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Making ART work in our communities

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HealthWiki > Helping Children Live with HIV > Chapter 11: ART: Medicines for HIV > Making ART work in our communities

Treatment guidelines now say that everyone, especially children and women who are pregnant, should start ART as soon as they know they have HIV, not wait until until they are ill. More than 20 million people with HIV are now on ART. But at least 15 million more people with HIV still need it, including half of the children who have HIV. Many health workers are not yet experienced or comfortable providing ART. Health services are often understaffed, or do not exist, in places where HIV treatment is needed.

many people thinking and talking at a healthe center.
How many pills did you miss this month?
I wish I had time to explain why this is important!
They have no idea how hard it is!
We will be working until long after dark.

In many places, people with HIV have organized to help each other gain access to ART and take it successfully. They learn about and teach each other how ART works, what makes it not work, and what other health care or self-care will help them stay healthy (this is sometimes called “treatment literacy”). These groups also advocate for wider treatment access, better medicines, and cheaper prices for medicines, as well as ending the stigma of HIV.

a children and art class.
a woman speaking
I used to think these demanding people with their HIV-positive T-shirts were so annoying! Now I cannot imagine life in the clinic without them. They brought the community to us, and now the community helps us. They trained our clinic committee and this support group. Treatment literacy has helped all of us.

Treatment support groups can work successfully with health workers if everyone respects the knowledge, abilities, and experience that different groups bring. Sometimes this is difficult for health workers, who are used to being the experts. For their part, community members who want better HIV services need to respect the difficulties health workers face, whether from overwork, lack of training, or lack of government support.

A community health committee working to expand and strengthen ART services for families can try to find ways to:

a group of women talking.
I want to take the clinic’s ART training. We know best how to help the families out here, and my friend Ines says ART is not difficult to manage. Do any of you want to take the training with me?
  • train health workers new to ART, and people with HIV, in treatment literacy, including how HIV and ART are different for children.
  • organize support groups at the clinic for anyone on ART, for pregnant women taking ART, for caregivers giving ART to children, or for older children on ART.
  • provide counseling or support that health workers do not have time to provide during clinic visits, such as help disclosing HIV status, how to remember to take ART, or how to breastfeed.
  • train community members for suitable health worker positions, such as pharmacy assistants, ART advisers, or HIV testing counselors.
  • advocate with the government for more reliable supplies of HIV medicines, dispensing of medicines closer to where people live, and more funding for health facilities and health workers.

For more ideas about how to help communities and health care systems best support ART treatment for the most people, see Other Resources.

Record of how the ART makes your child feel

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HIV Ch11 Page 208-1.png

This page was updated:27 Nov 2019