Without sufficient funding and a more coherent approach, the future of children with special needs is bleak according to Speech-Language Pathologist (SLP) and Audiologist and founder of Ambrose Academy, Kutlwelo Mariri.
She was one of the eighteen young leaders from Botswana who flew out to the US recently to participate in the Mandela Washington Fellowship, the flagship programme of the Young African Leaders Initiative (YALI). Here she discusses her experience and what she has learnt through the programme.
Why did you apply for Mandela Washington Fellowship (MWF) Program 2018?
As a person you need professional and development growth so this was opportunity for me to go and appreciate how far I have contributed with the field of Speech-Language Pathology and Audiology in my country, to learn about the business acumen of making services sustainable and to see what’s next. So since I heard how rich the Business and Entrepreneur track was I believed I should apply and I really got more than what I ever bargained for. It was an experience I wouldn’t trade for anything.
What does it takes to be Mandela Washington Fellow?
It takes a person who has the willingness to change the status quo as well as to care about improving the lives of people. In a nutshell you should be a visionary. I think for last year there was about 37 000 applications and total selection been 700 in Africa as a whole. We were only 18 from Botswana and I was privileged to be part of the Botswana MWF 2018.
What did it mean for you to be selected?
You know Rachel, God’s timing is always the best and we never understand it. I have been meaning to apply but our organisation was not ready for me to go away for 7 weeks so this time I applied and was selected this was perfect timing for me as well as our organisation. For example from the professional side of things we needed to re -evaluate our journey and reposition ourselves to continue being of value to the patients and to special needs children as well as introducing PREVENTION IS BETTER THAN CURE. One of our major concerns is that many children are delayed in speech and language, in fine and gross motor skills simply because of lack of stimulation if we do not attend to this, the number of special needs kids will continue to rise. So as Ambrose Academy we need to address this issue like yesterday otherwise we are sitting on a time bomb.
Where were you placed?
I was placed in a very intensive programme for 7 weeks in University of Austin, Texas under the programme of leadership headed by Professor John Dogget. From the very first day, he told us his intent was not to make us into himself, rather to make sure we graduate from the programme as people who will go and make a difference in our countries and make Africa what it needs to be. He has deep care for Africa and I feel like I owe it to him to make sure whatever I have learnt I better myself and my people. The course covered main areas of leadership, business, critical thinking, self care and this year’s Mandela Theme of Servant Leadership.
So how do the following areas apply in your profession;
Leadership-As you know the profession of Speech-Language Pathology and Audiology is relatively a new profession in our country we still have a long way to go. However what came from the MWF 2018 was that do it in phases, appreciate where you are, where you need to go and keep pivoting until you get at your destiny. Be willing to get advice and be eager to learn so that you keep up with latest trends in your field and NEVER compromising QUALITY.
Also care about humanity and the people you serve as much as acknowledging that some will NEVER be happy with your services no matter how much you try but make peace with that. This really resonated with me very well I always see possibilities with my adult patients and special needs children however one thing that used to hurt me is seeing a parent with buying power not affording their child that opportunity and always complaining about this and that no matter how much I tried.
Business Acumen-Please allow me to generalise in Botswana , there is perception that Health should be FREE even in private sector while its OKAY to pay it in South Africa for example and that has robbed us from having research institutes because research is expensive. In most cases I struggled so much with my patients wanting discount of everything which then makes it impossible to pay monthly expenditure like the rentals and salaries of the personnel. So I heard in all the 7 weeks that passion alone won’t pay bills every day. Prof Doggett made sure we get that. He summarised it like government, private sector even Non Government Organaisations need funds to run. So it doesn’t matter what for, whether for rehabilitation to improve, we need funds to make it first class like in other countries. So sustainability comes in here; if one can’t pay for running cost then they simply face closure.
Self care-Everyone who is in business will attest that as a founder or pioneer of any project you work non-stop with absolutely no time to smell the coffee. This really puts one at risk for cardio vascular diseases and burn out as all they do is work, work and work. However I have learnt to appreciate that one needs to take care of oneself before taking care of other people. All I have been doing is work, work and work. I used to love baking and for the past 7 years I never did it so at least now I have started to learn again, hehehe maybe this festive season I will bake for my family …..
Servant Leadership-I believe as Africans we have the custom for servant leadership it comes natural to us to care about each other even those in the community however we have diluted this if not lost it.
