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Fighting for life: AZ authorities predict passage of ‘right to try’ measure

RightToTryVoters are likely to approve overwhelmingly a ballot measure allowing dying patients and drug companies to bypass the federal government to use unproven drugs, say lawmakers, a consultant and a conservative think tank.

They say Proposition 303 tugs so strongly at the sympathy of the public that any organized opposition will be nil and the federal government probably won’t oppose it even though some doctors and ethicists strongly believe it presents false hope. The measure passed in the Legislature along partisan lines this year as HCR 2005.

Only a sliver of all terminal patients, less than 1,000 in the past two years, are given access to drugs that are being tested and not yet on the market. The proposition if passed would allow terminally ill patients to use drugs that have been through the first phase of clinical testing.

David Leibowitz, a political consultant, said that even the smartest campaign in opposition to the measure will be an underdog to what is a sympathetic issue with a sympathetic cast of real-life characters at the core.

“Here’s the lesson of political campaigns that you can never forget: People vote based on emotions, not based on intellect. Your mind gratifies what your heart decides it wants,” Leibowitz said.

Voters will have their say on Nov. 4.

Charles Siler, a spokesman for the Goldwater Institute, the conservative public policy think tank that wrote the legislation in Arizona and three other states, said giving dying patients a chance at saving their lives is not a political issue.

As proof, Siler pointed to the political diversity of the legislatures in Colorado, Missouri and Louisiana, where the measures passed unanimously or nearly so. Arizona was the only state in which there was a partisan conflict, with House Democrats united against the measure and Senate Democrats split.

He said the issue is part of a massive cultural change in investigational drug access, the rights of terminal patients and the decision-making process for medicine in the U.S.

“Our goal isn’t to have this just be an emotional issue,” Siler said. “We’d like people to look at it rationally as well and just see it clearly as an issue with the current system.”

He said there will be a campaign to pass the measure.

Matthew Benson, a spokesman for the Arizona Hospital and Healthcare Association, which lobbied lawmakers to oppose the legislation, said the group will not stand in the way of the ballot measure, and will put its money toward candidates who champion health care and economic growth.

“AzHHA’s concern has always been limited to whether this measure will truly open new treatment options to patients or merely create false hope,” Benson wrote in an email.

The institute pitched it as a health care liberty issue, but Arizona lawmakers in committees also saw its share of real-life struggles of terminally patients, some of whom survived by getting access to experimental drugs and others who lost loved ones who were barred by bureaucratic foot-dragging.

Boston resident Lorraine McCartin told the Senate Health and Human Services Committee about her five-year struggle with breast cancer and attempts to get into the U.S. Food and Drug Administration’s Compassionate Use program, which allows some terminally ill patients to use drugs outside of a drug maker’s clinical testing.

She eventually got into the program, which required many trips between Boston and Fairfax, Va.  She took her first dose of an experimental drug in November 2010. Her condition improved dramatically and she was deemed cancer free in December 2011.

“If I was left in a holding pattern, I wouldn’t be here,” McCartin said.

Sen. Katie Hobbs, D-Phoenix, voted for the resolution as a member of the Health and Human Services Committee, partly because it was such a sympathetic issue and difficult to oppose.  But she changed her mind after speaking with a lobbyist with the Arizona Hospital and Healthcare Association. No one from the association spoke against the measure in committee even though it signed in as opposed.

Hobbs said she heard the false hope argument and that it puts doctors at risk for going around FDA protocols, which she explained to her caucus. The Senate passed it on a vote of 23-6, with five Democrats and Sen. John McComish, R-Phoenix, opposed.

The House voted 31-23 to pass, with all Democrats and Rep. John Kavanagh, R-Fountain Hills, opposed.

House Minority Leader Chad Campbell, D-Phoenix, said the caucus didn’t oppose as a group, but individual members heeded the pitch of false hope and intrusion into the testing process from medical professionals.

Campbell said he would like to see the testing process reformed, but it should be done at the federal level, not by the state.

Hobbs said the messaging is favorable to the institute on such a “tear jerker” issue.

“I’m sure it will pass,” she said.

“Dallas Buyers Club”
A myth that the legislation was inspired by the motion picture “Dallas Buyers Club” is growing, mostly spread through news accounts.

The movie, based on a true story, opened in November and stars Matthew McConaughey as an AIDS patient who goes around the FDA to get unapproved drugs to other patients with the disease.

Lucy Caldwell, a spokeswoman for the Goldwater Institute, said the issue came to light as the organization worked on other health care issues over the years.

“We realized that there was an even deeper issue, which is a system where patients who are dying, who are literally in the fight for their lives, can’t get the drugs they need, and this is something everyone we talked to feels is important,” Caldwell said. “There’s no reason after so many years of attempts to reform at the federal level without so much as a committee hearing that we wouldn’t try to do something about that,” Caldwell said.

Siler said the institute chose the initial states and sponsors carefully. For example, sponsors in Colorado and Missouri are medical doctors who could credibly discuss the issue and explain why it is important.

The institute also wanted to prove it was a bipartisan issue and chose Colorado because the Legislature and Governor’s Office are controlled by Democrats; Missouri because it has a Republican Legislature and a Democratic governor; and Louisiana because Republicans control the Legislature and Governor’s Office.

Colorado Gov. John Hickenlooper signed the legislation May 17 and Louisiana Gov. Bobby Jindal signed it May 30, the same day the legislation moved to the governor’s desk in Missouri.

The institute pushed to get the issue on the ballot because Arizona has strong voter protections against legislative repeals or amendments.

“Having the voters enact it makes it a lot stronger in what kind of a message it sends,” Siler said.

The FDA has made some public statements that the legislation erodes its authority and congressional mandate, but hasn’t made much noise beyond that.

Siler said the plan is to pass the legislation in eight to 12 states next year.

“We’re hoping to lead a sweep of the nation,” Siler said.

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