A bill allowing patients with serious illnesses to try unproven experimental treatments has been approved by Congress and is now on its way for signature by a supportive President.
For the sake of this discussion, let’s put aside some of the safety and ethical concerns. On the surface, everything may seem palatable from a plan sponsor perspective. But that’s until you start pondering some of the potential issues lurking beneath the surface.
The “Right to Try” bill doesn’t specifically require plans to pay for experimental care, but things get a little murky from there. Who pays for hope and who pays for harm?
While the bill grants a pharmaceutical company the right to selectively supply or deny medication for these patients, it creates an incentive to do so by protecting them and the provider from any potential patient litigation that may result. The bill also protects pharmaceutical companies from negative outcomes being used against the drugs when seeking FDA approvals, unless egregious circumstances are found.
Even if your plan excludes coverage for the off-label use of prescription drugs, will it end up paying for the treatment of serious side-effects and complications? Is there really any way to distinguish cause and effect at end of life? What was the result of the natural disease progression, and what was the result of an adverse reaction to the experimental medication?
This move reminds us of a statement from Dr. Atul Gawande in his book, Being Mortal:
“We’ve created a multi trillion-dollar edifice for dispensing the medical equivalent of lottery tickets – and have only the rudiments of a system to prepare patients for the near certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”
Maybe that’s why most medical organizations opposed this legislation.