Anjum Khan on HIV and TB in Uganda

Anjum KhanUganda is the colour blue, that intense, clear sky. Uganda is green; bright, vivid trees swimming with life. Uganda is red, crumbling soil everywhere. Some things stay with me; the insistent caw of the gaa-gaa bird, the silent old gum trees near the hospital, the eternal curiosity of the children.

And there’s another side, not so visible to the casual observer. The first hint comes from the traffic on the roads. Busy motor-bikes sway by, women sitting demurely side-saddle, whole families hanging on for dear life. Talking to the people around me, everyone has a story to tell and a scar to show, from the boda-boda bikes. My friend Ben is nursing gashes on his chest and arms from his last fall.  A lot of others weren’t as lucky.

There’s a new atmosphere of uncertainty in the country. The government offered stability in 1986 after the trauma of the civil war and the murderous madness of the Lord’s Resistance Army. Child soldiers are a rarer event, camps for internally displaced people are being broken up, and the north is increasingly regarded as safe. But recent events in Kampala have brought tensions to the surface. Last September, the government prevented the leader of the largest ethnic group from visiting part of his territory and demonstrations subsequently erupted into violence leaving 21 dead. Recently bombs targeting areas popular with Westerners killed 74 World Cup fans. A Somalian militant group has claimed responsibility, citing anger over Uganda’s involvement in peace-keeping in Somalia. It’s not the first time foreign military adventures have come home to roost, affecting the people of Uganda. The Ugandan army rampaged through much of Congo in the 1990s, and has been hunting for the remnants of the LRA amid the civil war in Sudan. The result is a pool of displaced people from all over the region, the results of disrupted health systems and flourishing spread of diseases across porous borders.
Life and death are very much seen as two sides of the same coin. So many times, bumping into someone I haven’t seen for a while, the phrase “I lost someone” comes up. As an outsider, the unusual thing is the lack of expressed emotion. It’s there alright, my ward is right next to the mortuary, you hear the wails of grief most mornings. Family is very important here, family networks are all. Brothers and sisters are everywhere, few of them siblings. But death happens here so often, the reaction is more muted.

Early death is nothing new in Africa of course. Malaria kills huge numbers of pregnant women and infants every year. Women die needlessly in childbirth. What is different about AIDS is the scale, over 6% of people here in Uganda, and a mind-blowing 25% in southern Africa. What makes HIV so important is whom it affects. Over the past few months I’ve got used to skeletal twenty-somethings arriving on my TB ward. People whose alter-egos I see walking around the town, healthy and full of life, appear on the floor of the clinic, or propped against the wall, lying very still. Coming from the West, we’re accustomed only to seeing elderly cancer sufferers look like this, or the terminally ill. The average age in the ward is twenty-eight. These people should be out there working in the fields, raising families, playing with kids.

An old foe in a new guise, the things HIV-TB does to the human body are shocking. What is amazing to a molly-coddled foreigner is what people are prepared to put up with before seeking help. People stay at home, sick for months but unable to afford the transport costs. They come to hospital to die, a bare one or two days away from the end. These people have an average weight of thirty kilos. They exist on the very edge of what the human body can stand.

There’s a flip-side. If they arrive in time, the recovery is equally dramatic, sometimes miraculous. A young woman lying motionless in bed will be eating in a few days, smiling in a few more, and walking out of the ward not long after. A businessman arrived from Kampala complaining of headache and fever. A few hours later, he collapsed with altered speech and leg weakness. He was started on presumptive treatment for cerebral TB and toxoplasmosis with a bewildering number of tablets. Over a few weeks, after taking his drugs religiously, his symptoms resolved. He left the ward a well man, unaware of how close to death or permanent disability he had come. To see the transformation is one of the great miracles of modern medicine. It makes coming here worthwhile. Because of the global effort to supply treatment, a lot of people are alive today to raise their families. Those are the easy ones. It’s not always as simple.

