Swapping Cells for Self Satisfaction

About two and a half years ago I went to London to jettison a few of my extra stem cells, I gave them to a stranger who needed them more than I did. Whilst this was of course exceptionally heroic, selfless and fantastic of me, it was also extremely easy: I had to endure the hardship of a couple of days off uni, free transport to and accommodation in London, spending a couple of comfortable hours attached to a machine that selectively extracted (apheresis) my extra blood cells (which I’d made with the help of a few G-CSF injections previously). I then had some time to leisurely amble around London and see a few friends before travelling back home feeling smug.

I was probably insufferably sanctimonious for a good while after this, I’d proudly wear my Anthony Nolan T-shirt confident in the knowledge that I’d be eventually starting my medical career with a plus-one advantage on lives saved and so I’d casually drop my admirable sacrifices into Facebook statuses and conversations wherever they could be shoehorned in. My delusional sense of self-importance slowly began to wane as I began to realise that what was easy for me would be hugely significant for a patient somewhere whose treatment cells carried no guarantee of success. There was a very real chance that for someone in the world suffering a long and unpleasant encounter with blood cancer my donation of stem cells represented only an unfulfilled promise of cure, a missed chance, a dire conclusion. Suddenly I didn’t feel quite so cheerfully heroic anymore.

Yesterday my mood on the subject changed somewhat: I received a short thank you letter from the lady who received my cells, and truly it made my week. I’m grateful for the letter and its consequence and I will keep it always. The Anthony Nolan Charity takes steps to prevent premature contact between donor and recipient to minimise any potential for emotional harm or coercion, and to protect anonymity and patient confidentiality. For these reasons I’ve been asked not to share the contents of the letter but I think I can share my inference that the writer is a European lady who, to my delight, is both alive and well. (In addition she has my DNA kicking about in her veins which is pretty cool; I hope she doesn’t bleed at any crime scenes.)

So it’s super easy to give someone a chance at life, and, reverting to smug mode, it feels really great. I’ve also come to appreciate that not all of these chances end as well as it did for my recipient and so I have two conclusions:

One, self-congratulatory fist pumping is not always immediately appropriate, better to be humble and to try and first consider the impact and risks for the patient (let the patient be your first concern etc.).

Two, for these patients to even have a chance requires as many people as possible to register to give up some blood if they are a match. I cannot overstate how easy it is to join the register, and the donation process is itself ludicrously easy (and painless), and also a fun and exciting day out. I can’t see a reason not to sign up.

(You get to feel a bit pleased with yourself by getting involved too, but see above for some obvious caveats. Basically, be classier than me.)

“DEPARTMENT OF HEALTH HATES WOMEN”

I recently came across the following news article, from the excellent and reputable Daily Mirror
NICE condemn breast cancer women to death while fatties jump the queue for gastric bands

This is columnist Carole Malone’s response to the news that the NHS will not fund the new anti-cancer drug Kadycla due to its cost. She attacks the organisation responsible for recommending treatments for NHS funding (NICE), who cleverly hide their misogynistic evil behind a seemingly friendly but inaccurate acronym – the letters actually stand for “National Institute for Health and Care Excellence”, so NIfHaCE, the liars.

Since the UK has infinite resources the NHS is never ever strained, and so any and all treatments can easily be purchased and provided to patients. It is therefore clear that NICE exists only to arbitrarily deny access to treatments and thereby condemn certain groups of patients to death – chiefly women.

To be clear, I don’t actually think any of this. My thoughts are, as they always are, complicated and confused and difficult to summarise but I will at least commit to disclosing that I think Carole Malone is a moron.  Cancer, and the commonest is breast cancer, is clearly an extremely an important and emotive topic and so newspapers should especially careful to avoid publishing such irresponsible and misleading columns.

NICE is actually a pretty good idea. Clearly any decision, and particularly those involving healthcare, should first consider the balance of costs and benefits before the best option is chosen. NICE is organisation that exists to do just that: they review all the available data before publishing guidance on the best practice on managing specific conditions, and the cost-effectiveness of various new or existing medicines and treatments.

Kadcyla (or trastuzumab emtansine) is a clever new drug that targets HER2 positive breast cancer cells, using the existing drug herceptin to deliver emtansine a (cytotoxic chemotherapy) directly to diseased cells. It’s used for aggressive, metastatic HER2+ve disease and can extend a patient’s survival for a few months, in some cases. A few months may not be much but of course it’s literally a world of difference when compared with the alternative.

