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How Much does Our HIV Response Depend on US Funding?

On By ModernMedia
The United States has slashed its HIV funding — through the PEPFAR programme — to African countries. Archive photo: Ashraf Hendricks

By Jesse Copelyn

After the US slashed global aid, the South African government stated that only 17% of its HIV spending relied on US funding. But some experts argue that US health initiatives had more bang for buck than the government’s programmes. Jesse Copelyn looks past the 17% figure, and considers how the health system is being affected by the loss of US money.

In the wake of US funding cuts for global aid, numerous donor-funded health facilities in South Africa have shut down and government clinics have lost thousands of staff members paid for by US-funded organisations. This includes nurses, social workers, clinical associates and HIV counsellors.

Spotlight and GroundUp have obtained documents from a presentation by the National Health Department during a private meeting with PEPFAR in September. The documents show that in 2024, the US funded nearly half of all HIV counsellors working in South Africa’s public primary healthcare system. The data excludes the Northern Cape.

Counsellors test people for HIV and provide information and support to those who test positive. They also follow up with patients who have stopped taking their antiretrovirals (ARVs), so that they can get them back on treatment.

Overall, the US funded 1,931 counselors across the country, the documents show. Now that many of them have been laid off, researchers say the country will test fewer people, meaning that we’ll miss new HIV infections. It also means we’ll see more treatment interruptions, and thus more deaths.

PEPFAR also funded nearly half of all data capturers, according to the documents. This amounted to 2,669 people. Data capturers play an essential role managing and recording patient files. With many of these staff retrenched, researchers say our ability to monitor the national HIV response has been compromised.

These staff members had all been funded by the US President’s Emergency Plan for AIDS Relief (PEPFAR). The funds were distributed to large South African non-government organisations (NGOs), who then hired and deployed the staff in government clinics where there is a high HIV burden. Some NGOs received PEPFAR funds to operate independent health facilities that served high-risk populations, like sex workers and LGBTQ people.

But in late January, the US paused almost all international aid funding pending a review. PEPFAR funds administered by the US Centres for Disease Control (CDC) have since resumed, but those managed by the US Agency for International Development (USAID) have largely been terminated. As a result, many of these staff have lost their jobs.

The national health department has tried to reassure the public that the country’s HIV response is mostly funded by the government, with 17% funded by PEPFAR – currently about R7.5 billion a year. But this statistic glosses over several details and obscures the full impact of the USAID cuts.

Issue 1: Some districts were heavily dependent on US funds

The first issue is that US support isn’t evenly distributed across the country. Instead, PEPFAR funding is targeted at 27 ‘high-burden districts’ – in these areas, the programme almost certainly accounted for much more than 17% of HIV spending. Some of these districts get their PEPFAR funds from the CDC, and have been less affected, but others got them exclusively from USAID. In these areas, the HIV response was heavily dependent on USAID-funded staff, all of whom disappeared overnight.

Johannesburg is one such district. A doctor at a large public hospital in this city told Spotlight and GroundUp that USAID covered a substantial proportion of the doctors, counsellors, clerks, and other administrative personnel in the hospital’s HIV clinic. “All have either had their contracts terminated or are in the process of doing so.”

The hospital’s HIV clinic lost eight counselors, eight data capturers, a clinical manager, and a medical officer (a non-specialised doctor). He said that this represented half of the clinic’s doctors and counselors, and about 80% of the data capturers.

This had been particularly devastating because it was so abrupt, he said. An instruction by the US government in late-January required all grantees to stop their work immediately.

“There was no warning about this, had we had time, we could have made contingency plans and things wouldn’t be so bad,” he explained. “But if it happens literally overnight, it’s extremely unfair on the patients and remaining staff. The loss of capacity is significant.”

He said that nurses have started to take on some of the tasks that were previously performed by counselors, such as HIV testing. But these services haven’t recovered fully and things were still “chaotic”.

He added, “It’s not as if the department has any excess capacity, so [when] nurses are diverted to do the testing and counselling, then other parts of care suffer.”

Issue 2: PEPFAR programmes got bang for buck

Secondly, while PEPFAR may only have contributed 17% of the country’s total HIV spend, some researchers believe that it achieved more per dollar than many of the health department’s programmes.

Professor Francois Venter, who runs the Ezintsha research centre at WITS university, argued that PEPFAR programmes were comparatively efficient because they were run by NGOs that needed to compete for US funding.

“PEPFAR is a monster to work for,” said Venter, who has previously worked for PEPFAR-funded groups. “They put targets in front of these organisations and say: ‘if you don’t meet them in the next month, we’ll just give the money to your competitors’ and you’ll be out on the streets … So there’s no messing around.”

US funding agencies, he said, would closely monitor progress to see if organisations were meeting these targets.

“You don’t see that with the rest of the health system, which just bumbles along with no real metrics,” said Venter.

“The health system in South Africa, like most health systems, is not terribly well monitored or well directed. When you look at what you get with every single health dollar spent on the PEPFAR program, it’s incredibly good value for money,” he said.

Not only were the programmes arguably well managed, but PEPFAR funds were also strategically targeted. Public health specialist Lynne Wilkinson provided the example of the differentiated service delivery programme. This is run by the health department, but supported by PEPFAR in one key way.

Wilkinson explained that once patients are clinically stable and virally suppressed they don’t need to pick up their ARVs from a health facility each month as it’s too time-consuming both for them and the facility. As a result, the health department created a system of “differentiated service delivery”, in which patients instead pick up their medication from external sites (like pharmacies) without going through a clinical evaluation each time. But Wilkinson noted that before someone can be enrolled in that service delivery model, clinicians need to check that patients are eligible.

“Because [the enrollment process] was going very slowly … this was supplemented by PEPFAR-funded clinicians who would go into a clinic and review a lot of clients, and get them into that system”. By doing this, PEPFAR-funded staff successfully resolved a major bottleneck in the system, she said, reducing the number of people in clinics, and thus cutting down on waiting times.

Not everyone is as confident about the overall PEPFAR model. The former deputy director of the national health department, Dr Yogan Pillay, told Spotlight and GroundUp that we don’t have data on how efficient PEPFAR programmes are at the national level. This needs to be investigated before the health department spends its limited resources on trying to revive or replicate the programmes, argued Pillay who is now the director for HIV and TB delivery at the Gates Foundation.

