HIV

Men Can Help Stop The Spread of HIV to Infants and Children

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Together with GHC CEO, Barbara Bush, find out how Men can help STOP the spread of HIV to Infants and Children: http://www.huffingtonpost.com/barbara-bush/how-can-men-help-stop-the_b_5862200.html

My Speech to the GHC Uganda Community – 19th July 2014

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I knew I wanted to work with computers from as early as Senior 2, and I wasn’t contented with pioneering the computer club at my high school. Out of University my first job was far from computers, it was with children, orphaned children. They were singing their way to donations, inspiring people from other continents to provide for their needs. Those were the first seeds sowed against social injustice.

I was raised as a middle child, indeed my mother confessed to remembering me long when my diaper was leaking. Single mother, a house wife, I grew up in 7 suburbs in this city, and never in our own home. Those were the second seeds of consciousness to social injustice.

When I stopped looking after children, I was opened up to the world of health information systems – there I saw numbers. 327 HIV positive mothers; 45 malaria cases; any number you can name, we probably have a health statistic for it. On a computer screen, they are numbers, but in the field, they are people. Children, Mothers, Fathers – wasting away because there are no drugs; alas, there are no medical professionals to attend to them.

Now I couldn’t go back – it was not just a 3rd seed sown, it was time to be part of the solution.

We know that for people like me, ICT professionals, opportunities for us are scarce because our backgrounds are outside of healthcare. How do I use my unique skills in global health? At the same time, for those who work in traditional health fields, a lack of community with people (and professions) like mine limits collaboration, knowledge sharing and support.

GHC believes that a global movement of individuals and organizations fighting for improved health outcomes and access to healthcare for the poor is necessary in order to change the unacceptable status quo of extreme inequity.

GHC provides opportunities for young professionals from diverse backgrounds to work on the frontlines of the fight for global health equity.

In 2008, the Ministry of Health estimated that abortion-related causes accounted for 26% of all maternal mortality. This proportion is considerably higher than the World Health Organization’s estimate for Eastern Africa (18%)

In 2011, Uganda had a maternal mortality ratio of 438 maternal deaths per 100,000 live births—well above the average of 240 per 100,000 among all developing countries. Many of these were unsafe abortions. [1]According to a survey of 1,338 women who received post-abortion care at 27 health facilities, on average, Ugandan women paid 59,600 shillings (US$23) for their abortion procedure and any treatment received prior to arriving at a health facility.

If you have lived in this city most recently, you may be familiar with civil servants who “erroneously” earn 96 million shillings a month (that’s about: $35500/mo; $222/hr), and you may have heard that our development partners are redirecting aid, and in some cases it will make the difference between a pregnant mother being tested for HIV and placed on option B+ or not… literary affecting our national dream for an HIV free generation.

[2]In 2012, an estimated 168,000 women in Sub-Saharan Africa died from pregnancy and birth-related causes; 62,000 of these women did not want to become pregnant in the first place. Fully meeting all need for modern contraceptive methods would have prevented 48,000 of these deaths—a 29% decline in maternal mortality.

[3]Every shilling spent on family planning/Contraception will save more than 6 shillings in post-abortion care services averted. The cost of providing contraception in Uganda for one year has been estimated at around UGX 57200/= per user, while the overall cost per case for treating post-abortion complications is UGX 340,600/=.

 96 million shillings would provide 1678 Ugandan women a year’s needs for contraception. What else can it do now?

[The entire stipend needed for all of us 65 fellows this month!]

In this room, there are young professionals from all walks of life. You are here because you decided to be available for the Global health Movement. Something tagged at your heart and you answered the call. I challenge you, stay at your post. Remain present, remain engaged, and remain plugged. It is young people like you who are going to make a difference in the way we think about the future of this continent.

There are also partners, and the organizations where new fellows are going to be placed – you have made available room and board, time and space to tap into the passion in this room. I urge you, open up more doors; there are a lot of young unemployed (and indeed unchallenged) graduates who are willing to get their hands dirty. GHC has proved it, because the growth remains visible, next year, there will be more than 150 fellows!

Where do we go from here? This is Step #6 in how GHC Works: Fellows collaborate, Grow as leaders, Deepen Impact BEYOND the fellowship year.

Let’s see, my good friend Edward heads to Mbale to serve local communities with microfinance, as the country director for Spark MicroGrants; Cassandra has left Kyangwali Refugee community for medical school in the US – she’ll become a doctor soon enough. Brian? I will lead a team of ICT professionals – you can guess how they will turn out in a year – Global Health advocates! Many of us are going to do different things.

