Speaking Up

Winstone Zulu Speaks Up: Dare to Imagine

Tue, 16 Aug 2011 16:35:00 -0400

This is the final post made by our friend and colleague Winstone Zulu, who passed away October 12, 2011. Our remembrance of Winstone can be read here.

By Winstone Zulu

Imagine if every two minutes a woman died in New York City. Imagine if the cause of death was not an epidemic of any disease. Imagine if the cause of these deaths was not even a disease. Imagine if the cause was entirely preventable. Can you imagine the mayor and governor of New York going about their everyday life as if nothing was happening to fellow residents?

Hard to imagine, I guess, and yet this is what goes on in Africa and other parts of the developing world. Women of childbearing age die every two minutes from pregnancy and other birth-related complications. In sub-Saharan Africa, women are 136 times more likely to die of pregnancy-related problems than in developed countries. From the onset of labor both the mother and the baby enter a high-risk period that results in a horrific 150,000 maternal deaths, 1.6 million neonatal deaths, and 1.2 million stillbirths each year.

According to the 2007 Zambia Demographic Health Survey (ZDHS), maternal deaths are a subset of all female deaths and are associated with pregnancy and childbearing common amongst the poorest in the country. As of last year (2010), Zambia’s Maternal Mortality Ratio (MMR) stood at 591 deaths per 100,000 live births, which is alarming for lack of a better word. The immediate causes of this massive loss of life include excessive bleeding, infection, unsafe abortion, high blood pressure and obstructed labor. But the underlying problems are poverty, low levels of education, low status of women and violence against women in a male-dominated society that does not seem to care.

It is hard to think that in Africa we have continental bodies, such as the African Union (AU), or regional ones, like the Southern African Development Conference (SADC), who should be setting goals towards the total eradication of deaths among women who are merely bringing life to the planet. Our governments should be ashamed that so many women should be dying from a non-disease in epidemic levels. It is not unheard of in the rural parts of Sub-Sahara Africa for a pregnant woman to die in wheelbarrow while being transported to the nearest health facility, which would likely be ten to twenty kilometers away.

The world would perhaps remember a Zambian mother who ended up giving birth in a car park in broad daylight. She survived the ordeal, but her child did not. The distressed husband recorded the painful and embarrassing event on camera and handed the pictures to a local newspaper. The newspaper was mature and responsible enough not to publish the pictures but distributed copies to the vice-president of the country, a few women’s organizations and a few influential individuals in a bid to persuade the government to urgently deal with the nurses’ grievances, which had caused them to go on a strike that resulted in the pregnant woman not receiving hospital service. Instead of the government looking into ways of preventing what happened to the woman from occurring again, it charged the journalist who sent it the pictures with peddling in porn. Neither the torment that the woman went through nor the death of her child meant anything to the president, his deputy and his male-dominated cabinet. All that came to their mind when they saw the pictures was porn.

If those in power can interpret as pornography pictures taken in such a dire, life-or-death situation, little wonder anyone hears anything about the genocide of poor women that goes on unceasingly in Africa every day. The death of a woman as a result of being pregnant or during labor is so prevalent it is no wonder that in Zambia pregnancy is equated with disease and when a woman delivers she is not greeted with “Congratulations” but “Mwapusukeni” – a local word that literally means “You have survived.”

Winstone Zulu Speaks Up: Inclusion and the Global Fund

Thu, 07 Jul 2011 17:15:00 -0400

By Winstone Zulu

It has been over seven years since the creation of the Global Fund to Fight AIDS, Tuberculosis and Malaria (GF), the largest funding mechanism to fight the three diseases.

From the days of Jonathan Mann, director of the Global Program on AIDS (the predecessor to UNAIDS), we have known that the best way of fighting this disease is by respecting the human rights of all people, especially those that are at special risk. Universally, it has been the people at the bottom of the heap, the ones who are most marginalized, made scapegoats, stigmatized and discriminated against by society, who have been at higher risk of getting infected and dying of AIDS. These include men who have sex with men (MSM), sex workers and persons with disabilities.

Strangely, in Zambia these three groups of people are not represented on the Country Coordinating Mechanism (CCM), the body that makes grant proposals to the GF. In the case of MSM and sex workers, there seems to be an active and deliberate decision to exclude them from the CCM. What other conclusion could be reached when the chairman of the National AIDS Council, the institution that hosts the CCM, is a sworn homophobe whose hate speeches are reminiscent of a Nuremberg Rally?

