OUR VIEW: Offering options to terminally ill patients [Bristol Press]

April 20, 2015

Editorial as it appeared in the Bristol Press

It’s being called “the right to try” and legislatures across the country are wrestling with the issue: Should terminally ill patients have access to drugs not approved for general use.

The Connecticut General Assembly’s Judiciary Committee will take up the measure today, now that a bill has cleared the Public Health Committee on a unanimous, bipartisan vote.

The legislation applies to investigational drugs and devices that have completed the first phase of a federal Food and Drug Administration-approved clinical trial and are still part of the clinical trial. Typically, such tests can take up to a decade — and some patients just can’t wait for the outcome.

Senate President Martin Looney, D-New Haven, said recent federal court decisions have determined terminally ill patients do not have the right to try experimental treatments. As a result, a number of states have since passed “right to try” laws to give patients access to the therapies. Under Connecticut’s proposal, patients who have explored all other options would be permitted to use drugs that are currently undergoing clinical trials.

According to the National Conference of State Legislatures, at least 36 states and the District of Columbia have, in the past 15 months, examined or considered such bills — with positive action in seven states in March alone.

Looney said the Connecticut bill contains adequate safeguards to protect patients. It requires patients to give written informed consent and obtain a recommendation from the doctor treating them. But, in addition to assuming the risk, they would also have to absorb the cost, even if they have health insurance. As a result, some are concerned that providing access to experimental drugs would favor high-income patients who can afford out-of-pocket costs.

It’s a tricky issue but we agree with State Sen. Kevin Witkos, one of the bill’s co-sponsors.

He said, “While some may argue that access to experimental treatments poses a significant risk of harm to the patient, it would seem that this danger is far less than that posed by certain death due to the underlying illness.”

Rep. Noreen Kokoruda, R-Madison summed up the issue: “What this bill does is, it offers options.”