Community support workers are key in raising awareness about TB and promoting diagnosis and treatment. Credit, Busani Bafana/IPS

By Busani Bafana
BULAWAYO, Zimbabwe, Jan 7 2022 (IPS)

Global efforts to end tuberculosis (TB) are futile without dedicated investment in research into the debilitating disease that is killing 4000 people a day, Stop TB Partnership warns.

“TB is a disease that is not a darling of donors and investors,” Lucica Ditiu, the Executive Director of the Stop TB Partnership, told IPS in an interview from Geneva.

“We do not have a Bill Gates that can support TB research, yet TB remains a disease of concern with deaths increasing for the first time in over a decade,” she added.

TB, a bacterial disease mainly affecting the lungs, has been around for over millennia and remains one of the top killer diseases globally. But it is preventable and curable with the right investment in diagnosis and treatment.

Ditiu attributed the rise in TB incidents to several factors; many people diagnosed and on treatment for TB have defaulted owing to the disruption of health services in the wake of the COVID-19 pandemic and global lockdown. Furthermore, many people remain undiagnosed because they have not been reached.

Dr Lucica Ditiu, Executive Director of the Stop TB Partnership. Credit: Stop TB Partnership

“Southern Africa has done a good job in respect of Zambia, Zimbabwe and South Africa as well as Rwanda in trying to disrupt as little as possible the treatment and diagnosis of people with TB,” Ditiu said. She commended awareness programmes in the media and community door-to-door campaigns to promote diagnosis and treatment.

Countries need to invest more in finding people with TB and putting them on treatment. Until you find people, you cannot put them on treatment, and this is where we are very much lagging, she said.

Ditiu fears the worst should the world fail to change the current TB transmission trend. An estimated 5.8 million people received treatment for TB in 2020; a drop of 21 percent from 2019, and more than 4 million people worldwide remain untreated. According to Stop TB Partnership, half of those untreated are likely to die from the disease.

Admitting that funding for TB has always been insufficient, Ditiu said TB was the poor cousin compared to the deep pockets for HIV and AIDS.

“In general, we have available only 30 percent of the funding needed globally. We have places that have done well in preventing TB in people living with HIV. Prevention of TB in people living with HIV is going well, especially in African countries because HIV has resources.”

According to the Stop TB Partnership, a network of international organisations established in 1998 to help end TB as a public health problem, funding for TB research and development (R&D) has remained flat since 2018.

Global funding for tuberculosis (TB) research totalled 915 million US dollars in 2020 – less than half the goal of 2 billion US dollars set forth by participating country governments at the 2018 United Nations High-Level Meeting on TB.

In 2021, TB had a funding gap of 13 billion US dollars globally, with only 5,3 billion US dollars available for its programmes. It experienced a drop in funding amounting to 500 000 US dollars in 2020 as many countries took money away from TB to respond to COVID-19.

A new report, Tuberculosis Research Funding Trends, 2005–2020 by Treatment Action Group (TAG) and the Stop TB Partnership, found that TB received less than 1 percent of the amount invested in COVID-19 Research and Development over the first 11 months of the pandemic.

“The mobilisation of over 100 billion US dollars for COVID-19 research and development in the first 11 months of the pandemic shows us just how powerful a coordinated effort against a disease can be,” noted Ditiu.

While the pandemic has shown that effective vaccines can save lives, the world is still banking on a 100-year-old vaccine, Bacillus Calmette-Guérin or BCG. However, a more effective vaccine could have higher efficacy rates, especially for adults. Why has it taken so long to develop a new, more effective TB vaccine when the health burden of TB is increasing?

“This is the drama,” Ditiu commented. “We have a vaccine for a hundred years that we know for the last 40 years does not work (effectively) except for newly-born babies, and yet we have not done much about it.”

While ongoing research on new vaccines had been slow because of poor funding, Ditiu said several potential vaccines were in the pipeline, and a vaccine could be expected by 2027.

“It takes a long time to get a vaccine. But because of COVID (we realised), it is possible to have a vaccine much quicker, and we hope to use the learnings from COVID-19 to get a TB vaccine,” Ditiu told IPS.