Despite this blatant and insulting exclusion of key populations, the GF has found it fit to approve $300 million to Zambia. This huge amount of money will be spent on those who are deemed to be more worthy of the right to life and dignity than queers, sluts and cripples. The money will be used to fight AIDS in the self-respecting, monogamously married, Christian, heterosexual population who view even the use of condoms with suspicion or plain disdain. Heaven knows of what use the money could be put for such a “risk-free” population.

One of the most attractive things about the GF is its principle of allowing countries to design and own their own programs. This concept of country ownership is indeed a great departure from the often not-so-successful donor-driven interventions. However, the GF should insist that every country have in place a set of certain fundamental “best practices” before it even agrees to look at the country’s proposals. For example, the GF should insist that all proposals, as a prerequisite to review, contain a human rights component. The GF should not consider proposals from countries that have shown disregard for the rights of minorities and other such populations. To give money to a country that, through its own laws and practices, puts certain groups of people at increased risk of AIDS is not only a waste of resources but also contributes to the spread of HIV. And God forbid that the Global Fund to Fight AIDS, Tuberculosis and Malaria should turn out to be one of the drivers of the pandemic.

Winstone Zulu Speaks Up: Just Another Planet?

Fri, 22 Apr 2011 18:29:00 -0400

By Winstone Zulu

For the past two weeks I have been staying at Keith D. Cylar House at 743-749 East 9^th St, between Avenues D and C, in New York, NY 10009, USA. Cylar House is one of the four full-service health centers in New York of an organization called Housing Works. Housing Works provides integrated health-care services which includes full medical checkups and regular follow-ups, one-on-one help with medication, full-service dental care, daily hot and nutritious breakfasts and lunches, and a full exercise and fitness gym. Housing Works also provides people living with HIV and the homeless long-term and transitional apartments and guest rooms in a homely environment that gives them stability to recover and heal. It also provides job training that guarantees graduates a good job. Further activities are substance use and mental health therapies, including clean syringe exchange, sober-living skills groups, group therapy, and creative art therapy classes

All these first-rate services are provided free of charge.

This is where I am writing from right now. It is not from Mars or some exotic planet somewhere in the galaxy — I am only six time zones away, or 15 hours of flying, from home at Hope House 174, Luanshya Road, Villa Elizabetha, Lusaka, Zambia.

In Zambia we still face drug stock-outs for diseases like TB and AIDS. Medicines indicated to be taken with food are often swallowed on an empty stomach. I know everything about what happens if you skip doses, but I have yet to see widespread information on what happens when drugs are not taken as prescribed. Hunger is so serious in many communities that some patients do the unthinkable to put food on the table. Sherry, the man who played second guitar in my brothers’ band The Echoes, sold his TB drugs so he could buy food for himself and his wife and two young children. He used the drugs the first month and recovered so well that his appetite was at its peak, yet he could not afford a single meal a day. The only possession he had worth bringing in money for food was the remaining TB drugs. Sherry later died of the disease because when it returned the bacteria had become resistant. This was way back in 1993. But in 2004 a woman came to me complaining of having been told by health workers that she had now recovered from TB, which would mean being struck off the list of people receiving a small food parcel of beans, cooking oil and soya powder that was part of the treatment package. The food parcel was the main source of livelihood for this widowed mother and her children. She wished she still had the TB so she could continue receiving the monthly food parcel.

The indignity of being born and living on the wrong side of the world only becomes more pronounced when you stay and receive services at a place like Housing Works. Only then do you realize just how wrong and unacceptable it is for any child, anywhere on this planet, to die feeling the pangs of hunger. At Housing Works, transport is provided to doctor’s or dentist’s appointments. This Thursday I have an appointment with a GI specialist on the other side of New York and a vehicle has been arranged to come and pick me up. Contrast this humane service with the story of a woman living at Mukalashi in Chibombo in the central province of Zambia who gives birth in the dead of the night, on a scotch cart, on the way to a health facility 10km away, having hastily swallowed her single dose of resistance-building, prevention-of-vertical-transmission Nevirapine at the onset of labor. If the baby survives the birth and the cold of the night, mosquitoes will feed on it and it could die of malaria. If the baby survives the first few weeks, the mother will feed it exclusively with HIV-infected breast milk until the baby is six months old. Thereafter, it is weaned to a life of hunger and likely to die of malnutrition before the age of five. If it survives all these horrible ordeals it is likely to become an orphan because the mother may have acquired resistance from the single dose of Nevirapine given to her to prevent the vertical transmission of HIV.

