Stanzin Dolma was born on 2 February 1982 at village Stok. She is the first HIV/AIDS Counsellor of Ladakh.  She did her graduation from Jammu University and started working on a project on a micro-planning programme of Tata Institute of Social Science and some other NGO’s like Ladakh Development Organisation (LDO). Stanzin has been a volunteer and resource person for various Self Help Groups and NGO’s on reproductive health for women and adolescent girls. She is working as a Counsellor at Integrated Counselling and Testing Centre (ICTC) at SNM Hospital Leh. Presently she is pursuing a diploma in HIV/AIDS and Family Education.

Q. Tell us about your childhood life.

I was born in the village Stok in a poor family and my father was the only bread earner in our home and we are three sisters. I was a very hard working child since my school days and from the very beginning my mother has always encouraged me for my studies and wanted me to achieve something and be independent. Up to class 10th, I studied in Govt School Stok and for my higher secondary studies, I went to Central Institute of Buddhist Studies, Choglamsar just for the sake of getting a scholarship so that I would be able to continue with my studies.

Q. In which subject you did your Bachelors and Masters Degree and what did you do after that?

After 12th I decided to get married so that my younger sisters could continue with their further education. Did my graduation from Jammu University and continued my studies even after my marriage and it was a huge challenge for me to compete with other students who had studied in English medium schools. After Graduation, I started working on a project on a micro-planning programme of Tata Institute of Social Science and some other NGO’s like Ladakh Development Organisation (LDO). In 2008, I was appointed for the post of Counsellor. Since then I have been a volunteer and resource person for various Self Help Groups and NGO’s on reproductive health for women and adolescent girls. Currently, I am working as a Counsellor at Integrated Counselling and Testing Centre (ICTC).

Q. What is ICTC and how it functions?

Earlier Ladakh was considered as an HIV/AIDS-free zone. However, within few years many cases of HIV/AIDS have been registered in Leh and due to this J&K State AIDS Control Society set up the ICTC at SNM Hospital Leh in the year 2008. ICTC Centre provides HIV testing and counseling and helps in diagnosing and preventing HIV/AIDS and other STIs, through life skills.

It is an integration of various programmes like PPTCT (Prevention of Parents to Child Transmission), referral of the patient to ART (Antiretroviral Therapy), VCTC (Voluntary Counselling and Testing Centre). The combined integrated programme of these is called as ICTC.  Under ICTC, the identity of the patient remains 100% confidential, conducts free HIV diagnostic tests and medicine, provides basic information on the modes of HIV transmission, link people with other HIV prevention, care and treatment services.

Q. How many cases of HIV/AIDS have been registered so far?

 We have registered 36 cases of HIV positive persons in Leh and that was diagnosed at ICTC Leh. This includes 21 locals and rest are army personnel and labours. The disease is often accompanied by social stigma and due to this the people prefer staying outside Leh. The confidentiality is confirmed and the patient gets the medicine easily. The ICTC has been upgraded as LAC (Link Anti retroviral Therapy Centre). Once the patient is diagnosed he is referred to Srinagar for further examination. The medicine shows some side effects that is why the patient is given medicine for six months and after every six months the patient is again tested for CD4 count and see the improvements.

Q. What do you think is the main reason for spreading of this disease?

Many people believe that since Ladakh is a tourist destination, the infection risk is quite high. But there isn’t a single foreigner infected with HIV/AIDS in my list. But if we allow each and everyone to visit Ladakh then there is a 100% chance of infection. In fact, I have seen some foreigners who are HIV infected and who openly accept it. At least, they use the contraceptive when in physical contact. On the other hand, Ladakhis have no knowledge of contraceptive use. The moment we talk about contraceptive, people take it in a negative sense and society is such that people don’t disclose if someone in a family gets infected. The reason is the stigma attached to it. I have encountered a case in which 9 people have got infected from 1 HIV infected person. We have religious heads who advises us to protect ourselves from such diseases and I appreciate those who follow their words. If not, there is a need for spreading awareness and educate about contraceptive use through open demonstration and counselling.

