COVID-19 and NCDs – a Newly Acknowledged Vulnerability

20 August 2020The South Africa Non-Communicable Diseases Alliance (SA NCDs Alliance) is raising concern over the systemic neglect of non-communicable conditions (NCDs) like obesity, diabetes, high blood pressure, cancer, asthma and mental health problems due to neglected NCDs prevention and treatment. Download infographics

Dr Vicki Pinkney-Atkinson, Director of SA NCD Alliance says, “People living with NCDs believe it’s a health right to have proper access to care and medicines, especially now during a time of pandemic. Before COVID-19, the NCDs group of conditions killed most South Africans and remained neglected within government policy and budgets. For so long the many millions of people living with NCDs have lamented, ‘it would be better if I had HIV, then I would get access to quality care and medicines.”

NCDs, called underlying conditions during COVID-19, cause most deaths in South Africa. Diabetes kills more women than any other single illness for many years. (1) Government media acknowledge that 90% of those who die following COVID-19 infection had one or more NCD. (2)

Act on NCDs Now – Accountability

The early figures coming out of Wuhan showed that NCDs increased the risk of complications and dying. It was clear that survival depended on well-managed conditions such as diabetes. It immediately exposed the fault lines in NCDs care.

The aim is to get government to implement ongoing care for those living with NCDs by health workers during and beyond COVID-19. This includes ensuring adequate supply of medications that don’t involve travel and visits to facilities and making use of online and tools for consultations to minimise physical interaction and exposure.

The Alliance further proposes performance indicators to assess government’s response to COVID-19 and ongoing NCDs care such as maintenance of food and medicine supply chains, protection and support for vulnerable and neglected people and maintenance of usual health services.

“As South Africans went into lockdown in March, the SA NCDs Alliance initiated online support, counselling and information services to keep people healthy such as the diabetes care line. Those of us living with diabetes soon learned that optimal blood sugar control is the best way to survive a COVID-19 infection. However, getting care and a regular supply of medicines in the public sector involved a stark choice; get your medications or get the virus. Unlike for HIV and TB, a remote non-clinic supply point is a rare option. Insulin, absolutely critical to sustain life in diabetes, is only available at a hospital-level even if there is a clinic next door,” elaborated Pinkney-Atkinson.

Zodwa Sithole, Head of Advocacy for CANSA added, “Patients are feeling frustrated and despondent as they struggle to access vital support services. A cancer patient’s low immunity and high infection risk for COVID-19, results in anxiety and physical distancing and hygiene measures add to a feeling of isolation even as lockdown levels are eased. Part of the response was the launch of our CANSA Tele Counselling service offering free, confidential cancer-related telephonic counselling available in seven languages.”

Nosipho (3) puts the human face on the access issue. In late pregnancy, she always needs insulin and asthma medication. Being a savvy diabetic, she knows she is at risk and tries to avoid the minimum five-hour round trip to get her insulin in central Cape Town during the COVID-19 surge. She knows that the risk of infection is high by using public transport and the long waiting lines at the hospital. When asked, the government sectors were unable to offer a solution.

For other NCDs like cancer, there are implications of delaying any screening that can result in cancers being detected at a later stage and affecting treatment outcomes.

Pinkney-Atkinson concludes, “What works to keep diabetics and other people living with NCDs safe, is not a mystery. There is plenty of evidence, we need action to provide ongoing NCDs care during COVID-19. (4) During the COVID-19 pandemic and beyond, we must go beyond stopping the virus and our right to get our ongoing essential services safely. We need these drugs and supplies (needles and syringes) to stay alive.”

For more information, please contact Dr Vicki Pinkney-Atkinson, Director of SA NCD Alliance at email [email protected]
Call 083 38 38-159. Alternate contact is Lucy Balona, Head: Marketing and Communication at CANSA at email [email protected].
Call 011 616 7662 or mobile 082 459 5230.

