In the roaring economy that is China, a generation of HIV-afflicted are being left out in the cold.

The story of Xiao Lu

During the summer of 2008, I travelled around China meeting with HIV-positive children. Xiao Liu, a 13-year-old in a Beijing hospital, was one of the last I met. In his hospital room, Xiao Liu handed me a notebook.

Inside was this picture, accompanied by a description of what he envisioned as a happy day:

Inside a house, there are some children playing. Some are watching TV, some are skipping, and some are catching little bugs. Some are sleeping, some are making food, and some are bathing…Their lives are wonderful.

 

 

When Xiao Liu passed me the drawing, he was lying down, too weak to sit up without assistance. His fingers were dark and worn, and his skin pulled across his bones. His father showed me a scar running down Xiao Liu's leg, tracing the path where boiling water scarred his skin when he was two. His father rushed him to a government-run hospital seeking assistance with the burns, and Xiao Liu left with HIV from a bad blood transfusion.

When Xiao Lu visited Beijing in the summer of 2008 to receive treatment, I took him to see the sites of the upcoming Olympics. Xiao Liu wanted to show his friends back home pictures of him by the famed Bird's Nest, yet the taxi ride tired him out so much that he couldn't make it into the Olympic Village. In Tiananmen Square, the children pointed and people snapped shots of his stretched skin, swollen belly, and impossibly thin arms and legs.

On January 2nd, 2009, Xiao Liu died of heart failure. His family had done everything they could to pay for treatment, but while the government provides free antiretroviral (ARV) treatment, hospitals charge for everything else – tests, equipment, and treatment for opportunistic infections. His parents sold their home and changed jobs to accommodate Xiao Liu's constant visits to the hospital. His sister gave up on her education to work and earn money to pay for hospital bills. They tried to get compensation from the local authorities for the blood transfusion, but instead they were warned to drop their case or face future consequences.

 

Barriers to treatment

The challenges Xiao Liu faced in accessing treatment are shared by thousands of Chinese children that are estimated to be living with HIV/AIDS. I spent three months researching these barriers to treatment in different parts of China and found some disturbing trends. While I met some rural doctors who were deeply dedicated, I also heard that not enough health care workers have been trained in the complexities of AIDS care. I spoke with families whose children with HIV/AIDS were turned away from hospitals, sometimes out of unfounded fear of contagion, sometimes because hospitals know AIDS care is expensive and doubt families would be able to meet the costs. One mother didn't even know that free ARV treatment was provided by the government.

Some were reluctant to take their AIDS medicines at school where other children would see them.

While I saw pictures of Chinese leaders shaking hands with people living with AIDS on national television, and calling for an end to stigma and discrimination, stigma and discrimination are still widespread. Xiao Liu and other children told me they had been turned away from schools and harassed by schoolmates and teachers. Some were reluctant to take their AIDS medicines at school where other children would see them. The children I met with showed signs of severe depression and social withdrawal. One man told me that all his niece does “is cry in her room”.

Others beyond China's borders share the blame. The world has made advances in the availability and quality of HIV/AIDS drugs and yet few steps are made to ensure that children in impoverished countries are provided the same care as those in wealthy ones. Drug companies point to the lack of demand for paediatric formulations of ARV medicines as an excuse for the high cost, while children struggle daily with the side effects of the adult-formulated drugs they take. Because of the tight grip big pharmaceutical companies keep on patents, China has yet to produce second-line ARVs domestically. So many kids have no choice remain on regimens to which they have grown resistant; no second-line treatment is available yet in China.

China has made a remarkable commitment in promising free treatment to those who have HIV/AIDS, but gaps in the program leave thousands of children out in the cold. The AIDS treatment program should be expanded to include all the costs families shoulder to care for an HIV-positive child, and China should exercise its rights under the WTO to issue compulsory licenses and manufacture second-line drugs domestically. The small grassroots charities that provide aid and treatment to children with AIDS in China in hard-to-reach areas and marginalized communities also deserve more support from the government, as well as from international donors.

In a letter dated in the summer of 2008, Xiao Liu wrote:

I have been living with this illness for awhile now; my health is always bad, and sometimes I wish that I would just die. But my mother and father are always cheering for me, and they tell me to be brave and strong. Since they spoke these words, I have been inspired to battle with HIV/AIDS. I will fight until my last breath.

Tragically, Xiao Liu's wishes and the hopes of his parents were not enough to stop AIDS. It is up to the rest of us, however, to take Xiao Liu's words to heart, and to continue to fight for the thousands of others like him.

 

This post was originally published on Asia Catalyst in April 2009.