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The survival rate of hemophilia patients in Nigeria has increased – Says Prof. Nwagha

Prof Nwagha:  Leading the war against hemophilia in the South-East

 On April 17, 2024, Nigeria joined the global community to commemorate this year’s World Hemophilia Day.  According to the Centre for Disease Control and Prevention, Hemophilia is usually an inherited bleeding disorder in which the blood does not clot properly.

 In this interview with Mike Ubani, Theresa Nwagha, a professor of hematology, as well as director, South-East Hemophilia Treatment Centre, University of Nigeria Teaching Hospital (UNTH) Ituku Ozalla, Enugu, Enugu State, explains the significance of the day, as well as unveils the current status of hemophilia in the country.

 Prof. Nwagha who is also the Vice President Medical, Hemophilia Foundation of Nigeria, and Chairman, Medical and Scientific Advisory Committee of the same Foundation, says the treatment of hemophilia patients is expensive and, therefore, appeals to the Federal Government to start procuring products for the treatment of the disease.

Excerpts.

What is the significance of April 17?

April 17 happens to be a very special day in the bleeding community. We like to use that term bleeding community to connote those that have bleeding issues, bleeding disorders – not only those that have bleeding disorders, it even involves the healthcare professionals that takes care of those that have bleeding disorders.

So, it’s a very special day in the hemophilia community when we come together and celebrate hemophilia and other bleeding disorders.

We use this day to draw attention to both the plights of persons living with hemophilia and other disorders, and also engage the stakeholders to be able to generate policies that will ensure that those that have hemophilia and other bleeding disorders have access to treatment products.

What is the theme of this year’s World Hemophilia Day?

The theme of this year’s World Hemophilia Day is “EQUITABLE ACCESS TO ALL.”   It means that any person that has bleeding disorder – Hemophilia or other bleeding disorders, no matter who you are,  your gender, the type of disease you have,  your age,  your financial status, and  the country where you live, you should have equitable access to treatment.

So, you can agree with me that it’s a very well-loaded theme, and this day is a very special day in the bleeding community.  So, that’s why I am actually here to talk about it – to raise awareness, and also for advocacy to those key stakeholders in the health space to know how we can improve on the management of persons living with hemophilia in Nigeria.

Do we have specialist hospitals where persons living with hemophilia can be treated?

Oh yes.  Thank you for asking me that question because its very important that those who have these disorders know where to go for help.  So, we have what is termed hemophilia treatment centres.  These are centres within tertiary hospitals that offer comprehensive healthcare services to persons that have hemophilia and other bleeding disorders.  I also mentioned that I am the VP Medical, Hemophilia Foundation of Nigeria.  So, Hemophilia Foundation of Nigeria with the help of the World Federation of Hemophilia, have established twelve (12) of these hemophilia treatment centres all over Nigeria.

So, here in Enugu, we have the South-East Hemophilia Treatment Centre, domiciled at the Department of Hematology, University of Nigeria Teaching Hospital (UNTH) Ituku-Ozala.  This South-East Hemophilia Treatment Centre, offers comprehensive health services to persons living within the South-East geo-political zone and beyond that have hemophilia and other bleeding disorders.

  Hemophilia patient

What are the symptoms of hemophilia?

Thank you again for that question.  Now symptoms of hemophilia are quite distinct.  Recall that hemophilia is an inheritable disease condition that is characterized by bleeding symptoms.  And this bleeding arises as the deficiency of one of the clotting factors in the body.  And the commonest clotting factors are factors 8 and 9.  The absence of these clotting factors within the body are responsible for the main characteristic symptom or feature of persons with hemophilia.  Their blood cannot clot, and the pattern of bleed for persons with hemophilia is not a dramatic versatile loss of blood.  Rather, it is the gentle ooze – the person is not in pain – its just that the person has an injury, and the blood keeps oozing and oozing. But people may not initially attribute importance to that but for the fact that the blood is not clotting, the person will tend to ooze away the blood body.

Another important thing we need to note about hemophilia is that it can bleed without injury, and that is what we call spontaneous bleeds.  And one of the main sites of bleeding is that they bleed into the joints.  Many a time, persons with hemophilia or their care givers don’t know what the issues are.  They can term the swelling of the joints to be pain, and inability to move as arthritis, and for years they will be treating arthritis; taking the individual to bone setters, and doing massage.

Most times, if not all the time, that could lead to worsening of these symptoms.  So, recapping, symptoms of hemophilia is that they bleed.  So, the bleeding can be visible or can be non-visible.  And they can bleed into cavities, and one of the most common cavities they bleed into is the joints, and the commonest site is the knee joints.  And so, many a time, you see them having swollen joints, and not been able to walk properly, and also, they have some disfiguring of the joints because of the repeated bleed in that joint.

And they could also bleed into the muscles and they can sometimes have life-threatening bleeds when they bleed into the brain.  So, normally the mantra is that for every hemophilia or anybody that has been identified as having hemophilia complains of headache.

Can bleeding start in the body without having an injury?

Yes, it can.  That is what is called spontaneous bleeding. Many persons with hemophilia will tell you that they are okay.

Symptom of hemophilia

What part of the body does this bleeding occur?