Q. Do you see a similar cause of this disease among the patients?    

Most of the cases are sexually transmitted and vertically transmitted (infected mother to child). Also, there are some old aged HIV infected people about whom I am not sure as of how they got infected. We found no history of blood received by them. So, the reason could be blood contact.  I have in my list two vertically transmitted cases. In one case, the mother had to terminate the baby in her womb because the mother was HIV infected and her CD4 count was only 52 at that stage. In such cases, a mother can’t give birth to a baby. In the second case, we were able to protect the baby. The baby is not infected though both mother and father are HIV infected. They did the Anti-Natal Check-up (ANC) on time. There is another 11 and 5-year-old infected with HIV. In Ladakh, the main challenge is that I have come across many cases of Hepatitis B and HIV co-infected.

Q. What steps should be taken at the individual as well as at the administrative level?

To make ourselves aware about the disease is very important only then we can protect ourselves from it. ‘Know AIDS for No AIDS’. At an administrative level, people must be educated about the disease by visiting every village. There are so many cases of Hepatitis B then how it could be possible that there is no HIV infected person as the mode of transmissions are same.

Q. How to prevent and treat once a person is diagnosed with HIV?

First, we give proper counselling to the patients. We suggest them to take a balanced diet, to take proper nutrition, maintain personal hygiene. More you keep yourself hygienic and healthy, less you need to take drugs. Earlier we used to give medicines to the patient whose CD4 count level reached 200 but now it starts with 350. The main reason for giving Anti- Retroviral Therapy is to control opportunistic infection and to keep the immune system strong. There is no means to cure the patient except for prolonging his/her life.

Q. What role can parents play in educating their child about adolescence period?

We are 2-3 volunteers running a group called ‘Women for Women Health.’ We attended training at RDY office which was organised by some foreigners. We also used to organize awareness programmes for women and children. In schools, we did lots of awareness programmes about an adolescent stage. Physical and behavioural changes are natural during the adolescent period. This leads to make the child behave in a certain manner. So, friendly atmosphere and open discussion in a family is necessary to make the child aware of such feelings and ways to tackle them.

Q.  Tell us about the journey as a Counsellor of ICTC? What challenges did you face till today?

Being the first counsellor from Leh, I had to face a lot of trouble and hardship at the beginning as I was myself not much aware of my role as a counsellor. During the initial stages, we faced lots of problems such as infrastructure, equipment, furniture etc. I also faced difficulty in making the local people understand the importance of HIV testing and counselling. In the beginning, I approached the Chief Medical Officer and Medical Superintendent and requested them to provide certain equipment and amenities. Over time, I approached DD Leh and AIR Leh to build awareness on this disease.
From the health department, I got a very positive response and compared to other areas the ICTC Leh is much better. The ICTC is now upgraded as LAC and as per norms, LAC can be functional only if more than 70 patients but as Leh remains cut off from other parts that is why it is upgraded as LAC even with 36 patients.

Q. How volunteer testing is important for the people of Ladakh?

Volunteer testing is very important as we cannot force anybody for the test. It is essential that people get proper counselling and disease is diagnosed on time for which everybody needs to come forward at the individual level to make Ladakh HIV free zone. Even if the parents are positive the child can be protected if diagnosed on time. If the person is positive he is given full knowledge about the disease and encouraged to live a healthy and happy life.

Message to the readers

I would tell everyone to spread awareness about this disease. Parents must focus and talk friendly with their children be it, girl or boy. Being the receiver, girls have 30% more chances of getting the infection, yet I have seen more cases in boys. The schools must also provide workshops and training regarding this disease. People must take a balanced diet and encourage living a hygienic lifestyle and inculcating that in their children. Most importantly Stigma should not be attached to this disease.