A very good number of People living with HIV/AIDS are beginning to adjust to its own hard time, paying for drugs, consultation, and treatment. Some have stopped taking drugs, waiting for the ill fate of death; those who could afford the drugs cannot say how long they can go with it, these vulnerable Nigerians have been left in the middle of a deep blue sea, but Edward Ogenyi, President, Network of People Living with HIV/AIDS in Nigeria, tells Ndidi Chukwu that NACA and the FMoH, toss them around.
HR; what led to the crisis between NEPWHAN and NACA recently?
The issue that led to the conflict between the Network of Persons Living with HIV/AIDS in Nigeria (NEPWHAN) and National Agency for the Control of AIDS (NACA) is the fact that a good number of NEPWHAN members that are accessing treatment have stopped treatment in many of the facilities because they were asked to pay for some services and these are some of the services that were free before. People are now asked to pay for consultation, they are asked to pay for drug pick-up, they are asked to pay for consumables and are asked to pay for laboratory test for individuals that are unable to pay for these services they stop their treatment. We see a lot of dangers in this many of them as I speak to you have come down with a lot of infections meaning that they are down and unable to come out because anyone on treatment is not supposed to stop it and people have already stopped their treatment because services that were free before, people are now being asked to pay for it, the HIV/AIDS services was free before and people are asked to pay for it now and those that cannot pay for it they stop their treatment and that means a lot of danger for our members and for the country itself .
HR; those that stop the treatment are they across the nation or some specific areas?
It is not in all the facilities but the issue of payment is something that cut across all facilities. We know that in University Teaching Hospital Ibadan some of our members have already stopped treatment, also in NIMR in Lagos some members have stopped the treatment because they could not afford to pay for the cost of laboratory test, cost of consultation, consumables drug pick up and all of that.
HR; beyond those two locations, where else have your members been forced to stop accessing treatment?
General Hospital Wukari, a good number of our members also stopped their treatment there because people were asked to pay for CD4 count test and for so many other things that they could not afford to pay. HIV treatment used to be free so that people can access to, when it was made free people were accessing it and at the middle of it one now is asked to pay and these are individuals that could not afford to pay for treatment.
HR; most of these treatment were being funded by donor agencies using implementers like the FHI360 and the Institute of Human Virology in Nigeria, what role has NACA been playing so far?
We are a little bit concerned because the role of NACA when there are challenges regarding HIV treatment isn’t clear to us. When you go to NACA they will not respond to you, they will send you to Ministry of Health and when you go the Ministry of Health they will tell you it is NACA, as at the time we had this issue NACA called for partners meeting and after that meeting some of us including Professor Idoko, Dr. Billaly of USAID, were asked to meet with the Minister of Health and indeed we met with the Minister. The Minister asked Professor Idoko to bring those issues in writing and for NACA at their own end to push the issues with the minister became another challenge on its own and these are issues that people are supposed to respond to from the perspective of emergency because already people have already stopped their treatment and we are looking at a situation where those individuals can go back to their treatment.
HR; this duplication of role between NACA and the Federal Ministry of Health, how exactly is that impacting on HIV treatment?
How it impact is the fact that people are looking at the mandate, for example when we run to NACA for medical care of Persons Living with HIV they will tell you their mandate does not extend to medical care of Persons living with HIV, then we go to the Federal Ministry of Health, they will tell you they are not given the funding to provide HIV treatment and that is how it impacts negatively on People living with HIV. This makes us confused, if you have medical problems there are things that people could not afford. We need to have a ready support to bridge that gap. If you go to this partner they will tell you our mandate does not extend to medical care of Persons living with HIV for example NACA, then you go to ministry of health they will say they are not being funded to do that. That is why we suffer the cold war that exists between the two organizations.
HR; from what I understand, NEPWHAN wants to be involved in the decision making process that affects them, but it is not being carried along?
One of the issues we have been agitating for, you see it is only in Nigeria, all over the world, People living with HIV are actually key in the decision that affect their lives. But in Nigeria here the story is not the same, and we have been advocating to NACA to bring in People with HIV and AIDS when you are determining their new priority. When you are going to the negotiation table with donor partners, we should be there to know exactly what you are talking about for example NACA or the Ministry of Health if they are talking and negotiating with any partner, they are only negotiating from the point of view of the statistics and figures, but a Person living with HIV and AIDS is on the negotiation table, the person will speak from the human angle.
HR; NEPWHAN was not part of that…
NEPWHAN wasn’t part of most of the negotiation on HIV/AIDS that is going on and this is one of the issues that we are talking about that we need to be involved in every aspect of the negotiation.
HR ; at the moment NEPWHAN wants adherence at the community level, NACA from what I understand is insisting that NEPWHAN is not an implementing partner on the agreement it has on how these funds are going to be spent, does that hold any validity for NEPWHAN?
I think the issue of adherence support especially under the SURE-P, is not clear, they have not come out clearly to say NEPWHAN this is your role, you have expertise in this area and we want you to come up with a clear concept on how you are going to do it with your budget. They have not been able to come out to tell us that, however what they have communicated to us is that they are still negotiating with FHI360, who is likely to be their implementing partner, they said they were going to engage them and when they are through with that engagement , they will now come back to NEPWHAN, that approach keeps People living with HIV/AIDS out of the implementation strategy, because in all of these discussion in terms of where are we going to work and all of that, we felt we should have been a part of those discussions. Even when they are talking about procurement, we should have been part of the decision to tell you, if you want to procure a certain quantity on the first line drugs include a certain quantity on the second line drugs because we are having serious issues with some members that require second line drugs, but because we are not part of that we are not able to make input into all of these decisions