Tuberculosis vaccine research has been slowed by chronic underfunding with only one moderately effective century-old TB vaccine, compared to over 20 COVID-19 vaccines.

“What’s enabled the development of dozens of COVID-19 vaccines in less than a year has essentially been money,” noted Austin Aurinze Obiefuna, Executive Director of the Afro Global Health Alliance and incoming Vice-Chair of the Stop TB Partnership Board.

“I think that the same enormous amount of funding should be applied with equal vigour to the development of TB vaccines. But that simply doesn’t seem to be happening.”

According to the Stop TB Partnership, making much-needed progress against TB demands investment that matches the threat of the disease around the world. This includes a commitment to rectify the inadequate funding of the past. Over the next two years, 10 billion US dollars are needed to close the tuberculosis R&D funding gap.

“Wealthy countries need to step up and put more money into correcting global health inequalities, which COVID-19 vaccine allocation inequities laid bare,” urged Mark Harrington, Executive Director of TAG, an independent activist, and community-based research and policy think tank.

“COVID-19 made more people around the world aware of the importance of R&D spending than ever before. Now is the time to finally start making investments ambitious enough to end TB for good.”

Follow @IPSNewsUNBureau
  

Social worker in the flat of a drug addict in Donetsk doing outreach work. Drug addicts, like other marginalised groups, including Roma, are victims of the collapse of the health system in East Ukraine. Credit: Natalia Kravchuk/International HIV/AIDS Alliance Ukraine©

By Pavol Stracansky
KIEV, Jan 28 2015 (IPS)

With international organisations warning that East Ukraine is on the brink of a humanitarian catastrophe as its health system collapses, marginalised groups are among those facing the greatest struggle to access even basic health care in the war-torn region.

The conflict between pro-Russian separatists and Ukrainian forces has affected more than five million people, with 1.4 million classified by the World Health Organisation (WHO) and human rights bodies as “highly vulnerable” because of displacement, lack of income and a breakdown of essential services, including health care.

Fighting and accompanying measures imposed by both sides have led to medical supplies being severely interrupted or cut off entirely, hospitals destroyed or battling constant water and power cuts, and crippling staff shortages at health facilities as medical staff flee the fighting.

A complete lack of vaccines is threatening outbreaks of diseases such as polio and measles, while there are concerns for HIV/AIDS and TB sufferers as supplies of vital medicines dry up and disease monitoring becomes almost impossible.Fighting and accompanying measures imposed by both sides have led to medical supplies being severely interrupted or cut off entirely, hospitals destroyed or battling constant water and power cuts, and crippling staff shortages at health facilities as medical staff flee the fighting.

Massive internal displacement because of the conflict – latest U.N. estimates are of 700,000 internally displaced persons (IDPs) with the figure rising by as much as 100,000 per week – has also left hundreds of thousands living in sometimes desperate and unhygienic conditions, creating a further health risk and the chance that infectious diseases, such as TB, will spread.

But while there is a threat to healthcare provision from collapsing resources, some in the region are facing extra barriers to accessing health care.

Ukraine has one of the worst HIV/AIDS epidemics in the world and the spread of the disease has been fuelled mainly by injection drug use. But, unlike in many Eastern European states, the country has been running for more than a decade an internationally lauded range of harm reduction programmes which have been credited with checking the disease’s spread.

These have included opioid substitution therapy (OST) programmes available to drug users across the country. These are particularly important in East Ukraine because the majority of Ukraine’s injection drug users come from the Luhansk and Donetsk regions.

But local and international organisations working with drug users say that addicts’ access to life-saving treatment in those areas has come under increasing pressure since the start of the conflict and that it could be cut off entirely within weeks as supplies of methadone and buprenorphine used in the treatment run out and cannot be replaced.

