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The politics of side effects

Tuesday, 11 August 2015 Written by // Samantha Categories // Youth, Samantha, Women, Health, Treatment, Living with HIV, Opinion Pieces, Population Specific

Giving youth a hand. Our Samantha asks “Can youth already be long term survivors?” And if so, how can we better support these young people?

The politics of side effects

I recently heard youth with HIV describing themselves as long term survivors. The group I refer to are those who were born with HIV, now in their 20's, some of whom struggle with adhering to their medication regimen. Many have become treatment-weary and struggle in similar ways to adults who are long term survivors and who would like a break from taking pills every day.

At least two of the youth described how they made decisions to stop taking medication completely with the end result being hospitalization with near death experiences before they were convinced to get back on medication.

I struggle often while speaking with youth as I want to give them encouragement while at the same time acknowledge the side effects and the fact that youth in their early 20's, born with HIV are indeed long term survivors.

We cannot assure them that if they take their medication everything will be just fine as they know from first hand experience that although the medication keeps them alive, side effects can be a struggle. According to the World Health Organization HIV-related deaths have more than tripled since 2000, making it the number two cause of death among adolescents worldwide.  

As well as adherence and side effects. youth struggle just like us every day with stigma, discrimination, disclosure and risks of criminalization, all of which are a heavy burden for adults, let alone youth. 

We celebrate the development of antiretroviral medications which prevent opportunistic infections and keeps people living with HIV alive. Early intervention with antiretroviral therapy is like a functional cure for HIV. Treatment allows us to live productively with a life expectancy much longer than we could have hoped for thirty years ago. We acknowledge these great strides in recent years as well as  treatment as prevention which can help to virtually eliminate HIV by 2030 with a united effort.

Here is a sample of what I read in recent weeks from youth about their side effects:                                                                                                                                                                        

"Has anybody else on Atripla had osteoporosis and a significant drop in CD4 count?" 

" I switched due to nightmares and night sweats. Even after years I'd still have to wake up (prob from a nightmare) to dry off." 

"The only time it affects me mentally is if I forget and have to take it in the morning. Then I can't walk OR think."

"I don't really have any other side effects that are too bad and it's keeping my HIV in check so I'm afraid of switching."

"I had to get off after so long, had other bad side effects. Switched to Stribild for a year now and it has it's own side effects"

"I've had a lot of bone pain (hip & back) and my last bone density scans showed thinning of the bones."

"My CD4 was as low as 50 but stayed around 200 from toddler to 10 or so then came up very slowly. So I hate to see a drop"

"My, CD4 is so weird. I've been declining since October, somewhere from 1300 to now 7-800 but undetectable as well. I hope u find a good balance."

Having observed this straight from the source, how can we support youth who were born with HIV? How can we translate this into hope for this particular group of youth?

It doesn't make it any easier to come to terms with encouraging youth to adhere and deal with potential side effects. but there needs to be some incentive. Maybe achieving an undetectable viral load and what this means in terms of reducing/eliminating transmission risk is one incentive.

Meanwhile the scientific community seeks solutions which are adaptive to the lifestyle and needs of youth.  The BREATHER study was designed to test a regimen that could normalise life for young people. Said Prof. Butler. “Adolescents going out at the weekend often don’t take their medication because they don’t want people to see them taking it”.

The prospect of lifelong therapy is also daunting for many young people. The Breather Study was conducted to find solutions to the youth treatment burden and results concluded that a week on, week ends off treatment refime does control viral load in youth.

Along with seeking options and incentives for youth we can encourage them to engage in policy and services, research, education and a cure. Researchers and front line service workers today are also focusing on psycho social support, disclosure (which is a major stress factor) while supporting youth to challenge stigma, discrimination and sexuality issues. 

As we acknowledge side effects as reported by youth,  youth also celebrate and feel optimistic about the drastic reduction in vertical transmission in the developed world where vertical transmission can be completely eliminated. The reductions in vertical HIV transmission observed in Europe and North America have helped raise the possibility of the virtual elimination of new pediatric HIV infections and in turn an "AIDS-free generation".  Although in many resource-limited settings, preventable new pediatric  infections continue to occur daily with challenges to eliminating vertical transmission, would have thought thirty years ago we would be this close to a cure.

As efforts are made on an international, national and local scale to find a cure for HIV/AIDS we will in the meantime provide  multidisciplinary support to youth who are otherwise bright, intelligent - typical youth with an added complex component of being long term survivors. We will ensure that their voices are heard at all levels and share in the celebration with youth as major scientific advances are made.

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