Feature:Wasted lives, needless deaths

October 21, 2005 :: Access Alert Edition 19,2005 Journalists Against AIDS(JAAIDS)Nigeria

How inadequate treatment education is costing lives of PLWH in Nigeria

Most delegates at the first National Treatment Summit -held late July in Abuja had one thing in mind while setting out for the summit: the need to address the myriad of problems facing PLWH accessing HIV/AIDS treatment in Nigeria.

For Bernard Kaa, the summit must have been an avenue to make a presentation he believed would challenge delegates to respond more proactively to the care and support of those living with the virus. Bernard's presentation was not done in power point, neither was it laced with the usual razzmatazz that characterise most presentations at AIDS conferences, workshops and seminars.

Bernard spoke straight from the heart. His words were as soft as they were powerful and stirring as he inspired participants to action.

Please let's make treatment education available to people, our medical personnel should be trained on how to administer ARV".

His words conveyed lessons and instructions that both the implementers and beneficiaries of antiretroviral treatment programmes should heed.

On Tuesday August 3, 2005, five days after sharing his experience and strongly warning against the dangers of drug resistance and treatment illiteracy, Bernard passed on. His demise came as a shock to family and friends.

Bernard used to be healthy and full of life. As a trained designer, he practiced his profession in Markurdi, Benue State with rare enthusiasm. Not even the fact he was HIV positive could dampen this zeal to live life to the full.

While Benue remained the state with the highest HIV/AIDS, prevalence rate in Nigeria, Bernard was one of the first people to put a face to the epidemic in the state. This may have informed his election as Coordinator of the Benue Network of People Living with HIV and AIDS.

With this responsibility, Bernard showed great commitment and passion to the cause of mitigating the impact of  the epidemic and addressing issues bordering on the welfare of PLWH  in Benue State.

In September 2004, two years after he commenced antiretroviral treatment, Bernard developed drug resistance (the drugs he was taking were no longer working). "I noticed a decrease in my strength. I was falling sick and could not carry on with my job as I used to" he said.

Then, Bernard knew little about the side effects of the  drug combination he was placed on..  He complained to his doctor. Sadly, his doctor had limited knowledge about antiretroviral therapy especially on the drug combination to be administered.

"My doctor gave me drugs without knowing what exactly was happening to me. He showed no interest to find out what was happening to me, he just kept giving me drugs."

Later, Bernard was changed from first line drugs to second line drugs. Three months after the change, we ran out of the second line drugs in the country, he said. He had to make do with what was available.

By January 2005 Bernard's CD4 count had dropped from 500 to 265.This drop continued. Before leaving the summit, his CD4 count had dropped to as low as 12 (he went for another CD4 count during the summit). Bernard insisted, "Adequate information and treatment education is very important as it empowers PLWH to know what to do and not do".

But for inaccurate information, Bernard would still be alive today, churning out beautiful designs. Sadly, Bernard is gone.

Bernard's experience with drug resistance epitomizes the realities of poor treatment education and the lack of adherence counseling to the life of a person living with HIV. Perhaps more pathetic is the fact that it reveals how one can live in the midst of solutions and still not find help in time of desperate need.

Not a few treatment activists believe that Bernard died because he could not access quality care when he needed it most. It was gathered that part of the solution to his problem was the need to do a full resistance test to determine which drug would be best suited for him.

The cost of the test, which is N50, 000, was one Bernard could only afford in the dream. Of course, there were moves to raise the money by some activists during the treatment summit. The efforts did not yield much.

For Rolake Odetoyinbo Nwagwu, Executive Director, Positive Action for Treatment Access (PATA), Bernard's death portends great danger and a major cause for concern. "If people like Bernard who started this struggle even before I tested positive are left to die like chickens, then I fear for myself and the four million Nigerians living with HIV.I fear for those who can't afford to pay for drugs".

Nwagwu who is also National Coordinator of the Treatment Action Movement (TAM) is incensed particularly by governments' insistence that PLWH under the US governments assisted treatment programme should pay N1, 000 for their drugs.

"The US government and the Global Fund have paid for these pills so why must we contribute N1,000 monthly? Most importantly, where is the N1000 going? The federal government sites have pills but there are no gloves, no syringes, no files, and no papers!"

Nwagwu said the condition of some of the government sites is a threat to the health of PLWH who must visit them.

It was in recognition of this shortcoming and the need to address them that the national treatment summit on HIV, TB and malaria was orgnanised.

Held in Abuja from the 24th - 28th July 2005,the summit brought together treatment experts, advocates and PLWH, journalists representatives of donor organisations  to address  issues bordering on treatment education, increased access and chat a course forward for improved treatment quality, availability and accessibility to all who need it.

Shortly after the Summit of African Heads of State on AIDS held in Abuja in 2001, Nigeria commenced what was termed the most ambitious treatment programme in Africa. The programme initially planned to treat 15,000 adults and 5,000 children living with HIV/AIDS. Regrettably, the programme took off without a plan to provide PLWH and caregivers with sound treatment education.

This shortcoming continues even in the face of treatment scale ups and it  is  costing  lives -needless death  that could have been avoided had the necessary and ideal treatment education been available.

Dr. Piere M'pele UNAIDS Country Director at the summit emphasized the urgent need to scale up treatment education in Nigeria, and the need to simplify treatment language to the level of understanding of the average PLWH whose health to a great extent depends on understanding and adhering to treatment. "Treatment education informs individuals on the manageability of HIV/AIDS and demystifies HIV/AIDS. It helps prevent against drug resistance," he said.

Tobias Luppe, Access Campaigner, for Medicines Sans Frontieres (MSF) shares M'pele,s views. "Treatment education intimates people with what they should know about the drugs they are taking. Adequately information about treatment will enable PLWH make informed decision and adhere to treatment."

Treatment education is among the causes TAM will champion in Nigeria as it enters a new phase. The group plans to provide PLWH and care givers/providers with correct information about ARVs and their various combinations, their compositions and possible side effects and what to do when reactions occur.

Prof Tony Elujoba, a pharmacist with the Obafemi Awolowo University Ile-Ife also called for a review in the curriculum of medical schools to include courses to specifically teach HIV/AIDS management as a way of addressing treatment ignorance especially among medical personnel. "There is need to review the curriculum of medical schools to address this gap. Our doctors should be trained to understand what is happening to their clients, gaps in training are the cause of the failure we sometimes experience."