One Phoenix family is fighting for their daughters’ lives: not only against the odds of the fatal genetic disease they both suffer from, but against the Federal Drug Administration (FDA) regulations that prohibit access to a potential cure. The life-saving treatment, a gene therapy, is only available in Milan, Italy — thousands of miles away at the cost of anywhere between $1,000 to $2,000 per round trip flight ticket.
The two of three daughters in the Riley family, Keira and Olivia, were born with metachromatic leukodystrophy, a sudden-onset, fatal disease that causes a buildup of lipids on critical nerves in the brain and spinal cord, which in turn damages the myelin sheath that protects nerve cells. Medical journals identify this occurrence as a result of a deficiency in sulfatide enzymes, which break down lipids. The Riley family had to raise tens of thousands of dollars at the height of the pandemic in 2020 to relocate to Italy for five months so they could save Keira.
Olivia didn’t qualify for the experimental gene therapy because she was already symptomatic. Within 90 days of showing her symptoms, Olivia lost the ability to walk and talk.
“How do you even deal with that as a parent? Imagining two out of your three kids will soon be gone?” said their mother, Kendra.
Due to cases like that of the Riley family, the Arizona legislature is considering a new law to expand on current laws enabling terminally ill patients to try treatments not yet approved by the FDA: SB1163, or the “Right to Try for Individualized Treatments.”
The Goldwater Institute pioneered the original Right to Try law that began in Arizona and eventually was approved by Congress under President Donald Trump, guaranteeing patients with life-threatening illnesses that exhausted all other options to participate in clinical trials of the treatments of their choosing.
Christina Sandefur, Goldwater Institute Executive Vice President, dubbed SB1163 the “Right to Try 2.0” — an expanded upgrade to the original law tailored for more individualized needs. The State Senate passed the bill last month, and it’s awaiting a final vote before the House.
“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.
For the Riley family, it appears that the experimental gene therapy worked — since January 2021, Keira hasn’t exhibited any symptoms and has developed normally. In mid-January, the FDA granted the same treatment Keira received in Italy. The treatment was given approval, in part, because of results from the Milan, Italy trials.
Corinne Murdock is a reporter for AZ Free News. Follow her latest on Twitter, or email tips to corinne@azfreenews.com.
The Supreme Court (SCOTUS) announced earlier this month that it would consider the constitutionality of the Indian Child Welfare Act (ICWA), federal law that determines when states can rescue abused or neglected Indian children, as well as foster rules. This law applies to tribal children and those eligible to live on a tribe but living off of a reservation. Essentially, ICWA does all it can to keep Native American children within their own families or with other Native Americans, and requires state officials to apply a higher degree of scrutiny over abuse to determine whether abuse exists. While other children’s cases need only present “clear and convincing evidence” of abuse, Native American children’s cases would need to present “without a reasonable doubt.” ICWA was enacted to prevent the government from taking Native American children from their families.
Phoenix’s nationally-acclaimed public policy research and litigation organization, the Goldwater Institute, requested SCOTUS to review ICWA; they’ve challenged the federal law for years. In light of the SCOTUS announcement, Goldwater Institute Vice President of Litigation Timothy Sandefur discussed ICWA on the “Andy Caldwell Show.”
Sandefur described the law as unconstitutional and depriving children of fair treatment. He noted that Native American children are at greater risk for molestation, abuse, gang membership, and suicide, arguing that already-vulnerable children were only hurt more by ICWA.
“The rules that [ICWA] sets for child protection are actually less protective for a child than the laws that apply for every other racial group,” said Sandefur.
TUNE IN today at 4:30 PM MT/6:30 ET!
Goldwater's @TimothySandefur will be on the @ACaldwell_Show to analyze SCOTUS' decision to hear a challenge of the unconstitutional federal law that discriminates against Native American kids.
— Goldwater Institute (@GoldwaterInst) March 1, 2022
The case SCOTUS will consider, Brackeen v. Haaland, comes from a culmination of different cases brought by several parents desiring to adopt Native American children but were denied due to not being Native American themselves.
