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Category Archive: HIV/AIDS

Sankalp’s Stories of Recovery: Shankar on Family & HIV Stigma

Self Care For People Living with HIV/AIDS

by Lipi Chowdhury, Newsletter November 2005

A Workshop on “SELF CARE” for PLWHA sponsored by DOH International, organized by Sankalp Rehabilitation Trust was held on 4th October, 2005 at the Mumbai Central YMCA. As the name suggests the workshop looked at the multifaceted aspects of self care especially with respect to Drug users living with HIV.

It was an all day long workshop divided in to various different sessions, each dealing with an important aspect of Self Care. To begin, since the participants were relatively unknown to each other, the workshop was started with an ice breaking introductory session which seemed to induce ease and relaxation about the workshop, which was a first time for a lot many participants.

The first session was on “ACCEPTANCE” and was taken by Eldred Tellis. Here certain stark things came to be known of, the very first thing was that ‘denial’ is a very important emotion which stems even before any other and is felt by one and all. It is an emotion that is felt by not only the addicts or the seropositive person but also the family and the social fabric around the individual. The individual instead of seeking out for help feels he can deal with whatever the problem is by himself and secludes himself due to the intrinsic ego pressure as well as the social stigma attached to their behaviour or situation. All this is coupled when there is an association of drug addiction and HIV/AIDS. The common escape routes for both family and individual are either to be put in the prison to force rehabilitation or marriage as it is seen as a social institution said to be a remedy for such issues of addiction.

Progressing from the emotion of denial, one moves on to stages of anger, cribbing and discontentment wherein the emotional release is on and even from the family. This is a crucial phase where either the persons seeks for help and GOD or sinks deeper. And Sankalp plays a major role here as it teaches or helps the person with ‘Self Acceptance”. In the workshop the difference between Acceptance and Knowing was brought about and it was emphasized more than just knowing and passive acceptance of self condition, it was more important to imbibe a deep rooted and active acceptance to look at the positive and the revocable side of life. The aspect of sharing and seeking for counseling was empathized with an example of a being able to survive out of a room filled with smoke opening a window, hence opening channels of communication during the phase of denial, sadness or fear of loss.

The second session was about “SPIRITUALITY” which was taken by Rajeev who took a 10 minute meditation exercise and highlighted the various above mentioned aspects of self and how one could cleanse oneself of lack of self control from and within with the help of Spirituality. He spoke of problems arising when there is a conflict between social and sexual instinct and that Vipassana could be incorporated in daily life as it had positive effects on self well being .It was emphasized that it is only when one lives in the past or future that anxiety begins resulting to undesirable harmful behaviour and if one learns to live in the present then anxiety can be controlled. There was a difference brought out between “I” (unseen powerful) and “me” (awareness) and one understood that harmony comes only when one consciously recognizes and separates the two. The participant’s were given an idea of the Vipassana Meditation camps and how they could benefit from these.

The third session was on “RISK REDUCTION” which was taken by Mini Tomy and Dr. Malik. Herein safe ways of fixing for self and others especially with needle care ; future prevention for relapse and peer education information was imparted. Furthermore, the concept of safe sex and STI’s were explicitly talked about with a demonstration of condom wear , usage and disposal.

The next session was taken by Dr.Shantanu who spoke about the “MEDICAL AWARENESS” dealing medical aspects related to drug addiction and HIV/AIDS. This session was based on preliminary information about substitution drugs for drug rehabilitation and ARV for HIV/AIDS. It mostly dealt with questions and queries from the participants. This helped understand the fears of the participants related to the illness , physical entropy and medicines to help bring clarity and assurance.

The fourth session was of “ROLE PLAY” which was taken by Eldred Tellis. The participants were divided into four groups each had a role to play. The questions and issues which each group had to ponder and enact were all covering the various aspects of self awareness and care. These were:

  • Enact a person who has just found out his seropositive status and does not want to tell partner or spouse and how one could counsel him/her
  • Enact a person who is ill with HIV/AIDS and has the fear of dying , so how would one support him/her
  • Enact a person who is unhappy about his being seropositive and wants to break a relationship or engagement, so how would one counsel him
  • Enact a person who needs medical care but does not have the prerequisites of being eligible to receiving them and is refused by the hospital authority, so how would one intervene and support.

