Rare Disease Drug Costs Evaluated by Organization’s Interpretation of Your Quality of Life

In the UK, a think tank determines access to rare disease drugs based on their perception of an individual’s quality of life. That idea has also been developed in the United States, but by a private nonprofit without too much influence. That is, until August 2018 when CVS announced that they would allow insurers using Caremark to not cover the cost of drugs which didn’t have this organization’s approval.

To be clear, the board of this organization is predominately composed of individuals associated with insurance companies, not patient advocates.

The Organization

So who exactly is this organization? It’s called ICER, based on the UK organization NICE. Many believe it’s an ironic acronym.

ICER stands for the Institute for Clinical and Economic Review. NICE refers to the UK’s National Institute for Health and Care Excellence. These organizations look at the average number of patients who a particular drug works for and from that number, determine at what cost the drug should be sold. They also determine whether or not insurance companies should cover it. They decide on this price using, what they call a, “Quality of Life Years” (QALY) evaluation. Specifically, they’ve created a threshold of 100,000 dollars per QALY. For example-

“A think-tank’s opinions about the “quality of life value” of a new and expensive biologic to treat rheumatoid arthritis will determine whether a sick woman who would benefit from this new drug treatment will be covered by her insurance.”

Imagine instead if we focused on the individual patients, ensuring that people have access to the drugs that work for them. Yes, a certain drug may only work for a small population of patients. But it is so beyond unethical to say that those people do not deserve treatment because they are in the minority. If we have developed a treatment that works, there’s absolutely no reason why that treatment shouldn’t be available to the patients who could benefit from it.

Patient advocates have argued that they wouldn’t be that upset if this think tank were just part of the process. But, the announcement from CVS/Caremark has raised a lot of concern.

Supporters of ICER

In addition to having a review board full of insurance company employees, ICER receives funding from many major insurers. These include Blue Cross, Kaiser, Aetna, UnitedHealth, and Anthem to name a few.

They’ve also received 19 million from the Laura and John Arnold Foundation, allowing them to extend their review to all newly-approved drugs.

Supporters argue that organizations like this can help control and even decrease drug costs. However, drug manufacturers claim they’re just keeping the savings for themselves. Either way, the problem of patients not receiving the drugs they need remains the same.

The Argument 

The people behind ICER believe that new expensive medicines, developed for a small population of people (aka those with rare conditions) could destroy our economy. But the thing is, if we can get patients more effective medications sooner, we’re reducing costs down the line by decreasing the amount of hospital stays/treatments/etc. needed in the future. We may even be able to prevent a condition or side effect which would eliminate the need of treatment all together.

The moral of the story is, there’s a way we can support cost-benefit analysis while still keeping in mind the people behind it all – the patients. Ultimately, they should always be our first priority.

You can read more about this organization and its theory behind drug development and manufacturing here.


Share this post

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

© Copyright Patient Worthy

Close Menu