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Stigma Discrimination AIDS

Stigma and Discrimination of People Living With HIV AIDS (PLWHA) in India.

Bency and Benson Chandy; siblings, were expelled from three schools in Kerala, India. Their grandfather was fighting tooth and nails to get them a school admission. This attracted media attention, the state chief minister intervened and still admission was given almost a year later because of the resistance of local parents.

The reason: Bency and Benson were tested HIV positive and their parents had succumbed to the disease. Akshara and Anandakrishnan, two other HIV positive siblings were not that lucky. Anandakrishnan was expelled from his kindergarten after all other children stopped attending kindergarten for 6 months in protest of his presence. Ms.Krishnan, their mother contemplated suicide. When their plight came to the notice of an NGO, it provided her with the job of educating people about AIDS and helped Akshara and Anandakrishnan getting in school. Health experts from the government sector were sent to educate the parents and teachers about AIDS, but in vain. Kerala has banned discrimination against People Living With HIV AIDS (PLWHA).But the fight against attitudes, discrimination and stigma of people has just begun and there’s a long way to go.(2).These harrowing incidents occurred in the state of Kerala, ranked highest among all Indian states in terms of literacy, education, social welfare, AIDS awareness and having a health care system comparable to any western nation at a fraction of the cost.(3).This proves the fact that AIDS awareness will not be always comes with knowledge or tolerance. If this is the case in Kerala, the situation in other states can be presumed!

India has a prevalence of about 0.8% of HIV among adults .But with a massive population of 1.1 billion, this 0.8% makes a huge figure and India comes next only to South Africa in terms of number of People Living With HIV AIDS (PLWHA). (1)Of the 28 states and 6 Union Territories in India,6 states have a higher prevalence of HIV. Approximately 80% of the AIDS cases reported in India are from these states, namely Tamil Nadu, Andhra Pradesh, Karnataka, Maharashtra, Manipur and Nagaland. The mode of transmission is mostly heterosexual in Tamil Nadu, Andhra Pradesh, Karnataka and Maharashtra. In the north eastern states of Manipur and Nagaland injecting drug use is the major mode of transmission. The prevalence among this group is as high as 56%.More than half of the Commercial Sex Workers (CSWs) in the urban regions of the other four states are infected.(1) As per the 2007 UNAIDS estimate there are 2.5 million people living with HIV in India.(14,19)

There is also considerable stigma among the health care professionals in India. Due to this stigma, attitude and discrimination, there are many instances where HIV positive patients were given inferior treatment or no treatment at all. Health care professionals are basically a part of the larger society and in many cases, are influenced by the general negative attitudes in their society and act accordingly. (8,13) As in many parts of the world in India also there is the view that AIDS is a “disease of the others” meaning people who are leading immoral lives and having unnatural practices and hence also the attitude that AIDS is a punishment for the crime that the patients have committed. (4, 8)

Mahendra et al had done an interventional study for measuring stigma related to HIV in India (8).A total of 884 health care workers which included 134 doctors, 375 nurses and 375 ward staff were part of this interventional study. This brought to light discriminatory practices in hospital setting by health care workers like HIV testing and revealing results to relatives and friends without patient’s consent, labeling of files and belongings of HIV patients, obvious and unnecessary use of precaution in preventing transmission and also covert and overt means of disclosing the patient is HIV positive. This included having a separate room or section of the ward for HIV positive people, using gloves for handing them oral tablets or capsules etc.(8)

Quite a few health professionals had prejudiced attitudes towards HIV patients. One doctor viewed,

HIV can spread only through errors of human behaviour.” (8)

Another doctor opined, “High risk population means lower class people – they live in slums in unhygienic conditions. These people sleep with anybody. In this class of people, extramarital affairs are common and also drug users and sex workers come in this category.” (8)

One can see that this is a flawed view as HIV is prevalent among all classes of people and so can be the so called high risk behaviour. It was noted by the Indian Medical Association (IMA) that 2% of professional Indian expatriates like doctors and engineers are tested HIV positive after their 1st trip abroad.(5),which refutes the above mentioned point of view.

The National Aids Control Organization (NACO) has got stipulated guidelines in safety procedures for HIV patients. It states that transporting and touching patients, giving medicines or injections do not require gloves. When guidelines like this exist, use of gloves for any of the above can be considered as discriminatory behaviour and this also can lead to the unavailability of gloves when needed in resource poor settings.(8)

Due to these reasons patients who are HIV positive or presume themselves to be so can also resort to malpractices in seeking treatment. I would like to share an experience that I had while I was working in India. A Blood Borne Virus Screen (BBVS) is done

routinely for all patients posted for surgery or any invasive procedure and this includes screening for HIV, Hepatitis B and C and is a standard procedure. There was this particular patient who was HIV positive and had come to this tertiary care teaching hospital as he was not accepted for treatment in local hospitals. Fearing the same outcome here, he did not disclose his HIV status. When he was given blood slips for BBVS, he went to the lab and made his brother (who was HIV negative) give samples impersonating him. Naturally the BBVS turned out to be negative (as the patient had not given his blood sample) and surgery was carried out without the precautions needed for HIV positive cases. The patient himself had disclosed this when he consulted the Infectious Disease Clinic of the same hospital after his discharge. The fear on the part of the patient made him hide his status and thus probably have put to risk infecting the surgeons and the nurses during the surgical procedure he underwent. The Medical school then made impersonation almost impossible by making mandatory irremovable arm bands with unique patient ID that should be displayed to prevent impersonation and other malpractices.