But oh how we are changed. How the fellowship has given us new eyes, I will never look at a health stat and not imagine the people represented; I will never lose consciousness of the health challenges of my community. I have not just grown professionally – learning what PMTCT is and the technical language around HIV and AIDS, I have also been intellectually stretched, when debating interventions for young people, and debating with my class about aid cuts and their impact on health. These discussions have made me grow, but perhaps more profoundly, I now question my own values, ethics, and motivations for engaging in this movement.

Joan, go and be a star! Brian, one year from now, you will be more than just a world changer. Sam, there is room for ICT professionals like you and me in the movement for Global Health Equity!

You and I, all of us have got to remember, we are part of a global community of emerging leaders to build the movement for health equity. We are building a community of change-makers who share a common belief: Health is a human right.

Once a Fellow, always a fellow!

Thank you.

 

[1]Sundaram A et al., Documenting the individual- and household-level cost of unsafe abortion in Uganda, International Perspectives on Sexual and Reproductive Health, 2013, 39(4):174–184

[2] Adding It Up: Costs and Benefits of Contraceptive Services—Estimates for 2012, New York: Guttmacher Institute and United Nations Population Fund, 2012.

[3] Vlassoff M et al., The health system cost of post-abortion care in Uganda, Health Policy and Planning, 2014, Vol. 29, pp. 56–66

Will Uganda have a “Mississippi Baby”?

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Last week, was it was reported that the Mississippi baby previously thought to be cured of HIV was in fact carrying detectable amounts of the virus.

The child, born in 2010 to an HIV-positive mother who received no prevention of mother-to-child transmission of HIV (PMTCT) services during her pregnancy, tested positive for HIV shortly after birth. She was given a high dose of antiretroviral medications at 30 hours of age and remained on antiretroviral therapy (ART) for 18 months before she was lost to follow-up care.

Five months after being lost to care, the child was again examined by medical staff and found to have undetectable levels of HIV, and remained so for more than two years. This was the basis of her Care and Treatment advisors declaring her cured.

This month, at almost 4 years of age, detectable levels of HIV were found in the child’s blood, along with a decreased level of CD4 T-cells and the presence of HIV antibodies—signals that the virus is actively replicating in the body. According to NIH, the baby had (16,750 copies/mL). Repeat viral load blood testing performed 72 hours later confirmed this finding (10,564 copies/mL of virus).

Additionally, the child had decreased levels of CD4+ T-cells, a key component of a normal immune system, and the presence of HIV antibodies—signals of an actively replicating pool of virus in the body. Based on these results, the child was again started on antiretroviral therapy. To date, the child is tolerating the medication with no side effects and treatment is decreasing virus levels. Genetic sequencing of the virus indicated that the child’s HIV infection was the same strain acquired from the mother.

There are a number of things that caught my attention when i read up the details on this story:

  1. That a mother went to deliver in the hospital, even though she had not received PMTCT services during her pregnancy – this is something for which we are yet to achieve 50% as a nation. Are we able to reverse this? Because whenever a mother does not deliver from the facility, its not only a missed opportunity to test for HIV, it means we cannot catch other birth related complications, and as such we continue to stare into grim figures of Maternal and Neonatal deaths.
  2. There was a lab and test kits to test for HIV, and CD4 count of the baby at the various stages of development. Is this something that we can ensure? What is the proximity of an HIV testing centre to the 2.2 million ugandan babies born annually? As you can imagine, the presence of a lab is inconsequential if the reagents and test-kits are not present. In many areas where the labs are not present, regional hubs function to carry out the tests. A sample transportation network is critical for DBS samples for exposed infants, indeed for all children and mothers.
  3. One of the salient successes of this story is documentation – the presence of mind to notice something unusual at your job, and you take a keen interest in it, choosing to follow it up and ask the questions that some people may consider hard to ask. I wonder if we are able to take a keen interest in something scientifically unusual and cause it to be the centre of a full fledged research, as this case turned out to be.
  4. How about the patience to look at the numbers (facts and figures) 4 years later? In science, this institutional memory is very important, because it makes for very interesting research findings all the time. Every picture, every story, every record, as long as it is not treated with contempt, has the potential to reveal something to us if we listen to the numbers more closely. And yes, sometimes, its years later, but if we are keen, we will hear the numbers speak to us.

As the world of science grapples with the apparent set back, players and actors in the sector remain committed to advancing HIV/AIDS research. With programs that focus on HIV prevention and treatment as the best tools to end pediatric HIV international and national partners are making great strides toward eliminating mother-to-child transmission of HIV globally.