The issues that came out of these role enactments are very crucial to survival, handling and dealing with HIV/AIDS. These foremost issues were of prevention and not to harm or infect others ; prepare for death and be realistic in terms of being mentally agile to one fullest and making property will etc. ; highlighting the subconscious hesitance to deal/confront and cope with the above mentioned issues along with the importance of a counselor and support group in addition to the medicines.

The final concluding session was of “LEGAL AWARENESS” taken by Shezad and Santosh from Lawyers Collective. This was a very important session as the participants have been made somewhat aware of the above aspects in the various NA and support meetings they go for, but they were seldom made aware of their legal rights. The three major issues that were brought about were Informed consent; Confidentiality and Discrimination. This session covered links of all the three issues in the realm of self, family friends, hospitals, pre –post testing, residential dwellings and work.

Overall, the workshop was a very fruitful and truly an eye opener for not only the participants but also the staff of Sankalp as it brought out a holistic picture and way to deal with Self Care from its various subtleties of Self and its psyche; Mental and Physical wellbeing with Meditation and spirituality; Risk reduction; Medical and physical health advise; Responsiveness towards self and others through the Role plays and finally legal awareness. It was a very value added two way information sharing workshop which gave an insight into the understanding and practices of the clients related to HIV/AIDS and also the baseline at which workshops or information-activities could be pitched in for future. It dealt with the aspect of Self care in a cocooning way covering each and every facet of it and in future such workshops should be conducted with not only PLWHA but also drug addicts as they could be one of the catalysts in bringing about the mammoth social change that Sankalp is striving towards.

Struggling To Find Solace: Sanjay’s Story

Taken from a 2008 Newsletter

Sanjay reached Mumbai at the age of 15. His journey to fend on his own in life began when he was just 10. He was troubled to see his father having to struggle to make a living and to meet the demands of his children so he decided to take up a job away from home.

Sanjay’s first travels took him to a village in Ambala where he found work in a village household. Later he took off to a village bordering Himachal, where someone offered him a job as a rickshaw driver. But this was not enough to ward off hunger. He thought Delhi may provide him better job opportunities but that didn’t happen. At Delhi he slipped back into the same rickshaw driving job.

And that’s when the problems started. He got mixed up with a group of boys and got pulled into ‘outline’. The group were into everything, alcohol, ganja, nitrovates and brown. But a rift took place among them which turned out costly, ending in a murder. This forced Sanjay to flee Delhi.

Mumbai offered him instant jobs with caterers. However it didn’t take much time for him to turn to drugs too. This time he graduated to injecting. About seven years ago he got to know about Sankalp through a staff who was an ex user himself. At Sankalp, he got inducted to substitution therapy and after tapering it to low level, went through the detox camp programme and was clean. At least for some time.

As part of the recovery process, he decided to undergo HIV testing, which turned out to be positive. He relapsed, but with the help of Sankalp stood up again and was staff at Sankalp for one and half years. This is when he thought that it was time he visited his folks back home.

His family welcomed him most warmly and even started marriage plans for him. He lied to them that he was already married and had a family in Mumbai. He didn’t want to disclose his health status; neither did he want to cheat his proposed wife.

He returned to Mumbai, but was not at ease. This dragged him to relapse. It continued for some time until he has once again sought Sankalp’s help and that of NA.

However he has also begun to realize that though he can count on Sankalp’s services any time, he needs to learn on how he can stand on his own. For the past three months he is back at OST, pulling on till he finds the solace that he strives for…

World AIDS Conference 2008

by Suseelkumar, November 2008

Participating the World AIDS Conference and to be part of the ‘Community Tequio’, (Community Equip), was a lifetime experience. It was the first International Conference that I attended and must admit that I was not prepared to be part of such a huge gathering of 20,000 people.

We stayed at the Best West Hotel Majestic in the heart of the Mexico City, which was one of the boundaries for the grand open space, where there were flag hoisting parades every morning paying tradition to the first parliament held for the Country until two decades back. There was the Palace, which had been turned into Parliament after the Revolution, a Cathedral and an administrative building, which are reminiscent of the 18th Century architecture in Mexico.

