On Wednesday, Arizona became the first state to allow patients to access individualized treatments otherwise blocked by the FDA. The bill was dubbed the “Right to Try for Individualized Treatments,” an expansion of original Right to Try law allowing patients with life-threatening illnesses to undergo clinical trials of the treatments of their choosing.
Governor Doug Ducey signed the bill, SB1163, into law. The Phoenix-based Goldwater Institute, a conservative and libertarian public policy think tank, pioneered the original Right to Try law. That law also began in Arizona. It eventually received approval from Congress under former President Donald Trump.
Goldwater Institute President and CEO Victor Riches said that the new law ensured protections for a fundamental right: the right to save one’s own life.
“The right to try to save one’s own life is one of the most precious rights of all,” said Riches. “America doesn’t have to wait for the FDA to reform itself in order to put patients first. States can and should act now to protect all Americans’ fundamental right to try to save their own life.”
Goldwater Institute Executive Vice President Christina Sandefur said that the law provided new hope for Arizonans. Sandefur called the law “Right to Try 2.0.”
As AZ Free News reported, the bill was inspired by the Riley family in Phoenix. Two of their three daughters, Keira and Olivia, were born with metachromatic leukodystrophy: a sudden, fatal disease that attacks nerves in the brain and spinal cord. Due to FDA restrictions, the Rileys had to seek treatment outside of the country. They were forced to raise tens of thousands of dollars at the height of the pandemic in 2020 in order to relocate to Italy for the five months they needed to access treatment for Keira. The experimental gene therapy was their last hope to save her life.
Olivia couldn’t qualify for the treatment because she was already symptomatic. As of this report, she was transferred to hospice. The average life expectancy for metachromatic leukodystrophy patients is six years.
Kendra Riley, the girls’ mother, spoke with conservative radio host James T. Harris about the bill’s enactment. Riley said that the next step would be to have the rest of the nation pass similar laws.
“You think if your child has one chance in the entire world to live a normal life, we should be able to have access to it in America,” said Riley. “The medicine is there but bureaucracy and insurance shouldn’t be holding it back. Everyone should have the right to a chance at a normal life. I truly hope this helps everyone.”
As they were rallying support for the bill, Sandefur characterized current law as immoral.
“It is unconscionable that an American patient has to travel to another country to Europe in order to be able to get access to a treatment that could save their lives,” said Sandefur.
Corinne Murdock is a reporter for AZ Free News. Follow her latest on Twitter, or email tips to corinne@azfreenews.com.
On Wednesday, the Arizona House approved a Senate bill to repeal the governor’s current executive powers in public health emergencies.
Instead, SB1009 would ensure governors only have the authority to issue a state of emergency for public health emergencies for 30 days. After that, the governor would be limited to extending that state of emergency for 30 days at a time with a limit of 120 days or about four months. Once that time is exhausted, the state legislature must consent to any new state of emergency.
The governor wouldn’t be able to extend the state of emergency more than once without additional reporting requirements. After 60 days of an emergency, the governor must submit a written report to a joint committee of the Senate and House health committees. That committee will assess the report along with a Arizona Department of Health Services briefing and publish a public review of the extension.
SB1009 also empowers the state legislature to extend the state of an emergency for public health emergencies as well. Those extensions would be limited to 30 days, too.
The bill passed along party lines. It now heads to Governor Doug Ducey for final approval.
Ducey only ended the COVID-19 state of emergency at the end of last month: well over two years after the initial state of emergency was issued.
This legislative session covered other changes to Arizona’s state of emergency protocol. Ducey signed HB2507 on Monday, ensuring that religious services would be considered essential during a state of emergency. Over the last two years, other state governments forced the closure of religious buildings and worship gatherings, punishing those who dared to defy their public health orders in order to exercise their religious freedoms.
Corinne Murdock is a reporter for AZ Free News. Follow her latest on Twitter, or email tips to corinne@azfreenews.com.
On Monday, the Arizona legislature approved a bill requiring K-12 schools to implement parental review and notification procedures for school library books.
Specifically, HB2439 requires schools to give parents lists of the books or materials their children borrowed from the library, make available online a list of all books purchased for school libraries, and notify parents of the public review period for the books. Certain schools and school districts were exempted: those without full-time library media specialists and those engaged in agreements with county free library districts, municipal libraries, nonprofit and public libraries, tribal libraries, private schools, and tribal schools.
The Arizona House passed edits made to HB2439 on Monday along a party line vote. The Senate passed their version with amendments last week. One of the major amendments to the bill removed the requirement that school boards review and approve all books prior to their addition to a school library.
State Representative Beverly Pingerelli (R-Peoria) sponsored the bill.
Activists argued that children should have the right to read anything without parental oversight.
On Tuesday, the Gilbert Town Council announced a $289,000 consulting contract for a feasibility study on establishing a commuter rail. The commuter rail, a mode of public transportation at the core of major metropolitan areas like Chicago and New York City, would likely be located somewhere within the Heritage district. The council moved to consider the contract during a later study session.
The proposal comes at a time when transit crime rates have reached an all-time high in areas where they have the most use such as New York City, San Francisco Bay Area, Philadelphia, and Los Angeles. Multiple studies link the presence of public transit such as light rail and commuter rail to an increase in crime and decrease in surrounding property values.
