Following the June 2001 “Call to Action” at the UN General Assembly Special Session on HIV/AIDS, in September 2003 the WHO, UNAIDS and the Global Fund to Fight AIDS, Tuberculosis and Malaria launched the “3-by-5” initiative or treat 3 million people living with HIV/AIDS by 2005. Lee Jong-Wook, the Director General of the WHO declared that, “Lack of access to antiretroviral treatment is global health emergency. ... To deliver antiretroviral treatment to the millions who need it, we must change the way we think and change the way we act” [1]. According to the WHO estimates, of 40 million People Living with HIV/AIDS (PLHA) in the world, 95% are in developing countries and of the 6 million people currently in urgent need of antiretroviral therapy (ART), less than 8% receive it (as compared to that in the WHO region of Americas, 84% have been brought under treatment)1. The 3-by-5 initiative found its echo soon in India where 4.58 million PLHA were detected by 2002. The government announced that from April 1, 2004, in six high prevalence states - Andhra Pradesh, Karnataka, Maharashtra, Tamil Nadu, Manipur and Nagaland - it would begin its programme of providing free ART. Later, the government also added the low prevalence state of Delhi due to its “high vulnerability”!! [2] According to the NACO, in the first phase of its implementation the programme would cover sero-positive mothers, sero-positive children below the age of 15 years and people with AIDS who seek treatment in government hospitals; and the estimated coverage of the PLHA would be slightly over one lakh [3]. Perhaps it would be proper to call it “1-by-5” strategy - covering one lakh PLHA by 2005. The WHO and now the NACO have come out with the detailed technical guidelines for selection of the patients, treatment and monitoring.

This change in the “way we think” is brought about by many factors, but two of them stand out the most. The first is the unprecedented HIV/AIDS activism, with direct participation of the PLHA all over the world, including India. They used all kinds of methods to pressure governments and international organisations to recognise their right to treatment and care. The second factor was the growing realisation that the epidemic of the HIV/AIDS was causing massive havoc on the economy and society in several parts of the world. The Public Health issues of this kind have now been well recognised as human rights issues. In fact, HIV/AIDS provided massive impetus to the orientation of the public health to the human rights, particularly the right to health and the vice versa. As compared to that, the understanding of the connections between the ethics and human rights, and so the public health, was late in development, but is soon catching up with the larger movement. Therefore it is important to put the Indian government’s change in “the way we think” and “the way we act” under the scrutiny of ethics.

 Obligation of the health system to care and treat:

The record of health system in India is dismal on this count. The medical profession has extensively practiced discrimination against the PLHA. Hospitals are testing patients for HIV infection without their knowledge or consent, without pre-test counseling contrary to national and international guidelines. In the private sector, patients found HIV positive are shunted to government hospitals, discharged on some pretext or charged extra for treatment with ’special protection’. In government hospitals, patients with HIV are referred to the STD wards regardless of the source of their infection. Some have been refused emergency treatment and others have been isolated, their HIV status thus being made public. Some have even been physically assaulted for concealing their infection [4], [5]. A few professional organisations have even argued in favour of the right to refuse treatment to people with HIV [6].

Interestingly, the private health sector has been delivering the ART since long to those who could afford it, but such delivery has gone hand-in-hand with the increase in discriminatory practices. Such situation makes us sceptical of the claim that the stigma and discrimination would reduce as treatment option become available. More importantly, the government’s programme makes commitment to cover only around 2% of the suffering PLHA, and thus deliberately leaving out a vast number simply because the system cannot afford it. The plethora of guidelines developed by the WHO and others, including NACO are for selecting these 2%. It is assumed that using technical guidelines giving medical criteria to select the recipient of benefits would make the selection objective and impartial. How could the selection process be impartial and objective if the profession that is supposed to implement it has shown deep partiality and discriminatory behaviour? This is an issue of credibility and legitimacy of the agency selecting patients. Therefore the introduction of the free ART to selected few should go hand-in-hand with the strict enforcement of the fundamental obligation to non-discriminatory care for patient by the profession and the services.

 Being just and seen to be just:

In the principle-based approach to ethics, the justice occupies a prime place. It is this principle that looks the most at peril. Clearly, the trade and industrial policies that grant intellectual property rights and liberate the price of drugs in the manners that disregard human rights of patients are responsible for such public health and ethical crisis in the HIV/AIDS. When, between the corporate profit and the lives of the patients, the political choice is made overwhelmingly in favour of the former, the principle of justice is the casualty. But this is a part of grand scenario. Problem is also at the micro-level of the new policy.

