A former coordinator, Lagos State Chapter of the Network of People Living with HIV/AIDS in Nigeria, Mr. Ibrahim Umoru, who has been living with the virus for about 15 years, tells ARUKAINO UMUKOROabout managing one’s positive status
When did you discover you were HIV positive and how did you take the news?
I found out that I was tiring easily and losing some weight. Hence, I went for several tests. Then a doctor friend of mine encouraged me to go for an HIV test; which I did and it came out positive. Then, getting tested was very expensive and the only place one could get care was a tertiary hospital where one was referred to. I went to the Lagos University Teaching Hospital. That was many years ago. Previously, I did not have as much weight as I have today. Now, I have gained weight.
How long have you lived with HIV?
I’ve lived with HIV for about a decade and a half now.
How have you been able to live well despite being HIV positive? Do you have a special diet regimen?
I eat anything that is food. What some people don’t understand is that the major hurdle to cross with HIV is emotional and psycho-social. That is why we tell people that stigma and discrimination kill faster than the virus. I think I am very fortunate to come from a very loving family. I am very well received by my immediate family. I didn’t get issues there. I do good exercise and I am a very active person. I eat well. But, most importantly, I adhere to taking my drugs religiously. I go around with my pill box daily. I take my morning and evening doses. I don’t miss taking my drugs. To me, this is my first identity card. I also ensure I rest well. The main thing of succeeding with living with HIV/AIDS is accepting one’s status. When some people are told they are HIV positive, they would simply say, “It’s not my portion, I reject it.” Whose portion is it or who is going to accept it? So, if a person gets to that threshold, that person needs to accept that they are HIV positive, and do what is necessary. Also, that person should avoid re-infection or secondary infection. They should eat well, do regular exercises, follow the self-monitoring, let the doctor become their friend and visit the hospital regularly. For about 13 years now, I’ve not been on admission in the hospital. Last month, I went for my normal quarterly investigations and one doctor friend told me I was looking healthier than persons who didn’t have HIV. Thus, with HIV, one can live life wonderfully and graciously the way one wants it. HIV is not a death sentence, like some people assume. Maybe it was some years back, when there was no proper management and treatment. But now, with the availability of good treatment and better understanding, it’s no longer a death sentence, but a manageable health condition.
Are you married?
Yes, I am married with children. My first son is over 27 years old. I had him before I got to know my status. My family is doing fine. None of my children is HIV positive. I even had a child during the post-infection years, he is a six-year-old now and he is negative. Prevention of mother-to-child transmission is the biggest effort I’ve seen in HIV response. Today, HIV-positive women can now have children who are not HIV-positive. Prevention of mother-to-child transmission of HIV is the only intervention in HIV response that can be measured successfully from the beginning to the end. It can be managed before and during pregnancy. Within six weeks, when Early Infant Diagnosis is done, and the child is HIV negative, the process has succeeded. Unfortunately, Nigeria is performing so low in this area of Prevention of mother-to-child transmission, when compared to other countries globally.
What do you think is responsible for this?
One of the issues we have not got right is the issue of enlightenment. How many women attend ante-natal clinics? A lot of our women still feel comfortable with traditional birth attendants. The government needs to incorporate these traditional birth attendants into our HIV response. They should be well-trained. We need to support the men also in this area and get them involved in the forefront of the process and to give support their women.
How would you describe the management of HIV/AIDS in Nigeria today compared to say, 10 or 15 years ago?