While he said that many PEPFAR-funded initiatives were providing crucial services, Pillay also argued that “the management structure of the [recipient] NGOs is too top-heavy and too expensive” for the government to fund. Ultimately, we need to consider and evaluate a variety of HIV delivery models instead of rushing to replicate the PEPFAR ones, he said.

Issue 3: PEPFAR supported groups that the government doesn’t reach

An additional issue obscured by the 17% figure is that PEPFAR specifically targeted groups of people that are most likely to contract and transmit HIV, like people who inject drugs, sex workers, and the LGBTQ community. These groups, called key populations, require specialised services that the government struggles to provide.

Historically, PEPFAR has given NGOs money so that they could help key populations from drop-in centres and mobile clinics, or via outreach services. All of this operated outside of government clinics, because key populations often face stigma in these settings and are thus unwilling to go there.

For instance, while about 90% of surveyed sex workers say that staff at key populations centres are always friendly and professional, only a quarter feel the same way about staff at government clinics. This is according to a 2024 report, which also found that many key populations are mistreated and discriminated against at public health facilities. (Ironically, health system monitoring organisation Ritshidze, which conducted the survey, has been gutted by US funding cuts.)

While the key populations centres funded by the CDC are still operational, those funded by USAID have closed. The health department has urged patients that were relying on these services to go to government health facilities, but researchers argue that many simply won’t do this.

Venter explained: “For years, I ran the sex worker program [at WITS RHI, which was funded by PEPFAR] … Because sex workers don’t come to [health facilities], you had to provide outreach services at the brothels. This meant … we had to deal with violence issues, we had to deal with the brothel owners, and work out which days of the week, and hours of the day we could provide the care. Logistically, it’s much more complex than sitting on your bum and waiting for them to come and visit you at the clinic.

“So you can put up your hand and say: ‘Oh they can just come to the clinics’ – like the minister said. Well, then you won’t be treating any sex workers.” Venter said this would result in a public health disaster.

He argued that one of the most crucial services that key populations may lose access to is pre-exposure prophylaxis (PrEP), a daily pill that prevents HIV.

While the vast majority of government clinics have PrEP on hand, they often fail to inform people about it. For instance, a survey of people who are at high-risk of contracting HIV in KwaZulu-Natal found that only 15% were even aware that their clinic stocked PrEP.

Another large survey found that at government facilities, only 19% of sex workers had been offered PrEP. By contrast, at the drop-in centres for key populations, the figure was more than double this, at 40%. Without these centres, the health system may lose its ability to create demand for the drug among the most high-risk groups.

One health department official told Spotlight and GroundUp that the bulk of the PrEP rollout would continue despite the US funding cuts. “The majority of the PrEP is offered through the [government] clinics,” she said, 96% of which have the drug.

However, she conceded that specific high-risk groups like sex workers have primarily gotten PrEP from the key populations centres, rather than the clinics. “This is the biggest area where we are going to see a major decline in uptake for [PrEP] services,” she said.

600 000 dead without PEPFAR?

Overall, the USAID funding cuts have severely hindered the HIV testing programmes, data capturing services, PrEP roll-out, and follow-up services for people who interrupt ARV treatment. And the patients who are most affected by this are those that are most likely to further transmit the virus.

So what will the impacts be? According to one modelling study, recently published in the Annals of Medicine, the complete loss of all PEPFAR funds could lead to over 600 000 deaths in South Africa over the next decade.

While South Africa still retains some PEPFAR funding that comes from the CDC, beneficiaries are bracing for this to end. According to Wilkinson, the PEPFAR grants of most CDC-funded organisations end in September and future grants are uncertain. For some organisations, the money stops at the end of this month.

Meanwhile, if the government has any clear plan for how to manage the crisis, it’s certainly not making this public.

In response to our questions about whether the health department would be supporting key populations centres, the department’s spokesperson, Foster Mohale, said: “For now we urge all people living with HIV/AIDS and TB to continue with treatment at public health facilities.”

When pressed for details about the department’s plans for dealing with the US cuts, Mohale simply said that they could not reveal specifics at this stage and that “this is a work in progress”.

In his budget speech in Parliament on Wednesday, Finance Minister Enoch Godongwana did not announce any funding to cover the gap left by the abrupt end of US support for the country’s HIV response. Prior to the speech, Godongwana told reporters in a briefing that the Department of Health would assist with some of the shortfall, but no further information could be provided.

Published by GroundUp and Spotlight.

Republished from GroundUp under a Creative Commons Attribution-NoDerivatives 4.0 International License.

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Categories : General Interest HospitalsTags :

My Five-hour Wait for Treatment at Mamelodi Hospital

On By ModernMedia

Gauteng Health MEC has said Mamelodi Regional Hospital meets National Health Insurance standards, but my experience was not good

The writer waited five hours for treatment for a broken wrist and head injuries at Mamelodi Regional Hospital in Tshwane. Photo: Warren Mabona.

By Warren Mabona

I waited five hours to get medical treatment at Mamelodi Regional Hospital in Tshwane, with a broken wrist and an injured head.

On 19 February 2025 at about 4pm I was walking in Mamelodi West. I was on a journalism assignment, heading to informal settlements that are prone to flooding.

The street was quiet, but I felt safe because I had walked there before. Suddenly, a car stopped in front of me, and two men got out of it and tried to rob me. I ran away and jumped into the stormwater passage, but slipped and fell, hitting my face against the concrete.

When I managed to stand up, I was dizzy and my vision was blurred. I was drenched in dirty water and my belongings — my cell phone, my wallet and my camera bag — were wet.

The men who attacked me were no longer on the street. My right wrist was swollen and painful, an injury above my eye was bleeding profusely, and my head was aching. But I was relieved that I was still alive and I still had all my belongings.

I decided not to call an ambulance, but to walk about 800 metres to Mamelodi Regional Hospital.

I went to the casualty unit, expecting that I would receive treatment quickly. At the front desk, a clerk took more than 20 minutes to fill in my file. He said the hospital’s computer system was offline and he had to fill in the file with a pen. I then went to sit at the reception area. My head was aching and I repeatedly requested headache tablets from the nurses, who gave me two tablets after 30 minutes. But my pain lingered.

