My woes with DTG, where is my right to choice?

‘We are changing your regimen to the triple therapy Dolutegravir (DTG).’ That is the only information I got from my health care provider about my new treatment regimen. I protested this decision as I believed I had the right to make an informed choice regarding my health, or at least get more information. The only response I got was, ‘You advocates demanded it, so there you go!’  

As a youth advocate I am elated that we have the DTG-based triple regimen (tenofovir lamivudine dolutegravir) in the country, a treatment option that is more effective, easier to take and has fewer side effects as compared to the counterparts currently in use. But as a young woman, I have to admit, I am still quite scared of DTG, not because I intend to give birth soon or because of the initial issues with it, but because there is still a lot of negativity around it. Healthcare workers literally torment us when we pick DTG; they distance themselves from any side effects that we may encounter. How I wish the same energy used to deny women DTG was used to assure women that DTG is safe for use by all women.

Sadly, my woes with DTG do not end with the poor roll-out without adequate treatment literacy in my country. It is deeper than that. It is as deep as the rumours go. Since my initiation into DTG, I have added weight dramatically. My Body Mass Index classifies me as overweight. I am worried about my weight; it is the first thing that people comment on when they meet me. Their opinions have fuelled my self-consciousness and continue to lower my self-esteem.

DTG has been lauded for minimal side effects; this I agree with, but only in part. We also need to understand more about how to establish whether or not DTG causes weight gain among people living with HIV and especially women. I shared my frustrations with international colleagues and they took these concerns seriously and from them I learnt about this ibase document which talks about DTG and weight gain issues, unlike my health care providers who dismissed these concerns and blamed them on my insecurities.

Weight gain is not a minimal side effect, neither is it insignificant. It goes a long way in affecting treatment outcomes among young women. We have cases of young women intermittently adhering to their DTG based treatment so as to control weight gain.

I have a lot of questions that I need urgent answers to. Are the rumors true? Is DTG causing my weight gain? And to what extent? Is the weight gain fatal? Does it make me susceptible to other weight-related chronic illnesses? Does DTG increase appetite? Can I gain weight even without eating? Am I just looking for someone to blame? ViiV and other researchers should answer me, as even ‘Dr. Google’ doesn’t know, but a few studies do indicate that DTG causes weight gain.

Since there aren’t many answers available, my vote is on DTG causing my weight gain. How I wish I was given a chance to choose between my usual regimen and DTG, as I was already virally suppressed. I wish someone had warned me about the changes awaiting me, I wish I got advice and support to manage these effects, I wish I had psychosocial support to handle the self-consciousness that comes with such changes and to adopt a new lifestyle, I wish I wouldn’t have to deal with comments on my weight any time I meet old acquaintances.

As I write this piece, my troubles with DTG are tripled; my country is currently phasing out Efavirenz based regimens and introducing DTG, I know this because I am an advocate, but I doubt whether this information is common knowledge to all clients on treatment. My country does not have enough stock to cater for the people living with HIV who are on treatment. We are in panic mode, we just need the drugs, DTG or not, we need our lifelong medication.

The WHO Guideline on the SRHR of women living with HIV states that countries should: ‘Promote women’s agency and empowerment, including through health literacy and education, and support them to make informed choices and enact decisions that promote their own, their families’ and their communities’ health.’ The Guideline repeatedly mentions the importance of our informed choice in positive SRH outcomes. This should apply equally to our access to ARTs, and guidelines should explicitly reflect this. That is all we are asking for. Why don’t we receive it?

I urge ViiV and healthcare providers to put together an information package addressing the questions raised and how to cope with the issues as part of treatment literacy. I recognise that the number recording cases of weight gain may be few, but we are not insignificant, we matter and we need answers!

(The author of this piece has requested anonymity)

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