Hello and welcome to the AfroSickleNet Blog!
Following the inception of the AfroSickleNet Project in October 2013, a lively debate occurred between the various investigators in the US and those of the collaborating centers in Ghana, Nigeria, Cameroon and Kenya. This debate focused on the challenges associated with carrying out research on the African continent, and explored ideas to move the practice forward, as well as on how to make the essential step of translating research findings to patient care. Following is a transcript of the conversation:
02/04/2014
Dear Colleagues,
I hesitate to speak up first as a person who is still planning his first trip to Africa, but I suggest that highest priority studies to be conducted in Africa should be those that lead quickly to better treatment of sickle cell disease. The huge numbers of sickle cell patients and resource-poor collaborating centers should gain direct health benefits from research. I certainly value basic and translational research and I devoted a lot of my career to bench research. However, I think that basic and translational studies can be ancillary to clinical work or clinical trials.
Sincerely,
Lewis Hsu, MD, PhD
Lewis,
First, let me say I appreciate you this on the table. There could be no better use for this forum than to discuss this issue. It’s simply intellectually dishonest and morally inexcusable not to struggle with this question.
Let me try not to wrap my argument up into some convoluted logic. Most people on this list are biomedical scientists, and we make our living off of NIH grants. We hope, at least in the long run, that our work does something to improve health, but in truth most of us - aside from trials - see very little of that. I have spent a lot of time studying the genetics of hypertension in Africa. . to what end? But at the same time most of us don't have access to any financial resources other than grants. So - speaking again for myself - the choice is to try to do as much as we can to improve the science and practice of public health and medicine in Africa at the margins of our grants - that is, some training of new scientists, building awareness through papers, professional organizations, etc. But we know that has little impact. At the session on sickle cell organized by the NIH 2 yrs. ago at ASH in San Diego I tried to make the point that research in Africa that would make a difference must take on the task of improving care - if just to make it possible to collect high quality data. Some of you who were there may remember that the NIH Director rose immediately to make it clear to those with any delusions, that job is not the NIH's mission. We could just step off the NIH treadmill, but then what do we bring to the table? Some of us will have the resources, the clinical skills, and political influence that make it possible to improve patient care, but most of us don't. And there are innumerable small scale volunteer organizations operating in Africa, and on the whole they do a lot of good, I don't see that as our role.
In the end, I think - most of us at least - will have to contribute with the skills and influence we have - namely biomedical research. We need to use whatever influence and resources we get through that means to make a lot of noise and put sickle cell much more on the agenda. At the same time, I agree entirely - we should challenge ourselves to use our privileged positions to do more. From what I know - I think the work that David Weatherall has done for inherited anemias is an excellent example. Or Graham Serjeant's contribution in Jamaica. The work that KOF and others are doing on newborn screening and studies of infection in Ghana are in the same category. The Doris Duke trial in Ibadan should make some small impact on patient care and the work now started in Kumasi should have an even bigger pay-off for patient care.
But this group was assembled to write a grant. . or 2 or 3. Within that structure, as originally conceived, attempts to directly improve care will remain at the margin. How do we change that, and where could we get resources to do more? Without an organizational base, say in a professional society, or some formal program, like PEPFAR, I'm not sure what we can do.
But I am sure that others on this list will have useful ideas about how we could do more. The best I can come up with is to try to create "Centers of Excellence" at the universities where we are connected to improve training, build the capacity to deliver - as close as possible - standard of care as practiced in the US and elsewhere, and develop lab capacity. I know in other field’s conferences and short courses in clinical up-dates have been used, and if we had the funds we could do that. Personally I favor putting effort into Centers of Excellence first.
But, having said all that, I think it is patently obvious that I am not the person best qualified to address the question you raise. I very much agree that the best outcome would be to move forward on 2 parallel tracks - one based on NIH-funded research and one devoted to improving diagnosis and care. I think I can do something useful about the former, but not the latter.
