Waiting at Room No 60, Sassoon General Hospital

[Guest guest]

By Durga Chandran

Suresh Sawant is the 600th-odd HIV-positive patient listed in the register of

those applying for free anti-retroviral therapy at Pune’s largest public

hospital. He has been camping on the footpath outside the hospital with his

family. But, as of now, only 86 of the hundreds applying are receiving the free

therapy

Thirty-year-old Suresh Sawant (name changed) from Shevgaon village in Ahmednagar

district, Maharashtra , is HIV-positive. Frail and undernourished, Suresh, a

daily wage labourer, has been unable to work for the last couple of months. He

complains of acute and persistent diarrhoea; he can’t eat much. This is his

third visit to the Sassoon General Hospital, Pune, one of four centres in

Maharashtra identified by the National AIDS Control Organisation (NACO), the

nodal agency for implementing the HIV/AIDS prevention and control programme in

India, and the World Health Organisation (WHO) for free anti-retroviral therapy

(ART) to people living with HIV/AID (PLHA).

Suresh has been camping on the footpath outside the hospital for the last three

days, with his 75-year-old mother and elder brother. Despite being told

repeatedly by the counsellor that his name had been entered in the record book

and that he was the 600th-odd patient on the waiting list for the free ART

programme, Suresh stands there pleading for some medicine to relieve him

temporarily of his ailment. Besides the physical pain, there’s fear lurking in

his eyes as he wonders if he will survive the long months before the free drug

is actually made available to him.

It’s evident from the steady stream of people queuing up outside the old OPD of

the Sassoon General Hospital (Room No 60) -- where patients are being screened

for free ART -- as well as from the already overflowing register that there are

many like Suresh who cannot afford to buy the expensive anti-retroviral drugs

(costing around Rs 1,100 a month) and are awaiting their turn for the free

therapy after undergoing the initial screening.

Of the 700 or more PLHA who have been screened since January 5, 2005 , around 86

patients were enrolled in the free ART programme in Pune as of February 9, 2005

.. They are getting a fixed dose combination of three drugs -- Stavudine,

Lamivudine and Navirapine. According to the hospital authorities, the number of

patients receiving the free drugs has been arrived at on the basis of NACO

guidelines.

The NACO guidelines, called ‘Programme Implementation Guidelines for a Phased

Scale-up of Access to Antiretroviral Therapy’, were drafted following the Indian

government’s decision in 2003 to place 100,000 AIDS patients in India on

structured anti-retroviral therapy by the end of 2005, and 15-20% additional

AIDS cases each year thereafter for a period of five years. The guidelines spelt

out a detailed implementation of anti-retroviral drugs to people living with

HIV/AIDS.

Andhra Pradesh, Karnataka, Maharashtra , Manipur, Nagaland and Tamil Nadu are

the six high-prevalence states where the drugs, procured through the WHO, are

presently being administered. In Maharashtra , the drug is being administered in

regions with a high prevalence of PLHA -- like Mumbai, Sangli and Nagpur ,

besides Pune.

According to statistics supplied by the Maharashtra State AIDS Control Society

(MSACS) involved in the implementation of the National AIDS Control Programme in

the state, Maharashtra has around 128,011 people who have tested HIV-positive

(between August 1986 and February 2004). The MSACS’ AIDS surveillance report

further reveals that as of February 2004 there have been 9,569 AIDS cases in

Mumbai alone, 2,507 in Sangli, 1,026 in Pune and 636 in Nagpur .

Considering the growing number of HIV/AIDS cases in the state, the MSACS, in

coordination with NACO, decided on a specific number of patients to target at

each regional centre. The guidelines set a target of free drugs for 150 patients

for Mumbai’s JJ Hospital, BYL Nair Hospital and KEM Hospital, but the enormous

number of patients who queued up to receive the drugs forced the government to

increase the number from 150 to over 960. In Sangli too the number was raised

from 150 to 240.

In Pune, the BJ Medical College and Sassoon General Hospital were given the

target of enrolling 75 patients, a number arrived at in keeping with drug

supplies made available to the centre. “We have extended the number to 86 as the

entire drug stock for the year has arrived and we can cater to a few additional

patients. I have also written to the MSACS requesting an increase in drug

supplies so that we can extend the free ART programme to benefit more patients

in and around Pune,” says Dr Kakrani, professor and head of department of

medicine in charge of supervising the free ART programme at Sassoon.

