14 December 2018

A set of stories collected by the CSEM from civil society organizations all over the world to mark the first UN UHC Day and to demonstrate civil society commitment to work towards achieving UHC

Children living with HIV are being left behind 

This partner perspective comes from the Civil Society Engagement Mechanism. We're delighted to introduce a set of stories collected by the CSEM to show perspectives from civil society actors and civil society organizations all over the world to mark the first UN UHC Day and to demonstrate civil society commitment to work towards achieving UHC.

CSEM and partners seek to promote representativeness and equity on the road to UHC.  The views expressed, however, belong solely to each blog author. 

By Centre for Supporting Community Development Initiatives, Vietnam

“I have experienced the stigma since I was very young, at about 4 or 5 years old but I didn’t know why for sure. People prohibited their kids to play with me because my parents were drug users.” – said Ngoc, a teenage girl living in a northern province in Vietnam. She looks more mature than her age. Ngoc has found out about her status participating in a study on HIV situation among young drug users in 2015 when she was fourteen.

“When I first enrolled to treatment, I got services in pediatric department where I felt comfortable. Doctors are very nice, they asked about my problems and concerns, and gave me clear instructions. They even gave me phone number so I can call in emergency cases.”

But when Ngoc turns 16, her treatement is subject to move from pediatric department to general system same as for adult patients, things got change in a tough way. “I wasn’t too shocked finding out that I am HIV positive. But I got really shocked transitioning to clinic for adults, where I receive little support and care. No one has ever asked me if I had any side effect with the ARV drugs and other things. The whole process of health checking, prescribing and me collecting medicine takes only five minutes.” said Ngoc.

“I feel broken hearing words like: “She looks too young to have HIV. Wondering what (bad) has she done?” whenever I go to the ART clinic which locates inside residential area.”, she added.

Ngoc got demotivated by being stigmatized by the society and neglected by the health providers. She was not mentally prepared and supported for a lifelong and difficult treatment. And by then, she didn’t know the importance of treatment adherence, so there was time she quit taking ARV for up to 6 months. The consequence is that Ngoc now partially loses her vision, and she can hardly walk wihout assistance.

Since the beginning of 2019, the ARV treatment in Vietnam will be totally covered by social health insurance as international funding for ARV is rapidly withdrawn out of the country. HIV patients are facing with a lot of challenges: new healthcare providers and new hospital health and payment procedures, which is not yet friendly and supportive enough for HIV patients. And in terms of financial worries, HIV patients have to buy health insurance cards and to copay their ARV drugs and HIV testing because the health insurance only cover maximum 80%. These are such crucial changes that every person living with HIV should know, but many young people like Ngoc haven’t got information about – they are being left behind not only in the HIV fight but also in the whole healthcare agenda.

When being asked about what Ngoc hopes for the future, she said: “I just think, if I receive decent support to continue and adhere to ARV treatment, my viral load will be undetectable. And there is no more reason for stigma and discrimination.”

*Character’s name and information has been changed for safety and identity confidentiality.


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