the fear of trust­ing Stan­ley hos­pi­tal again. Four among those who con­tracted HCV at the hos­pi­tal un­der­went kid­ney trans­plan­ta­tion and only one sur­vived. Fear­ing that they too might face a sim­i­lar fate, the ones who sur­vived want to move to a pri­vate fa­cil­ity.

What stops them, is the sec­ond com­mon fac­tor that links them. None of them can af­ford to un­dergo a trans­plan­ta­tion surgery at a pri­vate hos­pi­tal. Even with con­ces­sions, the surgery may come up to `4.5 lakh per per­son. In a move to fa­cil­i­tate fund­ing for them, Arap­por Iyakkam, a cit­i­zen move­ment that has shown sol­i­dar­ity with these vic­tims over the years, is col­lect­ing funds. The or­gan­i­sa­tion has set up a page on the crowd-fund­ing plat­form Mi

laap. Ini­tially, it is look­ing at col­lect­ing `10 lakh for two pa­tients.

“Most of them don’t have funds even to meet their ev­ery­day treat­ment. Fund­ing a trans­plan­ta­tion will be im­pos­si­ble,” said Ja­yaram Venkate­san of Arap­por Iyakkam. “The vic­tims have come this far in their bat­tle, and we don’t want them to lose to money,” said Chan­dra Mo­han, an­other mem­ber of the or­gan­i­sa­tion.

The vic­tims have come this far in their bat­tle against HCV, and we don’t want them to lose to money. - Chan­dra Mo­han, Arap­por Iyakkam

AMIT BANDRE

ASH­WIN PRASATH

U Bakki­yaraj, res­i­dent of Kargil Na­gar in Tiru­vot­tiyur, still strug­gles with reper­cus­sions |

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