Know your HIV status, know your treatment options, and demand optimal ARVs!

The theme of the 30th World AIDS Day (1 December 2018) is ‘Know your status!’. 

It’s a shout out for people worldwide – to get tested and to tackle the stigma that prevents many people from finding out that they are living with HIV. Testing is the first step on the road to optimal HIV antiretroviral (ARV) treatment, which means a better quality of life for people living with HIV and is key to reducing AIDS-related deaths and preventing new infections.

However, not all treatment is equal. Optimal treatment can provide significant, positive changes for an individual. For example, dolutegravir-based regimens have higher efficacy, reduced side-effects, and a person can achieve an undetectable viral load – HIV levels so low that a test cannot find it in a blood sample – and undetectable = untransmittable (U=U).

Jeed’s t-shirt reads: Get tested for HIV. Get tested to move on. Ending AIDS.
© Gemma Taylor / Make Medicines Affordable

The Make Medicines Affordable campaign works on increasing access to HIV, hepatitis C, and tuberculosis (TB) drugs. Related to that is improving treatment literacy, so that patients know their options and their rights and can create demand for the best treatment for themselves and their communities.

Big, age 11, from Bangkok, Thailand knows his status. “I take a combination of drugs right now,” he says. Dolutegravir (DTG) is not part of the combination but he would like it be. He talks about his current treatment: “The pills are so large – and there’s so many!” His doctor has changed his treatment over time to find the combination most “friendly” for him. 

“He has to cut some of the pills in half to get the right dosage as there not versions for children,” says Apiwat Kwangkaew (Jeed), the Chairperson of the Thai Network of People Living with HIV/AIDS (TNP+). “Once it’s the right dosage Big has to cut them down further so they are smaller to swallow.”
TNP+ is an implementing partner of Aids Access Foundation, our campaign organisation in Thailand.

Big would prefer it if his pills weren’t so large. There aren’t child-friendly versions, so pills intended for adults get cut down instead. © Gemma Taylor / Make Medicines Affordable

Jeed volunteers at the Mercy Centre in Bangkok, where Big is one of the 100 children living with HIV that the Centre supports each month. The Centre is home to 20 children who have lost parents, while others attend for social and educational activities and food. Two decades ago, Jeed himself spent around two years in the adult wing of the Mercy Centre after he tested positive for HIV – at a time when ARVs were out of reach in Thailand due to their high prices. Back then, 20 years ago, ARVs were not available via Thailand’s Universal Health Coverage (UHC) scheme. “I was so close to death that I prepared for my own funeral. I even had my picture taken, to display by my coffin, so it would be one less thing for my mother to think about.” His mother and siblings rallied round to pay for the drugs privately. “When I recovered, I slowly started to give back.”

I was so close to death that I prepared for my own funeral. I even had my picture taken, to display by my coffin, so it would be one less thing for my mother to think about – Jeed.

Now in his 40s, Jeed’s personal story shows the progress that has been made. He is grateful for where his treatment has got him, but believes we must still demand more, “especially when the science exists”.

Jeed explains that side-effects are common with the current combinations, one of which is nausea. “This has an impact on concentration and attendance at school or work”. He has also observed that many people who have been on treatment for years have developed type 2 diabetes. When treatment causes detrimental side-effects, people may not take it every day. This can lead to drug resistance, people need to move from first- to second-line, or second- to third-line treatment, sometimes known as ‘salvage therapy’. Their treatment options become much more limited.

“Drug resistance and side-effects are a concern, especially for children who have been taking drugs from birth,” says Jeed. “Dolutegravir has reduced side-effects and is proven to effective for drug resistant HIV – it could literally flip the lives of the children we see at the Mercy Centre”.

DTG is on World Health Organization’s list of essential medicines for first, second and third-line treatment. However, in Thailand, DTG is still only recommended as third-line. The price that was set by the patent holder, ViiV Healthcare, ($350 per person per month) meant the government would not be able to roll it out for the much larger group of people on first- and second-line treatment, where there is more demand.

Recently, an agreement to reduce DTG’s price by allowing generic versions to enter the country has now been expanded to include Thailand. This expansion is in large part as a result of the advocacy work of Make Medicines Affordable. But DTG will not enter Thailand overnight. While generic versions of the drug are being registered, a process that will take upwards of six months, Aids Access and TNP+ are fighting for DTG to be included in the national guidelines for all patients so that by the time DTG enters the country it can benefit more people.

Know your HIV status, know your treatment options, and demand optimal ARVs!

ViiV has also been criticised for not registering its paediatric formulation of DTG, leaving Big and other children with HIV behind. Aids Access and TNP+ will continue to advocate both nationally and globally until affordable, optimal treatment is available for all people in all countries, including children.

“These pills are not jewellery,” says Jeed, “we need to make it affordable for everyone.”