“I had one patient – a 23 year-old woman who has to be led everywhere now by her partner since she went blind. It’s really awful to see young people in their twenties lose their sight. China is not an easy place for blind people and it’s even worse to be blind and HIV positive.”
Dr. Karen Kiang works as the medical director in MSF’s HIV/AIDS treatment project in Nanning, the provincial capital of Guangxi Zhuang Autonomous Region in China. Since 2003 when the project opened, 20 patients have been diagnosed with CMV retinitis.
Dr. Kiang says one of the main problems is that although the diagnostic test is fairly easy to perform, many patients don’t come forward for treatment early enough. “Most patients realise that something is going on, their sight is getting progressively blurry but they’re working, they’re busy and there’s no pain so they say let’s just see if it’s going to get better and it just gets slowly worse – after about two weeks they decide to come to the clinic where we put them on treatment.”
The problem is that once the virus takes hold, in just a few months the patient will completely lose their sight.
Treatment of CMV retinitis usually means either hospitalisation for the time patients receive intravenous injections, or injections into the eye that patients can find difficult. The arrival of valgancicolvir in oral form should avoid both these problems. They need to take just two pills a day and can continue to work and get on with their lives.
“The beauty of the oral valganciclovir is that they don’t have to go into hospital and just sit there and get exposed to other diseases. Plus we can continue the valganciclovir treatment for three months – with other treatment, they have to end their hospital stay after three weeks. So there’s much less chance of a relapse with this treatment.”
Losing your sight is an appalling event in any society. In China, says Dr. Kiang, it’s an even tougher situation to deal with: “You can’t hold a job, ever. Once you are blind you have to be taken care of for the rest of your life – it takes away your own independence and that of all your family. The family loses out on the income of the person who has gone blind and also the incomes of those who then have to give up their jobs to care for the patient. It’s catastrophic.” Support systems in the country are just not geared up to help people with disabilities. “The things we take for granted on a daily basis, climbing stairs, crossing the street, going shopping, preparing food, all of these things become immense challenges and the resources or systems to assist people just don’t exist here.”
The clinic in Nanning has to pay the full price for oral valganciclovir – US$ 10,273 per patient for a four-month treatment. It’s the same amount that any top clinic in the US or Europe would pay. Dr. Kiang acknowledges that this is a colossal amount to pay for the treatment of a single patient: “It’s a ridiculous price. It creates an exclusive kind of system open only to those who can afford to pay for it.”