Open for comments . . .
Richard Cooper, MD
Hello ALL:
I just arrived from Ghana yesterday to be welcomed by yet another snow storm to hit the northeast. Solomon and Kofi Anie arrived in Ghana to continue research planning with Ellis just as I was getting ready to leave. They deserve their escape from Pittsburgh freeze and London cold rain, respectively.
In this chill, I am warmed by this lively discussion. Lewis' point is well taken but I believe the responsibility of research investigators is to pursue questions that ultimately lead to improved health care. Sometimes, research investigators get the opportunity to conduct clinical trials the results of which may lead to improvement in clinical care.
From my knowledge, the major problem facing people with SCD in Africa is failure of governments to see SCD as a major public health issue. For example, newborn screening and anti-microbial prophylaxis of young children with SCD are interventions by most African countries. The fact that no African country has fully implemented these interventions is because the public health services have failed to recognize the impact of SCD on child mortality. That situation can hardly be blamed on the biomedical research community.
It clearly takes another set of skills and tolerance to convince a Minister of Health that an intervention such as newborn screening for SCD is as important as HIV prevention. HIV prevention comes with millions of cash, dozens of vehicles and other perks from international donors; newborn screening for SCD is not supported by any major international donor organizations. Perhaps we could recruit marketing experts to find ways to sell such proven interventions to African governments.
It is always difficult to target the outcome of basic research as important findings often lead to unintended and unexpected benefits. Most clinicians in Africa do not implement penicillin prophylaxis because they are either unaware of the published research on the subject or, they do not believe that the findings of a study conducted in the US apply to Africa. Is it the responsibility of the NIH to "sell" the results of the Penicillin Prophylaxis Study to developing countries? Perhaps, but, soccer fans in Ghana are as fanatic about the English Premier League as are the diehard fans living in Liverpool. One would expect that SCD fans in the clinician communities in Africa would devour research findings applicable to their patients as much the soccer fans do the scores and intricacies of the EPL.
Engaging young Africans in biomedical research - basic, translational, or clinical - can help enhance the atmosphere that will encourage African clinicians to see directly the benefits of research in their work. If research is conducted only by "foreign" scientists, it is likely that African clinicians will believe that their work derives no fruits from research no matter how low those fruits may be hanging.
I would urge us to proceed on all fronts of biomedical research as long as we include African collaborators in planning and execution of projects, African subjects in clinical trials, and African trainees to learn how research questions are developed and answered. The reality on the ground will dictate how public health services will be provided.
Lewis, you are welcome to visit Ghana where I am working with the 16th Minister of Health in 18 years of developing the newborn screening program! That is a challenge beyond all of us.
Kwaku Ohene-Frempong, MD
This is a great discussion.
NIH mission is clear. Labs based outside Africa have set their missions too. A network such as this is being pooled together to write a research grant. I believe the idea should proceed considering the mission of the potential funding sources.
As researchers from Africa, we should set our mission considering our potentials. Having a common mission, can enable us work with other collaborators outside Africa. As a network, we can also be able to apply for grants that may have direct benefit to the people from other foundations.
I just feel that as researchers from Africa, we should do more to demonstrate our commitments. One way is to start "A Regional Centers of Excellence" and this center can collaborate or sign a MOU with any local university and hospital to offer short courses such as a genetic counseling or medical genetics. Starting a program like this will have a huge benefit to the people in terms of prevention of genetic conditions, with a center working closely with the hospital and university; we can also be actively involved in biomedical research that fits the mission of NIH and others.
I am really keen to know what is going on in Ghana and Nigeria and other African countries as far as their own initiatives are concern. Sharing this can enable us come up with a common mission. I am very sorry to say that we have done very little in Kenya.
I am also keen to know thoughts on starting some "Centers of Excellence". What could be the structure of this center so that it remains focused on its mission?
