If superheroes use their powers to save the world from fearful enemies, Silvia Gold (Buenos Aires, 1948) uses hers to give visibility to neglected diseases, those suffered by 1.6 billion people far away from Spain -they are limited to poorer countries, save for the three big ones (AIDS, malaria, HIV). And her skills are not few; her mission has lasted for four decades now, a period over which she attained such milestones as including Chagas disease in the London declaration on neglected tropical diseases and creating a public-private consortium to produce the medicine of choice to treat this illness, benznidazol. Her current endeavor is to give visibility to this condition so that childbearing age women have access to early diagnosis and treatment, for the purpose of winning the ultimate challenge by 2030: not a single baby born with Chagas disease.
Gold is known as one of the great world activists against poverty diseases, even though when speaking of her work she never speaks in the first person of the singular. She uses the plural form because, all along her vital and professional journey, she remained tied to her family bonds. A biochemist by profession, she married Hugo Sigman, MD, and shortly after the wedding, the 1976 military coup of Eduardo Viola forced the couple into exile in Barcelona. There they created Chemo, a pharmaceutical company intended to produce quality medications at affordable prices.
In the 80’s, after the return of democracy in Argentina, the Sigmans returned to their nation and founded Insud, a holding group comprised of life science companies, forest and agribusiness, cultural and design firms. Not long before the turn of the century, in 1998, Gold took over the presidency of Fundación Mundo Sano. Her father, doctor Roberto Gold, had created it five years earlier for the purpose of facilitating access to treatment and improving the life conditions of people affected by Chagas disease, a Latin American endemic parasitosis. This is not a disease alien to their family proximity, since Argentina is one of the countries with the highest numbers of cases.
Soon enough, though, Gold appreciated that focusing on just one issue limited their options. “We extended our mission to the concept of neglected tropical diseases in order to expand our vision,” she tells. “We work on intestine parasites which have a much wider footprint in the world and also on the aedes mosquito, which transmits dengue, zyka, chikungunya, yellow fever…” This is her way to have a more global vision of a public health problem that many consider could be solved by just eliminating mosquitoes.
In the years fighting against Chagas disease, the cases gradually decreased thanks to the progress made in the control of conenose or kissing bug, the insect transmitting the parasite, Trypanosoma cruzi. “The Pan American Health Organization promoted certain initiatives to stem the vector, which had positive effects. In addition, donor vigilance in blood banks improved a lot and contagion by transfusion was reduced,” Gold recalls. But alarms went off in 2010 upon world depletion of benznidazol, one of two drugs indicated for Chagas treatment (the other is nifurtimox, produced by Bayer). “I was in Barcelona, participating in the European Conference on Tropical Medicine, when the organization Medicos Sin Fronteras published a newsletter announcing that, in light of lack of benznidazol stocks, the medicine was not to be administered to patients anymore,” tells us Gold. “The situation caused deep frustration in us, so we decided to fight against it,” she says. The fight yielded results.
An alliance to stem expensiveness
Under the leadership of Gold, Mundo Sano and the pharmaceutical laboratory ELEA-Phoenix promoted a strategic alliance between public and private sectors to produce benznidazol in Argentina, where over one and a half million affected individuals reside. “The medication was approved in the country in January 2012, and supplied to many nations, including Spain,“ where the Spanish Drug Agency granted approval the same year. “The Bill and Melinda Gates Foundation invited us to participate in the London Declaration,” –issued in the same year, this was a joint initiative of the Gates Foundation and the World Health Organization-, which makes Mundo Sano the only Latin American organization in Uniting to Combat,” a program aimed to fight against neglected tropical diseases. To Gold, inclusion in this alliance represented a great opportunity.
The Gold family had achieved their goal of giving Chagas visibility, but refusing to settle on that achievement, they worked even harder. The new interest was “to facilitate access to treatment in the US (a country where some 300,000 individuals are infected with Chagas) because the drug was subject to many restrictions there and the US Centers for Disease Control and Prevention were in charge of distributing it to patients included in protocols,” Mundo Sano president continues to tell. North American specialists pressed health authorities for benznidazol approval and, in 2017, the FDA granted it. “It was a moment of significant growth because, although we already had a background of recognition to our commitment, coherence and values, FDA approval added to our credibility and opened many doors. It was a big leap that took us to playing in the major leagues,” says Gold with pride.
And it had not been sheer luck. The success of Mundo Sano is the result of their working with a planned strategy and with the scientific approach that Silvia Gold always upheld: “Biochemistry gave me something that was the essence of our work at the Foundation. I am keen to activities related to science and health and being part of work teams when discussing projects, staying around researchers and questioning everything -which is the most important thing, she affirms. I get excited with results, which some times are good, and other times bad; but with all of them you learn and go forward.” She is not the only individual with this point of view, as proved by the many memes that credit the positive side of failure.
The objective, no childbearing age female without treatment
Chagas is tricky, because in the acute phase it is gentle and during the asymptomatic phase it may go unnoticed, become chronic and cause severe digestive, neurological and heart conditions (they appear in 30% of chronic patients). Creating visibility is the commitment that Mundo Sano undertook for 2019, so that “all childbearing age women may have access to diagnosis and receive treatment,” a goal that includes their babies. We are seeking to eradicate vertical transmission of the disease, which occurs between mother and fetus and is the most frequent contagion path at present.
“We believe that the conditions already exist to change the course of this disease. Everything we’ve done has crystallized and it is time for us to speak to another audience,” which is no other than those who suffer this illness. The first thing is, Gold says, persuading people to free themselves from shame and making them understand that this is a disease caused by a parasite, that there is a cure and that they need to ask for treatment.
Once again, this Argentinean doctor resorts to her powers to gain visibility and has sought new partners among medical and humanitarian organizations, like Caritas. “We work with medical associations, especially with those gynecologists are joined in, because a woman who is treated will not transmit the infection during pregnancy,” she says. And laments: “I think it inexcusable that Chagas screening tests are not conducted on childbearing age women who visit gynecological offices and that they are not given appropriate treatment. That would cut off vertical transmission.” Her proposal is to make the screening test to all girls in endemic countries and immigrant girls coming from endemic areas. The test is simple and inexpensive and can be run together with any blood count. If a woman is found to be infected, all of their relatives should be tested, including males.
Spain is one of non-endemic countries with the highest number of affected individuals, between 50,000 and 100,000, according to Mundo Sano data. With the support of some hospitals and Caritas, educational courses have been imparted to volunteers to speak about Chagas with pregnant women and in neighborhoods with strong Latino presence. “In the most popular meetings we have attained audiences of about 700 people, but the most regular numbers are close to 300.” Of these people some 80 are estimated to be infected, but then “only 60 of them go to health service centers, and just half of them adhere to treatment.” Gold is aware of the fact that a significant number of affected people are lost in the process, but she does not falter in her determination: “We do not want this to be so and we have started to change the strategy. The first thing was hiring a nurse.” And she finishes: “We are not seeking to point fingers, but change things. We are persuaded that there is a solution to this problem,” and the first step is “to try and understand what we are failing in and then do what is necessary to make it right.”
El País: https://elpais.com/elpais/2019/04/02/buenavida/1554223333_060474.html
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