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Aids and maternity in India

 | 
Patrice Cohen
, 
Suniti Solomon

Part 1. HIV/AIDS epidemic in India

3. Milestones of the Social and Medical Treatment of AIDS by the NGOs in India: The Case of YRG Centre of AIDS Research and Education

Suniti Solomon

Texte intégral

1As the world enters the third decade of the AIDS epidemic, the evidence of its impact, especially in the developing countries like India, is undeniable. The epidemic has progressed fast and has reached the third place in the list of infectious diseases as a leading cause of death in the South-East Asian regions and is first in the list of the disease burden category in India (WHO, 2002).

2Since the beginning of the AIDS epidemic, global estimates indicate that there are 42 million persons living with HIV, of which 19.2 million are women and 3.2 million are children under 15 years of age (UNAIDS, 2002). On an average, there are 14,000 new HIV infections worldwide each day, 60 % of which are among those aged 15 to 24 (Aggleton & Rivers, 1998).

  • 1 Cf. www.avert.org/aidsindia.htm/as on 29 August 2003.

3This is one of the biggest plagues so far, bigger than the black death, which caused plagues in the 18th and 19th centuries. About 90 % of the total reported cases occur in the sexually active and economically productive age group of 15-44 years. The predominant mode of transmission is heterosexual contact, while the second most common mode of transmission is injecting drug use1.

4India is the second largest region next to Africa in the global number of people living with HIV. With a population of 1 billion, the estimate of 3.97 million living with HIV at the end of 2001 gives a fairly good rationale for the active involvement of non-governmental organizations. (UNAIDS, 2002-b).

  • 2 Dr Suniti Solomon and her team documented the first HIV infection in India at the Madras Medical Co (...)

5In India, the first evidence of HIV infection was documented in 1986. YRG CARE2 (YR Gaitonde Centre for AIDS Research and Education) was founded as part of the YR Gaitonde Medical, Educational and Research Foundation in 1993 with the goal of preventing incidences of new HIV infections and of helping those living with the infection to live with dignity.

6HIV is a very complex problem, touching on lives socially, economically, culturally and medically. YRG CARE is one of the very few organizations in the world to offer services along the entire spectrum of the Prevention to Care Continuum. At the prevention end, YRG CARE offers awareness and intervention projects for adolescents, industrial workers and police personnel. At the other end of the spectrum, it offers counselling, HIV and STD diagnosis and treatment. Along the spectrum it offers continuing public education through seminars, exhibitions, newspaper articles, etc.

Milestones of YRG CARE

Nov 1993 Voluntary testing for HIV antibodies offered together with counselling
Nov 1993 YRG CARE begins to function as the confirmation centre (Western Blot) for several hospitals and laboratories in Tamil Nadu
Feb 1994 Twice-a-week evening HIV/STD clinic inaugurated with voluntary services provided by physicians
Jun 1994 HIV/STD clinic strengthened - functions Monday – Saturday evenings
Dec 1994 Day care for PHA (Saturday afternoons) dedicated; home visits undertaken on call
Nov 1995 Full-time physician and nurse recruited; HIV/STD clinic and day care for PHA extended to other working days of the week, 10: 00 – 18: 00 hours
Dec 1995 Peripheral hospital for convalescing patients dedicated at Kottivakkam, Madras; second physician joins; home care strengthened
Dec 1995 Consortium of Consultants formed
Feb 1996 Dr. Suniti Solomon joins Voluntary Health Service Society as their Honorary Consultant for HIV medicine
Feb 1996 VHS – YRG CARE begins to admit and manage patients
Dec 1996 Established the “VHS – YRG CARE Medical Centre” on the VHS campus with a 16-bed inpatient facility
Dec 1997 Inpatient facility expanded to include a fully furnished day care; functional diet centre and drug and diagnostic support programme launched
Apr 1998 Women and children’s ward established with 8 beds; Women’s Reproductive Tract Infection (RTI) clinic also started
Oct 1998 Special paediatric outpatient (once a month) initiated
Aug 1999 Family Counselling Centre established
Dec 1999 Scale-up project with four partner sites in South India started
Dec 2000 VHS-YRG CARE Infectious Diseases Laboratory established
Sept 2001 VHS-YRG CARE Drug Centre established
Dec 2002 Tele-Counselling services launched Learning Resources Unit established
Jan 2003 First exclusive Intensive Care Unit inaugurated
Jul 2003 Expansion of VHS-YRG CARE Infectious Diseases Laboratory
Aug 2003 Dedication of the Community Research Site

7 In 1993, YRG CARE set up a voluntary counselling and testing service for HIV, a part-time STD clinic and a prevention programme that addressed young people in and out of educational institutions. When HIV-positive clients returning for support counselling reported that they faced stigmatization and discrimination at medical institutions, YRG CARE initiated a needs assessment study (support: UNDP). The respondents ranked access to care and medications as a primary need. YRG CARE then expanded to medical care, beginning with a one-bed relationship in a mission hospital and growing, by the year 2003, to 21 beds and an ICU with 2 beds at the Voluntary Health Services campus.

