Apr 5, 2019

Improving treatment adherence among HIV+ community

Maya and her daughter visiting our Centre
Maya and her daughter visiting our Centre

Dear friend,

We are happy to connect with you once again and bring you updates from the field. Our goal is to bring everyone tested HIV positive to the ambit of treatment and care. To do so, we cannot overlook many other cross-cutting issues such as gender disparity, mental health, social stigma, loss of livelihood, access to information, education and nutrition etc. These issues are addressed from case to case so that the HIV treatment is not only successful but we are able to improve the overall quality of life for individuals living with HIV.

Following up for initiation of ART

‘Test and Treat’ is the ambitious policy of the government of India wherein all tested HIV+ should initiate treatment as soon as they are registered. However, during the reporting period, 55,298 people were yet to start the treatment. This is mainly because either they are not ready for the treatment or they drop out before the initiation of ART. Our Care and Support Centre took up this challenge of following up with each person. As a result, 15,298 tested positive were initiated on ART, the treatment for HIV.

3-month special sustenance initiative:

It became evident from the data that nearly 33% of patients become lost to follow up the case within three months of treatment initiation. Some of them get mild side effects or they feel they are at the peak of their health which is why they stop the treatment. Realizing this, a provision is made under our programme to follow such patients closely for initial three months to address any inhibition on treatment, to support them in coping with the side effects and enabling them to take precautionary measures to avoid such side effects in future. The family members or the person who can support the patient to stay in treatment will be sensitized too. During the reporting period, 70,543 patients started on ART and our centres across the states provided the three-month services to 33,447 patients.

Bringing back Ashok in active treatment

Ashok, aged 28, lives in Cuttack district in Orissa and works with a private company. Three years ago he was detected HIV seropositive. After the detection, he had done a CD4 test, however, thereafter he didn’t visit the ART centre for the treatment. His name came up in the ‘Yet to be put on ART” list and our Care and Support Centre staff tried to reach him over the phone. Despite agreeing to visit ART, he never did.  After continued follow up over the phone and numerous house visits, at last, our staff members were able to put him on ART treatment.

He also received psycho-social support that helped him cope with stress, depression, and worries that he was facing at the time. Now he is active on treatment and continues to hold a regular job. His parents are very happy to see the positive change in him and expressed gratitude for our intervention.

Out of 1260472 PLHIV registered with our Programme:

  • 85,306 received differentiated care and support services
  • 16,068  ART LFU/Missed PLHIV were re-linked to ART services for treatment in this period
  • 6,560 PLHIV linked with social protection schemes and Entitlements
  • 2,165 Family members and partners of PLHIV were tested for HIV
  • 4,52,058 PLHIV screened for TB
  • 172 Pregnant Women identified at the Program linked with Prevention of Parent-To-Child Transmission Programme.
Families celebrating Holi festival
Families celebrating Holi festival
Jan 10, 2019

Secrecy around HIV claims lives

Due to stigma she wishes to not disclose identity
Due to stigma she wishes to not disclose identity

We are thankful for your continuous support. Recently, I had a chance to meet Jeena (name changed). I was so touched to hear her story. These events in her life are fairly recent and I could see that her emotions were still raw. Nevertheless, she had determination in her voice and spark in her eyes that only a few in her circumstance would possess. 

Jeena lost her first husband to tuberculosis and HIV. The reason for his prolonged illness and eventual death was always a hush-hush matter in the family so Jeena had no clue about it. Ignorant of HIV, her in-laws decided to marry her off with their younger son.

After about five years into her second marriage, Jeena started to fall sick. She tested positive for HIV and her parents supported her for treatment. They told her to keep it a secret fearing discrimination. Eventually, her second husband also became unwell. She requested him to go for HIV test but he refused. The family tried every other treatment to no avail. Eventually, he too succumbed to HIV.

Jeena had a strong will to defeat HIV and live for the sake of her three children. She started working as an Outreach Worker with an NGO where she was trained first. It was here that all her questions about HIV were answered.

Thankfully, all her children have tested HIV negative. “Even today, when I come home from work, my in-laws hurl abuses at me and tell me that I am a witch who ate her husbands”.

Secrecy around HIV has left Jeena as a struggling single mother and her children fatherless. The social, cultural and economic challenges multiply the burden for HIV+ women. Jeena is becoming stronger each day while helping others like her.

