Footloose & fancy-free: Travails of an HIV+ child’s mother

It’s Mother’s Day today. And what does a poor, sick mother, desperately trying to ensure that her HIV positive orphaned child gets his essential daily dose of life-saving medicines get? Insensitivity, buck-passing and indolence by the government medical fraternity and the BSACS officials!
On Thursday, incidentally observed as AIDS Orphans Day (part of the annual global Aids awareness week), a desperate 25-year-old widow in Chhapra was running from pillar to post in a frantic bid to obtain the next dose of ART for her eight-year-old son.An HIV positive person needs to take the prescribed medicine daily, just like a daily insulin dose for diabetics. If the dose is missed, even for a day, the immune system of the patient starts deteriorating. The people at the ART dispensing centre were helpless, stocks were over (The special ART formulation for children is given in a syrup form). When the woman, in desperation, went to submit a written intimation to the nodal medical officer, pleading that the medicine be made available, she was brushed aside. He refused to accept her application.
The woman, a widow, who somehow ekes out a living working in a private school, is distraught. For the past five days, she has abandoned her work, running to and fro the dispensing centre. The irony is that the medication can only be obtained from the government centre and no private chemist shop in Chhapra stocks the medicine, which is very expensive.
“I went to get the medicines on the May 4, a day before the last dose ran out (This is the practice. Patients are given medicines for a month only, and they can’t ask for any advance stock). There was no medicine available. My child is on ART since 2011. What’s worrying me is that in January, when a CD-4 count was done, his platelet count had dropped to 311 from 1100. I’m desperate,” she said over the phone.
Exactly 14 days ago, I happened to visit the Chhapra ART centre with RTI activist Sanjeet Singh, where the persons concerned told us that stocks were low. “We are just not receiving adequate stocks from BSACS, and we struggle to do what we can,” they said.
“The high court has decreed that every ART centre should have a two-month stock of ART medicines and medicines for opportunistic infections, but despite assurances from BSACS officials, see the situation!” says Sanjeet.
In Chhapra, the situation is overwhelming. Last month 1748 patients received ART. There are about 150 children on ART. NACO guidelines are not met. BSACS has not appointed the required staff. No medical officer, so obviously, no ‘accountable’ official! Pregnant women have to buy their own ‘safe delivery kits’ from private stores in Patna because the hospital has no stock. HIV positive pregnant women are denied surgery at Chhapra. The official line is, “So far, no such case has been brought to our notice.” There is no CD4 testing machine, even though NACO funds were there for one unit in each district, it is said. The woman says, “My child is the only reason I am living, if he dies, I am nothing, I might as well destroy myself.” Just as I write the finishing line to this article, Saturday 8am, I receive a phone call. The ART medicines have finally arrived, and will be given out today. Happy Mother’s Day!