Back from the Brink: Young TB Survivor Turns Advocate in South Africa

This article originally appeared on the Women & Girls Hub of News Deeply, and you can find the original here. For important news about issues that affect women and girls in the developing world, you can sign up to the Women & Girls Hub email list. By Sophie Cousins

Phumeza Tisile was 19 when she was diagnosed with a deadly, drug-resistant form of TB. Her experience of treatment and eventual survival turned her into an activist fighting for better access to treatment for others who face the same fate.

It was 2010 and South Africa was hosting the FIFA World Cup. Phumeza Tisile, who was 19 years old at the time and in her first year of university in Cape Town, was out celebrating with friends.

She had noticed that she had been getting thinner, but didn’t think anything of it until that day, when she tried to blow the vuvuzela – a blow horn that can be heard at most soccer games in South Africa. It was difficult. She couldn’t breathe.

Tisile went to her doctor and was diagnosed with “regular” tuberculosis (TB) and put on a six-month course of treatment.

But two months on, she seemed to be getting sicker. She eventually went back to the doctor, and further tests found she had a multi-drug-resistant form of TB, often referred to as MDR-TB.

TB, a contagious airborne disease, is the leading cause of death in South Africa, which has one of the highest incidences of the disease in the world. According to the latest figures from the World Health Organization (WHO), an estimated 450,000 new cases arise every year across the country. While more men than women are diagnosed with, and subsequently die of, TB, the disease can have particularly dire consequences for women of reproductive age. TB is one of the top five killers of women aged 20 to 59. If a pregnant woman contracts the disease, the risk of her pregnancy ending in perinatal death is six times higher, while the risk of premature birth and low birth weight increases twofold.

There is also a rising number of people, like Tisile, being diagnosed with drug-resistant strains of the illness. Most of these patients are resistant to at least two first-line drugs. Some people, known as extensively drug-resistant patients, are resistant to at least four of the core anti-TB medicines.

Dealing with patients who develop drug resistance can be very costly, as the specialist medicines needed are sometimes up to 200 times more expensive than normal TB treatments. The drugs are stronger and can have devastating side effects, including kidney impairment and depression.

Tisile was put on a drug regime for two years. “They put me on 20 tablets [a day],” she says. “I also had to have an injection every day for six months.”

But it wasn’t long before the medicines took a toll on Tisile, who ended up hospitalized for five months when she stopped being able to walk properly.

Furthermore, one day she woke up and noticed there was something else seriously wrong. She went to the bathroom, used the toilet and noticed she couldn’t hear it flushing. Then she turned on the tap to wash her hands, but again, there was no sound.

“I thought, ‘OK, maybe there’s something blocking my ears.’ I cleaned my ears but there was still no sound. People were moving their lips, but I couldn’t hear what they were saying,” she says.

What Tisile didn’t know, and hadn’t been told, was that hearing loss is a common side effect of the daily injections she was taking as part of her MDR-TB treatment. “When the doctor told me I was deaf, he also told me I was resistant to eight MDR-TB drugs,” she says. “I had been taking the wrong medication.”

Tisile was finally diagnosed with XDR-TB – the most severe form of TB, with little hope of survival.

The medicines made her feel even sicker. She was constantly in and out of hospital. An operation to remove TB from her lung resulted in a broken rib and a collapsed lung. By mid-2011, her XDR-TB treatment was no longer working.

Then medical staff from Doctors Without Borders (MSF) stumbled across her at a government clinic, and started her on an individually tailored XDR-TB regimen.

After two more years of treatment, she was told she had a 20 percent chance of survival.

“MSF told me that if I wanted to stop the medication all together, then I should and that I should consult a priest to prepare myself, because they didn’t see a way out of this one,” she says.

Against the odds, Tisile’s health finally started improving and, in August 2013, she was declared cured of XDR-TB.

After managing to raise $80,000 for a cochlear implant, Tisile regained her hearing in February 2015, almost five years after she lost it, and is excited to be restarting university next year to pursue gender studies.

Now she’s a fierce advocate for better access to testing and treatment for drug-resistant TB. She wants to see better, more affordable treatments with fewer side effects and a higher cure rate. And she is calling for the international community to fully fund the fight against the disease. “I could have died, and they don’t really know why I didn’t,” she says.

One of the drugs credited with helping cure Tisile is a high-strength antibiotic called linezolid. While the drug has shown promising results, it’s not widely available in South Africa due to its cost. It’s currently under patent and is not registered as a drug-resistant treatment in the country, making it difficult to access in public facilities.