That is why we have concept such as Kgomo ya Mafisa or every child is yours …… Every child is yours really hit me home when my team and I saw the need to establish a trust that can raise awareness about special needs children or teach the public about rehabilitation it was a way of giving back…..there is so much stigma but the question what do we do about it? Do we advocate for these kids or we turn a blind eye we concluded that we needed to advocate so that whether in government, private sector or NGOs our people can be helped. But our many challenges are that there is no volunteerism anymore, we only care once it hits home and by that time there is nothing much you can do because now when you advocate you fear people will say Oh you are only doing it now because you are going through it even though I personally believe it’s never too late to start.
You touched on the general expectation by most people for free medical/specialist services and you raised valid points. But, what of special needs children coming from underprivileged backgrounds? Are we saying they are doomed because their parents can’t afford specialist services at Ambrose Academy for example?
Oh my God Rachel, this is one area that hurts me the most, it’s just that my hands are tied. You know we are very far from assisting these children. I always say if we the literate ones, with buying power and with so much exposure; we don’t see the value of investing in our children ‘s rehabilitation services or prevention is better than cure programmes what is the possibility of having these services extended to those in deep rural areas? Because once we get it then we will extend it to them and fundraise for them? Until then I don’t know what will happen, we need brave people to stand up and help this situation especially policy makers.
Why can’t you at Ambrose Academy for example extend these services to these children especially that I always hear parents particularly those with autistic children talk about the great improvements they notice in the children once they start at school?
Well we have always asked to be subsidised and the answer we get is that it’s not in the government policy. However NORMAL developing children can be sponsored in private institutions and that’s OKAY BUT FOR CHILDREN WITH SPECIAL NEEDS WE would rather give them P300 MONTHLY. I mean if we don’t do anything now can we ever sponsor them in universities while they are not rehabilitated? No ways. I have asked government since it used to sponsor these children in South Africa, why can’t the sponsorship be extended to services like ours? All the international visitors are saying why government is not assisting your efforts? Who is government Rachel? It’s the people working in government. What they do is to find 100 reasons why they can’t sponsor children in our school even though they can see with their own eyes how we have improved the lives of these children.
The only thing to do I guess is to continue advocating for all these children until Policy Makers hear us, and realise that only talking about how we want to improve special needs children lives it will NEVER happen unless we make it possible for them through enabling policies and implementation not just talk.
Share some of outstanding moments of your time in the US
One of the aha!moments I had was during an assignment I had to write my obituary and read it to the audience. It was so intense and very emotional to a point where Prof John kept saying remember guys you are not dead but we couldn’t help crying because it included how you have empowered your family and how your people will remember you by the sacrifice you made for your country. Did you assist your patients and the children in Ambrose Academy simply because it’s the right thing to do or you sabotaged people you were serving? One thing I really wish for my country is for us to create opportunities for others, I normally say if you go to most organisations for assistance the norm in Botswana is that they will tell you 100 things why it can’t work instead of 100 ways to make it work. However in USA they are willing to solve problems for the benefit of others. Imagine if we had that attitude in Botswana.
The whole experience was eye opening and I will like to encourage all young people to apply for it so that they can go and learn from those who are ahead of us. We need to see the possibilities so that our dream for our country becomes even more brighter and we can indeed tell our African stories instead of others telling them for us.
Is there anything we can learn from the healthcare system of the US?
Health is expensive! I think this is the first step we need to appreciate in Botswana, running away from this breaks my heart. Investing in experts, resources and research is costly; do we have health research units? That’s the only way we can improve our health system. We do not need to re-invent the wheel it’s already invented by those who are ahead of us. All we need to do is work towards that. Nowadays when people are hospitalised I hear them saying I know I am going to die, hospitals should save lives not become places of NO HOPE. We need to change that.
What does the future hold for you personally and Ambrose Academy?
The future is exciting MWF2018 has increased my network where I can learn from others and continue to improve myself. I was kind of losing hope with all the efforts that I have tried but now I have been ignited. As Ambrose Academy we will continue to raise the bar and ensure we remain relevant to bring value to Ambrose Academy children, even all other children in this country. We will soldier on and leave no stone unturned until our voice is heard…… GIVE CHILDREN WITH SPECIAL NEEDS AN OPPORTUNITY THEY ALSO DESERVE TO HAVE A BRIGHT FUTURE THEY ARE NOT DOOMED …..
Dr. Emily Shava explains the Antibody-Mediated Prevention (AMP) study
Enrolment is ongoing in the Antibody-Mediated Prevention (AMP) study. Tell us about that. What is AMP and how exactly does it work?