The International HIV/AIDS Alliance Ukraine which runs many OST centres as well as other harm reduction programmes, has said that stocks of antiretroviral drugs, OST and other life-saving treatments will have run out by  February.  More than 300 OST patients in Donetsk and Luhansk have lost access to treatment since the conflict began, while a further 550 patients on methadone will run out of drugs soon if emergency supplies cannot be delivered.

U.N. officials in close contact with international organisations helping drug users as well as doctors in Donetsk have confirmed to IPS that clinics have only a few weeks’ worth of stocks of methadone left.

One doctor in Donetsk working on an OST programme, who asked not to be named, told IPS:  “There are serious problems with medicine supplies. The last shipments came in September last year and some patients have already had to finish their treatments. Many had been on it for a decade and in that time had forged new lives, put their, sometimes criminal, past behind them and had families. It was absolutely tragic for them when they stopped.”

It is unclear what will happen to all those no longer able to access OST treatment. Doctors say some have gone into detoxification, while others have moved to other cities in safer areas of Ukraine in the hope of continuing OST.

But with 60 percent of those receiving OST also being HIV positive, according to the Donetsk doctor, and reports that many are now turning to illicit drugs and needle-sharing again as access to OST is cut off, there are concerns that the disease, along with Hepatitis C which is rife among injection drug users, and tuberculosis, could be spread, and that the lives of many drug users will again be at risk.

OST patient Andriy Klinemko, who was forced to flee Donetsk with his wife when their house was destroyed in bombing last summer and who is now in Dnipropetrovsk in central Ukraine, told IPS: “OST patients in East Ukraine are being forced to move, but not all of them can and even those that make it to other regions may not be able to continue OST because there is no money left to run such programmes. It’s a bad situation and at the moment I really can’t see any way it’s going to get better.”

But drug users are not the only marginalised community struggling to access health care.

Historically, the estimated 400,000-strong Roma community in Ukraine has, like Roma in many other Eastern European states, faced widespread discrimination in society, including in employment and education.

They have also always had limited access to healthcare because many Roma lack official ID documentation which makes it difficult for many to obtain official health care, while widespread poverty also means services and medicines which require any payment are also inaccessible to most. Meanwhile, many Roma settlements are in remote locations, far away from the nearest health centres.

Dr Dorit Nitzan, head of the WHO’s Ukraine Office, told IPS: “Even before the conflict, Roma in Ukraine had limited access to curative and preventive health service. As a result, Roma children have extremely low vaccination coverage. Moreover, rates of tuberculosis and other communicable and non-communicable diseases are higher among Roma than in the general population.”

Discrimination is also a problem. Zola Kondur of the Chiricli Roma rights group in Ukraine, told IPS: “In terms of healthcare, Roma are among the most vulnerable in the country. They are treated badly because of their ethnicity.”

However, the problems for Roma have dramatically worsened since the conflict began. Some human rights groups have said that since the separatist regimes took power in the region, Roma have faced systematic violent and sometimes fatal repression.

According to a report this month of an international mission to monitor human rights

by the Kharkiv Human Rights Protection Group, Roma living in separatist-controlled areas have been “subjected to open aggression from militants ….[who] have carried out real ethnic cleansing” against them. Many have fled and become IDPs, subsequently facing health struggles.

Dr Nitzan said: “As in every crisis, if not given special attention, marginalised and vulnerable groups are at higher risk. In Ukraine, many Roma lack civil documentation, and thus cannot be registered as internally displaced persons and are not included in the provision of any health services.

“Moreover, their inability to pay ‘out-of-pocket’ limits their ability to procure medication and/or services. Compounding this is that many Roma IDPs are residing at the margins of society, in remote geographical locations, where no services are available. All of these factors make health services inaccessible to Roma.”

Local rights groups say that Roma who have managed to flee to safe areas have often ended up homeless and starving after facing problems accessing aid because of a dismissive attitude from volunteers and staff at social institutions, while their lack of identification documents also prevented them from accessing any official help.

However, even those who have managed to find treatment have sometimes faced further problems.

Kondur told IPS: “In one case a Roma family moved from Kramatorsk to Kharkiv. A little boy had a heart problem brought on by the stress of the fighting and he was taken to hospital. One night, a group of young people broke the window of the boy’s hospital room, shouting ‘Gypsies get out’. The boy had a heart attack.”