References:

(1) Statistics South Africa. Mortality and causes of death in South Africa, 2016: Findings from death notification [Internet]. Pretoria; 2018 [cited 2018 Mar 28]. Available from: http://www.statssa.gov.za/publications/P03093/P030932016.pdf
(2) SA Government News Agency. SA COVID-19 cases rise to 3 034. SANews.gov.za. 2020;2
(3) Not her real name
(4) Young T, Schoonees A, Lachman A, Kalula S, Mabweazara S, Musa E, et al. Taking stock of the evidence. Cape Town: Better Health Programme South Africa; 2020. 50 p

About NCDs+

NCDs are a large group of health conditions that are generally not spread from person to person and used to be called chronic illness until 2000 when the Millennium Develop Goals force a new definition. Often the 5 main NCDs groups of conditions are noted: diabetes, circulatory disorders, mental health, cancer, and chronic respiratory illnesses. However, there are many more conditions that do not get a mention. Globally NCDs conditions are responsible for 41 million deaths annually and they are leading cause of death in South Africa since 2013. Diabetes is the leading cause of death of South African women.

However, the NCDs agenda is not just about illness it goes to a whole of society and whole of government response and for this we need an expanded understanding, meaning, NCDs+. The expanded NCDs+ advocacy agenda includes prevention, vulnerable populations, stigma control and disability. NCDs+ has many determinants (social, economic, and commercial) that disproportionately impact poor people. The Sustainable Development Goals (SDGs) address NCDs+ and its inclusion as an equal part of universal health coverage. (National Health Insurance in South Africa).

About the SA NCDs Alliance

The SA NCDs Alliance, established in 7 years ago, is a civil society partnership between three trusted NCDs advocacy organisations: CANSA, Diabetes SA and the Heart & Stroke Foundation SA.

Its mission is for the people of South Africa have equitable access to quality NCDs+ prevention and management within universal health coverage/ NHI.

For this important COVID-19 and NCDs+ advocacy project nearly 90 civil society organisations are collaborating:

Cancer Alliance South Africa
Dementia South Africa
Epilepsy South Africa
Global Mental Health Peer Network
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) SA
National Kidney Foundation SA
Palliative Treatment for Children SA (PatchSA)
South African Disability Alliance
South African Federation for Mental Health

The SA NCDs Alliance’s goal in this programme it to ensure that the policy window of opportunity opened by the COVID-19 pandemic is used to make NCDs a priority in government policy through collaboration with NCDs civil society to put it on a par with HIV & TB. www.sancda.org.za

Diabetes helpline +27-81-578-6636

Launch of CANSA Tele Counselling

24 June 2020 – This Nelson Mandela Day CANSA gives back to cancer patients, those affected by cancer and caregivers by launching its CANSA Tele Counselling service. This is confidential, professional, cancer-related telephonic counselling to cancer patients, caregivers and their families and parents or guardians of children living with cancer. Counselling is available in seven languages (English, Afrikaans, isiXhosa, isiZulu, siSwati, Sesotho and Setswana) and is free of charge. #CANSATeleCounselling #ConnectWithHope #MandelaDay

Gerda Strauss, CANSA’s Head of Service Delivery says, “We challenge all to take action and to inspire change this Mandela Day, by donating and sponsoring 67 minutes of counselling. Help us with the costs and expenses to run the service and provide continued in-service training and debriefing sessions to counsellors. We don’t want to add the burden of payment for these sessions to those who are already battling, so we need your help. Even Madiba, when he was first diagnosed with prostate cancer in 2001, reached out to CANSA and benefitted from our support and we’d like to be there for more patients and loved ones and connect with hope. Our launch includes a webinar in mid-August to health professionals to celebrate this Tele Counselling, in addition to our face-to-face counselling services since 1931.”

CANSA has been developing an in-house telephonic counselling service for some time as cancer takes a psychological, emotional and physical toll on cancer patients. This service has just been accelerated due to the limited specialised support available to cancer patients, their caregivers and families during the lockdown period, when face-to-face contact and limited virtual support is not always possible as a result of the COVID-19 pandemic.