The wound on my face was still bleeding and my wrist was swollen and bent. About 40 minutes after my arrival, a nurse cleaned my wound and wrapped it with a bandage, stopping the bleeding.

At about 8pm, a man sitting next to me said he had arrived at the hospital at 2pm after falling from scaffolding at a construction site. He was still waiting for his X-ray results.

I went for X-rays and long afterwards, at about 10pm, I had a cast put on my wrist. I was given injections which helped with the pain. I was discharged at 11pm and went home.

In September last year, the Gauteng MEC for Health Nomantu Nkomo-Ralehoko said that Mamelodi Regional Hospital was the first hospital in Gauteng ready to meet National Health Insurance (NHI) standards.

In response to GroundUp’s questions, Gauteng Department of Health spokesperson Motalatale Modiba said a triage priority system is followed at the hospital, meaning that four patients with critical wounds that required life-saving emergencies were attended to first. He said this affected my waiting time for wound care and the application of a cast.

“You were classified as Orange P2, that is a person who is in a stable condition and is not in any immediate danger, but requires observation,” said Modiba.

“At the time of your arrival, the casualty unit had 31 other patients to be seen. These include four critical cases in the resuscitation unit, ten trauma cases, 16 medical cases and four pediatric cases,” he said.

Modiba confirmed that the hospital’s computer system was offline when I arrived.

I asked Modiba whether the Gauteng Department of Health can still confidently regard this hospital as NHI-ready despite the slow delivery of medical services I experienced. Modiba said: “Mamelodi Regional Hospital remains committed to provide best healthcare services.”

Republished from GroundUp under a Creative Commons Attribution-NoDerivatives 4.0 International License.

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Categories : Healthcare Politics and RegulationsTags :

Over 15 000 South African Health Workers’ Jobs are at Risk as US Cuts Aid

On By ModernMedia
Photo by Scott Graham on Unsplash

By Jesse Copelyn

If the US President’s Emergency Plan for AIDS Relief (PEPFAR) is halted, the South African public health system “will face a severe crisis” that could endanger millions of lives. This is according to a coalition of 17 health service organisations in South Africa, including large ones such as Anova Health, Health Systems Trust, TB HIV Care, The Aurum Institute and Wits RHI.

In a statement, they appealed to private sector donors and “high net-worth individuals” to help fund the shortfall caused by US aid cuts.

Read the statement

PEPFAR is a multi-billion dollar US initiative that supports HIV and TB-related health services around the world. In South Africa alone, over 15 000 staff (mostly health workers) are funded by PEPFAR, according to the national health department.

But a series of executive orders issued by US President Donald Trump has suspended some of this funding and the rest remains precarious. The orders include a 90-day pause on all US foreign development assistance and another that explicitly bars South Africa from aid (with some leeway allowed).

Some health service providers in South Africa continue to receive money from PEPFAR under a limited waiver that allows for the continuation of certain “life-saving HIV services”. But the waiver hasn’t protected all PEPFAR beneficiaries. As a result, some organisations have had to close their doors, while many others have had to curtail what they can provide.

The waiver doesn’t cover all health services, and many health programs that target high-risk groups (such as people who use drugs) have not been protected. This is even if they provide life-saving HIV services.

Services suspended for the most vulnerable

Under the waiver, PEPFAR can continue to fund programs that offer treatment and testing for HIV, including antiretroviral (ARV) services. Projects can also continue to provide condoms and HIV prevention medication, known as PrEP, but only to pregnant and breastfeeding women.

The waiver does not allow for continued funding of PrEP medication or condoms to anyone else. It also doesn’t cover crucial research, like population surveys which tell us how many people have HIV and where they’re located. Additionally, it doesn’t allow for continued funding of methadone maintenance programs for people who use heroin. This is despite the fact that this is the most effective way to help people to stop using heroin and to curb the sharing of drug needles (something which contributes to the spread of HIV).

Dr Gloria Maimela, who represents the coalition of organisations behind the statement, told GroundUp and Spotlight: “The staff who are providing [HIV] testing and treatment [are] back at facilities to provide those services, but staff that are providing other services not included in the waiver have been stopped, and are waiting for further guidance.”

In addition, organisations that help key populations have not been protected by the waiver, according to Maimela. Key populations are groups that are more at risk of becoming infected with HIV, such as people who inject drugs, sex workers, transgender people, and men who have sex with men. South African policy documents and the World Health Organisation recommend that health programs focus on these groups since they’re more likely to acquire and transmit HIV.

Despite this, US-funded organisations that target key populations have been forced to shut their doors in South Africa. Maimela says that this is even in cases where they were offering the kind of life-saving ARV treatment covered in the waiver.

“For us, this is of grave concern,” Maimela says, “because we know that right now that is where most of the [HIV] infections lie”.

So far, organisations which provide HIV treatment and prevention services to LGBTI people have been forced to shut down, including the Ivan Toms Centre and Engage Men’s Health.

Additionally, GroundUp and Spotlight have identified two PEPFAR-supported harm reduction centres that have had to close. These centres provided methadone and clean needles to people who inject drugs (when drug users have access to clean needles, they’re less likely to resort to sharing them, which brings down HIV transmission).

Ricardo Walters, who provides consulting services to health service organisations across Africa, told Spotlight and GroundUp that a similar trend could be seen across the continent.

“Many organisations that were specifically offering services to key populations were not suspended; their project funding was terminated,” he said. “They will not be coming back.”

These organisations were assisting patients “who often could not access services in a general [health] setting”.

Walters says the reasons given for the termination of these programs vary across organisations and countries.

“Where there are reasons, it’s often [stated] that it’s because the program contains components of DEIA [Diversity, Equity, Inclusion and Accessibility] and gender ideology, which is directly from a previous executive order [in which the Trump administration terminated all federal funding for DEIA]. The terms are never defined … no one says don’t treat gay men.”

Appeal to private sector

Beyond the shuttering of existing organisations, providers that are covered under the waiver remain unsure about whether funding will restart after the 90-day period. Also large sections of the US aid establishment have been gutted.