Unfortunately drug development is extremely expensive. Companies must recoup their costs and make some profit before the patent protection expires – usually 20yrs in the UK. This must of course be collected (usually indirectly) from those patients who would qualify for treatment and use the drug – so rarer diseases are more expensive per patient. The Swiss manufacturer, Roche, has set the price at £6,000 per month and so £90,000 for 15 months treatment. This corresponds to approximately £165,000 per year of life obtained, and far in excess of NICE limitations, where the normal cut off is £20,000-30,000 per year, but sometimes up to £50,000 for exceptional cases and end-of-life treatments. In addition, it is hard to assess the quality of the life that is extended but blighted with the effects of the disease and the side effects of the treatment.

Crucially, the money that is not spent on kadcyla is spent on treatments that meets NICE requirements and will have a (much) larger benefit to other patients elsewhere. This is obviously pretty bleak for the patients with horrendous, rare, difficult to treat, end stage disease, and it’s absolutely not my intention to belittle or diminish their situation, but surely there’s no sense in diverting funding from areas where more can be done?

Or maybe, like NICE, I just really, really, hate women with cancer.

Ebola for Dummies

I don't want to brag, but I have access to the internet pretty much 100% of the time nowadays, and so very occasionally I glance at some of the news websites. There seems to be quite a lot of column inches dedicated to the ongoing West African Ebola Epidemic, and perhaps rightly so since if the news articles are to be believed this virus is proving to be a fairly destructive problem. Fear-mongers hypothesise that this is the beginning of the apocalypse. I’ve seen Outbreak and Contagion, so maybe they’ve got a point? Embarrassingly for a so-called medical student I knew almost nothing about this important disease, so I’ve now spent a few hours reading about it using my aforementioned internet access. And because I haven’t written anything on this blog since my elective I’ll write down what I found out here.

Ebola haemorrhagic fever is caused by the Ebola virus (EBOV) first isolated in 1976: usually an 800nm tubular protein mesh covered in a lipid bilayer and containing a single strand of RNA which codes for 288 amino acids as eight proteins. It is impressive that such a tiny and relatively simple bag of molecules is responsible for the miserable disease – as of the beginning of august over 1600 cases and 887 deaths have been reported to the WHO.

Electron micrograph of an ebola virion

Ebola haemorrhagic fever is also known as Ebola Virus Disease (EVD) and is one of the most virulent viral diseases in the world. It is named for the Ebola river in the Democratic republic of Congo (then Zaire), where the first cases were recorded. The virus is first acquired upon contact with bodily fluids from an infected animal, usually from handling infected wild animal carcasses – including primates hunted for bushmeat. Bats are thought to be the reservoir species for the ebola virus, from which apes and other wild and domestic animals can become infected – the virus is a zoonosis.

A CDC graphic from http://www.cdc.gov/vhf/ebola/resources/virus-ecology.html

Like seemingly every other disease in the world, the disease first presents as a “flu-like” stage due to the inflammatory reaction to viral particles and cell debris . These general symptoms appear about a week after contraction of the virus, and the early fever mimics other more common tropical fevers such as malaria or dengue. However, EVD becomes more severe as the virus produces a glycoprotein that binds to the interior surface of blood vessels and significant bleeding – seen as haematemesis (vomiting blood), petechiae and purpura (bleeding into the skin), as well as bleeding from elsewhere such as the eyes, nose, gums, GI tract etc.

The mortality rate can be as high as 90% as organs fail, though I imagine this number is highly variable depending on the strain of the pathogen, accuracy of diagnosis and promptness and effectiveness of (supportive) treatment. There is no specific treatment and no available vaccine but survival is increased with early interventions such as balancing fluids, electrolytes and coagulation and treating secondary infections.

Now

Since March 2014 in Guinea, West Africa, there has been an ongoing epidemic of this disease – and the most severe outbreak ever recorded, caused by the most dangerous strain, Zaire ebolavirus. The strain has since spread to neighbouring Sierra Leone and Liberia. As of today, August 4th, here have been no cases outside of Africa, though (worryingly?) two infected Americans have been flown to the states for treatment.

WHO epidemic figures up to August 1st

So far, the total number of deaths from the disease is still low, and whilst each case is individually horrific the overall disease burden is insignificant when compared with influenza or TB or HIV or malaria or any one of hundreds of others. Further, compared to other pandemic scares like SARS or bird flu, after five months the virus is fortunately yet to deliver the global chaos that some have predicted.