What a cruel world this planet can be. What a crime that there can be so much on one side of the world and so little or nothing at all on the other side.

My only hope is that one day the Housing Works model of care will be replicated wherever there are homeless people living with HIV and AIDS. The aim of universal access to treatment is a mockery if some of the people in need have no place to call home. I am impressed that a large percentage of the funds used to provide these services are raised by Housing Works’ own private enterprises, making the organization to a large extent self-supporting. This model is wonderful, practical and replicable. It is not just a belief I have. It is already being tried in the Western hemisphere’s most impoverished country, Haiti.

Winstone Zulu Speaks Up: Unkindest Cuts

Wed, 13 Apr 2011 10:50:00 -0400

By Winstone Zulu

The hunter had carefully laid out his trap deep inside the cassava leaves. It was made of the bark of the strong mfundanzinzi tree. If a bush pig got caught in the trap, it would be almost impossible for it to break off and go free. The trap, called msampha in the Chewa language spoken in eastern Zambia and Malawi, is set to catch bush pigs locally called ngulube, and other animals that cause a lot of devastation to cassava and other tuber-producing plants such as sweet potatoes.

Having thus set the msampha, the hunter went to wait at a distance for a lucky catch. In no time a large boar arrived, foraging through the plant, digging up its nutritious tubers and eating voraciously as only a hog knows how. After a while it noticed that it could not move its hind leg either forwards or backwards and realized with dread that it was caught up in a trap. Being an old wizened-up animal, it decided to fight quietly to avoid attracting the hunter, who was busy tending to his crops a short distance away. It silently rubbed the rope made of bark against a stone to weaken it. It kept at for a long time and courageously fought wave after wave of despair. The boar knew that eventually the trap would have to give, and he would escape the sure death that would come should he scream now. But after several hours of working, it lost hope and gave a howl of anguish and despondency. It felt the fight was not taking it anywhere; that this was a hopeless case, and that its fate was sealed.

The hunter heard the yelling animal and rushed there. It only took one big blow from his axe to kill the pig. He then started to disentangle it from the trap. He suddenly stopped and said, “Look, this is my lucky day. This animal was almost free. If only he had kept on another minute he would have escaped. My family will have such great pork stew this evening.”

In Chewa the story is summarized in the saying “Ngulube inalila msampha utaning’a kale” — literally, “the bush pig screamed when the trap was almost broken.”

The cuts being proposed and made by countries that had promised to keep funding the fight against AIDS, tuberculosis and malaria do not make sense at all. In the first place, the servings are so small that they will hardly make a dent on the recession. However, the loss to the gains made by PEPFAR and Global Fund interventions of the past eight years will be immense. As a result of these investments, there is evidence that more people are now on treatment than ever before, which translates into better prospects for human development.

The money that has been put into PEPFAR and the Global Fund has had a huge impact on prevention, as more people have chosen to come forward to seek services such as being tested for HIV early and starting treatment if found with the virus. Now more than ever before, there are people living with HIV walking around with undetectable viral loads, which is great news for prevention.

Apart from that, study after study shows that it makes much more economic sense to keep people with HIV healthy than to deny them access to treatment and let them occupy hospital beds.

According to the March 2011 issue of POZ magazine, Kelly Gebo, MD, a researcher at Johns Hopkins University School of Medicine in Baltimore, found an economic correlation between CD4 cell counts and costs of care. Gebo's team examined data from almost 15,000 HIV-positive adults who used high-volume HIV clinics in the United States in 2006. They found that the average annual cost of HIV was $19,912, but for people with CD4s under 50, the average yearly cost was $40,678. In other words, POZ concludes, a more compromised immune system leads to more expensive medical care.

Great strides have been made in preventing vertical transmission of HIV and many programs supporting pediatric HIV depend on the G8 leaders’ promises made at Gleneagles in 2005.

