“One of the most difficult things is not to change society—but to change yourself” – Nelson Mandela
Today, we took a boat to Robben Island and went on a tour of the prison where Nelson Mandela and ANC colleagues spent many years. The island is simultaneously bleak and beautiful, as the harsh history of apartheid resonates everywhere. A few thoughts:
- Stigma is rampant around the world regarding TB. People are afraid of getting sick from TB, losing their jobs, and dying. During our tour of Robben Island, we heard about the history of leprosy, also an incredibly stigmatized disease. Imagining isolated “lepers” made me reflect on TB and HIV stigma. Stigma can be identified and reduced, as TB Proof has demonstrated.
- The critical importance of education is apparent, as South Africa copes with challenges including lack of jobs, rampant poverty, poor quality health care, and complex race relations.
- South African children must be taught their history much more comprehensively. That includes a thorough accounting of the history of slavery, Gandhi/Satyagraha, apartheid, and the liberation struggle. Every South African child should know who Robert Sobukwe was, for example. History curriculum need to be developed and teachers need to be trained. American children also need to learn our history much better.
- Mandela said, “there can be no keener revelation of a society’s soul than the way in which it treats its children.” I agree, and suggest that every South African child receive a free trip to Cape Town to visit Robben Island. This trip would be eye opening for children as they come to understand the complex history of their country.
- At the same time, on the subject of TB and children, I suggest children not live in slums like Khayelitsha. As we advocate for an end to TB, we must advocate strongly for an end to poverty and inequity. We also need to make sure the “townships” are completely revitalized, with high quality housing built that isn’t overcrowded, etc. This will take a herculean effort but it is possible. If poverty is not done vanquished, innocent children will certainly continue to fall sick, suffer, and die from MDR-TB and XDR-TB.
- TB is commonly transmitted in prisons (like Robben Island– Mandela got TB there) and drug resistant TB is leading to a public health crisis, a ticking TimeBomb. I think the vast majority of prisons should be closed, except for few where violent criminals are detained because of public safety. No one should catch TB in a prison for a drug crime, for example.
- Prisons also cause significant psychological distress/ psychiatric diseases among prisoners. And the United States wastes a tremendous amount of money on our failed prison system. How much better of a country could America be if we shifted prison money to our schools. Shut the prisons!
- South Africa (and many of its neighbors) have converted to decentralized MDR-TB treatment and has major problems with amplifying TB resistance, loss to follow-up, etc. I am entirely in favor of treating and curing each and every patient with DR-TB but we must improve the quality of the TB program now.
- We need action now from WHO on TB infection control. WHO needs to modernize its antiquated, paper-based surveillance system for TB and start counting the number of TB cases who are health care workers. There is no time to waste. Lives are on the line, Dr. Raviglione and colleagues at WHO. In the interim, we need to add a column to the facility TB register to start counting the number of health care workers with TB.
- I personally believe that many hospitals in Sub-Saharan Africa should be closed and rebuilt by architects/ engineers/ builders with extensive training in airborne infection control. It will be very hard to fix up many of these decrepit facilities that are currently throughout countries like South Africa. We need to ensure that each and every new facility has an excellent design, including outdoor waiting areas, no indoor corridors, etc.
- We also need WHO’s dedicated unit on health worker safety and infection control to establish branches in each Ministry of Health. They need to be funded and resourced appropriately. Thanks so much to Rony Zachariah for this idea.
- TB PROOF itself needs to look globally– to open satellite branches in India, China, etc. In order to do this we need to improve our communications methods, our website, etc. TBproof.org needs to become the hub of a global TB infection control movement.
- We need to do a much better job disseminating our TB infection control ideas, Alberto Basteiro told me. Our work should be published in open source journals and Tweeted/ Whatsapped widely.
- We need to build relationships with journalists. They want to write interesting stories and we can help them find the important issues.
- Unless poverty miraculously vanishes overnight, TB will stay with us. I believe the only realistic solution for getting rid of TB is a massive amount of funding to develop a new TB vaccine. Where is this money going to come from? A big donor needs to cough it up.
- As Lee Reichman said yesterday, we need to identify every TB outbreak and have a “swat team” disseminate it on social media, to remind Americans that TB is a TimeBomb and needs to be funded appropriately.
- Finding excellent role models and colleagues is key as we continue this work. Today I had lunch with Thato Mosidi and Arne von Delft, amazing TB advocates, activists, and doctors from South Africa. I am sure our friendship will grow in the future. Please read the paper we wrote last year.
- TB and HIV advocates need to work together, like TB PROOF, TAG, and TAC are demonstrating. The small TB activist community and larger HIV activist community need to help each other grow. I personally think the Union Meeting and IAS meeting should be held the same country at the same time. For example, we are in Cape Town in December for the Union and Durban in July for IAS. This is silly. We should be in the same city so TB/HIV barriers can be broken down.
- Well-developed information systems (like WhatsApp) are important. Laboratory strengthening is also extremely neglected. Laboratories must be appropriately funded and lab workers must be well-trained and receive a living wage.
- Some career advice– learn how to keep a budget. Learn how to write a cogent paper—in two languages, if you can! Learn how to use social media like Twitter, Whatsapp, and Facebook. It’s not a bad thing to publicize and promte your team’s work. These are important skills to have.
- To get motivated, I suggest advocates watch the following movies: How to Survive a Plague; Mandela; and Selma.
- It’s important that we each get outside of our comfort zone. That means traveling, learning a new language, making friends with people of other religions, races, and ethnicities, and getting on Twitter and learning what people are saying in faraway places. For example, #BlackLivesMatter. Thanks so much to my TB PROOF friends who trusted me in sometimes challenging conversations about race.
- I suggest parents worldwide have the goal of raising their children bilingual (if not trilingual). Knowing multiple languages is crucial for the developing brain and to make children more empathetic.
- Many of our successes come from earlier failures. Take Gandhi in South Africa, for example. We learn from our failures; they help us learn.
- Leadership comes from relationships and how we treat each other. I will remember if I feel like you insulted me, even if you don’t realize it, and even if try to let go.
- Music can heal, help people transverse cultural barriers and inspire social movements. It happened in the Civil Rights movement in the USA and the Anti-Apartheid movement in South Africa.
- Stop the hatred. Stop the fear. No more wars.
Thanks so much for visiting my website! Writing and reading blog posts does take time and we all know that time is in short supply. You and I will both get much more out of this blog if it leads to dialogue. If you found my post useful and wouldn’t mind leaving a brief comment or sharing on social media, I would be grateful. Or if you’re shy about Tweeting but are willing to email me a comment that I can post anonymously or send an anonymous Surveymonkey, that would be great. My posts are generally written quickly, so if you find any factual or grammatical errors, please do let me know. Best regards, Philip Lederer