The situation is a lot better today than it used to be. Years back, there were no anti-retroviral drugs for people living with HIV/AIDS. Also, where the ARVs were available, they were quite expensive. Most people could not access the drugs. In my case, I got my first ARVs from LUTH. I remember the doctor, now Professor Akanmu, who stood by me all through. He was very pleasant and friendly. He prescribed my first pill of ARVs. Anytime I see him, I always tell him jokingly that he sentenced me to ARVs. Gradually, along the line, we now had access to more ARVs. I was then a member of AIDS Alliance in Nigeria support group and there was a pharmaceutical company that supplied these drugs at a subsidised rate. I got the drugs at that subsidised price. Before then, I had already gained employment with firm which took over my treatment and I stopped paying for or buying drugs. However, on the national level, it was not that easy for most people. Even when the drugs was subsidised for N1,000, we conducted a study and found out that many people were missing treatment because they couldn’t afford the cost. I was privileged to be among some of my peers, who presented this issue at the national treatment summit of July, 2005. In January, 2006, former President Olusegun Obasanjo rolled out free comprehensive ARVs for 250,000 Nigerians (People Living With HIV/AIDS). That was the biggest ARV programme in Africa then. It helped to improve access. Care was also available and things started getting better.
How would you rate the availability of treatment for PLWHA in the country today?
To be honest, there has been a great improvement in that direction. Presently, on the national response, we have support from partners like the US, global funds, and the Nigerian government. That’s how Nigeria has been able to put about 649,000 PLWHA on treatment. Currently, Nigeria has about 3.5 million PLWHA. In view of the World Health Organisation threshold, about 1.8 million Nigerians are supposed to be on treatment. Having placed 649,000 people on treatment, I think there is still more work to be done.
What about the complaint in some quarters about the lack of access to ARVs?
The government should expand the pool of caregivers who understand the skills that are necessary to manage HIV and preventive mother-to-child transmission. Also, for an epidemic of this level, it is wrong to allow our national response to be donor-driven. There are about 35 million people living with HIV globally. With about three million people living with HIV, Nigeria is carrying the burden of about 10 per cent plus of the global burden of HIV. Because of this, government needs to do more for People Living With HIV/AIDS.
What has changed about society’s perception of HIV/AIDS in the country compared to the early years?
A lot has changed. In those first 10 years when some of us got to know our status, if one was driving on the road, one would see the picture of a skull and bone depicting HIV/AIDS. This has changed today, but we are yet to get to that level of knowledge where we should be. In some cases, even the elites are far more opaque than people in the village. A lot still needs to be done about providing information for behavioural change and communications. There is still much investment to be done in that direction. There are still some people who believe shaking hands with people with HIV exposes one to the virus. It’s not yet Uhuru; there is still a lot of work to be done.
Do PLWHA still face stigmatisation?
Yes, there is still stigmatisation. The Federal Government is the first culprit. For one, the bill that has stayed the longest in the making process within the National Assembly is the anti-stigma bill. To me, that is the peak of discrimination. Why does the bill have to stay that long? why wasn’t the bill signed on December 1, the World AIDS Day, as we previously heard? Also, a lot of PLWHA do not have meaningful employment. I am lucky. Whoever denies one a means of livelihood is wishing one death. Also, some people living with HIV are still afraid of coming out publicly. Stigmatisation is still much an issue. Although we’ve covered a lot of distance, a lot more needs to be done in that area.
How old are you now?
I just celebrated my 50th birthday and I enjoyed it. I love life and as much as I pray to live up to a full old age, I cannot dictate to God. He has the final say.
What’s your advice to PLWHA?
First and foremost, I would encourage every adult Nigerian to access HIV counselling and testing. They should get tested, because HIV does not show on one’s face. Also, government needs to wake up to its responsibilities and make holistic treatment available for PLWHA. Beyond HIV, we also need to look into our care for tuberculosis. Tuberculosis is the worst enemy of PLWHA. There should be better funding in the health sector. I would advise government to tackle HIV and tuberculosis the same way it tackled and contained the Ebola outbreak in the country. Also, people should not wait for the symptomatic stage of HIV before they get tested, because that is heading for the AIDS stage. Someone with HIV can live up to 10 years before the signs start showing, and that is a dangerous direction. Persons who have tested positive should go to the nearest hospital to be managed. I would also advise people to be faithful to their uninfected partners. As far as I am concerned, HIV does not mean death.
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