The stigma and discrimination has also created another serious problem of spurious drugs and quacks claiming to cure HIV and AIDS fully and in the name of Ayurveda (the traditional and ancient Indian system of medicine, when it is not).In the 90s ,a Mr. Majeed created quite a storm in the medical world when he claimed that he had found a cure to AIDS and his firm, Fair Pharma manufactures it. The medical world refuted the claims of this person who is neither trained in any of the systems of medicine nor is registered with regulatory bodies of any medical systems. His firm had the license just to manufacture nutritional supplements. All his medications were sold by post without any medical examination or tests. The fact that he had cured a lady of HIV was widely advertised till she died of Tuberculosis as a result of full blown AIDS. People, who were HIV positive or thought so, bought the drug called "Immuno QR" through post or the internet. A 100 day treatment with the drug was claimed to be enough to cure HIV AIDS completely! Forged medical test reports were used to convince the patients that they were cured of HIV. Public Interest Litigation (PIL) filed by People’s Union for Civil Liberties (www.pucl.org) resulted in the High Court of Kerala prohibiting the sales and advertisements of "Immuno QR".(12).After lying low for a while, the fake drugs are still in market under a new name “CFS–QR”. Now it claims to cure “killer viral disease”. On going through the website one can be sure that this killer viral disease is HIV AIDS itself based on the symptoms mentioned. The same drug is also claimed to cure diseases from jaundice to nicotine reactions to leprosy. (11).The firm’s ability to survive through legal loopholes, influence and money power generated through fraudulent means is mainly by the stigma, attitude and discrimination of PLWHA.

Mass media have played an important role in trying to combat HIV and AIDS related stigma and discrimination. These are through short documentaries and advertisements on AIDS awareness being broadcast through television and radio. These were coordinated by the AIDS cell of the respective states and National Aids Control Organization (NACO). Special mention should be made of the program “Jasoos Vijay”

('Detective Vijay') made by the BBC in collaboration with India’s national AIDS control program and the public broadcaster Doordarshan. (10) The central character is an HIV positive sleuth who while solving crime mysteries were also educating people about HIV AIDS, its transmission, challenging stigma and discrimination issues, voluntary counseling and testing and care and support for people living with HIV AIDS. The program was aired in Hindi and also in seven Indian regional languages, thus increasing the penetration of the program to the rural masses. The series started going on air from 2001 till 2007 and had an unduplicated cumulative audience of 70 million people as per the estimates of Nielson's Television Audience Measure (TAM) Survey. It was also one of the top 20 televised programs in India(10). It was aired on Sunday at 8.30PM and over 153 episodes were aired. (10) The settings of the series were mostly in rural India so that the target audience can identify themselves with the surroundings and situations. Also the program was encouraging viewer participation by challenging them to find the culprit ahead of detective Vijay, inviting them to a meeting with the character and Bollywood actor Om Puri who will also be clarifying viewers’ doubts about HIV AIDS.A Jasoos Vijay website was created for the benefit of viewers giving links to basic facts about AIDS (http://www.jasoosvijay.com).BBC conducted research on various aspects of the program and found that the awareness among people had increased considerably. With respect to attitude, 80% of male viewers and 82% of female viewers think that people living with HIV AIDS have the same rights as those uninfected from the earlier 67% and 70% respectively.(10,15)

A doctor’s feedback about the program goes like this “"Jasoos Vijay" has played a very great role in spreading awareness about Aids, and also helping people know how to prevent it. Since this serial has started, patients are enquiring about Aids from me and are becoming more and more aware.” (15)

Another joint venture with NACO, Doordarshan and BBC World Service was “Haath se Haath Mila “(Let’s join hands), a reality TV show involving Bollywood stars joining hands with AIDS activists in this weekly program to increase AIDS awareness. (http://www.haathsehaathmilaa.com) (16) Just like Detective Vijay, BBC conducted research on various aspects of “Haath se Haath Mila” and found that with respect to attitude,79% of male viewers and 84% of female viewers think that people living with HIV AIDS have the same rights as those uninfected from the earlier 67% and 70% respectively.(16,18)

One can see quite a difference while going through 2 newspaper articles one published in July 1998 (5) and December 2007 (6).The former says about how families with HIV positive patients are being subject of social ridicule and some contemplating suicide. Also it states the refusal of admission for an HIV positive woman for labour;how relatives of HIV positive families find it difficult to find marry or how people are wary of marrying expatriates as the incidence of HIV among expatriate population was quite high. The latter, almost a decade later paints a better picture. Though issues regarding stigma and discrimination are there, it is less intense than it was a decade ago. The fact that the social stigma and discrimination is much less in high risk regions also is a tribute to the good work done by the Non Governmental Organizations (NGOs) who are making the difference by imparting better knowledge ,understanding and attitude.

The stigma and discrimination are mostly quite different for men and women. In many cases and situations in India, men may be excused for their behaviour whereas a woman will not be. There are quite a lot of instances where, in a joint family set up, the daughter in law is stigmatized and discriminated by the mother in law even if she had contracted the disease from her husband. (7,17) As woman puts it this way

"My mother-in-law tells everybody, 'Because of her, my son got this disease. My son is a simple as good as gold-but she brought him this disease".

(HIV-positive woman aged 26, India) (7, 17)

It is clear that a policy or law cannot eradicate or mitigate the stigma, attitude and discrimination related to HIV AIDS. There should certainly be a consensus and understanding on human rights of the people who are at risk or are deemed to be so or those who are infected and the rest of the society. A human rights approach lies in the core part of any program meant for HIV prevention or care of the infected.(9) The human rights approach can also reduce the stigma, discrimination and can act as a “social vaccine” both for the infected individuals against discrimination and stigma and for those who are uninfected by increasing awareness and understanding.

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