AMP is a multicentre study being conducted in different countries by two global networks known as HIV Prevention Trials Network (HPTN) and HIV Vaccine Trials Network (HVTN). The AMP study in Sub-Saharan Africa is enrolling women and is also known as HVTN 703/HPTN081 Study. Women because in Africa they are among those at highest risk of HIV infection because of their physiology and gender based imbalances. In this study broadly neutralising antibodies (Bnabs) known as VRC 01 are being studied to see to what extent they can prevent acquisition of HIV-1(efficacy) and to what extend VRC01 can be tolerated by participants (safety).
This is a follow up of previous studies which showed that VRC01 is generally safe and well tolerated (HVTN 104).
It is a double blind randomised placebo controlled trial. This means that participants do not choose which group they are to be on. The study has 3 groups, high dose VRC01, low dose VRC01 and a placebo group. They will NOT know which group they are in and the clinicians consulting them will also not know which group the participants are in. Only the site pharmacy personnel are unblended – they know which product is which. This is important to prevent bias. BHP has engaged and continues to engage various stakeholders (including Ministry of Health and Wellness, DHMT, clinics) and communities through the BHP community advisory board since 2015 when we were selected to take part in this important study. The success we are talking about now would not have been possible had the different stakeholders and communities not been on board.
What is your role in the Study?
I am the study coordinator for the project, responsible for day to day running of the study clinic. The person with overall responsible for the study in Botswana is the site investigator, Dr Joseph Makhema.
Who are the participants in the study? How many people are required and how many have you enrolled so far?
The participants are healthy HIV negative women at risk of acquiring HIV, aged between 18 and 40 years and willing to take part in the study. They should not be pregnant or breastfeeding and should be willing to use effective contraception to prevent pregnancy since the effect of VRC01 on pregnancy is unknown. In Sub-Saharan Africa a total of 1900 participants will be enrolled from Botswana, Kenya, Malawi, Mozambique, South Africa, Tanzania and Zimbabwe. 1555 participants have been enrolled as of the end of April. From Botswana a total of 150 participants will be enrolled.In Botswana the AMP study was activated in July, 2016. The first participant was enrolled on August 16, 2016. To date 236 participants have been screened/checked for eligibility to participate in the study and from these, 122 women have been enrolled and are on study as of May 4, 2018.
Willing participants provide written informed consent after discussion of all procedures, and their risks. The informed consent forms together with the protocol (document that explains how the study is conducted) and other pertinent documents for study conduct are submitted for approval by the Ministry of Health and Wellness, Institutional Review Board (IRB) known as Health Research and Development Committee (HRDC). This is the committee responsible for approval of research conducted in country.
What are the fundamental questions about HIV prevention that the AMP Study is designed to answer?
Are people able to “tolerate” the antibody without becoming too uncomfortable? Does the antibody lower people’s chances of getting infected with HIV? If the antibody does lower people’s chances of getting infected with HIV, how much of it is needed to provide protection from HIV?
When did it begin and when is it expected to end?
In Botswana the study started in July 2016.Total duration of study is 5 years. Each participant stays on study for about two years.
What HIV preventive care do volunteers receive and how are you ensuring the safety of study participants?
Participants come for study visits monthly. During these visits, we do what is called “history taking” from the participants to find out how they are feeling and have been feeling. We examine them and we conduct laboratory tests to ensure safety. To prevent HIV infection, we provide risk reduction counselling and HIV prevention package per Botswana Standard of care
What impact will this study have in the future of HIV prevention?
We generally liken HIV prevention options to a tool box. We currently have various behavioural modification options in this tool box, including abstinence, use of condoms effectively and consistently. It is therefore important to also add more biomedical interventions in this tool box. bNabs would then be an important addition if proven to be effective. This would lead to more combination prevention options. The idea of a toolbox with more tools in it is important because we know that when people have more choices, it increases the chances that an individual will find one tool that fits their needs and circumstances. Those decisions can be influenced by many factors – cost, ease of use, availability/easy access, partner agrees to use, etc. –so having more tools will mean increasing the chance of serving more people’s needs for HIV prevention.
How will the findings benefit Batswana?
I would say that it is too soon to say what direct benefit there may be to Batswana. This trial is about proving the concept that bNabs can prevent HIV. More trials will be needed to find the best antibody, or combination of antibodies, how to best administer them as a public health strategy amongst other things.