Two new drugs for treating the most resistant forms of TB, bedaquiline and delamanid, have been developed since 2012 – the first new TB treatments in almost a century. But access remains severely limited due, again, to high cost and the fact that the drugs are registered in only a few countries. While the companies that produce them have set up limited donation programs, the cap on the number of treatment courses given is far below what’s required, and many high-burden countries are excluded from the deal.

“The world is just letting people with TB down,” Tisile says. “We know TB affects those who don’t have money. We need to raise awareness.”

Members of the World Health Assembly have committed to WHO’s End TB Strategy, which hopes to end the TB epidemic by 2035, reducing deaths by 95 percent and cutting new cases by 90 percent, with the ultimate goal of TB elimination as a public health problem by 2050.

But with the TB burden larger than previously thought, growing resistance and a massive gap in funding, experts are skeptical whether this goal is achievable.

Mick Frick, TB/HIV senior project officer at the Treatment Action Group, an independent think tank in South Africa, expressed concern at the decline in funding in the fight against TB, which he blames on a lack of investment by pharmaceutical companies and “anemic political will.”

“Meeting the innovation needs of the groups most affected by TB will be essential for ending the TB epidemic [but] these groups are being left behind,” he says.

South African Activists Call for Legal Recognition of Muslim Marriages

This article originally appeared on the Women & Girls Hub of News Deeply, and you can find the original here. For important news about issues that affect women and girls in the developing world, you can sign up to the Women & Girls Hub email list. By Jen Thorpe

South African law requires marriages be conducted by a registered official. But many of the country’s Muslims get married in exclusively religious ceremonies, leaving married Muslim women with little legal protection, say activists.

Anyone wanting to get married in South Africa has three legal options, all of which aim to protect the rights of the people saying “I do.” Heterosexual couples can wed under the Marriage Act; for same-sex couples there is the Civil Union Act; and marriages conducted under customary law are protected by the Recognition of Customary Marriages Act.

But a significant number of marriages are conducted in religious ceremonies. South African law requires that any religious marriage be conducted by a registered marriage officer in order for the union to be solemnized under one of the country’s marriage laws. A purely religious marriage, one performed by an unregistered religious figure, has no legal status in South Africa.

That means that many of the estimated 750,000 Muslims in South Africa are in marriages that are not recognized by law. Women & Girls Hub spoke with Hoodah Abrahams-Fayker, attorney at the Women’s Legal Centre (WLC) in Cape Town, about what this absence of legal protection means for Muslim women and girls in South Africa and why the WLC is fighting for Muslim marriages to be legally recognized.

Women & Girls Hub: Why is there a need for specific recognition of Muslim marriages in law?

Hoodah Abrahams-Fayker: Many Muslim couples get married under religious ceremonies without the subsequent registration in terms of the Marriages Act. The legal literacy of most South Africans is low, and thus many couples are not aware of the benefits of legal protection, especially in terms of divorce.

Registering a Muslim marriage can be difficult. This is because, historically, only a few members of the Islamic clergy chose to become registered marriage officers. The government discriminated against Muslim people during apartheid and as a result, the Islamic clergy took a political and principled stand not to register as marriage officers as prescribed by the Marriages Act. They felt that this registration hindered their ability to practice their religion freely.

One of the key reasons we think legislation is required is to provide regulation of the divorce process. This will positively affect current challenges around inheritance, maintenance and the property rights of women. The WLC has seen thousands of cases where Muslim women do not have access to legal protection when they wish to divorce their husbands or when their husbands state that they wish to be divorced from them. To dissolve a marriage under Islamic law, the couple must approach the Islamic clergy. The clergy is comprised mainly of men and can be biased in favor of the husband. And there is no standardized regulation of how Islamic divorce proceedings should be heard. This has significant implications in terms of the allocation of property and the livelihoods of the children in Islamic marriages. Hence, many women do not get a fair divorce hearing.

The Recognition of Customary Marriages Act makes particular provisions for marriages conducted under customary law, applying to “those customs and usages traditionally observed among the indigenous African people of South Africa.” This recognition excludes those who are not “indigenous African people,” including those married religiously in Muslim, Hindu and Jewish weddings.

Women & Girls Hub: In terms of girls and young women, how would a law around Muslim marriages provide better protection?