The recent statement by health organisations argues that if this aid is terminated “patients, including children, will lose access to life-saving antiretroviral treatment, while thousands of healthcare workers will be unable to provide essential HIV care. The consequences will be immediate. Fewer people will receive timely testing and treatment, leading to more undiagnosed cases, rising infections, and the spread of drug resistance. Mortality will increase, opportunistic infections will surge, and TB rates will escalate – putting the entire population at risk.”

As such, the statement calls on private corporations, donors and philanthropists to assist in supporting these health services.

“We encourage people to get in touch with us,” says Maimela, “so that even as we hold dialogues with the government, [those people] could be part of [the conversation] and step in and say how they want to help.”

To find out how to support organisations that provide HIV and TB related health services in South Africa contact Gloria Maimela at gloriam@foundation.co.za.

Published jointly by GroundUp and Spotlight.

Republished from GroundUp under a Creative Commons Attribution-NoDerivatives 4.0 International License.

Categories : Healthcare Politics and RegulationsTags :

Stopping Health Funding in Africa Weakens America

On By ModernMedia

This is an opportunity for President Ramaphosa to lead

Photo by Andy Feliciotti on Unsplash

By Nathan Geffen and Marcus Low

President Donald Trump’s administration took a cruel decision this past week to freeze US foreign aid for health, potentially leaving millions of people in many African countries without their life-saving antiretroviral treatment.

On Wednesday morning, Trump’s secretary of state Marco Rubio backtracked on part of that decision. But if it is not reversed permanently we can expect advances in life expectancy in sub-Saharan Africa of the past two decades to start coming undone. We can also expect HIV infection rates to start picking up again, as people with HIV start getting viral rebound and become more infectious.

The President’s Emergency Plan for AIDS Relief (PEPFAR) was started by the Republican administration led by George W. Bush in 2003. The complexity of world politics is such that the president who perhaps did more than anyone else to unravel confidence in global rules and norms – by invading Iraq – also championed a programme that has saved many millions of lives. Bush described PEPFAR as “compassionate conservatism”.

PEPFAR had bipartisan support. It is one of the greatest contributions the US has made to the world. It is now under threat by people claiming with straight faces – who came to power while the US economy is booming – to make America great again.

About $5-billion went into PEPFAR last year. Although it’s a huge amount of money it’s a tiny fraction of the US budget. It’s not straightforward to measure how many lives PEPFAR has saved but it is in the millions. This is a lot of bang for the buck.

The US government is also the largest contributor to the other major funder of global health: the Global Fund. Its future is also bleak.

Already in South Africa, vital services for extremely vulnerable clients had to pause, such as those provided by the Wits Reproductive Health and HIV Institute clinics in Johannesburg. Hopefully with Rubio’s announcement these can now resume but the situation remains chaotic and the future of this and other US-funded health programmes across Africa is fraught with uncertainty.

Opportunities

America’s abandonment of foreign aid for health relinquishes soft power. There is an opportunity here for the European Union, Canada, Australia, Japan and China to step into the breach and increase their contributions to the Global Fund, or even to directly plug holes left by PEPFAR using bilateral aid – though such funding may come too late for some.

This would not merely be an act of charity. In the post-World War II world, what has made countries great, powerful, prestigious and influential is not nastiness and murder, but investing in projects of solidarity that make the world a better place. US wars in Vietnam, Afghanistan and Iraq degraded US power. Its arming of Israel, especially during the war on Gaza, has shown US concern for universal human rights to be hypocritical and worsened its global standing. By contrast PEPFAR unequivocally enhanced its superpower status.

President Cyril Ramaphosa can display great leadership by meeting with leaders of wealthy countries and convincing them to increase spending to support the health systems of poorer countries.

But perhaps the biggest opportunity is for African countries themselves. Many remain far too dependent on foreign aid to run their health systems. A country like South Africa should be able to pay for every last cent of its health systems. Corruption and mismanagement have had an inordinate role in making this difficult.

For countries like Malawi, Mozambique and others, there is a long way to go before they can pay their own way for HIV treatment. But pressure, from within and out these countries, must be put on their governments to build robust economies capable of delivering tax revenue to spend more on health.

In a very divided world where illiberal nationalist populism is on the rise and African governments are for the most part still weak and corrupt, these opportunities seem unlikely to be seized. But we hope we are proven wrong.

Geffen is the editor of GroundUp. Low is the editor of Spotlight. Both served in the Treatment Action Campaign which successfully campaigned for HIV medicines in South Africa, as well as other countries.

Republished from GroundUp under a Creative Commons Attribution-NoDerivatives 4.0 International License.

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Categories : UncategorizedTags : 1 Comment

Community Health Workers must be Made Permanent, Rules Labour Court

On By ModernMedia
Photo by Tingey Injury Law Firm on Unsplash

By Tania Broughton

The Johannesburg Labour Court has ruled that community health workers, who for years have been employed by the health department on recurring fixed-term contracts, must be deemed permanent government employees.

The National Health and Allied Workers Union (NEHAWU), on behalf of its members, has successfully overturned a previous bargaining council ruling that the temporary contracts were legal.

There are an estimated 50,000 community health workers. The recurring fixed-term contracts left them without job security and other benefits of permanent employment.

Read the judgment here

The issue was first ventilated before the Public Health and Social Development Sectoral Bargaining Council in 2021. The commissioner found that the contracts were permitted by the Public Service Act, were concluded through collective agreements with unions, and were justified in terms of the Labour Relations Act (LRA) as they were funded by an “external source for a limited period” – the National Treasury.

NEHAWU took the ruling on review. The matter was argued before Johannesburg Labour Court Acting Judge Ashley Cook in October last year. He handed down his ruling on 23 January 2025, overturning the bargaining council’s findings.

On the issue of “external funding” – the legal justification in the LRA for fixing the contract terms – Judge Cook said the department had correctly submitted that it was not disputed that the funding for the employment of the community health workers was a conditional grant approved by national treasury on an annual basis.

“However, what was in dispute was whether the conditional grant was from an external source. The department receives all revenue from the National Treasury,” Judge Cook said.

As funding for all public servants was sourced from the Treasury, this meant that it was not an “external source”, and therefore the department could not rely on it as a “justifiable reason” to deviate from the provisions of the LRA.

The contracts of the community health workers were therefore, in terms of the Act, deemed to be of an “indefinite duration”, the judge said, setting aside the arbitration award.

He made no order as to costs.