Strauss adds, “Patients are feeling frustrated and despondent as they struggle to access vital support services. A cancer patient’s low immunity and high infection risk for COVID-19, results in anxiety and social distancing and hygiene measures add to a feeling of isolation even as lockdown levels are eased. So, this is the perfect time to launch the telephonic counselling. The establishment of this service will not only serve patients during this difficult period, but will become a permanent care and support offering, enabling patients who live far from our Care Centres to also access support and in a language of choice. It’s available during normal business hours.”

“We’re thrilled and thankful that we can partner with Novartis and Roche who made it possible for CANSA to establish and set up this specialised support system in place for cancer patients and loved ones,” concluded Strauss.

CANSA Tele Counselling can be accessed via the CANSA Help Desk on 0800 22 66 22 toll-free to make an appointment with a CANSA counsellor. Or send an email to [email protected].

(For more information, please contact Lucy Balona, Head: Marketing and Communication at CANSA at email [email protected]. Call 011 616 7662 or mobile 082 459 5230.)

About CANSA

CANSA offers a unique integrated service to the public and to all people affected by cancer. CANSA is a leading role-player in cancer research and the scientific findings and knowledge gained from our research are used to realign our health programmes, as well as strengthen our watchdog role to the greater benefit of the public. Our health programmes comprise health and education campaigns; CANSA Care Centres that offer a wide range of care and support services to those affected by cancer; stoma and other clinical support; medical equipment hire, as well as a toll-free line to offer information and support. We also supply patient care and support in the form of 11 CANSA Care Homes in the main metropolitan areas for out-of-town cancer patients and CANSA-TLC lodging for parents and guardians of children undergoing cancer treatment.

Queries CANSA

Visit www.cansa.org.za or contact the nearest CANSA Care Centre, call CANSA toll-free 0800 22 66 22 or email: [email protected]. In addition to online resources and Facebook support groups, CANSA offers multi-lingual support on WhatsApp: 072 197 9305 for English and Afrikaans and 071 867 3530 for isiXhosa, isiZulu, siSwati, Sesotho and Setswana. Follow CANSA on Facebook:
CANSA The Cancer Association of South Africa, Twitter: @CANSA (http://www.twitter.com/CANSA), Instagram @cancerassociationofsouthafrica, LinkedIn and Pinterest.

Young people set to transform global mental health: action needed for young people

Youth Leaders for the Lancet Commission on Global Mental Health will present key mental health recommendations for young people this week at the World Health Assembly.  The young people initiated and developed the policy brief to global policymakers. 

Chantelle Booysen

I am excited to use this platform as part of the #mymindourhumanity campaign which promotes global mental health for young people. We want to by:

  1. Elevate the voices of youth in health in particular mental health;
  2. Address a high-level plenary that includes policymakers and public officials to get a response to the policy brief;
  3. Collaborate with NCD Child and NCD Alliance so that mental health continues as an active priority.

We call on global mental health advocates to amplify young voices so that we reach the heads of state.
The policy brief is to be launched at the  NCD Child and NCD Alliance side event at the WHA72 on 23 May 2019.

If you are attending the WHA72 in Geneva and are interested in attending contact [email protected]

To get more information on the work of the young leaders click here .

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In six weeks we’ll know if Qedani Mahlangu will be prosecuted

Content is originally written forBhekisisa
After being awarded damages, distraught families want more: the former Gauteng Health MEC must face criminal charges.

The R135‑million in constitutional damages awarded to claimants in the Life Esidimeni tragedy this week — the largest award of its kind in South Africa’s history — could increase to 10 times that amount.

Former deputy chief justice Dikgang Moseneke’s arbitration ruling is also likely to influence future rulings of this kind.

Constitutional damages of R1-million each were awarded to 135 claimants, in addition to funeral-related expenses and R180 000 for shock and psychological trauma.

Moseneke ruled that it was “appropriate relief and compensation for the government’s unjustifiable and reckless breaches” of at least six sections of the Constitution and “multiple contraventions” of the National Health Act and the Mental Health Care Act.