Anywhere. They normally tell you that they are okay.  They sleep, and wake up with swollen joints.  Or sleep and wake up with a swollen arm, swollen knee joints.  The point is that they bleed into some joints more than the other.  In fact, I have had patients of mine bleeding into the eye just because they watched television or their phones for a very long time.  I have had some of them bleeding into their buttocks just because they sat for a very long time.  Or some will bleed into the small joints of the fingers or the toes, or even the ankles.  Name it.  They can bleed from anywhere.  They can bleed into organs.  I remember a patient of mine that the mother smacked him across the eye, and he bled into the eye.  They have this propensity to bleed, and they can bleed into anywhere, though some sites are more common sites of bleeding than others.

Are there special events mapped out to celebrate this year’s World Hemophilia Day?

The World Hemophilia Day is a global event.  If you go online, go to the social media, every country is celebrating World Hemophilia Day.  In climes where it has been established, they normally paint the town, or significant monuments in the country red.  So, when you come to Nigeria, lots of activities are going on in the different treatment centres.

Some People are holding interviews like I am doing; people are going to speak on radio to increase public awareness about the disease.    In my hospital at Ituku, we did an awareness march round the hospital to sensitise people about hemophilia.  People will organize webinars to educate healthcare professionals about hemophilia; go to the radio for advocacy with the key stakeholders.  So, a lot of activities have been mapped out, but if you ask me, I will tell you that activities surrounding hemophilia management, treatment, should not just be on the World Hemophilia Day.  It should be an ongoing set of activities all year round because as you can see, we still have a lot of work to do here in Nigeria; engaging our government, key stakeholders nationally and on the state level; engaging our healthcare professionals to ensure that these persons with hemophilia and other bleeding disorders have global standard of care, notwithstanding the fact that they are living here in Nigeria.  The World will stop today (April 17) for hemophilia, and they will paint the town red.

What is the level of awareness of hemophilia in Nigeria or in the South-East where you operate?

What I can tell you is that I have been a treater for hemophilia in the past decade and half.  And I can tell you that sometimes the progress is appreciable.  But sometimes, it is quite slow.  But I can confidently tell you that where we were 15 years ago, is not where we are now.  For example, 15 years ago, we started the South-East Hemophilia Treatment Centre with just a handful of patents.  But now, we have about 70 persons registered with the treatment centre receiving care for hemophilia, and that is not all.

These are the ones that have been identified.  Now, the awareness is on the rise, but it has not peaked yet.  The general populace does not know about this hemophilia, but I can confidently tell you that it is not as bad as it was 15 years ago.

Do we have enough medical personnel to handle hemophilia patients?

If you had asked me this question about five years ago, I will tell you that we had more than enough. But you and I are quite aware of the ‘Jappa’ syndrome that has hit the health space, and that has also affected arsenal of skilled healthcare professionals that have been trained over the years to manage hemophilia.

Right now, in my centre, when we started 15 years ago, we have been able to increase awareness – We have been able to get a lot of healthcare professionals trained, but that has also dwindled, and we have also hit the zero mark.  A lot of these trained professionals have left the shores of this country to seek greener pastures elsewhere.  But I can tell you that in the hemophilia space, one of the things that we are advocating, and the messages that we are sending to treaters in the different hemophilia treatment centres is for them to have a succession plan.

You must be able to train people that will take over from you.  I can gladly tell you that when I started at the UNTH, I was just about the only consultant.  We had many consultants with different interests, but I was the only consultant that had a bias for persons with hemophilia, and bleeding disorder.  But I can tell you today that we are up to five consultants that handle hemophilia and other bleeding disorders.  And we are still training to increase that number.  So, let’s say if I or any other consultant decide to ‘Jappa’ today, our patients won’t suffer.

Hemophilia patient with swollen knee

What kind of support is your centre getting from the federal, state governments and donor agencies?

It is sad for us to say that we’re yet to get the support that we need from the federal government in terms of procurement of treatment products.  But the government in all fairness has been supporting in the terms that they have now added hemophilia and other bleeding disorder unto the portfolio of non-communicable diseases.  Initially, it wasn’t there.  So, right now, the federal ministry of health recognizes hemophilia and other bleeding disorders as one of the non-communicable diseases of public health importance.  But we need more.

The federal ministry of health and the federal government should actually shine their light of support to the plight of persons living with hemophilia.  The treatments of persons living with hemophilia are very expensive.  Right now, we’re one hundred percent dependent on the humanitarian aid donation of the World Hemophilia Federation.

Every treatment product that comes into this country for now is a donated product.  They are very expensive, but you know that donations are not sustainable.  Once donations dry up, then all the impacts, all the advances, all the progress you have made with hemophilia will within months, go down to point zero.  And that is what we don’t want to happen.  So, its time for our governments to step up and assure persons living with hemophilia in Nigeria that they matter.  Its time for our governments to step up and start procuring products for the treatment of hemophilia.  That is the only way we can ensure and assure the survival of persons living with hemophilia.

What is the rate of survival in Nigeria?

The survival rate in Nigeria has come up. Within the last five or ten years, it will be a miracle for you to see a hemophilia that lived up to the age of 30.  But now, I have patients who are 65 years, patients of 40 years – so hemophilia patients are surviving more, all thanks to the donated products coming from the humanitarian aids programme.  Imagine if we are a country that procures products, and we keep them on a sustainable treatment programme, definitely the survival age will go up.  But now, it is not what it was 15 years ago.  But we are not there yet.

So, there has been an improvement?

Yes, but we can improve more if our governments start procuring treatment products.  But now it is still going at a snail speed.

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