After fighting tuberculosis for three years, Phumeza Tisile is asking governments to recognise it as a public health emergency
My name is Phumeza Tisile, I am 23-years-old and live in Cape Town. In 2010, I was diagnosed with tuberculosis and was forced to stop my studies at Cape Peninsula University of Technology to go for treatment. Despite this my condition did not improve, and after about five months of treatment, first for "normal" TB and then for multi-drug-resistant TB (MDR-TB), I was finally diagnosed with extensively drug-resistant TB (XDR-TB), the deadliest form of the disease.
Being misdiagnosed twice meant I received the wrong medication for many months, an oversight that cost me my hearing. Hearing loss is a known side-effect of the painful daily kanamycin injections that I took as part of my MDR-TB treatment.
The XDR-TB treatment was extremely difficult too – I had many setbacks and was in and out of the hospital. The medicines made me feel even sicker than I already was and I would dread seeing the medicine trolly coming down the hospital aisle. I even had surgery to remove TB from my lung, resulting in a broken rib and a collapsed lung.
By mid-2011, my XDR-TB treatment was not working. I met Jennifer Hughes, a Médecins Sans Frontières (MSF) TB doctor, who started me on an individually tailored XDR-TB regimen. For the next two years, I took more than 20 tablets every day, many of which were so foul I often vomited. At one point, I was told that the TB had spread too far and I was likely to die. But I carried on with my treatment. In August 2013, I was finally cured of XDR-TB.
Dr Hughes had included a drug called linezolid in my treatment. The drug was not developed to treat TB, but it saved my life. I am one of the lucky ones – many people who need linezolid cannot get it because it is extremely expensive in South Africa. At €48 (£38) per pill, it costs around €35,000 (£27,760) per patient for the two-year treatment – and it is just one drug out of the handful of pills to be taken each day. The reason it is so expensive is that linezolid is patented in South Africa, and only one company can sell the drug. There is a cheaper generic version of linezolid that could be used, but it is not accessible here.
Although I survived, a lot of the people I met along the way did not.That is why I decided to write the Test Me, Treat Me DR-TB manifesto with my doctor.
The DR-TB Manifesto makes three demands: first, everyone should have access to testing and treatment for drug-resistant TB. Even though new rapid diagnostics are becoming more available, less than 20% of people with DR-TB are diagnosed – and in many countries, including South Africa, fewer than half of those diagnosed start treatment. Second, we need better treatments that have higher cure rates and are easier on patients. And finally, we need the international community to fully fund the fight against DR-TB. Right now, if we hope to have enough resources for TB, we are short an estimated $1.6bn per year.
Last October, I marched with health activists to the department of trade and industry in Pretoria to hand over recommendations on a new draft policy to fix South Africa's patent laws. If South Africa stopped granting so many patents on medicines, or could get generics when patented medicines are too expensive, it would save money and allow more patients access to critical drugs like linezolid. If we did not grant companies patents on the use of their drugs in combination with other TB treatments, it could also make it easier to develop new TB treatment regimens – but the reforms keep being delayed. South Africa's new government needs to act now to finalise this policy.
In May my campaigning went global when I attended the World Health Assembly in Geneva, Switzerland, where ministers of health from around the world set the next global 20-year strategy for TB. Supported by more than 55,000 signatures of patients, doctors and other people from across the world, I delivered the DR-TB Manifesto to the delegates.
Drug resistant TB needs to be recognised as a public health emergency. We have demanded that governments take action, but there is much more work to be done. Until the situation improves, I will keep speaking out about the challenges that DR-TB patients face.
Source: The Guardian