Thank you for standing in support and solidarity with individuals who are not only fighting HIV but also shame and stigma attached to it. 

Let's continue to save lives in the year 2019 and support many more like Jeena to take charge of their lives and live happy, healthy and stigma-free. 

Thank you!

Tara Rana 

Nov 2, 2018

One HIV+ family at a time!

Radhakrishnan's house ravaged by Kerala floods
Radhakrishnan's house ravaged by Kerala floods

Dear Supporter, 

The unexpected floods that ravaged a large part of Kerala have disrupted the lives of people across the state. 

Under the guidance of National AIDS Control Organisation (NACO), Kerala State AIDS Control Society (KSACS) and ART centres, our Care and Support Centres (CSCs) and District Level Network of people living with HIV (DLN) continue to do a tremendous job in of the support to affected People Living with HIV (PLHIV) by ensuring urgent medical requirements and counselling support.

There have been problems in locating PLHIV stranded in waterlogged areas. Ensuring uninterrupted supply of ART drugs during such situations was a great concern as we had to maintain privacy even at a time like this. Great efforts were made in addressing this issue. CSC staff contacted every PLHIV in the flood-hit area and delivered enough supply of medicines. Alternate arrangements were made for the affected people to collect medicines from nearby ART/LACs that are accessible at present. KSACS has issued a circular to all the delivery points including those in the nearby states to provide medicines to meet requirements for every needy PLHIV.

Although severely affected by the floods, the PLHIV community in Kerala have overcome this calamity. Now efforts are in full swing for smooth rehabilitation and reconstruction. As people of Kerala stand together to overcome the traumatic situation with support from around the globe, the road to recovery and reconstruction may not be that difficult.

Radhakrishnan who lives with his aged mother and two children in Pudanoor region in Kerala was one among them. He is HIV+ and gets his treatment from our Care and Support Centre in Palakkad city. He works as a salesman in a petrol pump and hardly earns enough to sustain himself. The heavy rain ruined all that he had, including his house. He is now staying in a camp in Palakkad and has nowhere to go with his family. Palakkad CSC is offering him support till he can support himself and his family. He was provided with a life support kit consisting of groceries, clothing and all basic utilities. With the support of kind-hearted people and we could support many individuals like Radhakrishnan. 

 Finding a home for an HIV orphan and HIV+ young Swati

Gangumai, a helpless grandmother from the small hilly village of Raigad district in Maharashtra requested for our support for the admission of her granddaughter to an orphanage.  Her granddaughter Swati, a 12-year-old girl living with HIV, has been part of our Care and Support Centre for the past two years. After facing stigma and discrimination from her paternal relatives she was packed off to her grandmother, Gangumai. 

Gangumai is a domestic worker in her village. She faced a lot of challenging in raising her granddaughter with her meagre income.  In January, 2018, Gangumai, with the support of the senior medical officer of the ART centre in Alibaug, Dr Nalanda, approached us for help. The Raigad Child Welfare Committee (CWC) then transferred the child to Thane district CWC for their support as none of the centres was equipped in handling children living with HIV. Unfortunately, even Thane District forwarded the case to CWC in Palghar district for help. Finally, the Palghar CWC issued the order for getting her admitted in Inigo Ekjaa Aruthi Children’s Medical Institute, Vasai in Palghar district. Our field team tirelessly worked from February 2018 and on 16th August 2018 Swati was admitted in the institute at Vasai successfully where her needs for health care and education will be taken care. 

Her grandmother is now relieved knowing that her granddaughter now has a chance at a better future, a future she could not have given her. 

Out of 12,95,452 PLHIV registered with our Programme:

1,20,455 received differentiated care and support services.    
14,141 ART LFU/Missed PLHIV were re-linked to ART services for treatment.
13,545 PLHIV linked with social protection schemes and entitlements.
2,745 Family members and partners of PLHIV were tested for HIV.
65,707 Persons Living with HIV (PLHIV) screened for TB.
222 pregnant women identified at the programme linked with Prevention of Parent-To-Child Transmission  Programme. 

Life support kit distribution
Life support kit distribution
Finally, HIV+ Swati finds a home
Finally, HIV+ Swati finds a home
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