When we get hit with a diagnoses, we get to make choices.
How do we decide what to try?
We can choose to take the drugs our doctor prescribes. We can book an appointment with an alternative health care practitioner, to see what they suggest. Or jump down the rabbit hole of the internet and do our own research.
This post considers an approach to making decisions about treatment options that's used in economics. It's a method that measures both the costs and benefits of each option, and it can be a helpful way for individuals to think through the choices they are faced with when it comes to treatment, too.
It's called 'cost-utility analysis'.
Costs… and benefits
There are costs and (hopefully) benefits associated with different approaches to treatment.
Sometimes the costs include more than just money. Some approaches can use up other resources, like our time, and we can count these as costs.
Illnesses also have costs. Direct financial costs, but also other costs that we can attempt to measure, like suffering and the time spent by other people helping to take care of us.
We have experienced all of these kinds of costs during the time that Matthew has lived with chronic illness. So we know what they mean. In human terms.
We also experienced the cost of various types of treatment. Financial and otherwise.
In economics: you rule!
‘Consumer Sovereignty’, is a basic principle in economics.
It refers to the right of each individual to decide which product (or in the case of health care, which treatment) is the most desirable.
Basically it means that people can decide for themselves what to buy. They should be allowed to allocate their resources in whatever way will bring the most benefit to them.
A cost-utility analysis can provide information to support the sovereignty of consumers. Or it could... if it was conducted in an unbiased way.
Currently all of this type of research is funded by pharmaceutical companies. In fact, a 2015 meta-analysis found that economic evaluations of treatments for Multiple Sclerosis (MS) were not only funded by the companies that manufactured the drugs being evaluated, but were co-written by employees of these companies.
A strategy for measuring cost & benefit
A cost-utility analysis determines which treatments, among competing options, are the most effective (and the most cost-effective).
To outline how we might use this this approach, let's consider MS. Why not?
Multiple Sclerosis: what is it?
MS is an autoimmune disease that affects the brain. It is frequently disabling.
There are three forms of MS.
Most of the time, MS progresses from the ‘relapsing-remitting’ form, in which symptoms come and go, to ‘secondary progressive’, when deterioration becomes continuous. A third presentation, called ‘primary progressive’, affects about 20% of people, and for these individuals the progressive form of the disease is present from the beginning.
MS is nasty. It's definitely worth our time and attention to figure out what treatment options will result in the most benefit for the lowest cost.
The cost of Multiple Sclerosis
The disabling nature of MS, combined with diagnosis that typically occurs in the 30s-50s, results in substantial costs, not just in terms of human suffering, but also through ‘lost productivity’ or inability to work.
A 2018 analysis of the societal costs of MS from Ireland identified a total annual cost per individual of:
- €34, 942 for people with mild MS;
- €57,857 for individuals with moderate MS; and
- €100,554 for individuals with severe MS.
Measuring disability: the Expanded Disability Status Scale
Individuals with MS are often grouped according to the severity of their symptoms using a measurement tool called the Expanded Disability Status Scale (EDSS).
EDSS scores are often grouped into three categories, representing overall disease severity:
- EDSS 0-3 is considered a mild form of MS;
- EDSS 4-6.5 is considered moderate; and
- EDSS 7-9 is considered a severe form of the disease.
The way that economists use the word 'utility' is the opposite of the word 'futility'.
In economics, if one state is preferred over another, it is considered to offer ‘greater utility’ (or more benefit).
When considering the 'utility' of MS treatment, usually a delay in disease progression is what is measured. For example, if a treatment postpones development from moderate to severe MS for a given period of time, it would be said to offer 'utility'.
Measuring quality of life
‘Quality-Adjusted Life Years’ (QALYs) are used to measure the combination of health-related quality of life and quantity of life.
I explain how QALYs work in this post.
Basically the idea is that one year with no illness is not adjusted. It equals one QALY. One year spent in a state of illness is worth less than one QALY. How much less depends on the degree of disability.
A cost-utility analysis for MS would calculate the value of competing treatments through determining the cost per QALY gained (measured in increased utility using EDSS scores) for each treatment option.
In other words, it attempts to determine what each treatment option costs in order to buy an additional QALY.
The cheapest way to get the most utility is (of course) the most sensible choice.
Let's do it!
We could compare the Wahls Protocol with a drug-based treatment, like Interferon, and see what improvements in terms of QALYs we could expect from each.
Then we could compare the costs of each, to determine what an increase in QALY would cost us, using each treatment option.
Let's look at that in a little more detail...
Doing the math
A cost-utility analysis gives us information about what utility (utility is the opposite of futility, remember?) we can expect to gain from each treatment option that we are considering, and how much that increase in utility would cost.
To make that calculation, we would:
- Determine what the increase in utility might be for each treatment option over time (let’s say 10 years, divided into increments of 3 months). In each 3 month period we’d measure the quality of life we could expect to have using each treatment option, using quality-adjusted-life years (QALYs). We’d get this information from scientific studies about the health benefits of the treatments in question.
- Next, we’d determine how much each treatment would cost per year. We'd divide that by four and drop that number in beside the expected utility for each of these 3 month periods.
- After that we'd be able to calculate an overall cost per quality-adjusted-life year for each treatment option.
Of course we would. If we worked together, took lots of breaks to make soup and take naps, and double-checked each other’s math.
Then we'd have useful information to help us choose the treatment option that would give us the most utility for the lowest cost.
I think I already know which one that would be.
I have a bias and I'd like to disclose it right now. I think that the Wahls Protocol will come out of this analysis with much higher utility and lower cost.
Importantly, it carries almost no risk, something that isn't even considered in a cost-utility analysis.
So... if I'm biased, how am I any different than a pharmaceutical company conducting this research? Simple: I'm not making any money by doing it.
All I'm interested in is giving people access to information that they can use to make their own decisions about what treatment options they want to try.
Though I don't think of you as a consumer (you'll always be a human to to me), I do support your sovereignty when it comes to your health.
Autoimmune Healing Intensive
Figure out what approaches to treatment will work for you. The Autoimmune Healing Intensive was designed by Matthew and I to help you do exactly that.
The next session starts in September but no need to wait: you get the Autoimmune Healing n=1 Workbook Kit immediately, so you can get started now.