In a world seemingly out of control, we need to get back into the swing of things of substance.. This week, Geneva offered some help. as the World Health Organization criticized the pharmaceutical industry for exorbitant drug prices again, this time for treatments of cancer. WHO had been asked to provide the decently researched and considered report from the member states themselves, hardly the most generous of funders. The response from the IFPMA was unsurprising and uninspiring - seeking to blame the one issue on another completely unrelated issue: The report was inaccurate “because” of the WHO’s rules of (no) engagement with bio and pharma industries.
I am starting an occasional series of blogs about global access to medicines, and in particular, how the lessons from HIV and hepatitis can be applied more broadly in non-communicable diseases. My point is that there is much to be learned from all sides, Not least the general public. Rightly, these diseases are getting much greater public attention, including Inflammatory Bowel Disease, sometimes confused with Irritable Bowel Syndrome, which has its own meme (the text is usually a little more direct. Which you can see for yourself, if you google “Irritable Owl Syndrome”). We many now consider ourselves to be the in :”The Circle of Owls.”
2019 will see the world turn its attention to universal health access at a UN General Assembly Special Session, (UNGASS) building momentum – we hope – for a world with secure access to very, very basic health services for every human on this planet.
This moment is both exciting and exasperating. The inescapable fact is that access to healthcare is essentially a government responsibility. Whether healthcare is provided by the private or public sector, it is always about what our rulers do with our tax dollars – and what power we have to influence how those dollars are spent. Is our priority a new fleet of nuclear submarines, tax cuts for the rich, a clean new hospital in the capital city, replete with the latest technology and professors sporting bow ties? Or an unexciting, but dependable public health system that covers the entire population? Depending on your point of view, the private development and manufacture of medicines is either part of a public good that is ever-evolving, or the symptom of a deep malaise.
I was lucky to be born into a post-World War 2 United Kingdom, with a welfare state. Despite the Conservative Party’s endless itch to disband it, the National Health Service still adheres to the vision of free care at the point of delivery. Created by my hero, Nye Bevan, the NHS is an untouchable national treasure. Bit like the Queen. Or the Pet Shop Boys.
But I was also unlucky to have been diagnosed with Crohns Disease at the age of 18. It has occasionally, and in recent years more frequently, clipped my ability to live as I want to.
It may be poor taste to think about global access to complex, costly diseases when the needs are so much more immediate and basic, but I cannot help pondering what a global access strategy for inflammatory bowel disease could look like.
Like the early years of AIDS, the global community does not really understand what it is dealing with. Inflammatory Bowel Disease represents a range of diseases, which we currently classify as either ulcerative colitis, or Crohn’s disease. To be honest, the causes are not really known – we have attributed everything from fast-food to poor air quality, and suggested that increasing diagnoses may also result from growing public awareness. And all of this may be possible. Crohn’s, named after a doctor who treated it, used to be thought of as the result of an over-active immune system (I know, what irony for an AIDS advocate). Nowadays, we think it is more likely to be – at least in part – genetically caused, where particular white blood cells mis-identify parts of our insides (anywhere from the anus to the throat) as alien intruders and mount a never-ending attack on them. It is a biological equivalent of the imperious populist regimes (left and right) we are having to endure. Both white blood cells and regimes identify a completely irrelevant problem – either a group of proteins or people that are essential to an individual’s or community’s well-being, and try to destroy it. Constantly.
So, we know very little. We do know that the disease is expanding globally. In a very helpful review of the latest observational research in the Lancet, Professor SC Ng from the Chinese University of Hong Kong, and colleagues from Canada and the UK, conclude that “at the turn of the 21st century, Irritable Bowel Disease has become a global disease with accelerating incidence in newly industrialized countries.”
They observe that more diagnoses are being reported in Eastern Europe, Asia, Africa and Latin America, an increase in Crohn’s of 11% in Brazil, and in Taiwan of 4% in Crohn’s and 4.8% in ulcerative colitis.
The US CDC reports that, as of 2015, there are 3 million US citizens (or 1.3 per cent of the adult population) with IBD. This is a significant increase from 1999’s 0.9 per cent, or 2 million.
Features of IBD make it, at first glance, unresponsive to global health access strategies. There is no cure. It is difficult to diagnose, treatment is of limited value, and even the latest range of biologics (which offer some greater hope) are expensive to make, not easy to take, and come with serious side effects.. TNF inhibitors, as they are called, essentially switch off a particular class of aggravated white blood T-cells. They provide remission of disease, and their length of their effect varies. TNF inhibitors are delivered mostly by self- injection (although oral medicines are beginning to appear). These biologics are extremely sensitive to changes in temperature and are not easily stored.
Yet, many would see striking similarities with AIDS response of the mid to late 1990s. The key, now – as then, is to dedicate long-term substantial resources:
- firstly, to the research and development of easy-to-use, highly-effective medicines and diagnostics; and
- secondly, to gear up the public health community to be prepared to implement biomedical innovations rapidly, once they emerge.
Meanwhile, IBD comes with its own peculiarly cruel stigma and discrimination. In the 21st century, we may talk about sex, but we do not talk about defecation (well, apart from my mother, who has a habit of enquiring at the dining table about the health of everyone’s bowels). There are patient and advocacy groups, although nothing like those in HIV or breast cancer. As with HIV then, IBD care now is about creating supportive environments for people to manage their symptoms. This is critical, as industrialization does not only mean the emergence of a middle class with a greater ability to pay.
It is appalling to imagine how, in the poorer townships still prevalent in Southern Africa, people with IBD cope with frequent, uncontrollable diarrhea. Toilets can be scarce and shared, and individual privacy can be severely compromised.
Improving sanitary conditions – a key promise of post- Apartheid South Africa – has not been delivered and still, rightly an issue of major controversy. It is shocking.
What to do? Last year, I enjoyed an exhibition at the Bill and Melinda Gates Foundation in Seattle, showing new, affordable clean lavatories. The science was fascinating, and it struck me deeply that expanding access to this technology must be a core public health priority for all sorts of reasons.
From here, improved medicines and diagnostics that are easy to distribute and store, could be incorporated into public health services, led by the well-trained, updated and compassionate cadre of nurse-practitioners we have been promising ourselves for years. They could be connected to gastroenterology experts at national centers of excellence (who could wear bow-ties if they really felt the need).
I am not arguing for the creation of a Global Fund Against IBD. Nor a UN Special Envoy. We just have to reallocate our thinking and budgets to spend more on the health of ourselves and our neighbors.
We cannot be overwhelmed by how immense the challenge is. Ultimately, it comes down to this: What is our priority as a species? Do we want our tax dollars to be spent on nuclear submarines or health for all of us? It really is that simple.