Home again

After Peponi I began the very long and tiring journey back to England. Getting back to Dar es Salaam involved a broken down daladala and an eleven hour bus journey. My flight had a stop-over in Doha, a glitzy and tacky shrine to extravagance and materialism; amongst dozens of exclusive luxury boutiques there were four supercars that were being raffled in the departure lounge, a vulgar contrast to humble Tanzania. In my sleep-deprived state I first got on the wrong train from Heathrow, and when I found the right one I had to buy a new ticket since my railcard was amongst my stolen possessions, but eventually I made it back home.

Here are a few of the great number of things I will miss about Africa:

1. I love it when young black men call me "brother". It makes me feel cool and accepted even though they are almost always trying to sell me something.

2. I love the culture of politeness. It is customary to say pole, roughly "my sympathies", in greeting a person who is ill or doing any kind of work, and to greet elders with shikamoo, roughly "I show my respect". I'm always startled when kids say it to me.

3. I love the optimism of Tanzanian people. It's considered bad manners to be negative, such that when asking how someone is (Habari...) you are basically expecting to be answered with "good" (mzuri) or similar. Even when a patient is terribly ill or dying they are unlikely to admit it and will usually report that they are "not too bad" when asked.

4. To an extent, I like the pace of life in Tanzania. There is literally never ever a hurry, and I am very surprised when things occur even vaguely on time. Even in truly horrendous traffic there is no stress or time-pressure, every driver seems in good spirits and reassuringly utters polepole (slowly slowly) to excuse any tardiness.

5. Whilst I'm not a huge fan of Tanzanian food I do like the drink. Stoney Tangawizi (unfortunately coca cola company) is a delicious ginger beer, kilimanjaro coffee is awesome and Zanzibar spiced tea is fantastically exotic. I've also developed a taste/dependency on some of the beers especially Serengeti and Tusker lagers, and I'm a fan of a generous glass of konyagi with ice and lemon, a fragrant mystery spirit.

6. I like the genuine enthusiasm some of the children show when meeting a mzungu (white person), some of the more outgoing younger children in more rural areas are likely to frantically wave, shout, sing and dance when we are spotted and it makes me feel extremely important.

7. I really like the friendliness of Tanzanians including the absurdly long greeting rallies undertaken when greeting even complete strangers, the openers and corresponding responses confusingly change depending on who is talking. It's a challenging but warm ritual.

It's nice to be home but I'll be back to Africa soon, I hope.

The North Coast

Tanga, Peponi, Pangani

I decided to take another bus to spend my last few days in Africa with Laura and Rhi at the coast. The bus took me from morogoro to Tanga where I hailed a Bajaj to take me the 30km down the coast to where the girls were staying. The road was like driving on cobblestones and the drive was impossibly slow and uncomfortable, after an hour we had managed to get just halfway. I was a little surprised when my driver abruptly stopped the vehicle and arranged for me to balance with my two rucksacks on the back of an adolescent’s motorbike to complete the journey. Whilst much quicker and more comfortable I spent the entire ride grimacing as I clung onto my bag and my driver, but managed to avoid falling off long enough to get to peponi (paradise) beach resort.

It certainly was a paradise, especially relative to some of the previous places I’d stayed. I’d become a little weary of staying in the worst hotels I could find and so was happy to pay a little more to share Laura and Rhi’s beach hut. It had a hammock looking out onto the Indian ocean and there was even reliable hot running water.

The following day we rented bikes, all rusting clunking single-speed machines and, initially at least, a joy to ride. We applied a generous layer of suncream and began to slowly make our way towards Pangani, 18km to the South along the coastal road. Amazingly I managed to transform both my T shirt and hat into a darker colour over the course of the trip using my powers of perspiration. Eventually the potholes took their toll on our comfort, my saddle broke as we reached our destination. We stopped for lunch at a deserted hotel where I sampled the mysterious “spaghetti with egg”, literally a spaghetti omelette about 2 inches thick, excellent carb-loading for the trip back.

We cycled around the town and visited some of the grisly decaying buildings used when Pangani was a slaving port. There are numerous horrific stories form this period, for example it is said that slaves were buried alive in order to strengthen the foundations of some of the buildings. Other buildings where slaves were imprisoned or executed have deliberately been left to ruin and are overgrown with trees whose majestic roots are hastening their downfall. I suppose that rather than preserve these buildings or commemorate the events with plaques the local people would prefer to let these memory be erased – stories from the slave era are still common as they have been passed down the generations.

The customs house, a site of previous slave imprisonment.
 It's now used to store coconuts and other products.

I tried to spend my last night at Peponi in the gently rocking hammock but even though I had carefully covered as much exposed skin as possible I was savaged by mosquitoes on my face, hands and the small area of briefly exposed skin on my lower back. I took refuge for a few hours in the hut but returned to the hammock early in the morning to watch the sunrise.