Taking Action

#EndHIV4Her: Addressing the needs of young women and girls

Sep 12, 2017
Taking Action

Dear Diary,

I have been struggling with an eating disorder for the past few years. I am afraid to eat and afraid I will gain weight. The fear is unjustified as I was never overweight. I have weighed the same since I was 12 years old, and I am currently nearing my 25th birthday. Yet, when I see my reflection, I see somebody who is much larger than reality.

I told my therapist that I thought I was fat. She said it was 'body dysmorphia'.
She explained this as a mental health condition where a person is apprehensive about their appearance and suggested I visit a nutritionist. She also told me that this condition was associated with other anxiety disorders and eating disorders. I did not understand what she was saying as I was in denial; I had a problem, to begin with. I wanted a solution without having to address my issues.

Upon visiting my nutritionist, he conducted an in-body scan and told me my body weight was dangerously low.

I disagreed with him.

I felt he was speaking about a different person than the person I saw in the mirror. I felt like the elephant in the room- both literally and figuratively. He then made the simple but revolutionary suggestion to keep a food diary to track what I was eating.

This was a clever way for my nutritionist and me to be on the same page. By recording all my meals, drinks, and snacks, I was able to see what I was eating versus what I was supposed to be eating. Keeping a meal diary was a powerful and non-invasive way for my nutritionist to walk in my shoes for a specific time and understand my eating (and thinking) habits.

No other methodology would have allowed my nutritionist to capture so much contextual and behavioural information on my eating patterns other than a daily detailed food diary.
However, by using a paper and pen, I often forgot (or intentionally did not enter my food entries) as I felt guilty reading what I had eaten or that I had eaten at all.

I also did not have the visual flexibility to express myself through using photos, videos, voice recordings, and screen recordings. The usage of multiple media sources would have allowed my nutritionist to observe my behaviour in real-time and gain a holistic view of my physical and emotional needs.

I confessed to my therapist my deliberate dishonesty in completing the physical food diary and why I had been reluctant to participate in the exercise. My therapist then suggested to my nutritionist and me to transition to a mobile diary study.

Whilst I used a physical diary (paper and pen), a mobile diary study app would have helped my nutritionist and me reach a common ground (and to be on the same page) sooner rather than later.

As a millennial, I wanted to feel like journaling was as easy as Tweeting or posting a picture on Instagram. But at the same time, I wanted to know that the information I  provided in a digital diary would be as safe and private as it would have been as my handwritten diary locked in my bedroom cabinet.

Further, a digital food diary study platform with push notifications would have served as a constant reminder to log in my food entries as I constantly check my phone. It would have also made the task of writing a food diary less momentous by transforming my journaling into micro-journaling by allowing me to enter one bite at a time rather than the whole day's worth of meals at once.

Mainly, the digital food diary could help collect the evidence that I was not the elephant in the room, but rather that the elephant in the room was my denied eating disorder.

Sincerely,
The elephant in the room

While pursuing a degree in development and social anthropology, I participated in a course on HIV/AIDS and development. What seemed like a short dive into the subject would end up being the spark to a future career in global health. I found a passion in the realization that there exist deep-rooted links between such disparate topics as human behavior, culture, infrastructure, economics, and gender, to name a few.

However, the discourse on HIV/AIDS was quite different back then, compared to what it is now.

Back then, the price of antiretroviral treatments (ARTs) had for the first time, begun to decline dramatically. The sudden potential of access to treatment-for-all was exhilarating, and full of promise.

Progress lies not in enhancing what is, but in advancing toward what will be.”
Khalil Gibran

Ten years later, while attending a course on sexual and reproductive health and rights, HIV was now covered in a mere 2-hour lecture.

This, I believe, is indicative of some of the progress made in the availability of access to ARTs and more recently to pre-exposure prophylaxis PrEP, which has been shown to be effective in clinical trials for HIV prevention.

Despite active prevention efforts, annual incidence of new HIV infections has not decreased since 2005, according to a 2015 Global Burden of Disease study published in the Lancet.

