The NS Interview: Julie Makani, tropical medicine researcher

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

Why choose to research sickle-cell disease?
It has hardly been recognised from a public health perspective, but the burden of sickle cell is becoming increasingly visible. In Tanzania, about 8,000 to 11,000 children are born every year with sickle-cell disease and the majority don't know they have it, so up to 90 per cent are not likely to survive into adulthood. In 2010, it was 100 years since it was discovered and there's only one drug licensed for use.

When did you decide to become a doctor?
Quite early. My mum's a nurse, but also I come from an area where sickle-cell disease is very prevalent. I have cousins who have been affected; of five of them, three died from the disease. I actually first spent three years working on malaria. My father said: "You should have started on sickle-cell disease earlier . . ." Not that it would have made much of a difference.

Carriers of the sickle-cell gene [who carry a single copy; sufferers have two] have a natural resistance to malaria. There's a horrible irony to this, isn't there - that you can be healthier and yet pass on a disease to your children?
You can perceive Africa as a kind of basket case or a place that should be pitied. But I'd 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.

In your line of work do you need a certain type of personality?
Absolutely. Because you are questioning facts you need lots of perseverance, to be tough. And you definitely need to be optimistic.

The pharmaceutical company Pfizer earned revenue of $68bn in 2010. Do these companies invest enough in African scientists?
No, that's the tragedy. 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. If it hadn't been for the Wellcome Trust having this long-term approach to science funding, it would have been very difficult for us to do what we have been able to do.

What is it like, working in a profession dominated by men?
I am very much aware of that. It's tough, very challenging. One of the things which makes a big difference is having successful women mentors who understand things like balancing child and family life with work. This then allows me perspective and the ability to focus on important things.

Does music have a therapeutic role to play in medicine?
If one looks at suffering with sickle-cell patients, pain is one of the most common debilitating factors. Music allows patients a chance to communicate in a different way, which is quite powerful, I think.

Is there anything you regret?
Yes. 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.

Do you vote?
Yes, enthusiastically. Both my parents are very political. I've taken the approach that I want to change things from the bottom up, which is why I've stayed in the ward. But there is definitely a role for political leadership.

In science in the UK, it's very . . . patriarchal - it discourages fast-tracking. Very often I was told: "You are not ready yet."

Do you think the way of working over here can be too traditional?
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.

You find as an African that, by the time you finish your PhD, you are asked to take on these new roles on committees or as a department head, which is good, but also bad because it takes you away from science.

Was there a plan?
Yes. I was very clear I wanted to train in the UK and then develop my career back home. I would really like to retire at 50 and run centres of
excellence in Tanzania where we can make an impact. This is my dream: training the next generation of scientists.

Are we all doomed?
Not at all! There are a lot of problems, but there is a lot of success.

When you talk to mothers who have lost their children, they know the life of that child has mattered when we learn and progress. The memory of the child will continue.

Defining Moments

1970 Born in Tanzania
1994 Graduates as a medical doctor
2001 Becomes Wellcome Trust fellow in department of haematology and blood transfusion, Muhimbili University
2009 Gains PhD from Open University
2009 Awarded a place on Archbishop Tutu Leadership Fellowship Programme, run in conjunction with Oxford University
2011 Wins Royal Society Pfizer Award for her research into sickle-cell disease