We do not even need to imagine what will happen if the proposed cuts are implemented. People will die. We have been there before; we have known how this disease behaves in the absence of therapy. There is no justification for going back to doomsday scenes of the 90s, where life expectancy in Zambia, for example, plummeted from 56 to a mere 37.

These are deadly cuts and there is no economic or other justification for them.

Winstone Zulu Speaks Up: Who is Really Sick?

Mon, 14 Feb 2011 00:00:00 -0500

By Winstone Zulu

More than a decade ago a colleague of mine, Linda Shikabonga died at the University Teaching Hospital (UTH). She had an infection that quickly left her dehydrated and in urgent need of fluid transfusion. She was admitted to the hospital, which happens to be the biggest and final referral institution in the country, on a Sunday. Health workers knew what was needed to help Linda but they had a problem. The hospital did not have a canola to link Linda to the life-saving fluids that she so much needed. Her relatives rushed into town, three kilometers away, to buy one from a drugstore but when they came back it was already late, Linda was dead.

The author standing next to one of the damaged elevators at the UTH.

Linda was a courageous young woman who was amongst the first to join me in our outreach program that involved only those that lived openly with HIV. She was the wife of an officer in the Zambia Air Force (ZAF), which meant a lot of sacrifice as the military did not openly reveal the extent of the epidemic amongst its ranks for fear of compromising the security of the country. But she defied that and told the world she lived with HIV. Yes, Linda was special, and both Dr. Rachel Baggaley and Professor Peter-Godfrey Faussett would attest to this. She did not deserve to die for lack of a canola.

About five years ago, Dr. Faussett took a tour of several districts to check on the state of TB treatment. He was shocked that many clinics in the districts could not carry out TB screening because they did not have sputum pots. Even more shocking was the fact that the country had the pots stacked to the roof at the Medical Stores in Lusaka. But the pots got stuck somewhere between Lusaka and the district. Either the district did not submit their requests in time or, if they did, the person responsible in Lusaka just sat on the papers, or the guy with the keys to where pots were kept was having a great weekend in the Southern Province resort town of Siavonga and forgot to leave the keys. Whatever the case, the districts could not screen patients, and the TB bacilli were freely spreading amongst family members and the community.

That was then, one could be pardoned for saying. But have things changed now? Not at all. If anything we are in even more serious danger of creating multi-drug resistance strains of not only TB, but also AIDS. The country is experiencing a stock-out of Nevirapine, one of the key first-line AIDS treatment drugs. The second half of last year there were intermittent shortages of TB drugs, and until a few days ago there was still no streptomycin. Patients were made to take their drugs from the TB clinic on a daily basis. Given the poor economic status of most TB patients, coupled with the long distances to health centres, many patients defaulted on their treatment. Few clinics are close to a bus station, and anyone who has had pulmonary TB knows how difficult walking even a short distance can be. In the midst of this misery the government keeps denying that there is a crisis. In fact, the Deputy-Minister of Health was quoted as saying there were so much drugs at the Medical Stores he did not have enough room to keep them. The Minister of Health himself Simbao stood by his denial that there was a shortage of ARVs.

A sign hanging in UTH underlines the challenges created by the health worker shortage.

While the government continues to deny these deficiencies some things speak for themselves. For example, most elevators in the UTH do not function. When I was there about a month ago I had to walk long distances to find a working one then walk all the way back to the clinic. For persons with a physical disability, the UTH is currently a most unfriendly facility to get help from.

The other persistent challenge is the acute shortage of health workers. This problem has been there for so long that many people think it is normal. Even at the UTH there are permanent signs on the wall asking patients to bear with the hospital about this. This should cause outrage.

The current government boasts of having over $2 billion in reserve. The price of copper on the international market is at its highest, and we are Africa’s largest producer of the commodity. We are rich… so rich that when one of our political leaders get sick they are immediately whisked to a private clinic in South Africa. Meanwhile, the majority of people continue to suffer and die for lack of simple things such as a canola? Why keep huge amounts of people’s money in reserve when children are not growing because of malnutrition? Why send leaders to Johannesburg when the money could be used to upgrade the standard of our own hospitals?