Between October 2015 and June 2016, 1 711 psychiatric patients in Gauteng were transferred from private Life Esidimeni health facilities, for which the state had paid, to largely ill-equipped community organisations with little to no experience in caring for mental health patients.

The move came after the provincial health department ended a 30-year contract with the Life Healthcare private hospital group.

A father speaks out about the terrible conditions his son died in after being removed from state-funded hospital care at Life Esidimeni.

The department ignored repeated warnings from families and civil society organisations that transferring patients to unqualified organisations, which Moseneke referred to as “death and torture traps” in his arbitration ruling, could lead to the death of psychiatric patients.

As a result, 144 patients died, and 1 418 were exposed to “trauma and morbidity” but survived, according to the arbitrator’s report.

Moseneke ruled the sites were “hand-picked” by senior Gauteng health department officials, such as then health MEC Qedani Mahlangu and her head of department, Dr Tiego “Barney” Selebano, with an “irrational and arrogant use of public power”.

All claimants received the same award, regardless of whether their loved ones died or survived.

But the number of claimants is now likely to increase from the original 135, after Moseneke invited those who hadn’t been part of the arbitration — at least 1 350 of those who survived didn’t join — to come forward.

“Not all have joined the process. When they find their voice or way, I trust that the government would choose to meet their claim in terms identical to the award than to set up new litigation of another arbitration process,” Moseneke said in his arbitration award.

Within a day after the ruling, 10 more families and patients had already contacted the arbitrator’s office. “I’ve taken down their details, and sent it through to the mental health director in the Gauteng health department to determine if they qualify for the award,” spokesperson Obakeng van Dyk said.


Historic ruling: Retired judge Dikgang Moseneke said that he hoped the families of affected mental health users, who were not part of the Life Esidimeni arbitration, would come forward and claim the compensation they were due. (Delwyn Verasamy)

In order to qualify, patients should have suffered trauma directly as a result of the transfers and should be able to prove that they or their loved ones were transferred between October 2015 and June 2016.

There have been two major constitutional damages awards in the past, but these were significantly smaller than the Life Esidimeni award and were made in court cases and not by arbitration agreement.

In 2006, the Eastern Cape high court ordered the welfare MEC in the province to pay “Mrs Kate” damages for failing to process and pay her disability grant within a reasonable period”, after the state had taken 40 months to do so.

And in 2005, the department of agriculture and land affairs had to pay constitutional damages to a private company in Benoni, Modderklip Boerdery, after the Constitutional Court ruled that the state had failed to protect Modderklip against the unlawful occupation of its property.

Although the size of the award wasn’t specified, the ruling stipulated that it could not exceed the property’s value, which was less than R1.8‑million.

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A father speaks out about the terrible conditions his son died in after being removed from state-funded hospital care at Life Esidimeni.

Because the Life Esidimeni award is an arbitration award, which is a private agreement between two parties, it can’t set a legal precedent for courts.

But, it will undoubtedly “set a standard”, says advocate Adila Hassim, “because constitutional damages this high have never been awarded before”. Hassim was part of social justice organisation Section27’s legal team that represented 63 of the Life Esidimeni claimants.

Sasha Stevenson, who was also part of the team, agrees: “Because this is such an important and public matter that was decided by the former deputy chief justice, it will have persuasive value to those who are deciding other cases.”

The Life Esidimeni tragedy is also likely to end up in the criminal court. Two parallel criminal investigations — one by the South African Police Service and another by the Special Investigating Unit — have been opened.

Pindi Louw from the National Prosecuting Authority’s Gauteng office confirmed that the office had received 140 inquest dockets from the police for a decision on whether to prosecute.

Mahlangu, Selebano and the director of mental health services at the time of the Life Esidimeni patient transfers, Makgoba Manamela, could all potentially be implicated in charges including murder, attempted murder, culpable homicide, perjury and corruption.