Right now, we know, that by providing a pregnant or breastfeeding  HIV positive woman ART we can almost completely eliminate the possibility that she will pass the virus onto her baby during pregnancy, child birth, or breastfeeding. However, every day 700 children become newly infected with HIV. We must quickly identify and begin treating these children to ensure they can lead healthy lives.

As a nation, our job isn’t over until no child has AIDS. Uganda must ensure that communities and health facilities have the tools they need and the resources to plan, implement, and sustain their HIV programs so that all families are reached with services. Otherwise, Uganda will never have a Mississippi Baby.

Moving On…

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Its been a very exciting year, working as a Global Health Corp. When i joined, i wanted to bring my passion for Health and ICTs close together, and to experience the world of Global Health. What does it really mean to be part of a global health movement? I am still learning.

At the GHC institute in Yale, I face 2 men – 2 gay men, 2 HIV positive gay men – and they communicated to me. 9 months later, my government passed the anti-gay law, and it makes it criminal for these men to step on the soils of my motherland to communicate to young people, like me about what it means to be the poster child for an AIDS epidemic, and how to overcome all odds to create a movement.

In South Western Uganda, I learned about Ariel Clubs, groups of young people who are HIV positive. And i learned to listen to them as they told me stories of how they learned about their HIV status. and how they have managed since. They are vibrant, they are confident and they are a force to reckon with. They are a movement. And then 3 weeks ago, my government passed a bill that will effectively keep away every young person who doesn’t already know their status. because, knowing your status can now be a precondition for going to jail, depending on how your life pans out.

In working around HIV and AIDS, I have learned lots of things – some I knew, some are new. But I have observed and learned that there is a scarcity of health workers in the HIV/AIDS Clinics in public health facilities. There are a few, who brave the long lines of patients, who sit in on trainings and learn about the latest treatment guidelines, and they go down to the nearest HC III and begin to implement these. And then, a nurse gets sent to jail for a needle stick injury – her major undoing being that she is HIV positive. The victim on the accident was placed on PEP and has remained negative, and indeed, her professional mistakes were not excusable, but neither did the professional council prevail over her and her employer, instead, criminal law was called upon. With a national prevalence of over 7%, are we going to hire only HIV negative health workers? I wonder. And what do we make of the movement of peer educators who are part of the system for care and follow-up of HIV patients across the country?

I am a Global Health Corp – once a fellow, always a fellow!

I may be winding up the fellowship, but my consciousness of the health challenges around me is not waning. There’s Tobacco to deal with (and how young people in Bushenyi leave school to go pluck leaves, effectively turning themselves into MARPs on pay-day); and we now know that TB and HIV are such a deadly mix.

There is the road menace we have invented – number of Boda Boda related accidents! So many young people, in the prime of their lives, are screeched to a near-death experience on these 2 wheelers. Rules dont seem to work, maybe we start a movement!

There is Female Genital Mutilation in Eastern Uganda – as a father of girls, this shakes me to the core every time i think about it. Yet, many school girls still face the barbaric act.

How about Teenage pregnancies? And the unmet need for family planning. How about Sexual and Reproductive Health and Rights knowledge gaps? Or the increasing consumption of drugs among the young male populations in Uganda’s urban communities.

What about you – when did you last test for HIV? If you are sexually active, do you use protection? Ladies, what is your smart choice, to prevent an unwanted pregnancy? Mothers, have you given your under 5s the gift of a complete immunization?

Finally, Are you part of a Glocal Health Movement?

Want an HIV Free Generation? Support p/eMTCT.

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30 year old Jessica (not real names) is a single mother of a 4 year old gal, and a 2 year old boy. She grew up in the hills near Kabale, in what she calls a “proper christian home with strict parents.” The second of 5 children, Jessica lives with her mother, having lost her father as early as 1990. The 5th wife of her husband, Jessica conceived within the first year of her marriage, only getting knowledge of her HIV status in her 1st trimester. Jessica lost no time in getting into ART Care and Therapy.

In 2009, having been exposed to PMTCT services, Jessica delivered her first born daughter, HIV Negative. Excited at the possibility, Jessica knew she could hold onto her dream of having a family, and in 2011, Jessica delivered her second child, HIV Negative. Jessica is one of hundreds of thousands of women who have seen the fruits of the intervention to prevent the transmission of HIV virus from a mother to her unborn child.

When my organization, the Elizabeth Glaser Pediatric AIDS Foundation started to implement the USAID funded STAR-SW, there were only 100 accredited sites to offer PMTCT services in 13 districts in the South Western region of Uganda. Today, there are over 220 PMTCT accredited sites.