The screening was based on three essential criteria -- an ELISA test to confirm

the HIV-positive status of patients, CD4 count blood test, which measures the

strength of the immune system after a diagnosis of HIV infection, and, most

important, ascertaining the patient’s willingness to adhere to the prolonged

treatment. Among those screened, WHO class III patients (those who exhibit w

eight loss of more than10% and symptomatic diarrhoea/ fever for longer than a

month) and class IV patients (who exhibit s ymptomatic AIDS-Wasting syndrome and

severe opportunistic infections) or those with a CD4 count below 200 were given

preference.

Although the introduction of the ART programme in the fight against HIV/AIDS has

led to a dramatic decline in AIDS-related morbidity and mortality, the

effectiveness of the programme depends mainly on the patient’s adherence to the

lifelong regime; therefore patients with regular follow-up rates were included

in the programme.

Dr Sanjay Pujari, director HIV project, Ruby Hall Clinic, Pune, in his article

‘Anti-retroviral therapy in India : Some cautions’, published in the Indian

Journal of Medical Ethicssays: “Adherence is critical for the long-term success

of anti-retroviral therapy. Patients need a lot of encouragement and support to

achieve more than 90% adherence to their regimes. Education and support by

physicians, coupled with a commitment by patients to continue despite

side-effects and inconvenience, is a critical component of successful

treatment.”

The role of the counsellor becomes extremely important in this regard. It is

left up to the counsellor to talk to patients and their families and make them

realise the importance of taking the medicine regularly.

“The government guidelines required the centre to administer the drug to

patients within a 50 km radius of Pune as it would be easier for them to visit

the hospital every month to collect their pack of the free medicine. But the

centre has been receiving patients staying 300-400 km from Pune. Most of the

patients cannot afford the trip to the city every month,” says Vaishali Gaikwad,

the newly appointed counsellor for the free ART programme at Sassoon Hospital .

According to hospital sources, although NACO’s guidelines were kept in mind,

most of the 86 patients were chosen on a first-come-first-serve basis and

belonged to rural pockets of Pune, Ahmednagar and Marathwada. Children and

pregnant women were not being administered the drug. “The saddest part about

anti-retroviral therapy in India is the unavailability of paediatric

formulations of these drugs,” says Dr Pujari.

The male to female ratio of ART drug recipients in Pune is 70:30. “This is

reflective of the ward admission in our hospital too, where very few women from

rural backgrounds or otherwise come forward for treatment, especially if it

involves sexually transmitted diseases,” Dr Kakrani adds. It is also interesting

to note that there are no commercial sex workers receiving the drugs; a reason

for this could be lack of information about the programme or their unwillingness

to come forward and identify themselves.

The fear and social stigma attached to the disease together with lack of

awareness about the programme are resulting in many patients rushing to private

practitioners, some of whom are taking advantage of the situation. “We were

taking the anti-retroviral drug from a hospital near our home for the last one

year. Every month we had to pay Rs 800 for the drugs and Rs 100 as consultation

fees, but there was no remarkable difference in our health,” say Seema and

Rajesh Naik (names changed), who are now waiting for the free treatment at

Sassoon.

“The test to check our CD4 count was done just once at the beginning of the

year, so we had no way of knowing the efficacy of the drugs on our immune

system. Only after attending the counselling session at Sassoon Hospital did we

find out that the tests should be repeated two to eight weeks after starting the

therapy and then every three or eight months. We lost a lot of money,” says

Seema.

Although the free ART programme has brought hope to a lot of people living with

HIV/AIDS and their families, there are still several missing links in the

programme. It is important to remember that for the 86 who have been included in

the programme in Pune, there are 700 others who are yet to receive the

treatment. And that number could be just the tip of the iceberg.

“I have been coming to Sassoon since January this year hoping to get the free

treatment but they have told me to wait since my CD4 count is not below 200. Do

they have to wait till my condition worsens and then treat me? With a meagre

salary of Rs 2,500 to run my household, I cannot afford to come to the hospital

often,” says 40-year-old Asif (name changed) who works in a bakery to support

his wife and children. The frustration of someone who is aware of the

availability of the free drug at such close quarters and is unable to avail of

it is palpable.

InfoChange News & Features, April 2005

http://www.infochangeindia.org/features260.jsp