SHIF chaos: Baby Arianna on her own as body starts rejecting donor cells
Baby Arianna Wairimu.
Baby Arianna, the one-year-old infant who is battling a rare condition after a bone marrow transplant, has been abandoned by the Social Health Authority (SHA) in India.
In a case that illustrates how the chaotic transition from the defunct National Hospital Insurance Fund (NHIF) is affecting patients, the Social Health Insurance Fund (SHIF), which is run by SHA, is yet to pay Sh500, 000 that Baby Arianna is entitled to.
As a result, Fortis Memorial Research Institute in New Delhi has withheld further treatment unless the baby’s family, which has been relying on well-wishers, pays the medical bill in cash.
“The patient is still paying in cash and will continue to do so until SHA settles all pending debts and pays the Sh500,000 they owe Baby Arianna,” a senior official at Fortis Memorial told Nation yesterday. However, Ms Teresa Ndung’u, the baby’s mother, said they have exhausted a Sh6 million medical kitty that Kenyans had fundraised for the baby’s treatment and their only hope is SHIF.
Mother and baby travelled to India on May 17 to beat a July 5 deadline that doctors had set for Arianna to live unless the urgent life-saving transplant was done.
Since Arianna is a dependent of a member of the national scheme, NHIF had on July 19 issued a guarantee of payment (GOP) worth Sh500, 000 to Fortis Memorial Research Institute.
Further treatment
However, upon transition to the Social Health Insurance Fund (SHIF) on October 1, the new agency, SHA, took over all liabilities of NHIF, which saw SHA commit to pay the hospital. But nearly a month later, the hospital has not received a penny and it has asked for cash before any further treatment of Arianna.
And the baby’s condition, which deteriorated after doctors diagnosed her with Pearson Syndrome (PS), a problem within the DNA described as an extremely rare condition, with less than 10 known cases globally, has only worsened.
Last week, Dr Vikas Dua, the lead doctor handling Arianna’s case, disclosed 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.
Speaking to Nation from the Asian country via Zoom, Ms Ndung’u said the past three weeks have been a roller-coaster ride for her and the baby.
“Arianna has been hospitalised twice in this short span; first, due to influenza virus, which she caught amidst her ongoing treatment. The second admission came shortly after, as Arianna suffered from relentless fevers that just wouldn’t subside,” she said.
She added that at one point, her doctors requested an urgent endoscopy to check for GVHD which is a severe complication following her recent bone marrow transplant. But swift donations from well-wishers facilitated the endoscopy, which cost Sh150,000 and revealed signs of GVHD, Ms Ndung’u disclosed. Last week, the doctors immediately placed Arianna on medication which she prays will prevent further complications.
“I shudder to think what could have happened if swift action hadn't been taken,” she said.
Health Cabinet Secretary Deborah Barasa has maintained that her team was working to address the baby’s plight but nothing has come of the assurances.
Medical Services Principle Secretary Harry Kimtai had also pledged that SHA would pay the Sh500,000 but, weeks later, no payment has been made.
“We have discussed this very well, we will pay the hospital in your case while you are there so that they sort,” Ibrahim Alio, the director of corporate services at SHA, had told Ms Ndung’u via text. Mr Alio, according to Ms Ndung’u, has since gone mute on the matter leaving them stranded on foreign soil.
“I fear that I may be soon sleeping on the streets because I have exhausted what I was supposed to use for rent, food and other basic needs on tests that Arianna urgently needs, admission charges and the very expensive medication I have to buy,“ the single parent said.
“Dear Kenyans, every contribution goes directly towards her treatment and necessary follow-up care, and as her medical expenses continue to mount, so does our daily living costs. We currently reside in a temporary apartment in India, where rent is charged daily at 2,200 Rupees (roughly Sh3,500) and as of today, I have been unable to pay any rent for this month and our debt has now exceeded Sh108,000, which is due by the end of this month,” Arianna’s mother said.
Contributions can be sent through:
- Paybill: 522533
- Account: 7834867 (Arianna's Medical Fund)
- Mpesa number: 254720677064 (Teresa Ndung'u - Mother).
