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The hidden costs of treatment

Free anti-retroviral therapy at government-run centres has improved things for people living with HIV/AIDS. But there are hidden costs, very few centres, and poor quality of service, which state governments must take note of, says Ranjita Biswas

In 2008, the National AIDS Control Organisation (NACO) announced its decision to provide second-line treatment of anti-retroviral therapy (ART) to people with HIV for whom the standard first-line drugs had failed.  

The announcement drew much cheer. Since 2004, first-line ART is provided free of charge at government-designated link centres as per NACO guidelines. People living with HIV/AIDS (PLHA) can collect their medication at these centres, and also undergo follow-up tests. However, many people on this treatment – whether in the government programme or through private clinics – had developed resistance to the first-line drugs and needed second-line drugs which were far more expensive. So the government programme offering second-line drugs was welcomed.  

However, the realities of treatment are not all that rosy, report many PLHA. There are many hidden costs involved in obtaining treatment, either because the government programme has not addressed these so far, or because of the ground realities of obtaining care in India. Further, with very few centres in rural areas to distribute the medication, and the desperate scarcity of facilities for the tests they have to undergo on a regular basis, the term “free treatment” may be a misnomer.  

Around 2003, researcher Rakkee Thimothy conducted a household-level survey on the economic impact of HIV/AIDS in Kerala. She found that 20% of those interviewed had spent up to Rs 50,000 on treatment for HIV-related illnesses; 32% had spent between Rs 50,000 and Rs 100,000. A little over 5% had spent Rs 100,000 to Rs 200,000. All this did not include associated costs such as travel.  

Twenty-four per cent had used anti-retroviral (ARV) drugs at one time but had stopped, presumably because they could no longer afford them (this was before the government started providing ART). An estimated 61.3% bore an economic loss of between Rs 50,000 and Rs 250,000. Twelve per cent estimated a loss of between Rs 250,000 and Rs 500,000. Sixty-five per cent paid their direct costs by selling assets.  

Today, the figures may not be as dismal, at least for those who are able to get their ART from government-run centres. Still, those who can afford private clinics would rather avoid government centres. 

For example, Celina Menezes, president, Delhi Mahila Samiti (Women’s Forum of Delhi Network of Positive People - DNP+), would rather go to a private clinic though this means she has to pay for the mandatory tests which costs around Rs 5,000 annually. She has her reasons.  

Diagnosed with the disease in 1996, she started on ART in 2008. She gets her medicine free from AIDS Healthcare Foundation (AHF), a Los Angeles-based global organisation that does advocacy and provides medicine. “My experience with government centres (All India Institute of Medical Science, Delhi, in her case) has not been good. I had to go for tests as my gland was swelling. It took me one whole day only for registration. As for the biopsy test, though I arrived at 9 am sharp, the first one to do so, I was the last to be examined -- after 25 other patients. I was told by the technician that as I am a PLHA they had to take ‘extra precaution’.” She was on an empty stomach until she was tested because it was necessary for some tests. Without the presence of friends and family members, the whole experience was quite traumatic for her.  

Menezes says that it is better to take ART from the government centres because one is assured of a continuous supply of drugs once registered; private clinics or NGOs may stop supplying the medicine free if there is a funds crunch. Still, she prefers going to AHF. “The staff at these (government) link centres for ART are sensitive enough but tests have to be done in other departments and then we face a lot of problems or are treated not on par with other patients, though it’s against universal norms concerning PLHA.’’  

Menezes also spends on the CD4 count test every six months, and that costs around Rs 1,200. In addition, she gets a viral load done annually. The CD4 count test is for checking immunity levels while the viral load test (Rs 4,500) is for checking the levels of the virus in the body. Then there are other tests she does twice a year like sonography of the abdomen and x- ray of the chest. In some situations, a biopsy may be advised. All these tests are advised to monitor the impact of the drugs on the body’s immunity and on levels of the virus, or to check for opportunistic infections like tuberculosis. These are done at a private laboratory.  

Menezes also spends around Rs 500 a month on some medicines and vitamins because “nobody supplies vitamins free as far as I know.” Her doctor has advised the vitamins along with high-protein food. She admits that those who do not have a regular income find it very difficult to bear these costs.  

Tarit Chakraborty, vice-president of the Bengal Network for People Living with HIV/AIDS (BNP +), was detected with the infection in 2002 but has been on ART only since 2007. He also says, “Even if you can get tests done in government hospitals it’s a long process, and machines often break down. I spend Rs 2,000 on an average every year for these tests but for those who can’t afford it, it’s quite frustrating.”  

Chakraborty obtains ART from the ART centre at the School of Tropical Medicine. He has had various opportunistic infections and spends an average of Rs 500-600 on medications and multi-vitamins every month. Some of the medicines are supposed to be supplied by the ART centre but he must buy them from elsewhere if the centre is out of stock. He spends at least Rs 200 on vitamins prescribed by the ART centre. 