As noted, research aims at improving patient’s conditions and I feel selection and population genetics have not been exploited to identify drug targets for sickle cell disease and I feel idea in the first discussion paper has a lot of potentials.
George Ayodo
Dear all,
A few personal anecdotes: when I met Stylianos Antonarakis (that described the origin sickle haplotypes...) for an interview as medical genetic intern, he asked me if African/Cameroon doesn't had others priorities than Medical genetics specialists...My answer was 'if genetics was good for Switzerland it should be good for anywhere...in addition, he will need to train me so that I could appropriately evaluate the need of medical genetics in Africa'...he smiled and said you have the position...
Our first lab in Yaoundé was developed on the back of HIV prevention program; we couldn't convince the Minister to have a lab for molecular diagnosis of monogenic disease..., but he was ready to fund a lab to apply molecular technology for diagnosis of HIV in the scheme of prevention of vertical transmission and transfusion security...
We then used the available equipment (for HIV initially) to develop the molecular diagnosis of SCD before birth, as a point of entry of genetic Medicine in Cameroon. The Genetic unit, created in 2007, has developed beyond the HIV molecular detection and SCD, at least two other on-going programs that have a direct impact on prevention and treatment of diseases (National urogenital malformation program and congenital of hearing loss program...). On the training front at least 10 MD thesis, and three current trainees in Genetic medicine to ensure sustainability...Of course this is a very modest experience and not always easy journey, as we were forced by the circumstances to strategically retreat to South Africa, but keeping in mine our ultimate goals...
I'm strongly convinced that equipping Africa and African based scientist with advance skills in biomedical research, to serve the purpose of public health priority like SCD, will have a direct impact on care and prevention non only of SCD but of various other conditions...Biomedical research will not solve the all problems of care SCD patients in Africa, but without biomedical research many problems of SCD care will not be solved in Africa.
The critical issue here will be to make sure that, at all the stages, capacity is built and the community is engaged in each and all the performance sites. Civil society is full of vibrant and very committed people here, who could serve our SCD advocacy cause. Training and Community Engagement should be budgeted from the early beginning to ensure this endeavour. The NIH and other funders should be sensible to this.
Prof. Ambroise Wonkam, MD, DmedSc
02/05/2014
Great point about engaging young Africans in all of our research.
Victor R. Gordeuk, MD
02/06/2014
Ambroise,
That's more than an anecdotes, it’s a short story that captures much of
the reality of this experience. I certainly agree, and it is obvious
that much of the progress, certainly in genetics, has come from engaging
young African scientists.
At this point we have progressed well beyond Lewis's opening remarks. I
think the point was well made by KOF, however, that progress in
advancing patient care will be slow. We need to constantly look for
opportunities but accept reality and be patient. I think one of the
useful things we can do immediately is provide training for clinical
care, such as ultrasound etc. But that will have to be supported by
each of our institutions somehow.
It may be premature but I think it should be possible to spell out the
concept of a Center of Excellence as George discussed. If there are
volunteers who would like to join me we could pull together a draft
statement on what that would look like. I think we already have the
pieces, but they are scattered across the clinical sites and there is no
immediate candidate for such a Center at the moment. But having a clear
idea of the concept would help - who knows, we might sit next to Bill
Gates on the plane someday. (Oh, that's right; I guess he flies in his
own plane.)
One other idea I would like to propose. I know there are several
projects that have been discussed that are at a point where a small
scale or pilot study could be started. (E.g., Neil's idea about selection
and SS, assessing HRQL, assessing hemolysis physiology). If someone
wants to come forward as the leader/PI of a pilot I think we at Loyola
could handle the logistics (IRB, sample collection etc.).
Finally, Ambroise makes the point that we need to involve new young
eager scientists/clinicians. Can I ask those of you at clinical sites
to think hard and see if you have a candidate? If you did, we should
form a separate group to discuss their training needs and see if we can
invent a plan to help them win that trip to Switzerland like Ambroise
did.
Richard Cooper, MD