Edited by Phil Harris

Young boy sitting on a wall outside 'Way Home', a UNICEF-assisted shelter providing food, accommodation, literacy trainings and HIV/AIDS-awareness lessons to street children in Odessa, Ukraine. Because of unsafe sex and injecting drug use, street adolescents are one of the groups most at risk of contracting HIV. Credit: UNICEF/G. Pirozzi

By Pavol Stracansky
KIEV, Dec 9 2014 (IPS)

Marginalised communities and civil society groups helping them are warning of a “tragedy” in Eastern Europe and Central Asia (EECA) as international funding for HIV/AIDS and tuberculosis (TB) programmes in the regions is cut back.

The EECA is home to the world’s only growing HIV/AIDS epidemic and is the single most-affected region by the spread of multi-drug resistant TB (MDR-TB). For years, HIV/AIDS and TB programmes in many of its countries have been heavily, or exclusively, reliant on funding from theGlobal Fund to Fight AIDS, TB and Malaria.

But this year has seen the Global Fund move to a new financing model based on national income statistics, under which funding in many EECA countries has already been – or will soon be – heavily cut.“This [reduction in Global Fund financing] could lead to tragedy because governments are not yet ready to take on the responsibility for addressing the HIV/AIDS epidemic. I would like decision-makers to understand that this is not just [about] epidemiological statistics but that our lives and health are at stake” – Viktoria Lintsova of the Eurasian Network of People Who Use Drugs (ENPUD)

Some of those likely to be most heavily affected by the cuts say that the reduction in Global Fund financing is putting essential HIV/AIDS and TB services, and with it lives, at risk.

Viktoria Lintsova of the Eurasian Network of People Who Use Drugs (ENPUD) told IPS: “This could lead to tragedy because governments are not yet ready to take on the responsibility for addressing the HIV/AIDS epidemic. I would like decision-makers to understand that this is not just [about] epidemiological statistics but that our lives and health are at stake.”

At the heart of their concerns are worries over funding for not just medical treatment for existing patients but prevention and other services for at risk and marginalised communities.

Injection drug use has been identified as the main driver of the HIV/AIDS epidemic in the EECA but HIV/AIDS is also being increasingly spread among men who have sex with men and sex workers – groups which are heavily marginalised because of political and societal attitudes to homosexuality and women.

TB, an equally severe health problem in the EECA, is closely linked to the HIV/AIDS epidemic because co-infection rates are often high.

Throughout the region, prevention and harm reduction services for marginalised groups are provided by civil society groups which rely almost exclusively on international funding.

Sveta McGill, health advocacy officer at international advocacy NGO Results UK, told IPS that the withdrawal of Global Fund funding could see many sick people slip under the health care radar.

She said: “It is affecting services provided by NGOs covering at-risk groups. These ‘low threshold entry’ services, while not necessarily medical interventions, are crucial to keep people from risk groups coming to centres where they get referred to medical institutions to get treatment and can access medical services as well.

“Often, they would not feel comfortable going straight to state health care institutions, and closing down these venues would mean that less people would be referred to state health care institutions.”

Critics point to rising HIV/AIDS infections in Romania in recent years as a sign of what could happen in other EECA countries when the Global Fund cuts back its financing.

The Global Fund ended financing for programmes in the country in 2010. According to data from the Romanian government, since then there has been a dramatic rise in HIV infections among people who use drugs: in 2013, about 30 percent of new HIV cases were linked to injection drug use compared with just three percent in 2010.

Under the Global Fund’s New Financing Model (NFM), the major change is a reduction in financing to middle income countries. Many EECA countries are now classified as middle income and critics say that while the organisation’s goal of looking to prioritise use of finite resources is sensible, national income data does not always accurately reflect the ability of people to access health care services, nor whether a country has the funds for an adequate disease response.

They point to studies showing disease burdens shifting from low income countries to middle income states, and poverty being greatest in middle income countries. Also, most people living with HIV live in middle income countries.