Vice Mayor Aimee Yentes asserted that the goal of the study wasn’t to establish feasibility, but rather to whip up something with “pretty pictures” that would distract from the facts behind commuter rail and inspire public support. Yentes accused Washington, D.C. lobbyists of pushing an agenda for financial gain at the loss of taxpayers and locals, mocking President Joe Biden’s “Build Back Better” campaign slogan as well.
“I think quite frankly we’re taking crazy pills if we think people are going to be excited about commuter rail,” said Yentes. “The complete boondoggle that this will be not just for this community, but for this state. We are literally observing California living this nightmare. I can’t point to a state that Amtrak is not being heavily and deeply subsidized by taxpayers despite 75 percent decline in their ridership. I can’t point to a state where we have a good model that makes any amount of sense for this. We’re going to put the foot on the pedal because we’ve got ‘Build Back Bankruptcy’ dollars that are going to be flooding the jurisdictions?”
Yentes also pointed out that all commuter rails require a local sales tax in addition to all the state subsidies and federal monies they receive. She predicted widespread community backlash.
“I think this is insane,” said Yentes. “I don’t think it’s a matter of timing. There is no good timing for broken 19th-century technology. I think this is a broken model and I think there’s a lot of buyer’s remorse in other states that have gone down this track.”
In addition to commuter rail, the transportation expansion would eventually become transit centers accommodating other types of transit: bus, bicycle, micromobility, and rideshare. Town research explained that such an initiative had been in the works since 1993.
Vice Mayor Aimee Yentes said she has “a lot of problems” with the proposed transit center, specifically the commuter rail, calling it “premature.” Yentes said that the scope of the project for stakeholder involvement wasn’t clear, and that the stakeholders’ work were oriented toward designing and planning rather than community outreach to assess desire and need.
Councilwoman Yung Koprowski insisted that the community at large was aware of the city’s intention to establish a commuter rail based on published documents made available to the community.
Yentes disagreed. She said it was one thing for these initiatives to be laid out in planning documents, but that the reality was the community weren’t involved in them. She said that only an “inner bubble” of the community kept an eye on planning documents.
“I think if I asked 100 of my neighbors if they know a commuter rail is coming to Gilbert, I think approximately zero of those people would be aware,” said Yentes.
Koprowski then clarified that this council decision would be the “first step” to get background and decide whether to move forward with the transit center.
Koprowski owns a transportation planning and civil engineering firm, Y2K Engineering.
Councilman Scott Anderson expressed doubts that the transit center would happen, citing Amtrak’s exclusion of Gilbert as a station location in previous reports and agreeing with Yentes that it was premature. Development Services Director Kyle Mieras revealed that Amtrak recently expressed support for a station location. He added that federal funds would be available to back the project.
“We wanted to show support for this and get ahead so if and when Amtrak or commuter rail does come forward, we’ve at least studied this and in a position where we’re going to come out ahead of it, so we’re skating to where the puck is going not where it’s been,” said Mieras.
Mayor Brigette Peterson added that the Amtrak southwest representative was shocked at Gilbert’s exclusion from viable locations. Peterson divulged that Phoenix Mayor Kate Gallego said that Gilbert was “way ahead” of their city when it came to establishing commuter rail, noting that the town had two areas open for stations, citing Cooley Station as an example.
“If Amtrak comes knocking with those federal dollars, is Gilbert on board to do that?” asked Peterson.
Koprowski noted that the feasibility study would offer some conclusion as to whether commuter rail was feasible and, if not, how the two potential areas could be repurposed. Yentes challenged the council to define its standard of feasibility.
Watch discussion of the transit center below:
Corinne Murdock is a reporter for AZ Free News. Follow her latest on Twitter, or email tips to corinne@azfreenews.com.
Mere hours after the missing body of Texas Guardsman Bishop Evans was found along the Rio Grande River, Tucson Mayor Regina Romero expressed support of the Biden administration’s decision to end Title 42, a policy allowing expedited deportations. Romero hasn’t commented on Evans at all.
Romero also lambasted Americans for not being benevolent enough to the relentless torrent of illegal immigrants. News of Romero’s press release was covered in the country’s largest independent political news site of 2020 and one of the largest this year, The Hill.
“Tucson stands ready to support those seeking asylum,” tweeted Romero. “America should take a lesson from our European allies who are taking in millions of Ukrainian refugees. Democracies don’t get to pick and choose when to support human rights.”
Tucson stands ready to support those seeking asylum.
America should take a lesson from our European allies who are taking in millions of Ukrainian refugees. Democracies don't get to pick and choose when to support human rights. https://t.co/CDzl2JE7u1
Evans, a field artilleryman and critical support for multiple Special Operations Forces missions overseas, died while attempting to rescue two illegal immigrants who were crossing the Rio Grande River around Eagle Pass, Texas. The Texas Rangers later revealed that the pair were drug traffickers.
AZ Free News asked Romero for comment on Evans’ sacrifice. She didn’t respond.
Romero issued the statement alongside Brownsville, Texas Mayor Trey Mendez.
The Biden administration pledged to end Title 42 on May 23, but reports retrieved from several attorney generals in court filings revealed that they were rescinding the policy immediately. On Monday, a federal judge ordered the Biden administration to keep Title 42 in place.
BREAKING: I am so proud of the lawyers from our office who just got a Temporary Restraining Order to keep Title 42 in place. We will continue to fight the Biden administration's open border policies.
