The fight against fistula

When it comes to rais­ing mon­ey for can­cer, there isn’t much peo­ple will not do: run marathons, bake cakes, shave their hair. Men­tal health, once the Cin­derel­la of char­i­ta­ble caus­es, can these days call on roy­al­ty. Peo­ple scared of heights will jump from planes or abseil down the tallest build­ings if they believe it will end cru­el­ty to dogs or cats.

How far would you run for obstet­ric fis­tu­la? Would fam­i­ly and friends sup­port you if you held a pub quiz to raise mon­ey to pay for treat­ment? The chances are you would have to begin by explain­ing what fis­tu­la is and that is no easy task.

It takes courage and deep com­mit­ment for an organ­i­sa­tion to embark on a char­i­ta­ble ini­tia­tive to sup­port the treat­ment and care of women in Kenya affect­ed by obstet­ric fis­tu­la. Yet this is what Astel­las Phar­ma Europe, the phar­ma­ceu­ti­cals com­pa­ny, did in 2014 with an ambi­tious pro­gramme to help thou­sands of women rebuild their lives.

Why fighting fistula is a worthy cause

Obstet­ric fis­tu­la most com­mon­ly occurs among women who live in the poor­est coun­tries, who give birth with­out access to med­ical help, suf­fer­ing excru­ci­at­ing pain for days before the baby is final­ly dis­lodged. The baby rarely sur­vives.

Obstet­ric fis­tu­las most com­mon­ly occur among women who live in the poor­est coun­tries, who give birth with­out access to med­ical help

An obstet­ric fis­tu­la is a hole between the vagi­na and rec­tum or blad­der that is caused by pro­longed obstruct­ed labour, leav­ing a woman incon­ti­nent. The labour pro­duces con­trac­tions that push the baby’s head against the mother’s pelvic bone. The soft tis­sues between the baby’s head and the pelvic bone are com­pressed and do not receive ade­quate blood flow. The lack of blood flow caus­es this del­i­cate tis­sue to die and, where it dies, holes are cre­at­ed between the blad­der and vagi­na or between the rec­tum and vagi­na, caus­ing incon­ti­nence.

A woman with fis­tu­la is often reject­ed by her hus­band and pushed out of her vil­lage due to her smell. And for every woman that gets treat­ment, at least 50 go with­out.

If there is such a thing as an “unsexy” cause, obstet­ric fis­tu­la prob­a­bly is it. Yet when Astel­las went search­ing for an inspi­ra­tional cor­po­rate-giv­ing pro­gramme, obstet­ric fis­tu­la pre­sent­ed itself as the ide­al choice.

Astel­las and Fis­tu­la Foun­da­tion vis­it a fis­tu­la sur­vivor at her home

Supporting a programme delivering real change 

Astel­las want­ed to iden­ti­fy how best to cre­ate a cor­po­rate giv­ing ini­tia­tive which would lever­age its com­mit­ment to build­ing access to med­i­cines. Work­ing with Forster Com­mu­ni­ca­tions, it ran a strate­gic review and iden­ti­fied obstet­ric fis­tu­la. It then locat­ed a geo­graph­i­cal area to focus its efforts. Kenya was select­ed as fis­tu­la was a sig­nif­i­cant issue there, par­tic­u­lar­ly in rur­al com­mu­ni­ties. Some 3,000 women in Kenya devel­op obstet­ric fis­tu­la each year, with the back­log of cas­es esti­mat­ed at 30,000 before the Astel­las pro­gramme began. The coun­try also had suf­fi­cient infra­struc­ture to run a pro­gramme; analy­sis iden­ti­fied that Kenya had hos­pi­tals with spare beds but a need for more trained fis­tu­la sur­geons.

Astel­las chose to part­ner with the Fis­tu­la Foun­da­tion, an inter­na­tion­al char­i­ty with a suc­cess­ful track record of pro­vid­ing fis­tu­la treat­ment in more than 30 coun­tries. The Fis­tu­la Foun­da­tion had a vision to trans­form the way fis­tu­la was being treat­ed in Kenya by build­ing a coun­try­wide net­work of hos­pi­tals and com­mu­ni­ty out­reach organ­i­sa­tions. They had an ambi­tious and com­pre­hen­sive plan to reach women in even the most rur­al areas, bring them to treat­ment at a ful­ly equipped facil­i­ty with high­ly trained sur­geons and, post-surgery, sup­port their med­ical reha­bil­i­ta­tion and social rein­te­gra­tion. With seed fund­ing from Astel­las, Action On Fis­tu­la^TM was cre­at­ed.

The results speak for them­selves. We have the sat­is­fac­tion of see­ing a pro­gramme that is sus­tain­able deliv­er real change to thou­sands of women, to their fam­i­lies and to their com­mu­ni­ties

Christi­na Chale, Action On Fis­tu­la project lead at Astel­las, says: “The results speak for them­selves. We have the sat­is­fac­tion of see­ing a pro­gramme that is sus­tain­able deliv­er real change to thou­sands of women, to their fam­i­lies and to their com­mu­ni­ties. And we have seen real engage­ment and com­mit­ment by our employ­ees to be part of this.”