But some have also dismissed as naive the notion that, as the Global Fund wants, national governments will automatically fill the gap in funding left as the Global Fund cuts back its financing.

Many point to the situation in Ukraine as an example highlighting the problems of the NFM.

According to a report from the Open Society Foundations, Global Fund spending on HIV will drop by more than 50 percent for Ukraine between 2014 and 2015. This includes reductions in unit cost spending for people who use drugs by 37 percent, for sex workers by 24 percent and for men who have sex with men by 50 percent.

Meanwhile, the national HIV prevention budget was slashed by 71 percent in 2014 amid political and economic upheaval.

Lintsova, who lives in central Ukraine, told IPS of the problems drug users are currently facing.

She said that not only are there shortages of the right drugs to treat TB in some parts of the country, but that very few drug users have access to them. Places on opiate substitution treatment (OST) programmes are very limited and waiting times to join them long, sometimes fatally so.

“I know two people who died waiting to get on an OST programme,” she told IPS. “And there are other problems like a lack of needle exchange centres in rural areas, in fact a lack of any harm reduction services in small towns, which leads to high rates of HIV in those places.”

She added that without proper funding, the situation would not improve. “The only solution to these problems is financing,” she said.

But other stakeholders have also privately raised fears that a greater government role in fields such as drug procurement could see authorities looking to save money and procuring larger quantities of cheaper TB drugs of worse quality. Meanwhile, local legislation also makes procurement tenders long and difficult, leading, some health care experts predict, to governments running out of stocks of some essential medicines.

It is unclear how governments will deal with the reduction of Global Fund financing. The transition from Global Fund to domestic funding, although widely announced and anticipated, is not going smoothly in all countries.

Many are often unclear when the Global Fund will actually leave because no straightforward timing plan has been set. There are also specific problems in individual states. In Ukraine, in particular, domestic TB funding has been severely affected by the military conflict, struggling economy and currency fluctuation.

Late last month, these growing fears prompted 24 prominent NGOs in the region to send an open letter to the Global Fund warning of their ‘grave concerns’ over the allocation of funding in the region and calling for it to work with local groups and affected communities.

They specifically asked it to look at each country individually, rather than adopt a “one size fits all” approach.

The Global Fund declined to respond when contacted by IPS.

However, drug users who spoke to IPS said there was little hope of an improvement in the region’s HIV/AIDS and TB epidemics if the Global Fund fails to heed NGOs’ warnings.

Lintsova told IPS: “A lack of reaction to our calls could lead to problems accessing prevention and treatment programmes and a deepening of the EECA’s HIV/AIDS and TB epidemics.”

(Edited by Phil Harris)

A MDR-TB patient at a Médecins Sans Frontières clinic in Manipur in north-eastern India. Credit: Bijoyeta Das/IPS.

By Bijoyeta Das
NEW DELHI, Mar 5 2014 (IPS)

For years Joba Hemron, 50, prayed that her cough would go away. She was diagnosed with Tuberculosis (TB) in 2011. She was put on a Directly Observed Treatment Short-course (DOTS), provided free at a public health clinic in Bongaigaon district in Assam.

But soon she began missing too many doses. “My sons work in the fields, I was too weak to go on my own to get the pills,” she says. She went to a private clinic, hoping to collect all the medicines at once. That was expensive, which meant she could again not complete the course."Each time the patient moves from one doctor to another, physicians tinker around with the drug combination, further worsening the drug resistance."

Three years and five doctors later, she kept losing weight. “I took medicines whenever convenient but I was only getting worse.” Her family sold a goat and with the money traveled to the state’s capital, Guwahati.

She was diagnosed with multi-drug resistant TB (MDR-TB). “I don’t know what this means, no one explains anything. Will I get well?” she asks. Her frail body shakes as cough rakes her lungs.

For many like Hemron, lack of proper diagnosis and interrupted dosages are increasing their resistance to available drugs. Drug resistance is human-made – an iatrogenic disease resulting from mismanagement of TB, experts say.