Sex Education, An Important Role in HIV Prevention

8In India, most NGOs took on prevention as their first step in reducing the spread of HIV infection in the early 1990s. YRG CARE was the forerunner in developing its own sex and HIV training module, “Learning to Play Safe”, which has been translated into the local languages in southern India. This module has assisted trainers in developing skills and techniques in reaching out to youth and their teachers through such programmes in schools and colleges.

9Although the awareness of HIV is increasing, it is not sufficient; for a decline in the incidences of new infections, we require persons to be aware of their risk behaviour and to be motivated towards behaviour change.

  • 3 APAC: USAID-funded Aids Prevention and Control Project; TNSACS: Tamil Nadu State AIDS Control Socie (...)

10Behaviour change is possible, although gradual. Social scientists need to understand that figures are not sufficient. An APAC3 study mentions 80-95 % awareness levels among various groups and the TNSACS mentions 93 % awareness among various groups.

11Using the top-down approach, YRG CARE first began its training programmes for a hall of 500 students using audio-visual aids. Realizing the limitations of large groups resulted in the formation of several small group workshops with much interaction and participatory methods. For example, a two-day programme for schools and colleges that included discussions on sexuality and reproductive health.

12Such programmes were further modified to meet with the training needs of peer educators, trainers, teachers and social workers from other community-based organizations (CBOs).

13Although the educational course curriculum of classes X to XII does include sex and reproductive health education, students reported that these chapters were often omitted since it does not fetch marks. Teachers reported embarrassment on discussing issues related to sexuality, relationships, sexual orientations, HIV prevention, condoms and reproductive health within the confines of their classroom.

14The mass media have a major role to play in preventive education messages. The use of art forms, puppet shows, street plays and music in the dissemination of information to persons with lower levels of literacy has been taken up by some community-based organizations. YRG CARE also used this strategy, which was most effective in reaching out to the population who were mostly illiterate.

Highlights of Such Preventive Education and Sensitization Programmes4

  • Advocates sex education among young people
  • Helps children and young adults challenge peer-propagated myths and misconceptions of sex and sexuality
  • Strategy includes structured interactive sessions with a facilitator as well as use of art form expressions such as street theatre, folk music, handicrafts, etc.
  • Comprehensive programme covering young people at schools, colleges, community clubs, shelter homes and reform institutions
  • Develops empathy for people living with HIV/AIDS
  • Peer educators as a strategy for sustainability
  • Awareness and sensitization programmes for industrial personnel covering several departments of about 30 industrial houses in southern Tamil Nadu.
  • A sensitization programme for prison authorities and prisoners at Vellore Jail led to a request for similar programmes.

15Often these sessions lead to a perception or assessment of one’s risk to HIV. This results in a need for confirmation of status and thus the person comes in for an HIV test. Laboratories have a major role to play in prevention and counselling.

Bridging the Gaps in Counselling, Testing and Treatment:

16Subsequent to the preventive education programmes, more and more persons accessed our services for counselling and testing. Since 1994, there have been more than 13,600 persons who have accessed our voluntary counselling and testing services.

Figure 3.1: Number of Clients Coming to YRG CARE for Voluntary Counseling and Testing (VCT), 1994 – 2003

Figure 3.1: Number of Clients Coming to YRG CARE for Voluntary Counseling and Testing (VCT), 1994 – 2003

17Since the first case detected in India was a woman in sex work, there have been misconceptions that HIV spreads only through this profession. The 13,600 persons who have accessed our VCT services belong to an entire range of occupations. The pie chart above depicts the percentage of persons from various work areas, including professionals like doctors, lawyers, students, housewives.

18The graph shows that 22 % of our VCT clients are housewives with their only reported risk behaviour being sexual contact with their husbands. Till today, most people are in denial of their risks.

