From Week to 15-Day Dose, Why HIV Patients Think Govt Doesn’t Care

On World AIDS Day, a reality check on the shortage of HIV drugs in Delhi where HIV patients feel govt doesn’t care.

(Photo: Kamran Akhter/ FIT)

On 11 July 2018, Hari Shankar, project director at Delhi Network of Positive People (DNP Plus), an NGO that functions as a support group for individuals with HIV/AIDS, was fraught with a usual crisis.

Among the eleven government-run ART (Anti-Retroviral Therapy) centres in Delhi, one had run out of HIV drugs.

Stock-Out of HIV Drugs is Frequent

This was not an unprecedented situation in India’s capital where stock-out or shortage of HIV drugs is quite common.

“When the LNJP (Lok Nayak Jai Prakash Narain hospital) gave up and admitted about drug shortage, we decided to purchase medicines from outside for 20 patients. We bought medicines for a week and gave it to patients so that they don’t miss out on their course.”

Hari Shankar, Project Director, DNP Plus

When Delhi’s LNJP Hospital ran out of Raltegravir tablets, an NGO ‘DNP Plus’ crowdsourced funds to buy medicines for HIV patients.(Photo provided by Hari Shankar)

Stock-out of HIV drugs is quite frequent in the capital city of Delhi.(Photo provided by Hari Shankar)

According to Hari Shankar, project director at DNP Plus, he had to buy medicines from outside for at least 20 HIV patients in September this year.(Photo: Akanksha Kumar/ FIT)

Hari Shankar showing photographs of prescription of HIV patients who didn’t get a month’s dose at LNJP in September this year.(Photo: Akanksha Kumar/ FIT)

Hari Shankar bought drugs for HIV patients who had come from the states of Rajasthan, MP and included locals from Delhi as well.

“Most of these patients travel for long distance and spend money on transport, and therefore, they expect getting a dose for at least two months.”

Hari Shankar, Project Director, DNP Plus

Letters Sent to NACO Requesting for Buffer Stock

In a series of at least five letters, written since June, that are addressed to the National AIDS Control Organisation (NACO), activists associated with DNP Plus have requested the concerned authorities to ensure that buffer stock of HIV drugs is available at all the ART centres.

Letter dated 14 September 2018 sent to NACO regarding shortage of Nevirapine syrup at AIIMS.

In one such letter written on 14 September 2018, which is addressed to the Deputy Director General in Care, Support & Treatment division of NACO, a request was made to ensure that NVP (nevirapine) syrup is available at AIIMS. NVP is administered as part of anti-retroviral therapy to prevent mother-to-child transmission of HIV.

“Sir, we feel deeply demotivated as we experience stock-out from one drug to another, successively causing utter chaos in the PLHIV (People Living with HIV) community. It indeed is shameful, taking into account, India, despite the largest producer and exporter of generic drugs and when money is not the issue, still stock-outs occur.”

Letter written by DNP Plus to NACO on 14 Sep 2018

Delay in Procurement

On 29 August 2018, the Lok Nayak Hospital ran out of HIV medicine yet again, reported the Hindustan Times. It was the third line drug combination of Raltegravir, Darunavir and Ritonavir which was not available at the government hospital.

‘The drugs are centrally procured for the entire country by the National AIDS Control Organisation (NACO). However, there were problems in finalizing the tender and hence there is a shortage across Delhi’, an official at Delhi’s health department told the Hindustan Times.

Sit-in protest against stock-out of third line ARV (anti-retroviral) drugs, at NACO’s office in New Delhi on 11 July 2018.(Photo provided by DNP Plus)

Difference in costs between the first line and third line drug combination explains why HIV patients flock to government-run ART centres to get prescribed medicines.

While the first line HIV drug combination costs somewhere between Rs 1,000-Rs 3,000 for a month, the price for third line drug combination for 30 days is between Rs 20,000-Rs 25,000.

What Does it Mean to Skip HIV Drugs?

According to Dr Pooja Khosla, Senior Consultant at Sir Ganga Ram Hospital, “HIV virus is very vulnerable to resistance and skipping of drugs may lead to mutation and thus, the first line of drugs will stop working”.

