The Tribune - Spectrum

Sunday, May 21, 2000
Lead Article


We have to accept the fact that thousands of people are going to be AIDS victims very soon. With 3.5 million people in India infected with the virus, the HIV infection has been labelled as an "epidemic" in many developing countries like Africa, India and those in S.E. Asia. Though medical care is the basic step in combating the virus, awareness and support systems are vital, says Aradhika Sekhon.

THE case of Gurcharan Singh (real name concealed), a truck driver who fell and broke his femur, made it to some newspapers. He was brought to a leading hospital in Delhi for treatment. Since the surgery was invasive, a series of tests had to be carried out. Gurcharan tested HIV positive. After that, he kept lying in the hospital for four months as the doctors did not want to touch him. The result was that the broken femur shifted up, and one of his legs became shorter than the other. Action was taken only after an AIDS activist landed up and ensured treatment for him.

Photo illustration: Kuldip DhimanIn fact, care of the HIV/AIDS patients includes the involvement of the individual, the partner, the family and society, besides medical care which is the basic step towards combating AIDS. An HIV-infected person may develop AIDS within two to 15 years (or more) after becoming infected with the AIDS virus. Medical care can inhibit the growth of HIV, thus preserving the immune system and delaying the onset of infections. However, apart from medicines, each one of us needs to get involved — even if it means being aware or creating awareness.

We have to accept the fact that thousands of people are going to be AIDS victims very soon. With 3.5 million people in India infected with the virus, the HIV infection has been labelled as an "epidemic" in many developing countries like Africa, India and those in S.E. Asia. The African experience should serve as a warning to our country. In Africa, AIDS has assumed disastrous proportions --- about 25 per cent of the population is HIV positive in some African countries. The public health departments of these countries,including India, lack the resources to treat and control the epidemic through education and awareness campaigns. HIV/AIDS has in fact become the leading cause of death among 25 to 45- year- olds — the most productive age of an individual.

Under these circumstances, we have to examine our systems of support, care, medical and social back-up and education to see just how equipped we are to take on a problem of such a magnitude. Moreso, when an HIV positive person is looking at a good 8 to 12 years of productive life after being infected.

  According Dr S. Kulkarni, founder-member of Prayas, a Pune-based NGO which has dealt with 2500 HIV positive people over the last 11 years, "The Indian society has unfortunately still not woken up to the threat of AIDS". In India, the truck drivers, sex-workers and intravenous drug users continue to be perceived as the sole carriers of the AIDS-causing virus and are targeted for blame. The growing trend of promiscuity and pre-marital sex, coupled with the failure of parents to impart adequate sex education is resulting in an unchecked spread of HIV in every strata of society. "Apart from significant levels of incest and extra-marital sex, the changing attitude among the youth is adding to the crisis" says Dr Kulkarni.

Due to an ambivalent attitude towards sex, the young people in India are dangerously ignorant about AIDS. Some schools in the USA and Europe have health clinics that distribute condoms to students. However, in India people oppose even classroom discussion on condom use. The fact we need to face today is that sex education is not the main issue. AIDS is. A greater awareness about AIDS, be it related to drug-abuse or sex, will result in more compassion and support for the HIV positive people.

Awareness also serves the purpose of providing information about the whereabouts of NGOs, counselling centres and support groups to the people who want to access these services. Om Parkash and Sushila (real names concealed), a low- middle class couple from Gorakhpur, came to a Delhi hospital because Sushila complained of persistent stomach pain. In the HIV test, Sushila tested positive. The couple were sent by the hospital to an NGO which advised Om Parkash to take the HIV test. He too tested positive. Neither of them had a clue as to what that meant. They have five children, the youngest of them, they say, falls ill with an alarming regularity. It then became the responsibility of the counsellor assigned to them to explain the significance of their status and suggest ways to handle it.

Says Gunjan Sharma, Project Officer & Counsellor, NAZ Foundation,Delhi, "It is essential for an agency or individual to have a strong back-up referral system with people who understand the issue and have either professional or medical training to handle it. Non-professionals should keep their hands off. They can only help in generating awareness and advocacy, not counselling".

The counsellor’s care starts when he/she meets the client for the very first time. In the pre-test session, history taking and risk assessment is done and information on HIV is given. After obtaining the informed consent of the client, another 2/3 ELISA tests are taken. If the result is positive, the onus of breaking it to the person is on the counsellor. "The only way to break the news is to give it to them straight", says Gunjan Sharma. The counsellor is now faced with a range of emotions from a complete emotional breakdown, denial, rejection to non-acceptance.

After the patient starts accepting his status, and with his/her permission, the family or partner is involved because hereafter the HIV - infected person will hinge on to this support for the rest of his life. If there is no support system, the role of the NGO becomes even more important. A good counsellor will inform, guide, direct and encourage and slowly bring about acceptance of the drastic change in the lifestyle that must necessarily follow detection of the deadly virus.There is only so much a counsellor can do. "We can help only if our patient wants to be helped" says Sharma.