There are the women that give up. The town I work in lies near the border with both the Democratic Republic of Congo and south Sudan. Many patients come seeking treatment from the failed states a few miles away. Some, particularly the Congolese women, are dropped off by a friend, who returns home. The sick woman is left to fend for herself, and in an African hospital that means preparing your own food, washing and feeding yourself, and taking your own medicine. This varies, depending on the extent of non-governmental organisation (NGO) involvement, but sometimes the critical need is psychological. The circumstances they come from are murky. Family troubles and abandonment lurk in the background, and in their faces are fear and hopelessness. These are the people that stay with you. The are some that turn their faces to the wall, spit out the tablets, and decide to die.

Then there are the people we can’t treat. They don’t get better on treatment for TB, HIV, and the myriad other infections poised to attack a vulnerable immune system in this place. The lack of sophisticated and expensive diagnostic facilities, the CT scanners, and microbiological cultures, means we never learn the cause of their illness, and the learning process is slow.

They’re a minority. The vast majority get better with a few little pills, the familiar bright colours of peach and indigo. The common denominator in recovery is the carer, the “treatment supporter” in the NGO jargon; iron-willed seventy-year old mothers, sisters, wives, brothers. Despite the extra vulnerability of women to the virus, husbands are rarely sighted. People without carers don’t do well. For all the miracles of modern drugs, people seem to need something else as well to get them through, someone by the bedside day and night, cajoling them to eat, making the illness a bit less terrifying.

More alarming are the distant political rumbles, slowly echoing through to the people below. The miracle has been made possible by political will and cold, hard cash. There are two major donors; the US government in the shape of the President’s Emergency Plan for AIDS Relief (PEPFAR) and the developed nations in the form of the Global Fund to Fight AIDS, Tuberculosis, and Malaria. As a knock-on effect from recession, the funding is slowing. There seems to be a loss of focus on the main issue. The anticipated recruitment of the millions who still need treatment is not happening.

Unfortunately, as a consequence or opportunity stemming from recession, all the major funders have cut their contributions to funding HIV programs. PEPFAR has reduced their ARV budget and is now spreading the same money over six years rather than five. The major contributors to Global Fund have slashed their funding. Sudden stoppages in HIV treatment have moved from occasional to normality. Rationing is now a reality.

It’s not an approach that makes much sense considering stated goals to reduce morbidity and mortality. It’s not an approach that makes any sense considering cost-effectiveness. Less people starting on treatment and at a later stage means they need much more costly hospital care and more expensive drugs. Meanwhile, they pick up TB, requiring more drugs and using up precious healthcare resources. People will start sharing pills, meaning several people get substandard treatment and viral resistance. More people off treatment means more people with a high viral load spreading the disease around the community, infecting partners and children, increasing the size of the problem. Encouraging people to be fully adherent to drugs sounds ridiculous in the light of a healthcare strategy that seems to be giving up on them.

As we retreat further from the millennium, the Millennium Development Goals seem less important and more like pie in the sky; political pipe-dreams. MDG 6 has the aim of reversing the spread of HlV by 2015. While this was always a target to be aimed for rather than realistically achieved, at present only 4.5 million people out of approximately 9 million requiring treatment are on ARVs. The retreat in the face of progress seems to be motivated solely by political considerations. Allowing vulnerable people to die for lack of a few dollars per person seems doubly disappointing when we consider the amounts the world spends on other priorities.

So now, a shift in strategy. “Prevention not treatment” is the new slogan. Without doubt, prevention of transmission is vital. Conveniently, that conceals the fact that people living with HIV now will go to the wall for the sake of drugs costing a few pence each. True, condoms are far cheaper than maintaining an entire health system, but it’s also unrealistic in a male-dominated society that values children so highly. Prevention alone will do very little in today’s conditions, apart from allowing international donors to back gracefully out of their funding promises.

Governments around the world have different priorities, but at the heart of all our concerns, from the economy to climate change, lies a fundamental respect and concern for human life. To ignore the pandemic in our midst for the sake of parochial concerns, a war that can be fought with a fraction of the billions used to save our banks or launch missiles, is to go back to the bad old days.

Anjum B Khan is an ST4 Specialty Registrar in haematology at Guy’s & St Thomas’ NHS Foundation Trust. He spent six months working in northern Uganda in a collaborative TB-HIV project between the Ugandan Ministry of Health and a non-governmental organisation.