Crisis in the financing against the neglected diseases: What to do?

Madrid, October 16.

“It is not easy to have a single definition of ‘neglected diseases (NTDs),’ but we do know where they are,” said the director of the Pan American Health Organization, Jarbas Barbosa, at the closing of the meeting on NTDs that took place last October 16 in Madrid.

“In Latin America, for example, some of these diseases are localized, in impoverished urban areas, in rural communities and indigenous or Afro-descendant territories; but others need to be sought out and integrated into the responses of health systems,” Barbosa said. For this reason, he indicated that PAHO works with countries on elimination plans that have achieved successes such as the control of onchocerciasis in four countries in the region, including Colombia and Mexico; or the progress made against malaria in the Amazon. And above all, he highlighted the efforts made against the spread of dengue fever, which has hit the region over the past year.

The meeting brought together several experts and representatives of national and multinational public institutions such as AECID and PAHO, together with non-governmental organizations convened by Salud por Derecho, DNDi and Doctors Without Borders. The aim of the meeting was to analyze and share national and global commitments to curb the ravages caused by these diseases to more than one billion people in the world.

Vanesa López, representative of Salud por Derecho recalled that we are at a very important moment as the revision of the Roadmap that was approved at the WHO to reach 2030 with targets for the elimination of NTDs is approaching.

“But we will not reach them,” said José Antonio Ruiz, a physician with the World Health Organization’s (WHO) NTD Control Program, regarding the targets. He also lamented the decline in human and financial resources in his department. However, “we could blame Covid for the delay in countries‘ ETD intervention programs, which is estimated at two or three years of delay; or we could blame lack of money, but the truth is that sometimes there are tools available that do not arrive on time because of the weakness of some countries’ systems and the late response,” said Ruiz. However, he highlighted the progress made in sleeping sickness or dracunculiasis, even more valuable “in contexts that suffer violence or natural disasters together with a lack of resources”. He added that it is essential for the WHO to count on the collaboration of public and private partners, such as some of the organizations present at the meeting with which they already work.

The Drugs for Neglected Diseases initiative (DNDi), a founding member of the Global Chagas Coalition, is one of the organizations that has been the driving force behind R&D for neglected diseases since it was launched by Médecins Sans Frontières at the beginning of this century. Isabela Ribeiro, the director of DNDi’s viral disease cluster, recalled that, in 20 years, this initiative has developed 13 new treatments and there are more in the research pipeline. All of them “designed from the beginning to be accessible and more affordable than those produced by private companies”.

For Ribeiro, what the organization described in an initial report as “the fatal imbalance” between the needs and the lack of investment in innovation continues to exist. While it is true that there has been a period of much funding, “that period is over and we are facing a crisis due to the lack of resources”. DNDi’s proposal of public-private partnerships (PPPs) has yielded good results. “We have seen how with small investments big advances are achieved. For $1 invested in ETD R&D, a return on investment of $405 can be produced”, he commented.

However, given the current funding crisis, the question, according to Ribeiro, is this: what international mechanisms should be implemented to finance biomedical innovation that guarantees the delivery of products adapted to the needs of the communities that need them? In this regard, Íñigo Lasa, director of the Anesvad Foundation, one of the speakers at the meeting, expressed that the financing of NTDs cannot depend almost exclusively on private companies. And he referred to the complexity and cost of investing in solving the social and environmental determinants of NTDs, such as the lack of access to drinking water, for example.

It is there, in the communities most affected by the NTDs, where the effectiveness of the tools that are developed is measured. It is a road full of hills and valleys. Leishmaniasis, for example, has been better tackled in Southeast Asia than in sub-Saharan Africa. Logistical difficulties and the characteristics of current drugs make this difficult, recalled Francisco Bartolomé, a specialist in NTDs for Médecins Sans Frontières.

The conditions in which millions of people live challenge the effectiveness of therapeutic tools. Bartolomé mentioned several examples, such as scabies which, in refugee camps, is so difficult to treat because people can hardly ever take off their clothes, wash them at 60 degrees and keep them in a bag for a week for the mites to die. And he also emphasized the need for new products for snakebites that claim the lives of 150,000 people a year, among others. Although some ETDs can be controlled with massive drugs distributions, in practice, these campaigns do not work well because of weak health systems.

As Dr. Barbosa, from PAHO, pointed out in his speech, “these diseases (NTDs) create a vicious circle with poverty, because when someone without resources becomes ill, their capacity to produce and provide for their family decreases. And the disease, therefore, increases poverty”. Faced with the challenges posed by the lack of resources, Barbosa recalled PAHO’s revolving fund for medicines and vaccines, which makes it possible to attract donations and make joint purchases to reduce prices. Finally, she recalled the problem of cervical cancer, which, she said, should be considered as an NTD because it seriously affects women living in poverty. “In Latin America, half of the families only have one adult to support them and it is usually a woman”, which indicates the seriousness of what happens when women get sick.

At the moment, cervical cancer vaccination coverage is low. “We now have a new test that is much better than the traditional Pap test. The problem is that it costs about $25. We want to bring it down to $7 with the joint purchasing mechanism.” He advocated eliminating this type of cancer in the region to show that it is possible to do so in the rest of the world.

This objective was part of the dialogue between PAHO and the Spanish Agency for International Cooperation (AECID), as confirmed by the Director of the latter, Antón Leis, who opened the Madrid meeting. In his speech, he expressed his hopes for a larger budget next year to reinforce SDG Goal 3 and the One Health approach that encompasses NTDs with other diseases that are more widely addressed.

With the meeting being held in Spain, the importance of the commitments to eliminate Chagas disease, which affects more than 7 million people worldwide, of which more than 50,000 are estimated to be in Spain, was underlined. In this regard, the director of PAHO, Jarbas Barbosa, recalled the strategy of implementing maternal and child screening in health systems together with priority diseases such as HIV or syphilis.

In Spain, as was recently emphasized at the meeting of the Ibero-American Initiative No Baby with Chagas, a prenatal screening protocol has been implemented at the national level, which will surely allow more and better detection of women with Chagas and follow-up of their family members and children, as recommended in the protocol. In the region of Murcia, for example, the team at the Arrixaca hospital has found that mother-to-child transmission, which is the most prevalent in the country, has been 100% controlled.

Finally, Antón Leis invited the participants to visit the AECID headquarters in Madrid, on Reyes Católicos Street, where a photographic exhibition of projects on Chagas disease in Paraguay, which AECID supported together with ISGlobal, a member of the Chagas Coalition, is currently on display.