Sudheer was a young man from a well-to-do family, who tested positive. He broke the news to his family, which contacted a counselling centre. The counsellor began visiting their house. One day, the counsellor was asked to discontinue her visits. "The family felt that their son displayed no sign of this ‘wasting disease.’ There was complete denial of the fact that there was something wrong with him. They wanted to get him married,"recalls Sharma.

However, more and more NGOs need to get involved because the doctors agree that without their involvement, counselling and awareness would get very limited. In the USA,
federal, state and local governments have provided funds for AIDS education, treatment and research. Public health clinics offer counselling and HIV antibody testing to people who have symptoms or are at a risk of infection. In addition, these clinics may privately notify an infected person’s sexual or needle-sharing partners of their risk so that they too can receive preventive counselling, testing and medical care. In India, on the other hand, public hospitals play no such roles and are insufficiently staffed by indifferent doctors and nurses.The gravity of the problem is evident from the fact that in Delhi there are just two care homes for AIDS patients with approximately 30 beds each.

No cure for HIV infection or AIDS has yet been found but treatments have been developed for these in the AZT, a reverse transcriptase inhibitor and the anti-retroviral therapy (ARV) which controls the replication of the virus. The government doesn’t provide either of these in the hospitals. In fact, many government hospitals lack even the universal precautions prescribed by the WHO — goggles, apron, double gloves, gumboots which have to be worn while examining HIV and hepatitis patients.

So whose responsibility is it? The patient’s? But patients need hospitals, doctors, medical facilities, proper and latest medication at subsidised rates. (The AZT therapy costs between Rs 20,000 and Rs 25,000 per month). A reassessment of medical priorities, norms and practices in public and government hospitals as well as retraining of medical, para-medical and other staff has to be done by Central and state authorities.

For the hundreds and thousands of people with HIV/AIDS infections, the economics of paying for care is a major issue. The problem may be solved by increasing prevention efforts and finding less costly alternatives to hospital care. Such alternatives include hospice care and expanded home care services. Dr Kulkarni of Prayas says that the Indian family usually provides excellent support in the event of one of the members getting infected with AIDS.

Even home-based care needs training which involves looking after the patient’s medication, and setting up of a fresh time-table so that he can do constructive activity. There has to be an exercise regime. He has to be motivated to work and to socialise. Home-based care also signifies not allowing the person to brood. The entire lifestyle of the family changes when it takes on the responsibility to care for its HIV positive member. When the person starts falling ill, the caregiver needs training in giving IV injections, cleaning and changing etc. All of this means that the caregiver too comes under a lot of pressure and trauma. In the USA there are support groups for support-givers which provide emotional and spiritual props to reinforce the resources of the caregiver.

People infected with HIV have unjustly been denied jobs, housing, medical care and health insurance. Children with AIDS have been kept from attending school. The government needs to include and execute laws protecting the rights of people. The confidentiality of medical records relating to HIV/AIDS status needs to be strengthened and health insurance issues for HIV/AIDS patients need to be seriously examined.

It is important to prevent discrimination against AIDS patients not only for moral reasons but also to help maintain public health. When people aren’t afraid of discrimination, they’re more likely to seek counselling and get tested for HIV. These measures could lead to earlier diagnosis.

Community participation and public co-operation in AIDS-related programmes is essential. This leads to accountability and proper utilisation of available services. In India, self-help groups of HIV people are now beginning to surface in some cities. Mumbai has Maharashtra Network for Positive people (MNP+), Tamil Nadu has TNP+ and there is also a network of HIV +ve women (WNP+) and an All India network (INP+).

Delhi, however, has only a few scattered support groups. Many more of these groups at all levels are needed because they give tremendous solace to people.

It is true that researchers over the world are working to develop safer, more effective and economical vaccines against HIV infections. However, even if HIV transmission ended today, AIDS cases would still occur because millions of people are infected with the virus. It’s high time that we took a position whereby we, as individuals and as a society, can say, "Yes, we care"u


uIf you suspect you’re HIV+, before going in for an ELISA test, make sure that there is a person whom you can confide your fears to.

uLocate a counsellor or doctor who can adequately explain the significance of HIV thoroughly. Misinformation can blur reality and engender a feeling of hopelessness and helplessness.

uCheck out your support systems and props. Take your family into confidence and if need be, introduce them to the counsellor too.

uConfidentiality is your right so you can carry on working at your present occupation until your health permits.

uGainful employment, socialising and exercise should be continued within reasonable limits.

uTry to find people/groups who are already suffering from the HIV syndrome shared experience gives support.

uBe regular with prescribed medication and visits to hospitals.

uHIV must bring about a change in lifestyle. Understand that and take positive steps to incorporate checks and balances in your life style.

uRemember, you have years of healthy, productive living to do so don’t let depression get you down.

uAbove all, let others help you.

Support systems needed for HIV+people
uAccessible information network.

uHospitals, testing centres with strong referral back-up systems.

uCounselling centres, NGOs, people with an understanding of the issue.

uSubsidised medical care.

uEmployment opportunities.

uMedical insurance cover.

uAcceptance by society, removal of stigma.

uSupport groups, especially for HIV+ people.

uHome and hospice care.