Dr Santanu K Tripathi, professor and head, Department of Pharmacology, Burdwan Medical College in West Bengal says that “just because one is under ART doesn’t necessarily mean that one has to take vitamins. It depends on the weakness or state of immunity in the PLHA and a doctor would gauge that.” He cautions that there is a “culture” of vitamin-adherence among people in general who believe that vitamins are vital to cure any disease.  

There is another problem as well. Dr Tripathi says he has often observed that if a prescription contains both vitamins and an antibiotic, a PLHA with limited resources may go for the vitamins first and may postpone buying the complete course of the prescribed antibiotic. This may affect the PLHA’s health in the long run. Dr Tripathi is part of an ongoing study on the cost of healthcare for the common man (not specifically for HIV/AIDS) and has observed a disturbing trend: “The profit margin for vitamins or tonics is much higher than, say, antibiotics. Hence there is a ‘push’ factor encouraging the use of these supplements, sometimes when they are unnecessary.” 

For those in the hinterland, there is also the cost of travel to the town/city. Due to the long queues or for other reasons, a PLHA may not get the medicine from the ART centre on the same day, and may have to stay back in a hotel, adding to the expense. Recently, the Indian Railways has started giving a 50% concession to those who have to travel to get their ART. But, as Celina Menezes points out, many areas are not well-connected by rail and people who need ART have to travel by bus. In Rajasthan, bus travellers get a 75% concession while in West Bengal a card is issued for PLHA to travel while going to collect the medication.  

As for the NACO announcement of free provision of second-line drugs for ART in 2008, activists say that there are very few people who have enjoyed the facility. There is also a bureaucratic snag, Menezes points out: “The rule is that only a person who got first-line ART in a government clinic is eligible for second-line. But prior to 2004 there was no such facility in government centres and people were on ART in private clinics. So these people now can’t approach government clinics. At the same time the drugs are very expensive.”  

S K Shajahan, secretary, Network of PLHIV, Hooghly district, West Bengal, tested positive in 2001. Till 2005 he was being treated in private clinics, scraping together his resources and getting help from friends. “I even thought of committing suicide before joining the Network, I was so desperate because of the financial burden.’’  

He is now on ART (first line) provided by the government, but complains of the poor service. “We are not getting proper service; this is the experience of many of our colleagues.” For example, the drug Septran DS is often not available. “Doctors at ART centres ask us to buy it from the open market (at Rs 11-Rs 15 per strip) when government ART centres are supposed to supply it free.” 

Septran DS is a prophylactic against opportunistic infections to be given, Menezes says, if the CD4 count goes below 200 and people have certain symptoms like coughing due to low immunity levels. However, once the CD4 count reaches 500 it is generally withdrawn.  

Dr D N Goswami, joint director, West Bengal State AIDS Prevention & Control Society (WBSAPCS), contests Shajahan’s statement. “There are enough Septran DS in stock and we have sent the centre (in Hooghly) a fresh consignment recently,” he says. However, he does admit that drug shortages do occur. “The problem is that the list of medicines that have been approved for treatment of HIV is long.” Doctors in government facilities sometimes prescribe expensive medications that are not on the government’s list of drugs. To address this problem, he says, a committee of experts and physicians has been formed to prepare guidelines to restrict the number of medicines that may be prescribed by a government clinic.  

What about second-line ART not being available? Goswami says that the policy has been introduced only recently by the government and the process will take some time to be streamlined. “Besides, the medication is quite costly and this has to be considered too.” Currently, about 9,500 PLHA are receiving ART (first- and second-line) in government institutions in West Bengal, according to the state health department website.  

Kajal Basu (name changed), a counsellor at an NGO in Kolkata is happy with the available facilities. “I was detected with the infection in 2002 and was put on ART right away. At that time, I had to spend at least Rs 5,000 per month. I came to know about free medication only in 2005 and since then I am getting my ART from the School of Tropical Medicine. My tests are also done there and so my expenses on that count are nil now.” Fortunately, she does not suffer from any opportunistic infections at present.  

Basu speaks highly of the Jagrity scheme for HIV-positive mothers that WBSAPCS announced on December 31, 2008. The scheme is meant for expectant PLHA mothers; they have to be registered in a government ART centre and if the birth takes place in a government hospital, she gets Rs 1,000 as an incentive, plus other related costs are free. It is aimed at preventing mother to child transmission of HIV (as both mother and child will be given treatment) and also to encourage women to go to government centres for pre-natal care. 

Kajal Basu adds that the service needs improvement. People come from distant places to get the medication and tests, but sometimes they are turned away because the machine has broken down, or there is some other problem. “Especially for people under BPL (below the poverty line) a day’s delay in treatment means losing a day’s earnings and it can be quite depressing for them. For this reason, many stop coming to the city for treatment despite knowing the dangers of not taking their medicines. They simply can’t afford to, as earning their daily bread to avoid hunger takes priority,” she says. 

Though free medication provided by the government is essential, the problems faced by PLHA on the ground shows that much more streamlining and more sensitive handling of the issue is required. 

(Ranjita Biswas is a journalist based in Kolkata writing mainly on women and gender issues, HIV/AIDS and environment. She is also Editor of Trans World Features) 

InfoChange News & Features, March 2009