You know those heart-tugging ads you see on TV from social welfare groups ranging from children being treated for cancer, to starving children in Africa, to abused animals? I’ll bet many of you have drunk-dialled a late night donation in tears, only to regret it later.
This is the tactic being employed by the Goldwater Institute to pass Proposition 303, the so-called “Terminal Patients Right to Try” measure on the ballot. The Goldwater Institute uses spokespersons who are either terminal patients or family members who are desperate for any “last chance” of survival, including using untested drugs often only available in foreign clinics. They are hoping for a miracle cure that defies their diagnosis of “terminal.”
The media, confronted by these sympathetic spokespersons, are listening to their hearts and not their minds in evaluating what this proposition actually does, and are failing to properly inform the voting public.
Stephanie Innes of the Arizona Daily Star had the most informative reporting on this measure the other day. Prop. 303 would give terminally ill patients access to unapproved drugs:
Giving terminally ill patients access to not-yet-approved drugs as a last resort seems compassionate, but critics say an Arizona referendum on the issue is not as black and white as it sounds.
Detractors say Arizona Proposition 303, known as the “Terminal Patient’s Right to Try” referendum, could give patients false hope because the chances of doing harm with unapproved pharmaceuticals far exceeds any potential benefit.
Additionally, critics say such a law could open the doors for greedy quacks to prey on desperate patients with expensive medications that don’t work.
And while many opponents agree the federal drug approval process can be frustratingly slow, they also say any state attempt to circumvent federal law is ill-advised.
* * *
The proposition, placed on the Nov. 4 ballot by the Legislature, leaves it up to individual insurance companies as to whether they cover investigational drugs, Riches said.
“Our strong belief is that the right to try to save one’s own life is a fundamental constitutional right,” Victor Riches, vice president of the Goldwater Institute, said. “It’s a very simple proposal and it’s just about giving these terminally ill patients the ability to save their own lives.”
You should stop to appreciate the irony here. The lawyers from the Goldwater Institute are currently in court trying to kill Governor Jan Brewer’s Medicaid (AHCCCS) expansion plan that extended life saving health care coverage to hundreds of thousands of poor Arizonans. The Goldwater institute, on behalf of Tea-Publican legislators in the Arizona legislature, are saying to poor Arizonans, “perhaps you should die and decrease the surplus population.”
For those few Arizonans who have the means to afford the cost of travel and untested experimental drugs or treatments in a desperate attempt to save their life, well, they have a “fundamental constitutional right” to do so. If the Goldwater Institute truly believed that health care is a “fundamental constitutional right” they would be fighting for universal health care for all. The Goldwater Institute has contemptuously dismissed this view in the past. This is a red flag that something else is motivating this ballot measure.
Patient’s Right to Try laws are often [misleadingly] known as “Compassionate Access,” or “Dallas Buyers Club” laws — a reference to a group established by Dallas resident Ron Woodroof in the 1980s for purchasing unapproved treatments for HIV/AIDS, which became the subject of the 2013 Oscar-winning film.
“There is no scientific data whatsoever that the cocktails they were giving out at the Dallas Buyers Club were helping anybody,” said Joan Koerber-Walker, president and CEO of the Arizona Bioindustry Association. “To tell patients who are terminally ill that they have a right to try and not give them a pathway to succeed is wrong.”
The Arizona Bioindustry Association is not taking an official position, but Koerber-Walker says Prop. 303 “grossly oversimplifies” a very complicated issue.
“Unfortunately under Prop. 303 there are no provisions for oversight, nothing to make sure people aren’t taking advantage of patients,” Koerber-Walker said.
She says there are existing mechanisms for terminal patients that are far more well thought-out, including an accelerated drug-approval process and an existing expanded access program offered by the FDA through an application process, though Prop. 303 supporters say that program is not doing enough for patients, and there’s too much red tape.
The Arizona Bioindustry Association does have a very good explainer on Prop. 303 that I highly recommend you read before voting with your heart and not your mind on this measure. Understanding Prop 303 – The Right to Try | Arizona Bioindustry Asscoation.
Dr. David Gorski, a surgical oncologist based in Detroit, has spoken up against Right to Try proposals nationwide, including Prop. 303 in Arizona. Gorski, a surgery professor at Wayne State University and managing editor of the “Science-based Medicine” blog, says most investigational drugs that make it past Phase One trials still end up failing.
Gorski writes he finds it hard to be charitable with “right-to-try” supporters since they appear to be mostly ideologically motivated by a dislike of federal regulation, or motivated by a support for quack medicine.
“Never forget that the reason the laws we have exist is to protect the public against drugs that don’t work or are too toxic and, just as importantly, from companies that would sell such drugs with no evidence of efficacy or safety,” Gorski writes.
Dr. David Gorski calls right-to-try laws “perniciously popular legislation that provides lots of false hope and virtually no benefit to terminally ill patients.” Check out this post from his Science-Based Medciine Blog, “Right to try” laws and Dallas Buyers’ Club: Great movie, terrible for patients and terrible policy, in which he analyzes “right to try” measures in Colorado and Arizona.
Vote No on Prop. 303.