Award-winning Union member Julian Villalba highlights the plight of indigenous Venezuelans and how we must fight for the human right to diagnosis and treatment for all

When Julian Villalba was a 22-year-old medical student he discovered – and drew international attention to – the tuberculosis (TB) and HIV epidemics that were ravaging some of the most isolated tribal peoples on the planet.

Rather than work in a city-based clinic, Villalba’s elective choice led him to serve the Warao tribe who inhabit the Orinoco Delta, an area of dense jungle around one of Latin America’s largest rivers.

“Anthropology had always been a huge interest for me, and I’d been a bit of a boy scout ever since I was a kid. There was no doctor in the area, and since the Warao communities are accessible only by boat, we did our rounds in a dug-out canoe, running our clinic from there.

“It quickly became apparent that TB was rife in these communities. Because prevalence was so low in Venezuela generally, I had only seen a couple of cases during my studies. But in this isolated area the disease was widespread -- rates of childhood TB were astonishing. The shocking reality was that TB there wasn’t being controlled in these communities at all. There were no children in treatment, and no preventive therapy. This became my priority.“

Beginning with a cohort of 500 children, Villalba followed them up for two years, working in collaboration with experts based in Caracas and The Netherlands.

“Focusing on the clinical determinants of the disease, I examined childhood TB diagnostic criteria from many different organisations around the world. I refined this information and developed five new criteria. These were validated in two cohorts of patients. Venezuela’s Ministry of Health was very happy with the research and included it in national guidelines – the idea being that any health care worker could use it to get people started on preventive therapy. A doctor wouldn’t necessarily be required.”

After Villalba finished his medical training he returned to the Orinoco Delta for another eighteen months as a primary care physician.

“When I returned I found many in these communities had immune-suppressant illnesses. It was HIV.”

Together with his mentor in Caracas, Villalba conducted a study. Of the 600 adults surveyed, ten percent had HIV. No treatment, preventive measures or support was being given.

“In a tribe of only 30,000 people, this was a catastrophic rate of infection. If nothing was done, the future of this entire community would be threatened.

“I designed an integrated programme to deal with TB and HIV in the region, whereby infectious disease doctors would go to the delta once each month to check on patients and distribute drugs. I gave this proposal to the Ministry of Health and was initially encouraged by their response.”

But with national elections looming, the story was quietly buried, and rather than receiving assistance, Villalba was told to stop pushing. So he flagged the issue with WHO and PAHO.

Villalba had to leave the Orinoco Delta after two years, but he never lost touch with the Warao.

“80 percent of patients I diagnosed with HIV five years ago there are now dead. Because there is so little medical care, and TB rates are so high, HIV progresses to AIDS very quickly.

“HIV prevalence in the delta is stable, but that’s only because so many people are dying. In one community I visited, 40 percent of people had HIV. In some communities almost all the men are dead. Of course this changes social structure irrevocably. Warao people are now moving to the city and even to other countries – which complicates the health care situation further.”

Villalba is hopeful that the Warao will survive, but he says urgent action is needed. Across the country TB is now thought to be increasing dramatically as the national TB programme is disintegrating through lack of funds and expertise -- doctors and medics are leaving the country amidst the political turmoil. At present there is neither the funding nor the political will to intervene. 

As winner of The Union’s Young Innovator Prize in 2014, Villalba highly values his Union membership, and the belief in The Union’s mission to improve health for those people living the toughest of lives.  

“I have seen few organisations that are genuinely unbiased, and few that have such vision. The Union’s goal of helping developing countries and governments establish effective TB programmes is unique and urgently needed. Not many organisations are interested in working in traditional communities.

“TB has very complex biology, but we do know how to cure it and prevent transmission. The programmatic part is essential to this. And this is what The Union does so well. This is an important community for me.”

Villalba now works in the USA, as chief resident in clinical pathology at Massachusetts General Hospital, Harvard Medical School, studying pathology and microbiology.

“These will be vital tools for me to continue fighting these epidemics in future. Clinical medicine is key. But establishing a right diagnosis is essential. Without developments in pathology, medicine would still be in the 1800s.

“The healthcare situation in Venezuela is very complex, especially regarding TB. Colleagues in Caracas report that TB confirmed cases have tripled in the last three years. And this in the capital city, where some TB labs are still functioning. In other parts of the country this infrastructure no longer exists.”

Although free provision of antiretroviral therapy (ART) and TB treatment are both in the Venezuelan constitution – this commitment is no longer being met. And Villalba says this care has never been provided to many isolated communities such as the Orinoco Delta.

“True health data are now being suppressed. So really we just have the evidence from communities. Many people and organisations would love to help, before Venezuela’s TB situation spirals out of control, but we need permission from the government, and their confidence in us, to begin.”

Villalba’s experiences in Venezuela are unfortunately just one example around the world where individuals are not yet able to get the access to diagnosis, treatment and care that is urgently needed to save lives and beat the twin epidemics of TB and HIV. The first ever High-Level Meeting on TB will be held this September – a key opportunity to transform healthcare to be equitable, rights-based and people-centred.

“TB has been neglected for decades -- because it is a disease that affects only the poor. In the last three centuries when influential people, like Spinoza and Chopin, were dying of TB in developed nations, it was a global priority. Physicians and researchers wanted to work on TB. Now it is no longer seen as a first world problem, it is unacceptably neglected.

“I am hopeful that this meeting will again raise TB as an urgent concern, that it will once more be a priority in the UN arena -- and that it will result in commitment to specific objectives and plans of action. Ambiguous language is no good for epidemics.”

Find out more about the UN International Day of the World’s Indigenous Peoples.