“Deputy director of public prosecutions George Baloyi has assigned a team of prosecutors to work on those documents. They will take between four to six weeks … and will then announce their decision,” Louw said.

The families of Life Esidimeni patients walked out en masse after the testimony of former Qedani Mahlangu at the arbitration.

Moseneke labelled Mahlangu’s and Selebano’s testimonies during the arbitration hearings as “fabricated and patently false”. “All we can hope for is that, one day, the true reason for the conception and implementation of the Marathon Mental Health Project [of which the Life Esidimeni patient transfers formed part] will see the light of day,” he said.

The spokesperson for the Life Esidimeni families, Christine Nxumalo, said, although they accepted the compensation, they still wanted the department to be held accountable. “We see Qedani Mahlangu and her officials as proper traitors, because they didn’t provide us with the answers we asked for in the hearings,” she said.

“You don’t just forgive a traitor. We want to see that justice is done.”

Mahlangu Told Makhura About The Deadly NGOs, Records Show – Bhekisisa

Written for

The tragedy has revealed the Gauteng government’s inner workers, leading one doctor to say, 
‘If this is how things are 
run … God help us all’

It has been called a tragedy. A calamity. A scandal. But this was no accident, no rash decision made under pressure, no force of nature.

It was sheer arrogance, political manoeuvring, incompetence, indifference and possibly greed and corruption that sent nearly 150 of the most vulnerable patients to their deaths.

Some analysts have branded the 
#Life Esidimeni tragedy mass murder.

The department was repeatedly warned against doing so by professionals and organisations with on-the-ground experience. But they were brushed aside.

Civil society and health organisations who spoke out were treated as the enemy.

Opposition politicians were vilified for doing their job. The Democratic Alliance’s Jack Bloom, a long-standing thorn in the side of the ANC in Gauteng, was called a racist and chauvinist when he repeatedly raised questions about the project in the legislature.

“Now we are told nobody — not the MEC, not the officials, not the premier — knew anything about it,” says Mzukisi Grootboom, chairperson of the South African Medical Association (Sama). “For goodness sake, if that is how things are run … God help us all.”

At least one woman was allegedly raped.

And some — between 45 and 62, depending on whose list you check — simply went missing. No one knows whether they’re dead or alive.

Finally, there are people like Guy Daniel Kanza. His family has been searching for him since he was removed from a Life Esidimeni facility in Waverley in northern Johannesburg in 2016.

His name appears on no Gauteng health department list. He is just gone.

A father speaks out about the terrible conditions his son died in after being removed from state-funded hospital care at Life Esidimeni.

 

Sama, a fierce critic of the department of health and often the politicians in charge, has long warned that there are problems across the public health system.

“When we raise concerns, it is not because there is a political decision to question government,” Grootboom says. “It’s is because we are dealing with patients and have an obligation to represent them. We work in the poor communities.”

However, Sama’s remarks are rarely embraced by the government. “We should be treated as allies, as government’s eyes and ears on the ground. Yet, we’re treated as troublemakers,” Grootboom argues.

Had it not been for the work of civil rights groups like Section27 and professional bodies like the South African Depression and Anxiety Group (Sadag), more lives would undoubtedly have been lost. It could have taken years for the disaster to come to light.

“The failures were quite simply due to government’s persistent failure to heed the advice of experts, families and everyone else who could see that this was going to end in disaster,” Charlene Sunkel, who represents both the South African Federation for Mental Health and South African Mental Health Advocacy Movement, told Bhekisisa.

“Civil society often has the experience and knowledge that government officials lack and the government would do well to pay more attention to how this expertise could positively influence and inform their processes.”

Grootboom says the disastrous failures that led to patient deaths are the culmination not only of failing health systems but because there is also no way to address problems once they are raised. “We often see that politicians announce there will be an intervention. Then it is as if the job is done.”

The families of Life Esidimeni patients walked out en masse after the testimony of former Qedani Mahlangu at the arbitration.