Dr Khosla who is associated with the Department of Medicine with her primary interest being HIV says:

“Monthly dose of drug is more important than food if the patient is on third line of drugs.”

Dr Pooja Khosla, Senior Consultant, Sir Ganga Ram Hospital

An HIV Positive Patient Seeks Judicial Intervention

In 2016, an HIV positive woman filed a PIL at Delhi High Court alleging that ‘ART centres did not have sufficient stock of antiretorvirals, as patients were being given medicines for only 15 days at a time.’

Speaking to FIT, the petitioner says, while the residents of Delhi struggle to get HIV drugs, its even worse for those who come here from other states.

“When we need medicine for one month, we are sent back with just one week’s dose. At times, we are given medicine only for fifteen days. I have a brother and sister who are HIV positive as well and they also face similar problems. We are poor people, can’t take leaves so frequently just to get medicine.”

Petitioner who has filed PIL regarding shortage of HIV drugs in Delhi

Listen in to the petitioner who approached the Delhi HC over shortage of HIV drugs. Voice has been distorted to protect the woman’s identity.

On 18 November 2018, the Delhi High Court sought a response from the Ministry of Health after the woman filed a contempt petition against the Centre, AAP govt and NACO. Next hearing in the case is expected on 12 March 2019.

‘Situation Hasn’t Improved Since 2004’

Loon Gangte, an activist with Delhi Network of Positive People, who is an HIV positive himself, says that situation hasn’t improved since 2004 when they started monitoring stock-out of AIDS drugs.

“Since 1 April 2004, we have been monitoring the stock-out but sadly the situation is not improving. It seems to me there is no political will to solve this. We write 2-3 mails every week, imagine the condition in the far-flung areas of north east.”

Loon Gangte, Activist, Delhi Network of Positive People

Gangte now refers to these mails as ‘laugh letters’. There was a big hue and cry after the BJP-led government had slashed NACO’s budget to Rs 1,397 crore, a decrease of 22 percent in 2015-16. However, the budget was increased by 17.65 percent from Rs 1700 crore in 2016-17 to Rs 2,000 crore for the year 2017-18.

Activist Loon Gangte who has been on HIV treatment since 2002 says while there is no shortage of budget, there are structural problems with NACO that explain the problem of stock-out.

‘Prevention’ Better than ‘Cure’?

On 15 October 2018, in a column titled ‘AIDS Control in India Losing Momentum’, JVR Prasada Rao, former Union Health Secretary who was the Director General of NACO between 1997 and 2002 wrote:

“First came the fund crunch, the programme not getting full funding based on cost estimates for prevention. Then came the administrative changes governing the AIDS control programme and, most importantly, the disengagement of civil society partners in the implementation of prevention programmes. Funds have not reached agencies implementing prevention programmes and many of the targeted interventions (TIs) have closed down, leaving the beneficiaries without any prevention services.”

Excerpts from a column in the Hindu Businessline by JVR Prasada Rao, former Director General of NACO

Targeted Interventions (TIs) refers to providing prevention and care facilities to high risk populations.

According to activist Deepak Rana who works with Alliance India, an NGO that works in the area of prevention of HIV/AIDS, convincing those belonging to high risk population for regular check-ups is a challenge. ‘We keep on tracking their progress as the High Risk Group (HRG) comprising sex workers needs to undergo HIV test every six months’, says Deepak.

Alliance India focuses on the High Risk Group (HRG) comprising sex workers and transgenders and lately has started approaching spas and massage parlours in Delhi, in a bid to spread awareness about use of condoms.

A man whose wife works as a sex worker in east Delhi holds a packet of condoms provided by NACO.(Photo: Akanksha Kumar/ FIT)

An activist who did not want to be named and works with an NGO that helps HIV/AIDS patients said, ‘Initially, it was the duty of State AIDS organisations to procure drugs and condoms directly from NACO. But ever since the NHM (National Health Mission) came into picture since 2013, the problem began.’

Perhaps it’s for this reason that activists like Loon Gangte who have raised concerns about India’s AIDS prevention programme for almost two decades are now demanding that NACO should be given autonomy.

In a country where approximately 21.40 lakh people are living with HIV-AIDS (as per a 2017 report by NACO), perhaps it’s time when skewed policy decisions need a re-look.