NEHAWU welcomed the ruling. In a statement, it said community health workers had been on perennial contractual renewals without a clear explanation from the Department of Health.

“The court determined that it is common cause to all parties that there is a permanent need for the work tendered by community health workers as conceded by the counsel for the state.”

The union said it would continue to fight for the “permanent absorption” of all the workers and would be meeting with its members to advise on how it would ensure the implementation of the judgment.

Republished from GroundUp under a Creative Commons Attribution-NoDerivatives 4.0 International License.

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Categories : Ethics and Law Respiratory DiseasesTags :

Activists Furious after Competition Commission Drops Probe into Pharma Company

On By ModernMedia

Life-saving drugs still not available to many cystic fibrosis patients

Photo by Robina Weermeijer on Unsplash

By Tania Broughton

Health campaigners have slammed a decision by the Competition Commission to end its investigation into Vertex Pharmaceuticals’ monopoly on life-saving medicines for people living with cystic fibrosis.

“We are concerned that the Commission has fallen victim to Vertex’s well-known and aggressive PR and legal strategy, designed to safeguard its global patent monopoly at all costs,” said a statement by nine organisations: the South African Cystic Fibrosis Association, Right to Breathe Campaign, Health Justice Initiative, Vertex Save Us, Just Treatment, SECTION27, Treatment Action Campaign, People’s Health Movement and Cancer Alliance.

The Commission, in a statement released on 11 December, said it had initiated the probe against Vertex based on allegations that it was engaging in exclusionary practices and excessive pricing in the provision of Kalydeco, Orkambi, Symdeko and Trikafta – medicines used to treat cystic fibrosis.

“Following the Commission’s investigation and various engagements with Vertex, Vertex gave formal undertakings to the Commission to continue to make Trikafta available in South Africa through Section 21 of the Medicines and Related Substances Act, which enables the sale of unregistered drugs within South Africa,” it said.

This undertaking, it said, had resulted in a “non referral” of all allegations against the company.

It said that Trikafta had broadly replaced the use of the other medicines. Previously patients with cystic fibrosis had to import it. To reduce the financial burden, Vertex had from April this year begun supplying it through a local distributor.

“This makes Trikafta available locally at prices that enable cystic fibrosis patients to access treatment. Separately, financial assistance is available through a patient assistance programme managed by a non-government organisation, and eligible cystic fibrosis patients who belong to certain medical schemes get Trikafta at no cost as they also receive some financial assistance from their medical aid schemes.”

Unavailable

But health campaigners are not happy They say for the vast majority of cystic fibrosis patients (about 63%), nothing has changed.

“The real victims of this decision by the Commission are the most vulnerable South African children and young people who rely on the public health sector, who are not rich, and who have little or no medical scheme cover,” they said.

“These patients do not currently, and will not get access to this medication because of Vertex’s patents and secretive, limited access and excessive pricing strategies.”

Alarmingly, they said, the medicine remains unregistered in South Africa, forcing patients to either import it or rely on the “administratively burdensome” section 21 approval process.

“This is not a sustainable way to address a chronic treatment need,” they said.

The so-called patient assistance programme did not promote equity, was far from transparent, nor sustainable and the price was undisclosed.

They said they were seeking an urgent meeting with the Commission

“We cannot allow the manipulation of South Africa’s laws, regulations and health system to go unchecked in the name of one drug company’s self-interested monopoly greed.”

Vertex replies

Approached for comment, Vetex said more than 180 cystic fibrosis patients were accessing the medicine through the Section 21 pathway “which represents about 50% of the eligible population”.

“We took this pathway because we strongly believe that this is the fastest and most efficient route to sustainable access in South Africa, given that it does not require a regulatory filing, which can take many years.”

The company said even with regulatory approval, most novel, high value medicines were not included on the Prescribed Minimum Benefits list.

“There is therefore no obligation for funders [private and public health insurances] to reimburse the costs of these medicines, which effectively make them inaccessible to most patients. In our opinion, a license application would not speed up the process for broad access to our cystic fibrosis medicines.”

It said its triple combination therapy was currently funded by eleven healthcare providers, who cover most cystic fibrosis patients in the private sector in the country.

“We are continuing discussions with other health insurers and are in parallel exploring potential sustainable access opportunities in the public sector, which has been historically challenging for rare disease medicines in South Africa.”

It said “exact pricing” and details of its partnerships remained confidential.

Republished from GroundUp under a Creative Commons Attribution-NoDerivatives 4.0 International License.

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Categories : HIV Substance UseTags :

Alarming Rise in HIV among Drug Users as Government Fails to Implement Policy

On By ModernMedia

Needle programs are officially supported, but the state often obstructs them

Photo by Raghavendra V Konkathi on Unsplash

By Jesse Copelyn

Rates of HIV and Hepatitis C are “extremely high” among people who inject illicit drugs, according to new research by TB HIV Care. The organisation tested over 1200 injecting drug users in Tshwane, eThekwini, Mashishing and Mbombela (formerly Nelspruit).

In Tshwane 72% tested positive for HIV and nearly 90% had antibodies for hepatitis C virus (HCV), which could indicate past or present infection.

HCV is a blood-borne virus which damages the liver. When left undiagnosed it can be fatal, though it’s usually curable if treated.

Less than half of those who tested positive for HIV in Tshwane were aware of their HIV status. As such they would not have been on treatment and could have been spreading the virus without knowing.

Survey SiteHIV Prevalence among people who inject drugsAntibodies for Hepatitis C among people who inject drugsShare of HIV positive people who knew their status
eThekwini49%75%76%
Mashishing45%41%77%
Mbombela30%91%64%
Tshwane72%89%48%
Results of the TB HIV Care survey of four cities.

People who inject drugs (such as heroin) are at a higher risk of contracting HIV and HCV when needles are shared – something which happens because drug users don’t have easy access to new ones.

This has long been a problem in South Africa and appears to be getting worse. Research conducted in eThekwini in 2013 found that 17% of injecting drug users were HIV-positive. According to the new research, a decade later the figure has nearly tripled to 49%.

Professor Harry Hausler, CEO of TB HIV Care and a former technical advisor to the National Department of Health on TB/HIV, believes the main reason for this “massive” uptick in blood-borne diseases among drug users is “the limited access to needle and syringe programs” in the country.