We were 50 delegates there, representing the 25 Award Winning NGOs / CBOs from around the world and on 1st and 2nd August were briefed on the Community Tequio and the Inaugural Ceremony that was to be held on 3rd August, where the UN Secretary General was the chief guest. The ‘Community Tequio’, Community Dialogue Space was the forum created in the Global Village to show case the stories of success and the challenges faced by these NGOs / CBOs as well as to highlight the effectiveness and pivotal role of grassroots action worldwide in the field of HIV/AIDS.

My first observation about the activities of other NGOs was that the World over the activities were mostly community driven, where as in our country it is still through NGO based programmes. I felt that the major issues dealt or faced in African and Latin American areas are stigma and discrimination in the care and social integration. In that sense we, in India, is yet to give prominence beyond awareness activities and struck with nuances in the delivery of ART and segregating the high risks behaviours into communities of so and so, furthering endangering them to social labeling.

The world over, the movement is looking into the minute aspects of adverse effects on society, as a result of affliction, such as access to medicine and treatment, human rights, psycho social health, services to children orphaned by AIDS, vulnerability of other family members and advocacy instigating changes in policies and legislature for child custody, asset & property inheritance and prevention of trafficking.

We were also made aware the efforts for empowerment of women, involving women more in traditional councils, generation of community funding, change of attitude among Police, Administration and Judiciary, special programmes for the deaf and blind communities, alliances with faith based organizations, religious and opinion leaders to bring in an enabling environment for the society to respond to the situation.

Another pleasing aspect of the Conference was the presence of transgender and other sexual minorities vocalizing their existence and their involvement in HIV prevention, working for the care and support of people living with HIV/AIDS and the concerns they felt as barriers in the effort.

Daily deliberations at the Community Tequio celebrated success, shared knowledge, priorities and concerns. There were opportunities to enter into dialogue with donor agencies, global leaders and government officials on how to partner with and support locally driven community efforts on HIV.

The Conference was hosted outside the Global Village, there were presentations and discussions held simultaneously on various topics. The exhibitions and stalls were marked by materials and publications on various research studies and interventions, accompanied by pavilions set up by the multi national pharma companies propagating treatment and advanced monitoring facilities available currently.

Magistrates’ Workshop on Civil Rights

Taken from the November 2007 Newsletter

Lawyers Collective HIV/AIDS Unit has been committed to provide legal services to persons affected and infected with HIV/AIDS. The Unit has also made efforts to extend its legal services through Civil Rights Initiative (CRI) to drug users, sex workers, male who have sex with male and other communities vulnerable to HIV/AIDS. However, statutory laws like the Immoral Traffic (Prevention) Act, 1956(ITPA), Narcotics Drugs and Psychotropic Substances Act, 1985(NDPS), Section 377 of the Indian Penal Code (IPC), criminalise the activities of these vulnerable communities, therebymaking them more vulnerable to HIV/AIDS.

One initiative undertaken by CRI is at the Arthur Road Jail Mumbai, in association with the Sankalp Rehabilitation Trust. They provide legal services to drug users who are undergoing the rehabilitation program with Sankalp. Our experiences at Arthur Road Jail have shown that there is a vicious circle of vulnerability to HIV and arrests. Most of the persons picked up by the police are very poor and are booked under petty offences like theft, consumption of drugs, triable by the Magistrate’s Court and have no money to avail of bail, thereby they either plead guilty or languish in jail for months on end.

In our legal system, Magistrates are instrumental in not only providing justice, but also in assuring that the poor and those vulnerable have access to legal aid and are given bail or released on personal bond, thereby breaking the vicious circle of vulnerability and arrests. The need to sensitise and create awareness amongst Magistrates about socio-legal and ethical issues faced by communities vulnerable to HIV and how their situation is worsened by the criminal procedure and the criminalization of their lives was the reason for holding a workshop for Magistrates.

Eldred Tellis presented the problems faced by drug using clients of Sankalp and this was corroborated by the testimony of one of the clients. It was a real eye-opener for the magistrates who pledged to be more sensitive to such clients.

