The best way to measure the value of medical progress is to find out what people fighting serious chronic illnesses do as they get stronger and healthier.
When two people going on different journeys in overcoming potentially life threatening diseases and wind up on a common mission -- to battle against health care policies that deny well-being to others -- you know that value cannot be defined simply as what saves health insurers money.
Don Wright was diagnosed with multiple myeloma in 2003 just ran his 100th marathon. He has been taking one pill a day since then to keep the disease in check and now, with the latest addition of another medicine, he is making his centennial run without missing a stride. When he not running or practicing law, Don provides other people with cancer support and guidance.
Dani Yevsa was diagnosed with psoriatic arthritis. Denied newer medicines by her insurer, she had to try older drugs first. Unable to move, let alone work, her husband quite his job to care for their four children. To get the care and medicine they needed to stay alive, went on welfare. Medicaid where she was forced to fail on three treatments that made her sicker, not better.
She is finally on medications her doctor prescribed.
Both Don and Dani took different approaches to the same path. They are making thousands of patients around America about an insurance funded organization called The Institute for Clinical and Economic Review (ICER). ICER states it is “a trustworthy, independent source to help assess how valuable a new drug really is.” And it claims its goal is to make innovative drugs affordable to patients and insurers.
Except that ICER has decided Don and Dani should only get the older drugs that would have left him disabled or dead.
ICER is deciding for Don, Dani and millions of other patients how much their lives are worth, not the other way around. And ICER has decided that the benefits new drugs provide healthy people are MORE valuable than life-years gained by those who are chronically ill or disabled. Similarly, Dani and Don are worth less according to ICER’s economic assumptions, because they are less likely to get as much benefit from medicines than people with more treatable conditions. And finally, ICER assumes that future benefits are less valuable to Dani and Don than to others.
So it’s no surprise that ICER concludes every new medicine isn’t worth paying for unless they are deeply discounted off retail price and save money by reducing the use of other medical services.
ICER responds that it’s trying to find prices that patients can afford first and foremost. But the deeper discounts they recommend don't make medicines affordable or free up cash. In the real world of how PBMs and insurers price drugs, the savings go to PBMs and insurers, not patients. At the same time, insures overcharge customers for prescription drugs by making them pay up to 50 percent of the retail price of the drug. ICER has issued over a dozen studies and never once wrote or spoke about passing these savings to the patients.
Additionally, ICER suggests that to save even more money, insurers limit the number of people who have access to these new life extending medicines. ICER believes that spending more than $900 million a year on a new medicine should set off alarm bells that strong action – capping how many people can get the novel treatments – must be taken. For psoriasis, ICER concludes that health plans can only cover about 35 percent of the 183000 people diagnosed with psoriasis could be treated with before potential budget impact reaches $904 million. For multiple myeloma, ICER caps access at 25 percent.
That means they before they can get these new drugs, if ever, they have to take older drugs and get sicker. That means, over 5 years, ICER would deny 44000 people with myeloma a second and third chance at life and cost 88000 life years. Over the same time period, given the mortality rate associated with older psoriasis drugs, about 52000 life years would be lost. Dead patients cost nothing.
Don and Dani and others already pay thousands in premiums and taxes only to be denied new medicines based on the kind of rationalizations ICER produces. They have ICER in their sights because the more its recommendations spread, the more money health plans make at the expense of people they often impoverish when they are most vulnerable.
ICER defines value as what’s most profitable for PBMs and health plans. It devalues what makes medical progress so important: When you’re seriously sick, it’s hard to plan or hope. Our dreams our diminished and deferred. We are forced to forsake our full potential.
ICER claims such benefits can’t be counted because they can’t be quantified. I think we can easily measure the value of medical progress: Value is what Don has achieved, what Dani has fought for and the path they are forging for everyone who is or may be forced to fight disease