Government ignored its own solution

Research shows overwhelmingly that providing clean needles to drug users reduces the spread of HIV, not only by removing the need to share injecting equipment but often because needle programs offer other services such as health education and condoms.

A large review published in 2017 identified 133 academic studies on needle and syringe programs (commonly known as NSP). The results were “supportive of the effectiveness of NSP in reducing HIV transmission among [people who inject drugs], as well as in reducing HCV infection, although the latter to a lesser extent”.

South Africa’s Drug Master Plan, government’s official policy document for managing illicit drug use, explicitly endorses needle and syringe programs, as does the National Strategic Plan on HIV, TB and STIs.

Yet despite these formal policy commitments, there is virtually no public funding for such interventions.

A person discards used needles in a specialised bin provided by TB HIV Care at a mobile clinic in Wynberg, Cape Town.

One exception is the Pretoria-based Community Oriented Substance Use Program, sponsored by the Tshwane Municipality. It has been left to non-profit groups, such as TB HIV Care, to provide these services. According to Hausler, the organisation currently provides clean needles to nearly 10 000 injecting drug users in Cape Town, Nelson Mandela Bay, eThekwini, Tshwane and Mbombela.

Users access needles from drop-in centres as well as mobile clinics – usually vans that get driven on set days to areas where injecting users congregate. Users discard their old needles in specialised bins provided by TB HIV Care. They will then receive a pack, which includes clean needles, alcohol swabs and sterile water.

Nurses are present at the mobile clinics so users can also get tested for HIV and HCV. They also offer ordinary medical services, such as cleaning and bandaging wounds.

Mobile clinics are also manned by psychosocial and human rights workers, and peer educators (people who were beneficiaries but now work for TB HIV Care) from whom users can get counselling or report abuses.

“We’re not just a needle provision organisation”, says Loraine Moses, who oversees quality standards for the program. “We’re a health services organisation”. Users have to register with peers and get health counselling and education before getting their needles, she says.

Beneficiaries have access to various amenities at TB HIV Care’s drop-in centres, including showers, lounging areas and washing machines.

Needle program as a first step to rehab

In many cases, needle and syringe programs also provide a first point of contact for people who want to stop using drugs.

Anthony (surname withheld), previously a heroin user for 15 years, who now volunteers for TB HIV Care, spoke to GroundUp at a drop-in centre in Cape Town.

“In the beginning, I started experimenting with friends in school [but] after my mother passed away, I found that there are those properties in [heroin] that calm you and numb pain, so that’s when I started to delve [into the drug] more.”

After ending up on the street and becoming “a slave to that drug”, he increasingly wanted to get sober. Fetching needles from a TB HIV Care site, he began speaking with one of the peers. The person told him about TB HIV Care’s opioid agonist program, which helps users to quit or reduce their heroin intake.

Opioid agonists are drugs which block heroin withdrawal. Methadone is the most widely known. Numerous clinical trials show that initiatives which offer methadone to heroin users over an extended period are more effective than rehab programs that force users to quit cold turkey.

Hausler says that TB HIV Care currently provides methadone to over 1100 people. Along with the medicine, they receive counselling and are assisted with finding shelter, and in some cases to reintegrate with their families.

Anthony says he’s been taking methadone since June last year. The program also helped him link up with a shelter and get an ID document so that he could find work.

“Being a client at TB HIV Care has helped me a lot to reintegrate back into society,” he says. “Being on the street, you lose a lot of yourself”.

A notice board at the TB HIV Care drop-in centre in central Cape Town.

Law enforcement continues to confiscate needles

Local governments have assisted TB HIV Care with some of its services. The City of Cape Town provides the HIV tests for use at mobile clinics, according to Hausler.

And yet, not only has the government failed to directly fund the sterile needle programs but in some cases it appears to work against them.

Research carried out by TB HIV Care shows that users frequently have their injecting equipment confiscated by law enforcement officers.

In Tshwane and eThekwini more than half of all people surveyed said that the authorities had seized or destroyed their needles at least once in the previous six months.

OutcomeMashishingMbombelaeThekwiniTshwane
No57%76%31%36%
Yes, In the last 6 months18%20%64%54%
Yes, but not in the last 6 months25%4%5%10%

Results of survey question: Have you ever had your needles and syringes confiscated or destroyed by a police officer/law enforcement? Source: TB HIV Care

“What’s very frustrating is that there are two arms of government,” says Hausler. “There’s health and then there’s police. And police are confiscating needles and syringes that we’ve been providing to clients – [even though what we’re doing] is a clearly endorsed health intervention.”

Hausler notes that in some cases the organisation has “really good alliances with local police”, but in other cases it is a constant battle.

“There needs to be better mainstreaming of education of officials across all government departments on the … HIV and TB response [plans],” says Hausler. “If people were really sensitised, we would not run up against as many obstacles.”

Asked for comment, Gauteng SAPS spokesperson Lieutenant Colonel Mavela Masondo told GroundUp that “possession of needles is not a criminal offence. Therefore, we cannot arrest a person [for] possession of needles, and neither can we confiscate needles”.

Note: The full report by TB HIV Care, which received assistance from the United States CDC, is not yet publicly available. A 16 page summary of some of the findings can be found here.

Professor Harry Hausler, CEO of TB HIV Care, at his office in Cape Town.

Republished from GroundUp under a Creative Commons Attribution-NoDerivatives 4.0 International Licence.

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Categories : Cancer General InterestTags :

What I Learned on My Journey through Breast Cancer

On By ModernMedia

In Breast Cancer Awareness Month we can all do something to help

Photo by Angiola Harry on Unsplash

By Lee-Anne Bruce

I was diagnosed with breast cancer on an ordinary Thursday afternoon in February 2023. I was 34 years old. The December before, my GP had performed a breast exam as part of a general check-up and was concerned that with my dense breast tissue she might be missing something. She wanted me to have an ultrasound, but there was no rush. Her exact words to me were something like: “Don’t worry, it can wait until you have medical aid savings again in January.”

The ultrasound turned up a small shadow, just a centimetre in diameter – something that could be a cyst, but the radiologist thought we should do a mammogram “just in case”. Would I mind waiting? No, I wouldn’t mind. The mammogram was worrying enough that she got approval to do a biopsy the next day. “Just in case”. The results came in the following week.

