July 1, 2005, Nelson Mandela, Africa’s most revered statesman of this generation announced that his only surviving son Makgatho Mandela, 54, died in a Johannesburg clinic where he had been receiving treatment for more than a month.
"I announce that my son has died of AIDS," the 86-year-old Nobel Peace laureate told a news conference, urging a redoubled fight against the disease.
"Let us give publicity to HIV/AIDS and not hide it, because the only way to make it appear like a normal illness like TB, like cancer, is always to come out and to say somebody has died because of HIV/AIDS. And people will stop regarding it as something extraordinary," said a frail-looking Mandela, surrounded by his grandchildren and other family members.
Mandela's courageous announcement of his personal AIDS tragedy challenged the widespread taboo which keeps many Africans from discussing a pandemic which now infects more than 25 million people across the continent. Was this enough to break a the taboo associated with disclosing ones status?
On Friday Malawians joined the global observation of the World Aids Day that has since culminated into the World Aids Campaign since 1995. By Friday the UNAIDS estimated 24.7 million people living with HIV the Aids virus and 2.1 million deaths from the pandemic since it started.
Malawi alongside Tanzania, Zimbabwe and Botswana in the SADC region were reported to have registered a decline in infections between 2000 and 2005. However the key question remains that how do we know how many people have Aids? Is it worthy it for one to have his blood tested?
Let me start by evaluating the dead and disclosure Aids status.
At home the situation is different. People whisper at funerals and more when visiting patients at hospital, “timadziwa ife, kunjoya konse kuja” (We knew that he/she will get Aids and die). Most people prefer nowadays to be admitted to hospitals far from home than near to deter rumour mongers from finding a juicy tales.
Very few families have announced the real cause of death, which most people say it’s debatable in medical sense. Does HIV cause death? Is it a related disease which kills someone with Aids? These are academic questions that doctor’s are trying to answer as to how to write the cause of death on a death certificate.
The irony is that if doctors can’t agree on the cause of death as being Aids. (I challenge anyone to check all death certificates issued so far, none has Aids as a cause, It is something different from pneumonia to TB.) An attempt by a South African doctor who wrote Aids as a cause of death mid November caused a furore. So how do we announce at funerals like Mandela that our beloved ones died of Aids?
All of us will claim ignorance and stick to the better version of the cause of death.
Culture too prohibits us from pointing fingers at someone dead. We have heard how criminals have been glorified during funerals even if we are all aware that he died from wounds sustained from an attempted armed robbery.
With the stigma attached to Aids, how can we say our beloved ones died of Aids without eyes brows being raised about the deceased sexual life?
Despite having an estimated number of one million of the population having the Aids virus, the argument of one declaring his or her sero status is murked in water of human rights. Everyone retains a right not to disclose their status.
Coming to the living, we are told that many people have accessed VCT services and we have a confirmation from the National Aids Commission saying as many as 0.8million Malawians have the Aids virus. The question is where are these people?
Who got the data and from who? These are questions the Commission and numerous NGO’s running on Aids money will have to answer one day. NAPHAM membership does not exceed 20,000 at present, the same with a combination of MANET and other people living positively with HIV and Aids.
Only 50,000 out of 150,000 estimated to require ARV treatment are on the life prolonging treatment.
Knowing one’s sero status is the best way for one to prepare eventualities and live a healthy life. When you know you status, decision making is very easy both in personal and household development.
Most people have gone to have a test, but societal, economic and political influences deny them the opportunity to reveal their status.
Societal barriers to one’s coming out are overwhelming and interestingly ignored by the Aids activist. Stigma and Discrimination are propagated mainly in terms of institutional issues where people who are positive have been denied opportunity due to their sero status.
In societal hurdles one has to pass through include his family, the extended family and their communities which include set up such as schools, work places and even churches. This has impacted negatively on most people willing to come out and has its consequences.
The consequences are that even though there are 800-thousand Malawians with Aids we only know a handful that have been to health facilities. Disclosing one’s status affords opportunity for society to deal with the pandemic more objectively.
It also enhances realization that after all Aids is just another disease now turned into a chronic disease as one can get life prolonging drugs just as cancer.
However if most people were open enough, this problem should have bee dealt with long time ago and effectively would have increased a voice in demand for better health facilities and supplements for the poor living with Aids.
The National Aids Commission need to move out its campaign to family-to-family approaches that institutionalization of Aids in communities. I am very ashamed by advocates of community home based care groups which have turned volunteers who are family members to seek monetary awards for caring a member of their own family.
On a further personal level disclosing ones status moves one from depression and the acts of hiding information related to your condition. Some even have to waste resources to move from Lilongwe to Ntengowathenga in Dowa to avoid the public.
Anxiety and depression are known to accelerate and cause early death in someone who is sick than those whose confidence is restored. No one think that they will die if they have malaria. This should be the feeling. You can die of a car crush and leave someone who has Aids to die 20 years later.
On economic front, one is able to plan and deliver outputs expected on his health conditions. You can invest in you children and motivate them to work hard just by letting you status known.
Families have been known to unite when tragedy strikes. The same will be able to prepare you family to work hard in their economic and education programmes should they know your status.
The limitations again are bossed who still are afraid of costs of treatment (though its now free) and they think they will loose in gratuity. However HIV positive persons are the most dedicated and loyal employees that can effectively contribute to a company’s fortunes as they set goals in life.
Lastly, the more people declare their sero status; Political will in terms of health investment will become a reality. Forget a joke of the year “Aids testing week” where all officials went for a test and failed to disclose their status.
Interestingly people have disclosed their status where it suits their political agenda’s. How do you call for people to go an get tested and disclose their status- when a highly publicized Aids testing week ended with the public ignorant of what the Minister of Health and her officials status is. This includes the Director of National Aids Commission, Parliamentarians and NGO’s leaders and activist.
In the media so far only two Journalists have announced their status. In Parliament its only Aleke Banda and Justin Malewezi, outside it is Bakili Muluzi and Bingu wa Mutharika.
If we had the many Church, Political and even Traditional leaders coming out would make Aids wear more of a human face. Gossip of leaders in all sectors dying of Aids continues to fly, yet the denial is also prominent in religious circles. This has to change, In Senegal religion has played a vital role in the fight against Aids resulting prevalence rate of one percent.
While it is worthwhile for people to disclose their status, starting at the top levels of society will has more impact than currently realized. I would not be surprised that after everyone discloses their status, you might find the numbers of infections are actually lower than what we are currently made to believe.
Further to this Government will be pressurized to support programmes among the poor that will see people who are HIV positive accessing better nutritional food supplements and opportunities.
For all these to happen, one needs to start by getting tested and disclosing their status to their family and friends. It will be easy afterwards.
This article appeared in the Sunday Times commemorating the 2006 World Aids Day