Abrahams-Fayker: The Marriage Act requires that boys under the age of 18 and girls under the age of 15 cannot get married without special permission from their parents, a judge and the Minister of Home Affairs, and that all persons under the age of 21 must get their parents’ permission before marrying. These laws aim to protect young adults and to ensure that marriages take place between consenting adults.

But because Muslim marriages are not legally recognized, the Islamic clergy will often not report cases where marriages are under the legal age. South African statistics show that many more underage brides get married each year in South Africa than underage grooms, thus this particularly affects young women.

Because these marriages are not reported, there won’t be any government statistics on them. This means that our government statistics on underage and early marriage will not be accurate, and may be an underrepresentation of the extent of the issue.

Women & Girls Hub: Has the Women’s Legal Centre faced any opposition in its efforts to get better legal protection for Muslim women through a new law?

Abrahams-Fayker: There seems to be the misguided sense that the Muslim community does not support it, but in the WLC’s workshops with the Muslim community we find that when participants are informed about the benefits of legal protection, they are in support of it. Some small, very vociferous, groups have opposed the WLC’s application, but that does not equate to its rejection by the majority of Muslim people in South Africa.

The main concern of those opposing the law is that creating law specifically around Muslim marriages amounts to religious interference and singles out Islam. However, from the perspective of the WLC, the failure to provide protection in these marriages discriminates against Muslim women, and is therefore unconstitutional.

It has been more than a decade since the first version of the Muslim Marriages bill was introduced, and so the WLC has taken the government to court over these delays. The case will be heard in the High Court in Cape Town in March 2017.

Women & Girls Hub: In the interim, how is the WLC working to support women in Muslim marriages?

Abrahams-Fayker: The reality is that many Muslim women are not initially aware of how their rights in the South African legal context differ from those under Shariah law. In addition, few have the legal or financial resources to take up the matter of divorce outside of the Islamic clergy. The WLC continues to work in communities providing workshops on human rights, as well as providing free legal advice at our offices for any women who need it.

A positive recent development is that a number of Muslim marriage officers have been registered. However, this does not necessarily mean that more Muslim marriages are being solemnized both civilly and Islamically. There is still a need to raise public awareness and to make sure that marriage officers fulfill their legal duty and encourage couples to register their marriage.

In addition, although there is no law protecting Muslim women in divorce, there have been cases where women have taken their request for divorce to the courts and received favorable judgments. But a comprehensive legal remedy would be far more favorable.

This conversation was edited for length and clarity.

‘Hate Crime’ Call for Corrective Rape Receives Boost in South Africa

This article originally appeared on the Women & Girls Hub of News Deeply, and you can find the original here. For important news about issues that affect women and girls in the developing world, you can sign up to the Women & Girls Hub email list. By Jen Thorpe

Six years after the South African government promised to address violence toward the LGBTIQ community, a hate crimes bill was opened for public comment this month – but the struggle to ensure lesbians enjoy a life free from violence is not over, say activists.

One night earlier this month, a lesbian couple were sleeping at home after having returned from a music festival in Nelspruit, Mpumalanga, in eastern South Africa. They were woken by loud noises outside. Shortly after, a group of men kicked down their door, entered the house and demanded sex.

“When I refused, one pushed me onto the bed, undressed and started to rape me,” one of the women later told a local newspaper. “Our cries fell on deaf ears as nobody came to our rescue.”

Both women were raped while the gang admonished them for being gay.

“They hurled insults at us and told us that they wanted to teach us … how it feels to be a woman,” said one of the women.

Corrective rape, the belief that heterosexual rape can “cure” or “correct” a woman’s homosexuality, is known to be common in South Africa, although the exact number of incidents is impossible to calculate. There is no separate category for corrective rape in the law, which means incidents are not officially recorded. Despite promises of a law to deal specifically with corrective rape in 2010, and years of pressure from lesbian, gay, bisexual, transgender, intersex and queer (LGBTIQ) groups in South Africa, activists say concrete government action has been slow to materialize.

Many are now calling for corrective rape to be legally recognized as a hate crime, along with other hate-motivated acts, which could force government institutions and the police to provide specific responses, such as gender sensitivity training for staff dealing with these crimes and enhanced sentencing for perpetrators. A law could also push authorities to come up with a standardized response to incident reports with an emphasis on better data collection and monitoring of hate crimes to measure the extent of the problem, and the subsequent allocation of appropriate resources to address it.

“Even though the term [corrective rape] is often used, no such legal category exists,” says Sanja Bornman, managing attorney of the Lawyers for Human Rights‘ Gender Equality Program and chairperson of the Hate Crimes Working Group.