I had none of the risk factors for breast cancer. I didn’t drink, didn’t smoke, didn’t have any family members with a history of breast cancer, was nowhere near the age of 50. A few months later, I would find out I had none of the genetic markers which can predict risk either – not only did I test negative for the genes associated with breast cancer called BRCA 1 and 2, I didn’t have any of the genes connected with any kind of cancer at all.

As I say, I was diagnosed on a Thursday afternoon. I had my first appointment with an oncologist that Friday morning. I had my first set of scans two days later on Monday and my initial surgery the following Friday. I started chemotherapy treatment within three weeks of first having the word “cancer” used in relation to my body. My doctors moved quickly because they had to. On a scale of 1 to 9 on something called the Bloom and Richardson classification, my cancer was a 9. So, even though I was only stage 1, I was also a grade 3. “Aggressive” doesn’t begin to cover it.

During this time, I held onto five facts. First, we had caught the tumour at exactly the right time. Had I gone in for screening any earlier, we might not have found the cancer yet. Had I gone any later, it likely would have grown and spread to my lymph nodes and other parts of my body and I might have needed more radical treatment and surgeries. Second, it was treatable. My particular kind of cancer ought to respond well to a combination of chemotherapy and radiation. Third, I was otherwise very healthy, aside from the cancer. Fourth, I had a medical aid which was covering almost everything I needed. And, most importantly, fifth, I had a wonderful support system of my partner and his family and our close friends to rely on.

From the beginning, I had an incredible standard of care. To the point where the doctors I saw had heated examination beds – they didn’t want their patients to experience any additional discomfort and distress during such a difficult time. And it was difficult. Chemotherapy and immunotherapy left me feeling battered and broken. Nausea, intense muscular pain, fatigue, vomiting, diarrhoea, constipation, weight gain, hair loss, brain fog, depression – some of the awful side effects it’s impossible to really prepare for. In fact, I had such a hard time mentally during treatment that at one point I had to be hospitalised.

The same day I received my diagnosis, I overheard a woman in my doctor’s office asking if it was possible to make a payment plan for her treatment. The administrators replied that treatment was likely to cost in excess of R300 000 at a minimum. I cannot even begin to imagine having to go into debt to fight off cancer. For treatment that makes you feel more than just sick, more like you’re dying. For treatment that may not necessarily work.

But this is the choice that faces most people with cancer in our country. With a relatively small number of people on comprehensive medical aids with screening benefits and prescribed minimum benefits, many face waiting for treatment in government facilities or running up huge bills at private clinics.

According to the most recent report by Statistics SA, breast cancer is the most commonly diagnosed cancer in women in South Africa, accounting for 23% of all cancers. It is also one of the most deadly, representing 17% of cancer deaths in women, just behind cervical cancer.

The Stats SA report lists “awareness of the symptoms and need for screening” as the main intervention to reduce the risk of death by breast cancer. The report also draws attention to the discrepancy in mortality rates in different population groups. For example, Coloured women have a relatively low incidence of breast cancer, but a high mortality rate – meaning that they are dying of breast cancer after being diagnosed too late. Stats SA points out that this is likely due to “poor access to cancer treatment facilities” as well as a lack of medical aid coverage. It is perhaps unsurprising that Black and Coloured women are the groups least likely to have medical aid in South Africa.

There are also some NGOs trying to step in to fill the gaps, like the aptly named I Love Boobies or the PinkDrive. These organisations make it their mission to give women a fighting chance to beat breast cancer. They provide free screenings to women around the country who would otherwise not be able to afford this necessary medical care.

I am one of the lucky ones. I officially went into remission on 30 August 2023 when I had a lumpectomy to remove the tumour in my right breast. Remission means that the cancer can no longer be detected in your body through scans and blood tests. It doesn’t mean you’re “cured”. There could still be cancerous cells in the body, which is why cancer is also often treated with radiation like mine was. Some people prefer not to use the term “survivor” until they have been in remission for over five years.

Five years is an important milestone for many people diagnosed with cancer. It’s often the period in which someone is most likely to suffer a relapse. I live with the possibility that my cancer will come back every day; I am reminded by my scars and by the fact that I am still recovering physically and mentally from a traumatic year. I still battle with periods of fatigue and depression and I will never be the same person I was before falling ill.

Still, remission is better than relapse. So far, so good. I continue to see my myriad of doctors every few months for scans and tests and examinations to check that nothing has come back yet and I feel like I’m getting stronger.

Almost a year to the day after I went into remission, my fiancé and I ran the Johannesburg Women’s Race in support of the PinkDrive. A mobile health unit was parked on the field in Mark’s Park offering free screenings all morning, which women were queuing up to access after the run. The festive atmosphere was bittersweet to me. Certainly, some of the women in that line would not know that they were starting on a long and painful journey, a journey which sometimes feels like it has no end. Hopefully, they would be starting early enough to be given a chance to become a survivor.

There’s another meaning of “remission” I wasn’t aware of until I looked it up. It can also be defined as “a cancellation of debt”. No-one with cancer should have to crowdfund in order to get treatment, but that is the reality we are faced with in our country. This October, I encourage everyone to contribute in whatever way they can to a cancer survivor’s remission. Join the Imagine Challenge, try a secret swim, pick up a pink bottle of milk or a scrunchie, support someone raising funds on GivenGain, get yourself examined. Every one of us can join the fight against breast cancer.

Republished from GroundUp under a Creative Commons Attribution-NoDerivatives 4.0 International Licence.

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Categories : Ethics and LawTags :

SIU Takes Aim at Ballooning Dodgy Medical Litigation that is Costing the Government Billions

On By ModernMedia
Photo by Scott Graham on Unsplash

By Sandiso Phaliso for GroundUp

Payments of medical related legal claims (medico-legal) against the Department of Health ballooned to R2.7-billion in 2023. In 2013, it was R265-million. This is according to the Special Investigating Unit (SIU) when it briefed the Standing Committee on Public Accounts (SCOPA) last week.

SIU head advocate Andy Mothibi told SCOPA it found evidence of collusion between attorneys, touts, nurses and doctors, in both public and private healthcare. Some law firms also withdrew claims when the SIU started investigating them. This had stopped about R3-billion in fraudulent claims, he said.

