Numbers and Hepatitis C
I know a good number of you who have been diagnosed with chronic hepatitis c know something about the constant and persistent parade of numbers. Oh yes the numbers! It starts at the very beginning and continues with things like genotype, viral load, ALT, AST, fibrosis staging, and on and on.
Some numbers are more important than others, and in my work in community I am exposed to a bushel of epidemiological data, which is even more numbers.
Don’t get me wrong; I am a bit of a numbers guy myself. My career in life has been almost entirely numbers oriented. My musical avocation is based on numbers at its very core. Numbers are important.
Deciphering the numbers while dealing with hepatitis c can be a daunting task for even the number-savvy person.
There is help in the form of support groups online with people who can help with translation, and if you choose-as I always recommend- to get copies of your lab reports you can find many places online where these tests are tackled in an easy to understand way.
In my generation, when we were young, some of us were concerned about a future where we would be thought of as a number not a person. This has come true in some ways we never could have predicted, but in general I don’t believe it has gotten to such an alarming place just yet.
Maybe it never will?
In my work with HCV I hear and read a lot of numbers that refer to numbers of people living with HCV, what their specific population is, timelines and prevalence in certain groups and countries-not to forget the global numbers.
It is useful in the work of developing and implementing strategies and plans of action, and these numbers are what are used in the business of HCV. Pharma uses them, non-profit organizations use them, advocates use them to make their arguments more impactful and prove our requests for more resources to be spent or allocated for HCV related issues.
Numbers can be used to paint a picture.
The biggest use of numbers and hepatitis c in recent memory speaks about cure rates and the high cost of new therapies. The popular media jumped all over it when they got their hands on the story. The cost remains controversial still. Did they really want to champion the cause about access to care? No payers were ever likely to pay the outrageous prices that were reported, but that story was never going to receive attention-it was far too dull…I am guessing. The savings over the long run in treating people sooner rather than later was conspicuous in it’s absence in most reports. The information about what these new drugs really cost to payers is not part of any public record that I am aware of, so I certainly am not sure of the real cost to payers. I have heard estimates, and they vary from place to place as one could expect. This is just one example of how numbers can be used and manipulated to tell a story with an agenda attached.
I am not going to delve any further into the debate surrounding the high price of treatment for HCV. I advocate for and want better access and equitable treatment for all.
Everyone has an agenda, whether an altruistic one or not, we all have one. An agenda is typically a list of items and here we go with more numbers. It is like we are surrounded by numbers, and sometimes they number in the millions.
The fact is that numbers are not going away, and who says they should-surely not me!
I hope you have good numbers, and the most important number in hepatitis c is undetectable, as seen as zip, nada, and zilch, not detectable. Cured is a word I like, and this is my wish for us all, those of us who have lived with hepatitis c. Count me as one voice in favor of no detection at all of the virus called C, not a number at all.
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