We know the strides science has made in the war against HIV/AIDS. There are very effective drugs and that is great news. But what do you say to young people that would say to you that it’s no big deal to get HIV and that there are already good drugs to control the disease as if it’s diabetes?
Prevention is ALWAYS better than cure. We are truly grateful for the strides that have been made in science to avail great treatments for HIV treatment. We do not yet have all the answers about the various great treatments available, time generally brings things to light. Additionally, prevention is more cost effective than treatment or a cure. (Note that in the question, diabetes isn’t cured – it is treated as a chronic illness.) That is important to individuals, and to countries/public health systems.
From your experience, do you believe that there will be an effective vaccine and/or cure for HIV in our lifetime? Is that an achievable objective you think?
Please note that in AMP study, the study agent VRC01 is NOT a vaccine but broadly neutralising antibodies (bNabs). This study could help us develop a safe and effective HIV vaccine more quickly. An HIV vaccine developed more quickly because of this study could essentially teach the body to make antibodies like VRC01 (without getting the VRC01-like antibody through an IV/drip). To develop a vaccine like that we need to understand more about how VRC01 may work, and how much is needed to “work” (to prevent HIV infection). This study should help us learn that. My answer on vaccine in our lifetime would be YES. The Thai Trial, RV144, showed us a vaccine regimen could reduce new infections by about 32%. That wasn’t strong enough to license, but it paved the way for a great deal of additional research. There are 2 efficacy trials currently underway in sub-Saharan Africa testing different vaccine strategies (one of which builds on the Thai results), so we have come farther than ever before.There are various international organisations with scientists whose main focus is the development of the HIV vaccine such as the HVTN, International AIDS Vaccine Initiative(IAVI) etc.
I understand that the HI virus lives not in the blood but lymph nodes and some organs. Is there any research
currently being done to try and flush out HIV from these compartments so that it can be killed by the antiretroviral drugs?
To clarify, when a person is on antiretroviral therapy, the amount of virus also known as viral load in blood will reduce. Generally, if a person is not on treatment the viral load will remain high. For people on treatment with low/undetectable viral load, scientists are looking into ways of flushing out HIV from its hiding places like the lymph nodes termed the “shock and kill” strategy.Currently I am not aware of any such study being conducted in Botswana.
HIV was around for decades before it was discovered and diagnosable and infecting humans during that period. Has anything been learnt from that to prevent a recurrence with another type of retrovirus?
This is a difficult question, yes human beings are capable of learning to better themselves in the future, to what extent, time will tell.
What good news can you give readers of this interview who are living with HIV/AIDS?
If someone knows they are living with HIV, it means they have been responsible enough to take the test and know their status. This needs to be commended. Currently we have available in this country potent antiretroviral treatment with minimal side effects, which means that people living with HIV can have improved quality of life, including sexual reproductive health and live longer.
I would also like to take the opportunity to highlight the importance of universal test and treat and for all HIV infected people to be on treatment and to take the treatment diligently. This is important because a persistently undetectable virus is not transmissible.
‘Merck More Than a Mother’campaign coming to Botswana in 2019
Pharmacist and CEO of Merck Foundation Dr RashaKelej, has made it her mission to raise awareness about the discrimination, stigma and ostracism women undergo for their inability to have a child. Here she discusses with SunHealth how her foundation is empowering women across Africa and other developing countries.
Dr Rasha Kelej, you are CEO of Merck Foundation, can you start by introducing the Foundation for us?
Merck Foundation is the philanthropic arm of Merck KGaA Germany. It is non-profit organisation that aims to improve health and wellbeing of people and advance their lives through science and technology. Our efforts are primarily focussed on raising awareness about non-communicable diseases, empowering women and youth, improving access to innovative healthcare solutions in under-served communities, building healthcare and scientific research capacity in the fields of diabetes, hypertension, cancer and fertility care in underserved communities. Our vision is to see a world where everyone can lead a healthy and fulfilling life.
You will be launching the ‘Merck More Than a Mother’ campaign in Botswana in 2019. Can you discuss when this launch is expected to happen and what it will entail?
We will launch in Botswana sometimes in the first quarter of 2019 in partnership with Her Excellency First Lady of Botswana Madam H.E. NEO JANE MASISI, and ministry of health of Botswana. We will first launch the Merck more than a Mother campaign with Her Excellency as the Ambassador with the aim to empower infertile women through information, health and change of mindset.
