Julie Makani

“I was always told that building a scientific career was about securing grants and publishing papers, not improving health care or engaging with policy-makers. And when I questioned these assumptions, saying I wanted to impact health care directly, some people questioned whether I was truly committed to being a scientist.”

“From researchers’ point of view, the sad reality is that there is little incentive to go into the field and this has been the case for decades. When I completed my clinical training in the late 90s and expressed a desire to work on sickle cell disease, people said: “Why would you enter a field with no funding, no opportunities and no future?””

“Don’t feel pressured if you are a young scientist or clinician in Africa. If you want to do a particular field of study – do it.”

“The process of research is learning, unlearning and re-learning. We need to have the humility and willingness to learn from others and realise you need to re-think what you know.”

“"I think it is very important when you are working on a disease to work closely with the people who are affected by it."”

“My goal is to become involved in health policy and advocacy, to try to make decision makers understand why they should invest in sickle cell disease.”

“Two or three of my colleagues left science because they didn’t get the right opportunities at the right times. These are brilliant people, now stuck. It’s a big loss. This is one of my regrets. I wish there was a way of identifying talent and getting those people more into pure science.”

“The danger for an African scientist, because there are so few of us, is that you end up taking administrative positions, or leadership positions when you are not ready yet. You can end up being caught in a position where you can’t learn, you can’t mature, you can’t be a proper scientist – whatever that really is.”

““Mothers who have lost children now know their lives mattered."”

“But I like to look at the prevalence of sickle-cell disease as an advantage – this is an opportunity where we can learn about malaria and genetic disorders. That’s how I try to look at it. Because it can be overwhelming, when you’re dealing with all the patients, with very few resources.”

“There is almost minimal investment in research and development in not only Africa, but many third world countries. You need the industry to invest in science, as well as governments and philanthropy.”

“We are not making science for science. We are making science for the benefit of humanity.”

“The ultimate thing for me, particularly as a physician scientist, is not just discovery, but also seeing the application of knowledge…into an improvement in health.”

“By using gene therapy, if sickle cell disease can be cured, it would then be possible to apply the knowledge to other conditions that are more complex. However, you can’t have a gene therapy for an African disease developed outside of Africa because it is inappropriate from an equity perspective”