Today, the problem of health workforce is not in the numbers, rather in their technical capacity to support fully the elimination of mother to child transmission of HIV (eMTCT). And whether this capacity is well harnessed and managed so that every mother who comes to the facility will find a competently equipped health worker to attend to them. Where the numbers remain wanting, Peer educators have been used to stop gap non-technical areas, so that the few health workers present could be utilized maximally. There are many facilities that could use peer educators, in some cases, needing upto 6 in the HIV/ART Clinic.

For health workers to be present, without the logistics they need to perform their work is disheartening. eMTCT programs are premised on the presence of HIV Test kits, the presence of ARVs pre and post-delivery, both for mother and baby. Incidentally, mothers can be initiated on ART Care without the presence of complex and expensive equipment in a state of the art laboratory. But whenever a facility does not have these essentials, then the consistency of the intervention is greatly undermined. The question of logistics has a flip side, whether a health center is an accredited site to receive and offer PMTCT services. While I understand the dynamics of this, I also realize that the size of pandemic that HIV is, that we should indeed consider to have this intervention at the nearest health facility to a mother who we would not like to deliver at home, unattended to, and who will inadvertently pass the HIV virus to her unborn child.

South Western Uganda communities also have taught me an important lesson – that when men are not involved in the seeking of eMTCT services, then we do not have a sustainable intervention. Men are key, and in some cases kings. But men have escorted their pregnant partners to the facility only to sit under a tree for 2 or 3 hours, unattended to and completely detached from the details of an ANC visit. Indeed, some health workers do not know what to do for men, other than HCT for which couple testing is rewarded with a certificate. There must be, on offer, a package suited towards men that will give them a sense of belonging and connection to the health care of their HIV positive partner, beyond HCT. Here, is opportunity for innovation.

Often, when HIV positive mothers leave the facility, they go into a stigmatized community and some of them are lost to care and treatment at the facility. We need to continue to take a detailed look at the linkages between the facilities and the communities. The use of peer educators could be a terrific solution for this. For example, staff at Ntungamo district’s Itojo Hospital have devised a plan, to assign each peer between 5-6 mothers who live in the same neighbourhood as they do. They will check on them at home, and ensure that they remain plugged into Care and Treatment; and in some cases serve as treatment buddies.

But we can do so much more with community leaders – parish chiefs, religious leaders, sub-county chiefs, model men, opinion leaders – they can all help to shape a dialogue, at community level that will stem so many negative attitudes and cause us to

To date, we have seen over 2 million mothers access and receive PMTCT services, but we cannot remain complacent, the next mother in line is equally as important as the one we have served. And we are going to need all hands on deck, Men, trained health workers, adequate supplies, and a conducive environment. Together, we can bring about an HIV Free generation, together, we can eliminate mother to child transmission of HIV.

 

 

The Devil (and the Gold) Both lie in the Details

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This week, I am in Kihihi, in Kanungu, South East of the Rwenzoris. Kanungu is one of the 13 districts part of the Strengthening TB and AIDS Response in South Western Uganda – STAR-SW – a USAID supported Technical Assistance Program in Uganda. STAR-SW is one of various technical assistance programs implemented by the Elizabeth Glazer Pediatric AIDS Foundations, along with 5 others – See Here.

The week, is to help us all, appreciate the work over the last 3 years, as well as to examine the cross linkages between the various programs at the district level. There are 5 technical areas that EGPAF programs support in the region: HIV Counseling and Testing (HCT), Prevention of Mother to Child Transmission (PMTCT), HIV Care & Treatment (ART C&T), Safe Male Circumcision (SMC), and Tuberculosis Interventions.

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There’s Hope…

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Yesterday I met 11-year old Ainamanige Collins. Distraught and visibly bothered, Collins is one of the children who turned up at an Ariel Club meeting. Ariel was a child of Elizabeth Glaser, who passed away while young because the world had not thought about Pediatric medication for HIV Positive Children. Ariel clubs are meetings specially arranged for HIV positive children, where they meet peers, get medication refills, get their CD4 Counts done and generally have fun, despite their medical condition. But Collin’s problems were not under his skin, they were in the system he was born in. 1 of 5 children, whose farmer parents are left with no option but to send him to a public school. Collins has missed most of the second school term for lack of school fees. 12000UGX per term! At the end of the day, I told Collins not to worry about school, because the God he had just prayed to, as the meeting closed, had answered his prayer for school fees for the rest of his primary school education. After 1 day, and 1 prayer, at least in Collins’ eyes, there is hope.

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