As part of the campaign we will call for application for media recognition award of Merck more than a Mother. And we will also train media about health reporting and sensitive issues reporting such as infertility. We will also launch the start of producing a song about infertility stigma and sensitising the community to break its stigma.
In addition to providing training to doctors in the fields of fertility care and oncology we will also launch a pilot project called blue points where we will provide one year diabetes diploma to doctors to build Health care capacity in the country. Our vision is to develop a strong platform of specialised doctors to improve access to quality and equatable healthcare solutions in Botswana.
When did this campaign start? … What makes “Merck more than a mother” such a unique campaign and how do you hope it will be embraced by relevant stakeholders?
We started Merck more than a mother campaign in 2015 first in Kenya then Uganda and the rest of 35 countries in Africa and Asia.The campaign is an exponential success, the ambassadors of Merck more than a mother, The First Ladies of many countries, are very active and increasing every year. We have partnered with ministries of health and academia of many countries who are working closely with us.
The social media followers and videos viewers are in millions. Merck Foundation has trained more than 100 fertility specialists over the last two years in more than 30 countries in Africa and Asia. Thousands of women are sharing their stories of suffering every day; African media has started to discuss the issue every day, and we also worked with singers to write songs and produce video clips about infertility and delivering the message to all communities, since in many cultures infertile women suffer discrimination, mistreatment and physical and psychological violence. We have also supported the establishment of first ever Public IVF centres in Rwanda, Ethiopia and Uganda.
The Foundation seems to be so fond of Africa why the interest, many will ask? How do you settle on the choice of health needs or area and the countries that you engage with in Africa?
Prof Frank Stangenberg Haverkamp, the Chairperson of E-Merck KG and Merck foundation is very fond of Africa and believes in its potentiality. Furthermore, there are many challenges in Africa with regards to healthcare and this is our speciality we can help, and this is what we do and we do it well. But we also focus on Asia, we have programmes in many countries such as Sri Lanka, Bangladesh, Nepal, Myanmar and Cambodia; and we will expand to Latin America in 2020.
There was also the first Merck Health Media Training in Kenya to break the stigma around infertility in Africa, may we know the reason behind the focus on infertility and liaising with the media?
According to WHO data 2016, one in every four couples in Africa and developing countries are infertile which means that there are 180 million couples that are infertile. Incidence is much higher than in Europe and developed countries which has around maximum 8% to 9%, very high percentage of infertility due to untreated infectious diseases which result from child marriage, unsafe abortion, unsafe delivery, STDs and genital mutilation. Hence prevention is very important.
More importantly, in many cultures women suffer discrimination, mistreatment and violence due to their inability to bear children, although 50% of infertility cases are due to male infertility, therefore we need to create a culture shift to respect women whether they are mothers or not, encourage men to speak up about their infertility and support their wives through the treatment journey. I strongly believe in the power of art and media.
They are critical partners to address such sensitive topics. We have produced many projects of songs, and now we are going to produce drama (plays and documentaries) with African talents across the continent. It will be the first and we will be creating a culture shift, raising awareness and exploring African talents.
We started “Merck More Than a Mother” campaign in 2015 now it is in 35 countries in Africa and Asia. In partnership with First Ladies who are the ambassadors in their respective countries, academia, ministries of health and international fertility societies, the initiative also provides medical education and training for fertility specialists and embryologists to enable them to help and treat infertile couples in their countries.
Also, part of the campaign is our Merck Embryology & Fertility Training Programme, a three-month hands-on practical course to establish the platform of fertility specialists across Africa and Asia. Merck Foundation provides clinical and practical training for fertility specialists and embryologists in more than 35 countries across Africa and Asia such as: Chad, Niger, Central African Republic, Cote D’Ivoire, Ghana, Ethiopia, Uganda, Kenya, Tanzania, Zambia, Nigeria, Benin, Mali, Burkina Faso, Senegal, Guinea Conakry, Sierra Leon, Liberia, Cameron, Rwanda, Botswana, DR Congo, Congo Brazzaville, Gambia, Nepal, Sri Lanka, Bangladesh, Myanmar and Cambodia. So far more than 80 candidates have taken the training.
How do you envisage the future of health care in Africa and the partnerships that Merck Foundation is forging across the continent?
I think the future will be brighter if we cooperate together. The magnitude of the health challenges are very big to be addressed by one organisation. The secret is in the private public partnership and to really get things done by being hands-on. No time for talking anymore. We need to talk only when we talk about our impact and way forward.
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