Editorial | Sickle cell drug, but …

Tuesday’s conclusion by an expert panel that a breakthrough drug by a US pharmaceutical firm for the treatment of sickle cell anaemia is safe for clinical use is potentially good news for tens of thousands of Jamaicans who either have traits of, or actually suffer from, the disease.

But for this newspaper, there are two other important, but related, take-aways from this development. It reminds of the weakness, if not absence, of applied research in Jamaica and the rest of the Caribbean, and at the same time highlights the potential for collaboration between regional academies and the private sector in research and development to bring new products, including medicines, to market.

With respect to Jamaica, the time, we believe, is propitious for accelerated action on this front, led by the Mona campus of The University of the West Indies and the University of Technology (UTech). Both institutions face significant economic problems, but are under new leaders, who apparently have new visions and are pursuing mandates different from the recent past.

At Mona, while Professor Densil Williams – installed in August as its principal – campaigns for a stable, long-term funding formula for the campus and maintains that there is intrinsic value in a general university education, he also insists that the academy has to be responsive to the development needs of the society within which it exists.

APPLIED RESEARCH

Only a month after Professor Williams assumed his post, Kevin Brown assumed the job of president of UTech, apparently with the mission, shared by the university’s new chancellor, Lloyd Carney, of returning UTech to its core as a polytechnic university. The new trajectory is not only sensible, but quite understandable in two respects: both Mr Carney and Dr Brown have strong backgrounds in, or relationships with, applied research.

Dr Brown, a Jamaican, is an aerospace engineer, whose previous job was as technology project lead for civil aerospace technology and future programmes at Rolls-Royce, which manufactures jet engines for commercial and military aircraft.

Mr Carney, also a Jamaican, is a digital technology entrepreneur and investor who has developed, nurtured, sold and managed global companies in that field. But more significantly in the current context, he sits on the board of Vertex Pharmaceuticals, the Boston-based lead in the development of the sickle cell drug, Exa-cel, with the Swiss firm, CRISPR Therapeutic.

With the expert’s panel positive review of Exa-cel, the US Food and Drug Administration (FDA) is expected to soon approve it for broad clinical application.

It is not known how widely available this drug, and others in the FDA’s pipeline, will be to Jamaica and other poor countries with high incidences of sickle cell anaemia. Cost could keep them out of our reach.

That they exist is nonetheless encouraging and will hopefully excite the kind of collaboration in research and development suggested by The Gleaner.

Sickle cell disease is aptly described by its name, a mutation of genes that cause blood cells to be shaped similar to the cutting end of a sickle, or a quarter moon. These malformed cells become stuck in blood vessels, causing the victims excruciating pain, strokes and organ damage. And often early death.

PREVALENT

The disease mostly affects people of African ancestry, so is prevalent in the Caribbean. In Jamaica an estimated 10 per cent of the population, or more than 270,000 people, have a trace of the disease – though not the full-blown condition. Just over half of the one per cent of Jamaicans – one in 150 people – developing the disease. These ratios are similar across the Caribbean.

Some official data suggest that in Jamaica male sickle cell patients, on average, survive to age 53 and women to 59, or up to a decade longer than in the United States. While there is no immediately empirical analysis of the cause for this apparent differential, it might be explained, in part, by the decades-old existence of a Sickle Cell clinic at Mona, which has developed regimes for managing sickle crises in patients. The efforts of that clinic benefited from the research of academics and clinicians, such as Professor Graham Serjeant and his successors at the Sickle Cell Unit that is part of the UWI’s Caribbean Institute for Health Research (CIHR).

The stellar work of bodies like CIHR and its predecessor, the Tropical Medicine Research Institute, hasn’t translated into the kind of applied research that leads product development and similar innovations. Which is a matter about which The Gleaner complained at the height of the COVID-19 and lamented the absence of research at UWI for the development of a vaccine. We suggested then that the Caribbean Community (CARICOM), with UWI as its lead, should seek to develop biotech research partnerships with Cuba, which, despite its limited resources, has done similar work in this area.

That idea, we believe, remains relevant, especially given the low spending in this region on research on development – less than one-half of one per cent of GDP, by most estimates. The Caribbean has few intellectual property registrations with the World Intellectual Property Organisation (WIPO).

This dearth of IP registration and advancement of innovation isn’t a statement about intellect, but rather the absence of a facilitatory ecosystem for R&D. Jamaica and the region have to start somewhere, even if the resources are limited.