Admittedly, the 3by5 strategy of the WHO and for that matter the government of India’s new strategy on ART do not intend to cover all who will be eligible for the treatment. This means some are to be deliberately left out; as will be all those PLHA who live in states other than seven named. Even within those states, only certain categories are made eligible. Essentially these are political decisions made under the cover of the technical-medical arguments. The ethical crisis would loom large if credibility and legitimacy for such a policy is not established. For instance, the argument that Delhi was belatedly included because of its higher “vulnerability” hides the fact that it is not medical vulnerability that has brought it in, but the political vulnerability, and the political vulnerability flows from the fact that the policy is based on “selection” that still does not have the legitimacy. It would not be a surprise if another place by creating political vulnerability for the government forces itself in as Delhi has done.

This means the policy needs to be seen as just or what Norman Daniel describes as having “perfect procedural justice” [7]. Such process has many facets and all need to be carefully implemented. If the states are selected on the basis of the sound public health logic, it must be strictly adhered to and should not give in to the political exigencies. The location of treatment facilities ought to be such that physical access to it is easy. As of now, the 15 institutions identified in the NACO guidelines are grossly mal-distributed, as 10 of them are in Maharashtra and Tamil Nadu alone. This physical location carries forward the past unjust distribution and so needs to be corrected immediately if there is commitment to be just to the PLHA in other states selected and also those, which are not. The issue is also of ensuring prevention of drug resistance due to poor adherence to protocol and compliance to treatment. The NACO needs to clarify whether the technical criteria of selection also includes the value judgement of the patients who are best placed to follow compliance. Besides, the past experiences in the treatment of other communicable diseases show great irresponsibility of the private health sector’s irrational prescription practices, discarding patients running out of money mid-way through the therapy etc. for development of drug resistance. Since the ARTs are being used by the private health sector since long and it will continue to use it, the needs for stringent regulation of the private sector’s prescription practices must be brought on the policy agenda. In the absence of that the policy would suffer reversals thus again jeopardising the PLHA’s right to treatment. Other issues of corruption in the system leading to discriminatory rejection of deserving patients and the “free” treatment becoming costly “bribe” need to be addressed to. Above all, the need for transparency in the policy and its implementation are absolutely essential to prevent corruption as well as to find legitimacy for the package developed by the government.

Just process also demands fair explanation on why the people suffering from other diseases - many of them life threatening - should be made to pay in the government centres for drugs and user charges when the ARTs will be freely available. The new health policy and even the Common Minimum Programme of the new government has promised that the government expenditure on health care will be increased from 0.8% of GDP to over 2% of GDP. Just process demands that there is transparency about when it will be achieved and whether the increased funding will go primarily for the HIV/AIDS programmes or will be fairly distributed across the suffering patients of all types.

In all, the medical ethics movement in India need to keep a sharp eye on this programme. Such work not only would prevent unethical unfolding of the programme but also make the ethics movement to learn immensely from the public health and human rights concerns.

References

1. WHO/UNAIDS, “Treating 3 millions by 2005: Making it happen: The WHO Strategy”, World Health Organisation, 2003.

2. Toufiq Rashid, “AIDS control, Delhi gets free drugs: Though low-prevalent zone, Capital gets priority due to `high vulnerability’”, Indian Express, New Delhi, March 31, http://cities.expressindia.com/fullstory.php?newsid=?450#

3. NACO (National AIDS Control Organisation), “Programme Implementation Guidelines for a Phased Scale up of Access to Antiretroviral Therapy for People Living with HIV/AIDS (Draft)”, Accessed on June 13, 2004, from http://www.naco.nic.in/

4. Ahmed Feroze, “TN doctors shun AIDS patients”. The Hindu, March 7, 2003.

5. Agencies, “HIV positive patient abused by doctor”. Central Chronicle. May 31, 2004.

6. Dutta Rita, “Medicos oppose legislation on safeguarding rights of HIV patients” Express Health Care Management", Feb 16-28, 2003

7. The authors are thankful to Norman Daniel, Harvard School of Public Health for providing insight in this issue in personal discussion as well as by sharing draft of his to be published paper titled “How to achieve fair distribution of ARTs in ’3 by 5’: Fair process and legitimacy in patient selection”.