Figure 3. 2: Occupation profile of YRG CARE Voluntary Counselling and Testing (VCT) clients

Figure 3. 2: Occupation profile of YRG CARE Voluntary Counselling and Testing (VCT) clients

19There are several private laboratories in Chennai. Most laboratories are equipped with ELISA, Western Blot and Rapid Tests for HIV. These laboratories represent an excellent opportunity for voluntary counselling and testing, although not much work is concentrated on training and skills building as avenues for preventive education, counselling and agents of change. Apprehension about absence of cure, lack of confidentiality in HIV result reporting and the prospect of stigmatization are common deterrents to the accessing of such testing services. Of the 1,232 private laboratories that YRG CARE surveyed in Chennai city, 88 % performed tests for HIV, of which 19 % spent some time (usually less than 10 minutes) on each counselling session with their clients (Solomon, S., A.K. Srikrishnan, A.K. Ganesh, & al., 2002). Approximately 65 % of the laboratories showed an interest in training their staff in HIV counselling and making appropriate referrals for care and treatment.

20At YRG CARE, the Infectious Diseases Laboratory is state-of-the-art. It is quality assured by the College of American Pathologists, (CAPS) USA. This laboratory performs most tests for HIV and related diseases and infections. With an increase in the number of patients opting for antiretroviral therapy and with the reduced costs of drugs, there is an increasing need for resistant testing, which we hope to meet shortly. With the increase in the number of positive results as a consequence of our VCT services, a need for patient care and support services has ensued. Most government and private hospitals prefer to deny patients with HIV access to treatment services and such patients commonly report that they run in vain from pillar to post, resulting in a loss of valuable finances.

  • 5 UNDP: United Nations Development Programmes.

21We did a small study for UNDP5 on the priorities of the needs of people with HIV which showed a maximum need for medicines, followed by access to health care, finances, marriage and then childcare. Learning from these results, YRG CARE developed its own integrated care programme; including an outpatient department, inpatient care ward, an intensive care unit, a counselling centre for psychosocial support, a special women’s clinic, a pediatric clinic and a consortium of consultants.

22At YRG CARE, we have more than 5,300 follow-up patients. The graph below shows a steep increase in the number of new patients accessing services for the care and management of the HIV disease, in six month intervals since 1997. The number of new HIV patients has increased from one each week in 1989-1990, to 5-6 new patients a day in 2003. Most of the infections, about 73 % of the transmission, has been recorded as sexual transmission.

Figure 3.3: Number of Newly Registered Patients over the Years (N=4,719; m = 68.5 %; f = 31.5 %)

Figure 3.3: Number of Newly Registered Patients over the Years (N=4,719; m = 68.5 %; f = 31.5 %)

About Treatment Activities: Highly Active Antiretroviral Therapy (HAART) and its Effects

23Highly Active Antiretroviral Therapy (HAART) prevents the advance of the disease. The standard of care discusses the employment of HAART using combinations of either nucleoside reverse transcriptase inhibitors with non-nucleoside reverse transcriptase inhibitors or protease inhibitors. Indications for the initiation of HAART at YRG CARE are situations of acute infection and/or if the CD4 level counts are below 350. Over a period of time, patients on HAART recover from their presenting infections, viral levels decrease and CD4 levels increase.

24The goals for therapy are the maximum and durable suppression of the viral load, the restoration and preservation of the immunological function - that is the CD4 -, and the improvement of the quality of life and reduction of HIV-related morbidity and mortality.

Figure 3.4 Number of Inpatients and Outpatients accessing YRG CARE Medical Care and Support Services per six months, 1997– 2003 (June)

Figure 3.4 Number of Inpatients and Outpatients accessing YRG CARE Medical Care and Support Services per six months, 1997– 2003 (June)

25In the West, with the onset of the HAART treatment, the death rate began to decline and the quality of life of the patient improved.

26Physicians prescribing HAART to their patients need to account for drug interactions, drug toxicities, initial problems of toleration, hypersensitivity reaction and immune reconstitution syndromes. Drug adherence is an important factor which involves commitment, motivation, nutritional intake and, most of all, finances on the part of the patient undergoing HAART. Before initiating HAART, which is a life-long treatment, YRG CARE counsels the patient on taking the drugs daily, adherence to the drugs, its effects, as well as the costs and possible side effects. Indian pharmaceutical companies have been able to overcome the patent laws and have produced antiretroviral drugs and have combined two or three drugs into one, reducing the number of pills taken by a patient at one time and thus reducing costs and improving adherence to the drugs. There are several protocols that are commonly prescribed to pregnant women who are HIV- positive to prevent the perinatal transmission of HIV. Counselling and psychosocial support are essential in assisting the woman.

27The need for assisted reproductive measures is on the rise. At YRG CARE, there have been several requests from couples and suitable referrals have been made.

  • 6 OBGYN: Obstetrician and Gynaecologist.