Neglect of Hep C Brings HIV Vulnerabillity

Excerpt from an article by Bobby Ramakant, for AHRN, November 2007

In communities where sharing of injection equipment drives the HIV epidemic, a parallel epidemic often lurks quietly in the shadows. Greater awareness about Hepatitis C, more investment of resources, cheaper diagnostic and treatment services, and improved hepatitis-related treatment literacy, are all urgently needed by individuals co-infected with the Hepatitis C virus and HIV.

Hepatitis C is a blood-borne, infectious, viral disease that is caused by the Hepatitis C virus (HCV). The infection can cause liver inflammation that is often asymptomatic, but chronic hepatitis can lead to cirrhosis and liver cancer. HCV transmission occurs when traces of blood from an infected person enter the body of a HCV-negative person. Like HIV, HCV is spread through sharing injection equipment, through needle stick or other sharps injuries, or less frequently from infected mothers to their babies.

HCV transmission rates are higher than that of HIV, and the condition is often more severe in drug users. People who share injection equipment are vulnerable to HCV and HIV infection, and in many places co-infection is very common. Up to 80% of individuals with HCV usually develop no symptoms. Initial symptoms, when they appear, can include jaundice, fatigue, dark urine, abdominal pain, loss of appetite and nausea.

There are 3 types of tests for HCV, all using polymerase chain reaction (PCR) technology:

  1. HCV PCR viral detection test is designed to detect the hepatitis C virus.
  2. HCV PCR viral load test estimates the level of HCV in the blood. It helps to monitor the effectiveness of treatment.
  3. HCV PCR genotype test determines the specific genotype (genetic ‘make-up’) and subtype of HCV. This information is important in selecting a course of treatment. For example, treatment with interferon is more often effective for people with HCV genotype 2 or 3.

The cost of these PCR tests is prohibitive, close to US$100 for the tests. People co-infected with HCV and HIV also need to monitor indicators of HIV progression, such as their CD4 count. If the CD4 count falls below 200, then HCV treatment is less effective, and its side-effects may be more pronounced. Individuals with HIV who are taking antiretroviral (ARV) drugs should consult their doctors to find out if they need to change their ARV combination before starting HCV treatment. Another challenge is the limited availability of PCR tests. In India for example, the test is available in only one city (Mumbai), although blood samples are collected from other parts of the country and sent there for diagnosis. The results can take more than a month to be returned. We clearly need more HCV diagnostic facilities, particularly in areas with high levels of injection drug use.

HCV can often be treated successfully, including among people living with HIV, but the treatment is not easy to endure. Treatment for HCV uses a single drug, or a combination of two drugs, and usually takes between six and twelve months. There is no standardized treatment protocol and clinical practice varies considerably between individual doctors. This can add to uncertainty and confusion among patients.

The treatment for HCV is also very expensive – costing an average of US$250 per week. Interferon injections are given weekly, in addition to Ribavirin tablets. The tablets may be provided free for people paying for interferon injections. On purchasing four interferon injections, one extra is often provided free as a ‘discount’. But in countries such as India, people have to bargain with representatives of pharmaceutical companies or doctors. A cheaper alternative is to use interferon injections alone, although this is reported to be less effective. High-profile donor agencies including the Clinton Foundation and the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM) are yet to dedicate resources to providing treatment for HCV.

Another dispute among clinicians surrounds the diagnostic value of a liver biopsy. In well-resourced countries, a liver biopsy is usually performed to determine the extent of hepatitis-related liver damage, whereas in Asian countries such as India, China, Vietnam, and Thailand, doctors usually avoid this procedure. Consensus is needed around the diagnostic utility of liver biopsy, if nothing else in order to eliminate additional confusion for patients.

There is no vaccine to prevent HCV infection and even after successful completion of treatment, HCV re-infection can occur. During and after treatment, HCV PCR viral load testing is done at six month intervals to monitor HCV control. Individuals with HCV considering treatment should connect with those who have previously been through it. The initial days of the regime can be very frustrating and challenging, including loss-of-appetite and flu-like symptoms – it helps to talk to those who have completed the regimen before. Even after successful completion of HCV treatment, it is vital to keep the HCV viral load low. Drug and alcohol use should be avoided in order to protect liver functions. Also individuals with HCV need to take care of their livers by avoiding spicy or fatty foods. For people co-infected with HCV and HIV, self-management and treatment literacy skills may be all the more crucial.