ILL/LOGISTICS

On the structural relations and logistical frameworks of illness.

Situation (1)

In 1980, my grandmother was diagnosed with cancer in Tehran, Iran. There was no advanced medical treatment available in the country at the time - therefore, my father, who had emigrated to Hamburg, Germany, a few years before, got her to Germany, where she underwent chemotherapy treatment (O ᗕ). She stayed in Germany for 6 months, sleeping in the living room of the small apartment my parents rented out at the time. After the chemotherapy, she returned to Iran. The delayed treatment was unsuccessful, and she died a few months later.

Situation (2)

In Autumn 1992, as a child, I was diagnosed with a chronic autoimmune disease in Hamburg, Germany. Since then, I have been dependent on daily, life-saving medication and monitoring. It has now been 29 years since my diagnosis, and the treatment has changed quite a bit in this time – for the last 20 years, it has comprised of an improved regimen of medication 4 × a day (A⚆) (B ∇) and monitoring (C ■). The medical management of the disease has become more advanced during the years, although additional monitoring and check-up needs (C ■ +) also arose over time. Up until now, these efforts have done what they are supposed to do – I am alive, and am not yet suffering from the common complications that come with the disease.

Situation (3)

In Spring 2017, I was diagnosed with a second chronic autoimmune disease in Berlin, Germany. I was initially prescribed medication 3 × weekly (D ᗣ) for it, which was then replaced by intravenous infusions 2 × per year (E ꙮ). Because this latest change in medication suppresses my immune system, additional precautions need to be taken (F □): for example, ensuring protection against severe viral infections and monitoring the necessary intervals between immune suppression and other medical treatments, such as vaccinations. In addition, there are the necessary disease check-ups (F □ +) 2 × per year. So far, these efforts have succeeded: disease activity has been stopped.

Although these three separate instances of illness and its management are closely linked to my personal life, I do not want to look at them through a personalized, illustrative narrative. Instead, I want to focus on some of their structural relations and logistical frameworks. Logistics in the sense of a sober, unglamorous, essential, yet multi-layered connectivity, which cannot merely be approached symbolically or metaphorically.
Susan Sontag writes in Illness as Metaphor that “Nothing is more punitive than to give a disease a meaning - that meaning being invariably a moralistic one.”[1]
She wrote this treatise in 1978 while ill herself, reflecting on how the most truthful way of thinking about diseases is without recourse to metaphor. For any illness, and particularly for the often-blurry and not very well-understood condition of autoimmunity [2] in chronic illness, this means recognizing it within its complexities, unsolvabilities and ambivalences, yet not reducing it to the constructed meanings, mythologies or ideologies that we might like to project onto it.

Illness logistics do not provide us with such space for projection.

(2) + (3)

The medications (A⚆) (B ∇) (D ᗣ) (E ꙮ) and monitoring needs (C ■) (C ■ +) (F □) (F □ +) listed under (2) and (3) are available to me within affordable universal healthcare provisions in most European countries.[3]
I only pay around €500 extra a year in the form of co-payments, for non-conventional supplements (G ֎) that are likely to help my medical condition but aren’t available for prescription. According to the pharmaceutical companies that manufacture them, the combined cost of all of my current prescribed medications (A⚆) (B ∇) (E ꙮ), at list price, is currently around €70.000 per year.
This, of course, is a fictitious monetary sum set by a capitalist pharma-technological complex for medication available only in the particular circumstances that are backed by the supplying system.

Structures of distribution are structures of power and of (denied) possibilities in this system. If you take on the role of the ‘ill entity’ within it, you are made acutely aware of how inherently entangled your existence and survival are with its structures. This obviously applies equally to the ‘healthy entity’ in the system, but its codependency and relationality are often less evident.

(2) + (3) ⇆ (1)

Given these entanglements and relations, I want to look again at the lack of advanced medical treatment in situation (1): what would situations (2) and (3) mean in Iran right now, in 2021? Which pharma-technological preconditions and health management options would be available to people in Iran?
Iran's health sector changed drastically after the Islamic Revolution in 1979, after which Iran worked on a generic national medical policy that sought to make the country as independent as possible from Western imports.  [4] International sanctions have furthermore forced Iran to evolve from importing almost 100% of its pharmaceutical needs to manufacturing more than 60% locally.[5] In 2014, the Iranian government implemented a reform nicknamed “Rouhani-Care”[6] which has further strengthened affordable public healthcare.
Yet when it comes to specialized drugs, treatments and medical equipment that cannot be produced within the country, the pharmaceutical sector and the people who depend on it have been greatly affected by mismanagement by the government, economic sanctions imposed by the West and subsequent ongoing difficulties in trade, import & export.[7]
For the availability of the above-mentioned treatment regimens of (2) and (3), this means the following: Medications (A⚆) and (B ∇) are available in Iran. However, recent shortages have affected the availability of equipment needed for their administration to patients.
(C ■) is not available, and would need to be paid for privately or replaced with an outdated, less effective version. (D ᗣ) is available as a generic/biosimilar. (E ꙮ) is not available, and would need to be replaced with a less effective treatment. A generic version of it is currently in its Phase III trial and will possibly become available sometime in the coming years.
But considering that life expectancy is statistically 8 reduced by approximately 10-15 years by illness (2) and approximately 5-10 years by illness (3), when it comes to treatment, timing and effectiveness are virtually everything (→ (O ᗕ) → (1)).

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As relational, susceptible categories, ‘timing’ and ‘effectiveness’ (or the lack thereof) once again stress that health is not a self-contained concept. It is a dialectical, intertwined connectedness. The fight for greater equality in health rights therefore cannot be fought through claims of escapist alternatives and “intuitive individualism in the guise of ‘health freedom’”[9] and instead needs an urgent call for accountability and restructuring of the biopolitical decision-making system in place. First and foremost, this would demand a disassociation of scientific medical advancements from capitalist market logics, and a radical reform and decolonization of global pharmaceutical market logistics and distribution patterns.