Does the ‘Quality Adjusted Life Year’ Measure Leave Behind Rare Disease Patients?

According to a story from Salon, the Quality Adjusted Life Year (QALY) is a statistical measure that is used in order to calculate the value of a certain medication. First appearing in the late 1960s, QALY is a popular method around the world for determining how much a drug is actually worth. While its use has become prevalent, some rare disease patients say that it doesn’t depict their situations adequately.

How Much are Drugs Really Worth?

In the math of QALY, a year of flawless health is worth one year. Death equals zero, so any health state other than these is somewhere in between. The US has been more hesitant than many other developed countries to seriously incorporate the measure into the health system, but since 2014 the health industry has been taking notice of calculations using it. Such ratings have mostly been the work of an organization called the Institute for Clinical and Economic Review (ICER). Sometimes, health insurers use the work of ICER in order to determine what drugs are worthy of coverage, and rare disease therapies often don’t score well. 

This is in large part because rare disease drugs are among the most expensive on the market. However, many rare disease patients don’t seem to feel that the benefits they receive from a drug can or should be quantified in the first place. 

Can We Put a Price on Living?

Jenn McNary’s sons Austin and Max were both born with the rare disease Duchenne muscular dystrophy. Without treatment, this disorder leads to a rapid decline in functioning and an early death. However, the two have been successfully treated to the degree that they are able to live in their own apartment with the help of a single assistant. While they are relegated to wheelchairs, they would have mostly likely have already been dead without the treatment that they found. There is no doubt that their treatments are very expensive, but according to QALY, the drug is also not worthy of coverage because it isn’t keeping them in ‘perfect health,’ even though it is saving their lives.

Disability rights activist Ari Ne’eman says that the belief that different health conditions can be adequately compared to one another using a single formula is inaccurate. Ari says that comparing drugs for cancer or cystic fibrosis isn’t useful because the drugs have different impacts. The impact of the therapies are taken out of context. In essence, it’s an attempt to turn quality into quantity.

Many rare disease patients may only see incremental benefit from a treatment, but often the alternative is unthinkable.


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