“Activists are calling for a law that specifically recognizes the motive of hate, which makes these crimes different for several reasons, including the implicit threat to other lesbians within these communities,” says Bornman.

While a draft hate crimes bill was opened to public comment on October 19 and obliges police and judicial officials to take sexual orientation and gender identity into account when considering motive, Bornman says the process of having it officially signed into law will be lengthy.

In the meantime, the government is taking small steps to address the issue of corrective rape, but activists say these small successes are often marred by a lack of capacity. In 2011, a Change.org petition demanding the South African government take action to stop corrective rape, received over 170,000 signatures. The result was the formation of the National Task Team on LGBTIQ issues (NTT), a partnership between the government and civil society groups aimed at addressing hate crimes, among other issues.

“The NTT holds significant promise but is hampered by a lack of capacity and coordination, especially at the provincial level,” says Bornman.

The Department of Justice also established a Rapid Response Team to respond to hate crimes and to address the backlog of reported incidents of hate crimes being committed against LGBTIQ persons. But this team, too, is ineffective, say critics.

Historically, South Africa has taken a progressive approach to LGBTIQ issues in the law – it was one of the first countries in the world to protect the right of sexual orientation in its constitution, for example.

But activists argue that laws aren’t much of a deterrent in the context of South Africa’s patriarchal society. In a recent survey commissioned by the Other Foundation, an African Trust aiming at advancing freedom and equality in Africa, an estimated 450,000 South Africans reported they had physically harmed women who “dress and behave like men in public” in the previous 12 months, and 700,000 had verbally abused gender nonconforming people.

Violence against lesbians in South Africa is taking place against a backdrop of sexual violence and machismo culture. More than 50,000 sexual offenses have been reported to the police every year since the Sexual Offenses Act was passed in 2007, with a decline in reported sexual offenses in the past five years. The Rape Crisis Cape Town Trust attributed this decrease to reduced reporting rather than reduced incidence of rape, thus those figures might only reflect a small portion of the real number of offenses.

Cases of corrective rape are rarely reported and even more rarely result in a conviction. But when perpetrators are punished, those cases often illustrate the disconnect between the country’s progressive law and patriarchal reality. In 2008, national female football star Eudy Simelane was murdered just outside Kwa Thema in Johannesburg. Simelane, who had been a vocal advocate of LGBTIQ rights, had been gang raped, beaten and stabbed 25 times in the legs, face and chest. Simelane’s trial was the first related to the murder of a lesbian women to end in a conviction. But in his sentencing, the judge ruled that her sexual orientation did not play a role in her rape and murder.

For the new law on hate crimes to be successful in preventing crimes like corrective rape, Bornman believes much more needs to be done to educate the public “about what it means to be LGBTIQ, and to ensure that those who do violate rights must be held accountable more consistently.”

The all-female patrol stopping South Africa's rhino poachers

Across Africa, rhino poaching is up. However, one brave group of conservationists is winning awards and recognition for their success in protecting the endangered, iconic animals. Patrolling the Balule Nature Reserve in South Africa, the Black Mambas--an all-women group--are not only eliminating poaching across the reserve but are also building trust and making connections between the local community and officials trying to protect the wildlife. Read more about their amazing efforts at the link. theguardian.com - “The Black Mambas are winning the war on poaching,” insists Siphiwe Sithole. “We have absolutely zero tolerance for rhino poaching and the illegal wildlife trade. The poachers will fall – but it will not be with guns and bullets.”

Sithole and Felicia Mogakane are members of South Africa’s Black Mambas, the world’s first all-female anti-poaching unit that has captured the public’s imagination. But it’s their success in reducing rhino deaths and breaking down the barriers between poor communities and elite wildlife reserves that is their most powerful weapon in the war on poaching, and has seen them pick up their second international conservation award this week.

The two women have travelled to London to receive the inaugural Innovation in Conservation award from UK charity Helping Rhinos. The award recognises projects “with an inspiring and innovative approach” that have shown positive results in protecting rhino populations.

Since forming in 2013, the Black Mambas have seen a 76% reduction in snaring and poaching incidents within their area of operation in Balule nature reserve in the country’s north-east. As well as the famous big five of rhino, lion, elephant, buffalo and leopard, the 40,000-hectare private reserve is home to zebra, antelope, wildebeest, cheetah, giraffe, hippos, crocodiles and hundreds of species of trees and birds.

Read more here.