Drug resistant TB can occur as a primary infection or develop during a patient’s treatment. India accounted for the greatest increase in MDR-TB in 2012 with an estimated 64,000 new cases.

India provides free TB treatment through the Revised National Tuberculosis Control Programme (RNTCP), which reaches 1.5 million patients. TB remains the deadliest infectious disease in the country with two deaths every three minutes. India has more than a quarter of TB cases globally.

Ramanan Laxminarayan, vice-president of the Public Health Foundation of India says the national TB programme is “stuck in the 1990s.” It is yet to rope in all available tools and involve the private sector.

“Every case of MDR-TB can be 20 times more expensive to treat than a sensitive strain and cause much greater inconvenience, pain and suffering for the patient,” he adds.

Despite regular adherence to medicines, some patients are becoming resistant to frontline drugs. In Mumbai, doctors at Hinduja Hospital said they had identified patients who are “totally drug resistant,”and did not respond to any available drugs. The Indian government rejected the claim.

According to the World Health Organisation (WHO), about 450,000 people contracted DR-TB in 2012. About half of them are in India, China and Russia. An estimated four-fifths of DR-TB cases are still undetected. There were 170,000 MDR-TB deaths globally in 2012.

Madhukar Pai, associate director at McGill International TB Centre, a research organisation situated at the McGill University Health Centre in Montreal, Canada, explains that neither public nor private healthcare providers offer quality TB care. He says there are many instances of wrong drug regimens, low quality drugs, scarce monitoring of treatment adherence, patient movement between providers, adding single new drugs to already failing regimens, and inadequate use of drug-susceptibility testing. All this results in MDR and extensively drug resistant (XDR) TB.

MDR-TB treatment is expensive, the treatment often lasts up to two years, with increased risks. Access to the two new MDR-TB drugs— bedaquiline and delamanid, remains limited. They are available in India only through compassionate use mechanisms.

Most patients in India go the private sector but some abandon treatment because of high costs. By the time patients end up in public hospitals they infect many, and also develop severe forms of drug resistance, Pai says.

“In the private sector, irrational TB prescriptions are so common – doctors make up their own drug combinations. This is disastrous. And each time the patient moves from one doctor to another, physicians tinker around with the drug combination, further worsening the drug resistance,” he says.

About 10 percent of drugs in India are estimated by some doctors to be fake, which can muddle up treatment. Testing for drug-resistance is limited in the public sector. “Empiric treatment is used,” Pai says, not treatment that is tailored to a patient’s drug susceptibility profile. This results in selection of drug resistant strains.

The solution isn’t “merely technological”, says Mike Frick of the Treatment Action Group, a research and policy think thank based in the U.S.

New diagnostic machines like GeneXpert may uncover more cases of drug resistance but “it cannot solve the health system’s failure to link patients to the highest level of care that is their right,” says Frick. India fails to provide psycho-social and economic support for patients.

Globally, funding for research into TB has fallen. Governments have slashed budgets; Pfizer and AstraZeneca have abandoned anti-invectives research – increasing the wait for better drugs, diagnostics and vaccines. “It decreases our chances of replacing toxic drugs in the current MDR-TB regimen with newer, safer drugs that are easier for patients to tolerate,” Frick tells IPS.

In 2013, there were numerous reports of drug stock-outs in India, which the government denied. Many patients had to stop treatment; others were turned away from clinics. When treatment is incomplete, it creates an opportunity for drug-resistance to develop.

“The cruel irony is that even as Indian generic manufacturers continued to produce many of the TB drugs that people in other countries depend on, the Indian government couldn’t guarantee TB drug availability to its own people,” Frick adds.

TB is an opportunistic disease and HIV positive patients are more susceptible. Daniel, who asked only his first name be used, is a HIV positive patient. Six months ago he was diagnosed with MDR-TB. “The medicines are so hard, drain me of all strength,” he says.

He is forced to go to public hospital because of the exorbitant costs of medicines. “But there are long waits and everyone comes to know about you. It only adds to the existing stigma.”