Additionally, no one country was reported as achieving the UN’s Millennium Development Goal 6 by 2015, to halt and reverse the spread of HIV and provide universal access to treatment for all.

The latest UN’s Sustainable Development Goal 3 now aims to end HIV/AIDS by 2030, an ambitious goal, considering the halted decline in infections.

Gender as a risk factor

UNAIDS has estimated that 7,500 young women and girls, 10 to 24 years of age, become infected with HIV every week, with the highest rates in southern and eastern Africa.

New insights have been uncovered from studies such as by the Center for the AIDS Programme of Research in South Africa (CAPRISA), demonstrating that a “cycle of infection” exists linked to young women engaging in sex with older men.

The higher rates found among girls display a clear sign of gender bias in the risk for HIV infection, where girls make up 71% of all new infections among adolescents.

Evidence such as this highlights the need to address sensitive topics in prevention efforts such as gender-based violence, cross-generational sex, and transactional sex.

Last month, the 21st International AIDS Conference held in South Africa, brought the focus back to girls and women as a key population of interest.

Tuning our compass

One initiative focused on young women and girls is DREAMS, a partnership to reduce HIV infections among adolescent girls and young women in 10 sub-Saharan African countries.

The #EndHIV4Her twitter campaign is another effort that has advocated for HIV programming that specifically addresses the needs of women and girls.

Momentum is needed towards holistic approaches to HIV prevention and treatment that acknowledge the intersectionality of risk factors faced by female adolescents.

We may no longer need an entire course on HIV/AIDS, but if we hope to get anywhere near the UN Sustainable goal to end HIV by 2030, a lot of work still remains, most urgently in tackling the greater vulnerability of girls.

Edited by Brena F. Sena.

Sources:

http://www.thelancet.com/journals/lanhiv/article/PIIS2352-3018(16)30087-X/abstract

http://www.mayoclinic.org/diseases-conditions/hiv-aids/basics/prevention/con-20013732

http://www.cdc.gov/hiv/http://www.cdc.gov/hiv/basics/prep.html

http://www.huffingtonpost.com/dr-timothy-mastro/the-issues-we-must-addres_b_10659102.html

https://www.youtube.com/watch?v=JbtDggiaJZ4www.aids2016.com

If appropriately used in the 21st century, data could save us from lots of failed interventions and enable us to provide evidence-based solutions towards tackling malaria globally. This is also part of what makes the ALMA scorecard generated by the African Leaders Malaria Alliance an essential tool for tracking malaria intervention globally.

If we are able to know the financial resources deployed to fight malaria in an endemic country and equate it to the coverage and impact, it would be easier to strengthen accountability for malaria control and also track progress in malaria elimination across the continent of Africa and beyond.

Odinaka Kingsley Obeta

West African Lead, ALMA Youth Advisory Council/Zero Malaria Champion

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Dear Digital Diary,

I realized that there is an unquestionable comfort in being misunderstood. For to be understood, one must peel off all the emotional layers and be exposed.

This requires both vulnerability and strength. I guess by using a physical diary (a paper and a pen), I never felt like what I was saying was analyzed or judged. But I also never thought I was understood.

Paper does not talk back.Using a daily digital diary has required emotional strength. It has required the need to trust and the need to provide information to be helped and understood.

Using a daily diary has needed less time and effort than a physical diary as I am prompted to interact through mobile notifications. I also no longer relay information from memory, but rather the medical or personal insights I enter are real-time behaviours and experiences.

The interaction is more organic. I also must confess this technology has allowed me to see patterns in my behaviour that I would have otherwise never noticed. I trust that the data I enter is safe as it is password protected. I also trust that I am safe because my doctor and nutritionist can view my records in real-time.

Also, with the data entered being more objective and diverse through pictures and voice recordings, my treatment plan has been better suited to my needs.

Sincerely,
No more elephants in this room

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Laura Hytti

Contributor at Teamscope

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