Shif mess: Why Baby Arianna is stuck in India
Baby Arianna Wairimu.
Baby Arianna, the one-year-old Kenyan baby who survived a high-risk stem cell transplant, has been given a clean bill of health by doctors and is ready to be discharged. However, she may not be able to leave India because of unpaid hospital bills.
This is after the Social Health Insurance Fund (SHIF) failed to honour a July 2024 guarantee of payment (GOP) to Fortis Memorial Research Institute in New Delhi.
In October this year, Medical Services Principal Secretary Harry Kimtai told Nation.Africa that Baby Arianna, India's first patient diagnosed with Pearson Syndrome (PS), an extremely rare DNA disorder with fewer than 10 known cases worldwide, was entitled to Sh500,000 in assistance.
Fortis Memorial
PS Kimtai said he had personally instructed health officials handling the case to pay the money immediately after the GOP issued to Fortis Memorial was declined because the now-defunct NHIF owed the facility millions of shillings.
When Nation contacted Health Cabinet Secretary Deborah Barasa about the same issue a month ago, she assured that her team would get to the bottom of the matter, but now, a month later, she has not responded to our queries about Baby Arianna's case.
This is even though Teresa Wairimu, Arianna's mother, has been paying NHIF contributions religiously for the past 10 years.
"I have tried to engage Mr Ibrahim Alio of SHA who contacted us after the Nation Media Group highlighted our predicament but he has since ghosted us and gone mute despite promising last month that they would honour their GOP and deposit the money.
I have also sent about 10 follow-up emails to one Ms Jemimah from SHIF who also reached out to us but a month later she has not responded," Ms Wairimu told Nation.Africa.
She recounted the empty promises made by health officials.
Reimbursement
"There is indeed no policy to refund individuals, but we have always paid the hospital and then they refund individuals who have spent their money out of pocket for treatment,” she added.
Mr Alio, the director of corporate services at the SHA, had assured her a month ago that he would help Ms Wairimu, before falling silent.
"SHA promised to reimburse all patients who spent out of pocket and so I sent all my receipts to Mr Alio hoping that he would reimburse me. As we speak, Arianna's medical kitty has only Sh1,113. He (Mr Alio) is yet to respond," she added.
Last month, Dr Vikas Dua, the lead doctor on Arianna's case, revealed that some tests for graft-versus-host disease (GVHD) had come back positive.
GVHD occurs when transplanted donor cells recognise the recipient's tissues as foreign and attack them, leading to a range of symptoms affecting the skin, he explained.
The doctor immediately put Baby Arianna on oral medication, which new tests now show has worked.
“The GVHD was not severe and in fact, she at first had completely lost appetite and was losing weight which was accompanied by bouts of fever but now it is gone and Arianna is feeding well,” the single mother told Nation.
"We have to travel back to Kenya this Friday as our visas expire on Saturday, November 16.
Dr Vikas is releasing us because the baby is clinically fine and he has seen us struggling to raise money, including for the post-engraftment test checks done in the outpatient clinic, which we paid for out of pocket last Friday because SHIF has not honoured their GOP," she pointed out.
Donor cells
The tests show how much of the donor cells are working in the patient's body compared to her own cells and have been done three times so far at 30, 60 and 90 days.
According to Dr Vikas, the tests showed that 99.87 per cent of the donor cells were working.
The expert added that the haplo-identical bone marrow transplant that he performed on Baby Arianna was the first of its kind performed in India.
A haploidentical transplant uses healthy blood-forming cells from a half-matched donor to replace the patient’s unhealthy ones.
This means that the donor is typically a family member.
To find the best donor match, your doctor will test your blood to find out your human leukocyte antigen (HLA) type.
HLA is a protein or marker found on most cells in your body.
“We will hold a press conference on Wednesday at noon IST to share her story and inspire hope, showing that a rare disease diagnosis like Pearson Syndrome is not the end of life,” he revealed.
Baby Arianna’s mother thanks Kenyans for generously donating to Baby Arianna’s medical kitty.
“Dear Kenyans, you have come through for my baby’s treatment, so far we have spent Sh7 million but now we still have a balance of Sh490,000,” she said.
“Arianna’s medical kitty details are as follows:
-Paybill: 522533
- Account: 7834867 (Arianna's Medical Fund)
- M-Pesa number: 254720677064 (Teresa Ndung'u - Mother).”