Creating a long-lasting legacy 

Astel­las con­tributed €1.5 mil­lion to help the Fis­tu­la Foun­da­tion set up and run the pro­gramme for the first phase of Action On Fis­tu­la, which ran from 2014 to 2017. The sec­ond phase of Action On Fis­tu­la is a €3.9‑million pro­gramme from 2017 to 2020, run by Fis­tu­la Foun­da­tion. It is part-fund­ed by a €750,000 grant from Astel­las, with the remain­der being gen­er­at­ed by the Fis­tu­la Foun­da­tion. Fur­ther­ing their company’s com­mit­ment, Astel­las Phar­ma Europe employ­ees also raised around €35,000 for the Fis­tu­la Foun­da­tion through fundrais­ing events and indi­vid­ual con­tri­bu­tions.

Kate Grant, chief exec­u­tive of the Fis­tu­la Foun­da­tion, says: “Fis­tu­la is not an issue that most peo­ple know or care about. The pre­dom­i­nant injury is a hole in the vagi­na. There are not many things that are tougher to talk about than that.

“This project has been extra­or­di­nar­i­ly suc­cess­ful in terms of the num­ber of women we have been able to reach. It has been heart­en­ing to be able to give them the price­less gift of health that has made it pos­si­ble for them to take their place with their fam­i­lies and with the com­mu­ni­ty.”

The pro­gramme has cre­at­ed a long-last­ing lega­cy. More than 3,500 women have received life-chang­ing obstet­ric fis­tu­la recon­struc­tive surgery. It has sig­nif­i­cant­ly increased sur­gi­cal capac­i­ty in Kenya to treat the con­di­tion by train­ing six fis­tu­la sur­geons to glob­al com­pe­ten­cy stan­dards set by the Inter­na­tion­al Fed­er­a­tion of Gynae­col­o­gy and Obstet­rics.

It also set up six treat­ment cen­tres across Kenya pro­vid­ing fis­tu­la surg­eries on a rou­tine basis. With greater access to treat­ment, clos­er to where they live, women are no longer placed on wait­ing lists to receive surgery, nor are they forced to trav­el long dis­tances for treat­ment. The net­work of sites and sur­geons work close­ly togeth­er, shar­ing infor­ma­tion and resources, and cre­at­ing a strong com­mu­ni­ty of prac­tice that will be sus­tained far beyond the dura­tion of the ini­tia­tive.

Patient at the Jamaa Mis­sion Hos­pi­tal in Nairo­bi, Kenya

Action On Fistula: plans for the future

Action On Fis­tu­la was recog­nised at the 2017 Bet­ter Soci­ety Awards for its work with the Fis­tu­la Foun­da­tion in the Part­ner­ship with an Inter­na­tion­al Char­i­ty cat­e­go­ry and the 2017 Com­mu­niqué Awards for the Excel­lence in Cor­po­rate Social Respon­si­bil­i­ty cat­e­go­ry.

Ms Chale high­lights the impor­tance of part­ner­ing with a cred­i­ble char­i­ty with the capa­bil­i­ty to deliv­er on its com­mit­ments. “I can­not stress enough how sig­nif­i­cant it was to be able to work with the Fis­tu­la Foun­da­tion and the role they played in the suc­cess of this ini­tia­tive,” she says.

The orig­i­nal three-year pro­gramme has been extend­ed to 2020 with an ambi­tious tar­get to pro­vide surgery for an addi­tion­al 2,000 women with fis­tu­la. There are plans for two more treat­ment cen­tres and train­ing for a fur­ther six sur­geons. Action On Fis­tu­la also wants to train ten fis­tu­la nurs­es to sup­port women dur­ing treat­ment and estab­lish twen­ty sup­port groups across Kenya to pro­vide psy­choso­cial assis­tance, eco­nom­ic empow­er­ment and income-gen­er­at­ing activ­i­ties to return to their com­mu­ni­ties.

Ms Chale rec­om­mends that from the out­set, cor­po­rate part­ners should work towards tan­gi­ble out­puts with a mea­sur­able impact and con­sid­er how they will mea­sure suc­cess, in a cred­i­ble and holis­tic way.

She would have no hes­i­ta­tion in encour­ag­ing organ­i­sa­tions to fol­low their exam­ple by sup­port­ing a small­er char­i­ty and a cause with a mod­est pub­lic pro­file. “Don’t be afraid of small­er char­i­ties,” she says. “Be pre­pared to embrace caus­es that may not yet be pop­u­lar, but are just as deserv­ing of pub­lic sup­port. You can make a real dif­fer­ence.”

For Action On Fis­tu­la to con­tin­ue this proven, life-chang­ing work, addi­tion­al finan­cial sup­port is crit­i­cal and they are active­ly seek­ing part­ners to help con­tin­ue this work. Any­one inter­est­ed should con­tact the Fis­tu­la Foun­da­tion at www.fistulafoundation.org

Why fighting fistula is a worthy cause

Obstetric fistulas most commonly occur among women who live in the poorest countries, who give birth without access to medical help

Supporting a programme delivering real change