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.

The Blind Grandmother Giving HIV-Positive Kenyans Support and Dignity

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 Kalunde Kilonzo

Already blind, Catherine Mwayonga was written off by doctors as having six months to live after being diagnosed with HIV. Fifteen years later, she now helps other disabled HIV-positive Kenyans to demand better treatment and adapt to life with the disease.

NAIROBI, Kenya – When a visitor walks up the stony path to Catherine Mwayonga’s home in Thika, 30 minutes from the Kenyan capital, she hears their footsteps and raises her voice – bold and husky – to usher them in. She’s sitting on the sofa, knitting a sweater for a newborn baby and counting the stitches with her fingers. “Karibu sana (welcome),” she says.

Mwayonga, 62, the mother of six grown boys and two adopted daughters, is blind. She lost her eyesight when she was 7, after a cow kicked her in the head and threw her against a tree. She is also HIV-positive, which she only discovered when she overheard a doctor talking about her to his colleagues: “The patient on bed 12 is HIV-positive.”

Mwayonga remembers hearing him announce her status as she lay still on the cold bed, pretending to be asleep. “He said it in English, assuming that I did not understand,” she says. “It shocked me.”

That moment led to years of fear, denial and confusion as Mwayonga’s disability – one that had long ago become a natural part of her full life – suddenly became an impediment to coping with her illness. Everything from getting information from doctors to taking medication was a struggle. But 15 years on, Mwayonga has overcome those challenges and now devotes her time to advocating for HIV-positive people with disabilities, calling for more respect and improved resources.

The first case of HIV was discovered in Kenya in 1984, and the country’s infection rate currently stands at 5.6 percent. Figures from the Kenya National HIV and Aids Estimates shows it has the fourth highest HIV prevalence in the world, with about 1.6 million people infected with the virus.

For two years before her diagnosis, Mwayonga had pleaded with doctors to test her for HIV/AIDS. In 1996, after a decade of illness, her husband died from what Mwayonga later discovered were AIDS-related complications. She knew the risk of her having contracted HIV from him was high. “In 1999, I would have malaria today, typhoid tomorrow, but nothing specific,” she says. “I would ask why they were not testing me for HIV/AIDS. They would say the disease would not get [disabled] people like me. But I asked them: Aren’t I a human being?”

By the end of 2000, Mwayonga was ill more often than not. She had been teaching at the Thika Primary School for the Blind for 40 years, but now could only make it to work one month out of every three. “When I started vomiting, losing weight and having diarrhea, the doctors said my body was overproducing bile and I was put on ulcer medication.”

In March 2001, Mwayonga started having breathing difficulties and was rushed to hospital, where doctors told her she needed a blood transfusion. When the lab technician came to her bed to draw her blood, “I told him, I hope you will test me for HIV with that blood sample,” she says.

“Who told you about HIV/AIDS?” he asked her. That was the last she heard about her illness until the doctor announced her status as she pretended to sleep.

The poor handling of her situation continued, she says, when a doctor finally broke the news to her personally. He told her she had only six months to live, that she should sell her property and distribute her money to her family.

Devastated, “I told them it was very unprofessional how they were handling my case and how they had given my life an end,” she says. Some other doctors assured her that with the right diet and treatment, she could live with the disease for many more years. But she was never given or offered counseling to help her deal with her new, life-changing health status, nor given any tips on how to disclose the news to her family.

Instead, when she was discharged from hospital, she was handed an array of drugs to take daily. Because the antiretrovirals (ARVs) are not marked in Braille, she would often get her medication mixed up. “Every day, I felt tired and sleepy,” she says. “I was overdosing on the drugs. I had muscle wasting.”

This episode of her life, which she describes as a near-death experience, prompted her to share her status publicly in 2010. “Having HIV when you are disabled is a double dilemma,” she says. “Your privacy is infringed, your status is made public, and accessing and using ARVs is a hurdle. It is a major jungle for disabled HIV patients.”

There are places in Kenya, such as the Disabilities Programme at Liverpool VCT, an NGO where people with disabilities can access HIV testing and counseling services and get help from service providers specifically trained to work with the disabled. But there are very few facilities like this catering to disabled HIV patients.

So when Mwayonga isn’t teaching at the school, she devotes her time to filling that healthcare gap. As the head of the Thika branch of the Kenya Network of Positive Teachers (KENEPOTE), an organization of teachers living with HIV/AIDS, she helps organize regular outreach events to dispel myths on HIV, fight stigma and call for better inclusion of people living with the virus. She counsels elderly people on how best to break the news of their HIV-positive status to their children and grandchildren. She visits high schools to give talks on HIV prevention and treatment. And she opens up her home to anyone looking for help or advice on reproductive health.

But even simple advice like “use a condom” comes with complications. “When you tell a blind couple or someone visually impaired to use condoms, it is like an insult,” she says. “Because the packaging and instructions are only meant for those with sight. They wouldn’t know if the condom has expired, where to open it, and may not wear it correctly.”

Ultimately, Mwayonga wants the Kenyan government to pass legislation obliging manufacturers to put Braille, as well as large-sized letters, on condoms and packages of ARVs. She says all HIV testing centers should have a counselor who knows sign language to serve deaf clients and ensure their confidentiality.

In 2011, Mwayonga was among 15 women recognized by the National AIDS Control Council and the Network of People Living with HIV in Kenya (Nephak) for their championing for the rights of women living with HIV in Kenya.

“The disabled can also get HIV,” she says, stressing the importance of including the disabled in any policies or programs designed to tackle HIV prevalence in Kenya. “We cannot be left out.”