site

files for beauhilton.com
git clone https://git.beauhilton.com/site.git
Log | Files | Refs

abstracts.md (2691B)


      1 # Abstracts
      2 
      3 <time id="post-date">1978-01-01</time>
      4 
      5 <p id="post-excerpt">
      6 Text of the post-excerpt goes here.
      7 </p>
      8 
      9 ## Heading
     10 
     11 >The assurance of a complete and irrevocable break 
     12 >with everything which beclouds the past 
     13 >lies in a true and courageous comprehension 
     14 >of its full consequences.
     15 >
     16 > &mdash; Alexander Tvardovsky, editor of *Novy Mir*. 
     17 Foreward to *One Day in the Life of Ivan Denisovich* by Alexander Solzhenitsyn. 1963.
     18 
     19 On the night of December 2nd, 2018, I was too angry to sleep.
     20 I'm not easy to ruffle 
     21 (one of my cofellows dubbed me "Beau 'Cool-as-a-Cucumber' Hilton" - 
     22 I have many faults, but easy ruffleability is not among them), 
     23 and I have narcolepsy,
     24 so I can count the number of nights I've spent both angry and sleepless on a single finger.
     25 
     26 That afternoon I was reflecting on the plenary session
     27 given by Dr Leon Tshilolo
     28 at the American Society of Hematology 60th Annual Meeting,
     29 where he presented data on the use of hydroxyurea
     30 in sickle cell disease
     31 in Africa.
     32 It was a beautiful talk,
     33 a major advance in the field of hematology,
     34 and a wakeup call.
     35 
     36 Hydroxyurea is an inexpensive drug that makes a huge difference
     37 for many folks with sickle cell disease,
     38 and has been used for decades.
     39 The majority of people with sickle cell disease live in Sub-Saharan Africa.
     40 (The paper that accompanied Dr Tshilolo's talk, 
     41 which was published in The New England Journal of Medicine 
     42 roughly one month later,
     43 began with the characteristically understated:
     44 "Hydroxyurea is an effective treatment for sickle cell anemia, 
     45 but few studies have been conducted in sub-Saharan Africa, 
     46 where the burden is greatest.")
     47 This study deserved to be the plenary session.
     48 Unlike ever-more-expensive targeted therapies 
     49 that benefit a few with rare diseases 
     50 (I do not disparage these drugs, far from it,
     51 but the contrast is poignant),
     52 this is a cheap therapy that can benefit millions.
     53 Recognizing the incredible scientific, 
     54 political, and financial maneuvering 
     55 that led to this study and its positive outcomes, 
     56 as the day went on my initial elation
     57 turned to depression,
     58 then to anger. 
     59 That this study happened at all is a triumph,
     60 that it took this long to happen is a tragedy.
     61 
     62 So I sat in my hotel room,
     63 furious,
     64 imagining,
     65 lost.
     66 
     67 I was trained as an anthropologist
     68 and activist
     69 at the same time I was trained as a scientist,
     70 and here was a disturbing revelation
     71 that seemed to fit squarely in my Venn Diagram,
     72 but what I could do about it,
     73 how I could make a difference,
     74 how I could even know where to start,
     75 escaped me.
     76 Eventually the sun surprised me,
     77 and the next day took me
     78 (thankfully, 
     79 there were some less-electrifying talks 
     80 to sleep through later that day).
     81 
     82