Claims under investigation included those targeting families with children born with cerebral palsy, false claims of medical malpractice in state hospitals, and collusion between state healthcare workers and rogue lawyers to unlawfully secure private medical records to initiate claims against the government.

They uncovered cases of agents of rogue law firms impersonating officials of the South African Social Security Agency to secure powers of attorney on behalf of victims by claiming to be securing them social grants. He said they found two attorneys pursuing identical claims for the same individual in two different courts, and for vastly different amounts, in one case for R7.5-million and R25-million for the same patient and same condition

Mothibi said the health sector experienced an explosion of medical practice litigation cases in 2015, directed against health institutions and individual medical practitioners in both public and private practice.

Mothibi said in one case a claimant demanded R70-million for a supposedly botched circumcision at a Limpopo hospital when no circumcision had been performed.

Read the SIU presentation to Parliament

In 2017, the SIU started targeting provinces with the highest share of claims. At that stage, the Eastern Cape’s contingent liability for medico-legal claims was R15.9-billion; in Gauteng, it was R21.2-billion.

In the Eastern Cape, most medico-legal claims emanated from one Johannesburg-based law firm, Nonxuba Attorneys Incorporated. In five years, from 2012 to 2017, the firm submitted 44 claims totaling R497-million against the provincial health department. Nine claims for children born with cerebral palsy were identical each demanding R15-million.

“This was suspicious and indicated a lot of cut-and-paste on the part of this legal firm,” said Mothibi.

The company has, according to Mothibi’s presentation, been charged.

We have been unable to get hold of Nonxuba Attorneys and Business Day has previously reported that the company’s owner, Zuko Nonxuba, has been suspended from legal practice.

Also, in the Mthatha High Court claims increased from 46 to 529 between 2010 and 2016. There was collusion, said Mothibi, between some officials in the Office of the State Attorney, whereby out-of-court settlements for hefty sums were entered into without the mandate or even the knowledge of the department.

MP Veronica Mente-Nkuna (EFF) wanted to know the names of the legal firms implicated besides Nonxuba Attorneys and what the legal bodies have done about their operating licences.

She asked why the Department of Health had not conducted its investigations before the claims were paid. Who was responsible for the loss of money through these fraudulent claims, she asked.

Republished from GroundUp under a Creative Commons Attribution-NoDerivatives 4.0 International License.

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Categories : UncategorizedTags :

Angry Doctors Write to Minister About Unpaid Road Accident Fund Bills

On By ModernMedia

“We implore you to intervene,” medical experts say to Barbara Creecy

By Tania Broughton

A group of more than 70 experts from all branches of medicine say they are all owed money for professional services from the Road Accident Fund – some for as long as seven years.

They have now written to Minister of Transport Barbara Creecy asking for her urgent intervention in what they say is a “disastrous situation”.

“We implore you to intervene and install a leadership in the RAF which is able to carry out its proper functioning with integrity and honesty … we are hopeless and tired,” they said in a letter to the minister.

The letter to Minister Creecy, dated 12 July, was a follow-up to one written in early June to the previous minister Sindisiwe Chikunga. There was no response to that.

Since then, dozens more specialists, including surgeons, psychologists and occupational therapists – who are collectively owed more than R150-million – have added their signatures to the document.

But the fund says it owes them nothing.

“The same people rehash this topic every time there’s a new Minister of Transport,” RAF head of corporate communications, McIntosh Polela said.

He said the experts had not been appointed by the fund but “allegedly by its former panel of attorneys”. The Service Level Agreement with the attorneys specifically stated that medical experts could only be engaged upon written authorisation of the fund. And the fund would not be liable for any fees charged without this authorisation.

He said the vast majority of the experts’ unpaid claims had not been authorised by the fund. This was due to the negligence of former panel attorneys.

In the letter to Creecy, clinical psychologist Monique Kok said the expert appointments were legal.

And, she said, their reports were being used in courts to assist in settling matters.

The fund, she said, was “finding new and cunning ways of explaining and nullifying the expert’s authority to have performed such assessment”.

She said each assessment had been done after some form of written instruction, either from the RAF directly or their panel of attorneys.

“The experts have never acted on their own accord and gone out and somehow magically found the current claimants and performed assessments that cost time and resources without instruction from the RAF or their attorneys.”

Kok said the fund’s refusal to pay their invoices had had a dire impact with some going out of business and losing their homes.

In the follow-up letter to Creecy, psychologist Chris Sampson said the experts wanted a meeting with the minister.

“We have diligently serviced the public for many years by assisting the RAF and the courts in determining appropriate compensation for claimants who were injured in serious motor vehicle accidents.

“It would appear that the organisation (and its leader’s) treatment of its own appointed experts gives us the impression that it has been allowed to become a law unto itself and from court cases it further appears that it refuses to pay claimants, experts or abide by court orders.”

Sampson said the experts conducted “painstaking investigations” and did extensive reports which were being used by the fund and yet were waiting seven years later to be paid.

They had paid out of their own pockets the significant costs of translators, transcribers, equipment and testing material.

“We believe that the state and specifically, your ministry, has a duty to intervene in what has become a well-documented failure, where this statutory body has not carried out its stipulated functions due to either, incompetence, poor leadership, arrogance and/or a fundamental evasion of responsibility and fiduciary duties,” he said.

Speaking to GroundUp, Sampson said he personally was owed about R3-million. Payments had become sporadic since about 2017, and after the Covid pandemic, had completely dried up.

“They come up with a multitude of excuses. They claim we didn’t deliver the reports on time. They repeatedly lose invoices. They say the payments are not loaded on their system , and so there must be something wrong but they don’t tell us what’s wrong. They also accuse us of charging above the tariff when they set the tariff.”

Sampson said litigation, for most, was not an option. “We don’t have deep pockets. And because we have not been paid there is nothing rattling in them.

“But we cannot throw away seven years of hard slog. We have nothing left to lose and we just hope the new minister has the zeal and energy to finally deal with the problems at the fund.”

Creecy’s office has acknowledged receipt of the two letters but attempts by GroundUp to get comment from were unsuccessful.

Republished from GroundUp under a Creative Commons Attribution-NoDerivatives 4.0 International License.

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