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HIV Patient Shares Her Story of Hope and Determination to Survive

by Shobha Shukla, Citizen News Service (CNS)

According to a joint UN report entitled "HIV prevention, treatment and care in prisons and other closed settings: a comprehensive package of interventions," at least 30 million men, women and children globally go through prison systems each year, and the prevalence of HIV, STIs, hepatitis B and C and TB is two to twenty times - even up to fifty times - higher in prison population than in general population. The proportion of people who use and inject drugs in prisons can reach half the incarcerated population, especially among women in closed settings. Access to health services is largely absent.

Well here is the empowering story of Esther from Indonesia (who has been a prisoner, an injecting drug user, a sex worker, and a person living with HIV) as told to Citizen News Service (CNS) during the just concluded 20th International AIDS Conference (AIDS 2014) in Melbourne:

Esther's Story

"I come from a devout Christian family of Indonesia but fell into bad ways. I was a sex worker, an injecting drug user, a divorcee and diagnosed HIV positive way back in 1998. In 2004 I was jailed as I was caught injecting drugs, which is illegal in Indonesia. The prison life made me worse. First I was kept in a general prison for 1 month but was then transferred to another prison where the females were kept on 1st floor and males on 3rd floor. I was happy in the jail because there I could use the drugs more safely than outside. I used to bribe the prison staff and they allowed me to inject the drugs freely without any problem. The prison was like a paradise especially for female prisoners at that time. (But now they have become stricter and we cannot take drugs freely in prisons. So it is no longer easy as before).

In the prison I make friends with drug dealers. These drug bosses are always on the lookout for young and beautiful people like me. And I was also interested as I thought it would be good for me to graduate from a drug user to a drug supplier. The prison gave me the so called opportunity to be in direct contact with the boss and I was thrilled. I started my business from inside the jail by contacting my friend on phone. She got the stuff by courier through the jailed drug dealer who had become my friend. I was in jail for 11 months, but it seemed just like one day, as I was very happy there. I could use drugs there more safely than before and also earned money by doing business of drugs.

Once out of the jail, I became a small drug agent myself and ran the shots on the ground and could decide the price at which to sell the drugs - more the quantity the buyer bought, less was the price I took. I knew how to manipulate between volume of sale and cost. This way I became a boss in my area and made a lot of money. But my euphoria was short lived. After just 7 months I was again put in prison because of my drug dealing. This time I was sentenced for 8 years in a very strict jail in Tangerang. I could no longer bribe the jail staff. Moreover I had no money, no power and I was not even allowed to contact my friends by phone. I was very scared. I knew that if I did anything naughty here I would be in problem and might also be sentenced to death. So one fine day I just decided to turn over a new leaf. I said to myself - I have only two choices - to become worse or make myself better. I chose the latter.

I turned to a good life. I obeyed the prison staff and soon gained their trust and goodwill. I started going to the prison church regularly and helped the PLHIV community in the prison. I even tried to learn sewing under the prison's life skills development programme. But this was too boring for me and I quit after two months, which felt like two years to me. Then I tried my hands at bonsai and really liked this art of making miniature trees. I improved my skills and my creations fetched a good price and this spurred me on to do better. Through my bonsais I became acquainted with a famous political prisoner who helped me a lot.

I completely stopped using drugs and decided not to do sex work any more. I also started on anti retro viral therapy (ART) in the prison as my CD4 count fell to 50. I had never been on ART before, as I did not want to heed the doctor's advice. I told the doctor - if I am dead today it is all right as I do not care. Now I think that God saved me for all these years because He had some other purpose in life for me. I was now happy making bonsais and going to the church.

We had a PLHIV community in the prison. We were 460 inmates, out of which more than 45 (10%) were PLHIV and another 11 women had TB and 20 had Hepatitis C. There was an NGO, which gave us support told the prison authorities to keep TB and Hepatitis patients separate from the rest. The prison officials agreed and gave separate rooms to these patients. We never had any stigma for them and we cared for them but they practiced infection control so as not to spread the disease. In this prison there was very good treatment provision for treatment and care for all these 3 diseases - TB, HIV and Hepatitis C. But this is not so in other prisons as I found out later.

As I was a good prisoner the government released me after 5 years and I was freed in 2010.

When I was freed from jail I went to my hometown and lived close to my parent's house and supported them. My mother died two years ago after battling with cancer for 10 years. As long as she was alive I supported her. Even when I was in prison I would call her and tell her that I loved her and needed her. She died a happy woman as she saw me change my wayward ways. She said: Esther is leading a good life so I am happy and I do not want anything else.

Now I am marketing manager in a company and my employers are very pleased with my hard work. But I also work for the PLHIV community of my town. I campaign for condom use, but condom propagation is very difficult in the Muslim community as they think that condom use is un-Islamic. But we continue with our advocacy and I believe that one day they will accept it. Christians accept condom use. The church in Indonesia does not have specific programmes for PLHIV in the Christian community. I am advocating with them that it is very important for church officials to take a stand on this important health issue.

There was no stigma and discrimination in the prisons where I stayed as more than 70% of the prison staff had been trained to deal with PLHIV and TB. But in the general population there is still a lot of stigma against these diseases.

In some prisons (like the one where I was jailed) where the Global Fund programmes are running, there are very good facilities for HIV counseling and testing and giving ART, information about STIs (this is very useful for female prisoners as most of them have no knowledge about it), TB testing and treatment, methadone therapy and education about clean syringes available. For pregnant women there is PPTCT programme.

But most prisons in Indonesia do not have such good health facilities. There is high-risk sexual behavior, drug use, tattooing, limited women reproductive health care, and limited treatment of HIV and TB. Prisoners who are educated and have money are able to access TB treatment from outside the prison but those who are uneducated and poor have no access to TB treatment.

So I am motivated to work for better health facilities for prisoners in Indonesia and am advocating that all prisons get good facilities. When people leave the jail, they do not have any job to support them, so they are in and out of prison. Their rehabilitation is also necessary by providing them with jobs and skills.

Another important point is that drug users and drug dealers should be kept separated from each other in prisons. It was only inside the jail that I turned from a drug user to a drug supplier as I made friends with the drug boss there. It is important for our country to take a decision on this.

I am in contact with my friends in prison through phone, as the prison staff trusts me and allows me to speak to them. More than 50% of my friends there are still inside the jail. I keep on motivating them to leave drugs. I tell them it is your choice - if you want to get worse, it is okay but if you want a good future then please stop this and do something better. Positive thinking is important.

I am HIV positive; I have been a sex worker; a drug user for 14 years and a prisoner. Everything about me had been negative. So my family and friends had lost hope and given up on me. But now I am in a position to help others in need. It was the strict prison rules that actually changed the trajectory of my life. I have the motivation now to help make things better in other people's lives and not make them worse. Drug use in youngsters in Indonesia has decreased now as compared to the past because of strict laws now.

It was my peer support only who introduced me to his friend in UNODC (United Nations Office on Drugs and Crime) in Jakarta. It was they who brought me here to this conference. If one has the determination then nothing is impossible. If I could do it, anyone can."

Shobha Shukla is the Managing Editor of Citizen News Service - CNS. She is reporting from the XX International AIDS Conference (AIDS 2014) with support from the World Health Organization (WHO) Global Tuberculosis Programme. She is a J2J Fellow of National Press Foundation (NPF) USA and received her editing training in Singapore. She has earlier worked with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent. She also co-authored and edited publications on gender justice, childhood TB, childhood pneumonia, Hepatitis C Virus and HIV, and MDR-TB. Email: shobha@citizen-news.org, website: www.citizen-news.org

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