The question left unanswered during the past two months’ arbitration hearings in Johannesburg is why the terrible trio of Qedani Mahlangu, the MEC in charge during the Life Esidimeni project, the head of her department, Barney Selebano, and the director of mental health, Makgoba Manamela, were so adamant to push through the transferrals of patients. Was blind resistance to their critics’ advice the only factor, or was there corruption, greed and political gain involved?

Gauteng Premier David Makhura connected financial irregularities to the payment of NGOs and vowed that the government would continue to investigate the reasons for Mahlangu’s decision. The Special Investigating Unit is investigating possible corruption related to project, he said.

But did Makhura know the details of Mahlangu’s plan and, if so, why did he not prevent the tragedy from happening?

Not one of the health department’s senior leaders took personal responsibility and instead claimed that no one in government works in a silo, and the department, therefore, needs to take collective responsibility. Mahlangu alleged her senior staff never informed her of the details of the project, while Selebano and Manamela claimed the exact opposite — that their boss bullied them into it.

“At the start of the arbitration hearings, we had very high expectations to help us answer our questions of why, why why,” says Sadag’s Cassey Chambers. “But we were very disappointed and frustrated by Manamela, Selebano and Qedani’s testimonies. Both at their stall tactics, blaming everyone else — even NGOs like us who were trying to help and doing the work that they should have been doing.”

A teary and clearly frustrated Health Minister Aaron Motsoaledi, who referred to Mahlangu’s behaviour as “criminal conduct”, took the stand on Wednesday. “I have been asked why I don’t fire MECs,” he said. “But I cannot do that. The premier hires and fires MECs.”

Mahlangu’s tone-deaf appearance at the hearings certainly made it easy to cast her as the pantomime villain. She has done nothing to endear herself to either the patients’ families or the public, who have taken to social media to vent their anger against the former MEC.

One by one, officials drove the nails into her political coffin and distanced themselves: from the expedient (officials in the department trying to shift the blame) to the factual (a credible Barbary Creecy dismantling Mahlangu’s defence as MEC for finance) and the political (Makhura and an emotional Motsoaledi).

“There was a clear intention that officials wanted to hide this from the minister and the premier. But for what reason?” Motsoaledi asked.

“When I read the ombudsman report about how people were bundled in vans and tied with sheets, and how they are chosen … like cattle at an auction…” Motsoaledi said, unable to finish his sentence.

“For human rights to be breached in such a manner that is reminiscent of our apartheid era in our democracy is very painful that’s why I feel personally betrayed.”

Watch: Motsoaledi breaks down on the stand

For now, Mahlangu’s political career is over — at least as far as public office is concerned. While South Africa has the dubious track record of rewarding scandal-ridden politicians, anger over her transcends the ANC factions, and she will have to take the fall for government’s worst human rights failure since the end of apartheid.

Makhura has probably done enough to survive the political fall-out. At the hearings, he was the opposite of Mahlangu — he accepted personal accountability and came across as humble and sincere. Crucially, the family members of patients warmed to him.

But the premier’s insistence that he was misled by his former MEC is disputed by Bloom. Makhura repeatedly testified that he did not know patients were being sent to NGOs. Bloom produced the Hansard record of the Gauteng legislature sitting on 15 March 2016, where the premier was greeted by the speaker and answered questions. Later in the same session, the written record reflects, Bloom raised specific concerns about the NGOs. “I speak to mental health NGOs, and they tell me that there are no the facilities [sic] that, it simply has not been done.”

Mahlangu explicitly mentioned NGOs several times in the sitting. “The NGOs have hired the staff,” she said, and then, astonishingly, admitted some had not been licensed. “They have also been given licences.”

What set these proceedings apart from many others into government failings is the warmth, compassion and incisiveness of retired chief justice Dikgang Moseneke, who presided over the hearings. “We finally felt like someone was listening to us. We need more people like the justice in our country’s leadership,” Chambers says.

The testimonies ended on Wednesday. The final legal arguments in the Life Esidimeni arbitration are expected to be delivered on February 8 and 9. An arbitrator will then announce a compensation package for the victims’ families.