While it is true that disease burden has created a lot of strain for health workers, the sickest patient in the Zambian health system is the Ministry of Health itself. It must be cured of its inefficiencies, corruption and denial.

People with Disabilities Must Be Part of an Equitable AIDS Response

Fri, 03 Dec 2010 00:00:00 -0500

By Myroslava Tataryn and Winstone Zulu

On World AIDS Day this week, the world was reminded of the urgent need for Universal Access to Treatment, Prevention, Care and Support for people living with HIV/AIDS. But there is a global population that continues to be overlooked in HIV/AIDS strategy: people with disabilities. We are not mentioned in the Millennium Development Goals (MDGs) or, incredibly enough, in the annual UNAIDS Report on the state of the pandemic. The world fails to realize that we will never achieve the global public health targets if we continue to exclude people with disabilities, and neglect disability rights.

We, people with disabilities, are everywhere. We are mothers, soldiers, sex workers, and drug users. We are doctors, nurses, janitors, and taxi drivers. We live everywhere, from Canada to Cambodia, in slums, hospitals, and bungalows. We live and die at the heart of the AIDS pandemic.

Leaders have decried the unspeakable carnage and destruction the AIDS pandemic ravages across Southern Africa, mindful of the double standard that divides the global response to the pandemic: the difference in standards of prevention and treatment between Africa and the West. HIV/AIDS reveals the ugly reality of our divided and unequal world. It forces us to grapple with our global system that values African lives less than those of North Americans. We are challenged to face the insidious ways that AIDS operates, preying on the most marginalized and dispossessed in society.

Yet, more than two decades into our response to the pandemic, people with disabilities are continuously silenced and overlooked despite relentless infections and deaths. The response to HIV/AIDS further marginalizes people with disabilities in subtle ways, such as voluntary testing and counseling clinics with steep staircases that prohibit people with mobility disabilities from entering. Tellingly, we cannot even assess the extent to which persons with disabilities are overlooked because we are not deemed important enough to be counted. Better left locked up in the house. Our lives are not deemed worthy to live; in Africa, better dead than disabled.

But this is not just an African issue. In North America, as people with disabilities, we are forced to fight day and night for our right to life — our right not to be sterilized against our will, or institutionalized — and as HIV/AIDS continues to ravage our world, people with disabilities are not even counted as persons worthy of relationships, as sexual beings, and therefore needing access to care and information, like everyone else.

How often have we been exposed to images of disabled people showing physical affection? Does this elicit the same romantic images, or are reactions in mainstream society more akin to disgust and offense? In Canada, there are numerous accounts of children with disabilities taken out of classrooms during sexual health presentations in the belief that such information is unnecessary for them as they stand no chance of finding sexual partners. On the one hand, people with disabilities — particularly women — are seen as unable to obtain fulfilling long-term relationships; more on the other hand, they are targets for rape because of their supposed weakness and helplessness.

Rape, whether in civil conflict or domestic violence, increases the chance of HIV infection by twofold. Disabled people, who are the frequent victims of rape, thus have incredibly high rates of infection.

Disabled women in Zambia and Canada alike, recount harrowing experiences, that are alarming in their violence and their similarities despite geographical difference. Common experiences such as a partner arriving at a disabled women’s home at night for sex but never admitting the relationship in the day or taking responsibility for his children; a woman wheeling into a health center seeking an HIV test but being turned away by other clients chastising her for being sexually active; a blind women raped and unable to file any claim with police because she is unable to describe the appearance of the aggressor and being told that she should be grateful for getting any sexual attention at all.

As advocates working in the field, we are exhausted by these stories. How many times do we need to repeat them before we get the attention and the funding necessary to compile the statistics policy makers are so desperate for? The climate of fiscal austerity is only further worsening the plight of people with disabilities domestically and globally. Disability rights are seen as non-essentials; rights we will only have the luxury of addressing when everything else is in order. Yet it is clear that we will not achieve women’s rights if we do not recognize the rights of disabled women. We will not have universal primary education if disabled children are not accepted into schools. Universal access to HIV treatment will not be achieved if disabled people do not have access to treatment. And fundamentally, we will never be a society capable of understanding equality and community until it is recognized that people with disabilities are people.

There are 650 million of us — fully ten percent of the world’s population. Today is the International Day of People With Disabilities. Ours is an issue whose time has come.