28On 1 April 1996, our clinical team was contacted by a young woman who was HIV-positive and pregnant. She came to the centre almost full-term. After a dozen phone calls, we finally succeeded in finding one kind OBGYN6 who agreed to conduct her delivery. On 14 April, with the first pangs of labour, we rang up the doctor to learn that she had gone off on a holiday. We were shocked. We tried to find another solution and finally, in despair, before the woman went into labour, we admitted her into a nursing home without revealing her HIV-positive status so that she could be safe to deliver her baby into the world.

29Other issues challenging us are the question of reproductive rights and the dilemmas faced by discordant couples. Many couples would like to have a child and are looking for ways and means to prevent risks and be safe and yet enable the woman to become pregnant. Prevention measures controlled by women, cost-effective treatment measures, vaccines and change agents seem to be the need of the day. YRG CARE is involved in such research and service activities to meet these emerging needs with its vision and mission.

Other Activities of YRG CARE

30YRG CARE has developed a multi-centred approach over the last ten years. Services, training, advocacy and research programmes have been evolved to meet the needs of our patients and the emerging needs of the epidemic itself. An integrated care model provides patients with access to services and facilities that empower them to cope with sensitive issues at varying levels. A list of research publications and books add to its visibility and the documentation of HIV disease management in India.

31In conclusion, there is a statement that is so true, “It is not who you are that matters, but what you do”. This is the story of the old man who walked along the beach at dawn and noticed a young woman picking up a starfish and about to fling it into the sea. Catching up with the youth, he asked her why she was doing this. The answer was that the stranded starfish would die if left in the morning sun. “But the beach goes on for miles and there are millions of starfish,” countered the old man. “How can your efforts make any difference?” (And that’s the NGO. How will a non-governmental organization make a difference?) The young woman looked at the starfish in her hand and threw it to the safety of the sea. “It makes a difference to this one,” she said. And that is exactly what YRG CARE is doing. No one who comes to the doorstep of YRG CARE is turned away. Somehow we find sources, resources and money to treat that patient.

Bibliographie

References

Aggleton, P. & K. Rivers, 1998. “Intervention for adolescents”, in Gibney et al., Preventing HIV in Developing Countries: Biomedical and Behavioural Approaches, Pleneum Press, New York.

Solomon, S., A.K. Srikrishnan, A.K. Ganesh, M. Rogers, & K.H. Mayer, 2002. “HIV VCT services in Chennai, India: Expeditor or Hurdle”. XIV, International AIDS Conference 2002, Barcelona July 7-12, 2002. Abs. Ref # 10046.

UNAIDS, 2002-a. Epidemic Update.

UNAIDS, 2002-b. Report on the global HIV/AIDS epidemic.

WHO, 2002. The World Health Report.

YRG CARE, 2003. YRG CARE at a glance, 1993-2002.

Notes

1 Cf. www.avert.org/aidsindia.htm/as on 29 August 2003.

2 Dr Suniti Solomon and her team documented the first HIV infection in India at the Madras Medical College in 1986. She set up the first HIV testing service, through an Indian Council of Medical Research Grant, at the college in 1987, formed the AIDS Resource Group in 1988 and founded YRG CARE in 1993. YRG CARE broad-based her initial work on HIV, namely testing and counselling, medical care and psychosocial support for those living with HIV.

3 APAC: USAID-funded Aids Prevention and Control Project; TNSACS: Tamil Nadu State AIDS Control Society.

4 Cf. YRG CARE, 2003.

5 UNDP: United Nations Development Programmes.

6 OBGYN: Obstetrician and Gynaecologist.

Table des illustrations

Titre Figure 3.1: Number of Clients Coming to YRG CARE for Voluntary Counseling and Testing (VCT), 1994 – 2003
URL http://books.openedition.org/ifp/docannexe/image/9145/img-1.jpg
Fichier image/jpeg, 28k
Titre Figure 3. 2: Occupation profile of YRG CARE Voluntary Counselling and Testing (VCT) clients
URL http://books.openedition.org/ifp/docannexe/image/9145/img-2.jpg
Fichier image/jpeg, 33k
Titre Figure 3.3: Number of Newly Registered Patients over the Years (N=4,719; m = 68.5 %; f = 31.5 %)
URL http://books.openedition.org/ifp/docannexe/image/9145/img-3.jpg
Fichier image/jpeg, 28k
Titre Figure 3.4 Number of Inpatients and Outpatients accessing YRG CARE Medical Care and Support Services per six months, 1997– 2003 (June)
URL http://books.openedition.org/ifp/docannexe/image/9145/img-4.jpg
Fichier image/jpeg, 40k

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