Sandefur described one case that the Goldwater Institute worked on, in which a mother wanted to terminate the rights of her abusive husband so that her new husband could legally adopt her son. If the child had been any other race, the rights could’ve been terminated. However, ICWA applied. Under ICWA, it was “prohibitively difficult” to terminate an abusive parent’s right, even in the case of a mother requesting that action.
In a press release, Sandefur also noted that ICWA also violates the separation of the federal and state governments by requiring states to enforce federal law and interpret their own laws differently.
Corinne Murdock is a reporter for AZ Free News. Follow her latest on Twitter, or email tips to corinne@azfreenews.com.
We tried to warn them. But Pinal County officials decided to move forward with their illegal and unconstitutional transportation tax anyway. Thankfully, on Tuesday, the Arizona Supreme Court issued a tremendous victory for Pinal County taxpayers and the rule of law.
And while it’s disappointing that taxpayers were forced to pay thousands of dollars to defend this illegal tax scheme in court, the Pinal County Board of Supervisors will now have to end the collection of this tax and issue refunds to aggrieved taxpayers.
A tax on retail sales below $10,000
This all started in 2016 when Pinal County officials began turning the political wheels to send a $640 million tax increase to voters to fund a wide array of transportation projects throughout the region.
Several Arizona legislators along with the Free Enterprise Club and the Goldwater Institute are celebrating a major court victory for Arizona taxpayers after a Maricopa County Superior Court judge struck down the largest tax hike in state history on Friday.
Today, @maricopacounty Superior Court Judge John Hannah ruled against Prop 208, determining that the $$ raised from the tax would exceed the constitutional spending limit for education.
Judge John Hannah’s ruling bars enforcement of Proposition 208, which imposed a significant income tax surcharge on small-business owners and individuals making over $250,000 a year. Prop 208, also called the Invest in Education Act, was narrowly passed by voters in November 2020 and was immediately challenged in court on multiple grounds, including a conflict with Arizona’s Constitution.
Governor Doug Ducey called Hannah’s ruling “a win for Arizona taxpayers,” adding that it is marks “another step in undoing the damage of Prop 208 and making sure we continue to benefit from having the lowest flat income tax rate in the nation.”
The Goldwater Institute-sponsored lawsuit was filed in February 2021 on behalf of numerous taxpayers, small business owners, and legislators. Last summer, the Arizona Supreme Court agreed with the plaintiffs’ argument that the surcharge taxes from Prop 208 were considered “local revenues” subject to spending limits under the state’s Constitution. The Justices sent the case back Hannah for a determination of whether Prop 208’s Local Revenues Provision runs afoul of the Constitution’s Education Expenditure Clause by violating that limitation. In a decision today, the judge agreed that Proposition 208 violated the Constitution.
“This Court understands the remand order as a direction to declare Proposition 208 unconstitutional in its entirety, and to enjoin its operation permanently, if the Court finds as a fact that the annual education spending limits imposed by the Arizona Constitution will prevent Arizona’s public schools from spending a ‘material’ amount of Proposition 208 tax revenue in 2023,” Hannah wrote in his ruling. “On that basis, the Court is obligated to strike down Proposition 208.”
Reaction to the ruling came swiftly, despite a possibility the Justices may be asked by the losing parties to review Hannah’s order later this year.
“While we expect the ruling may be appealed, we are confident the Arizona Supreme Court will find 208 unconstitutional, as they did last year. Arizona is – and will remain – a state that knows how to prioritize education while keeping taxes low and attracting jobs,” Gov. Ducey said.
Senate President Karen Fann, one of the plaintiffs, called Friday’s ruling “a major victory” against an initiative she said misled voters by trying to get the tax-and-spend hike around the Constitution.
“Out-of-state special interests tried to deceive our voters,” Fann said after Hannah released his ruling. “We are thrilled that this job-killing tax hike won’t go into effect.”
Many attributed the success of the lawsuit to the work of the Goldwater Institute which pointed out concerns with Prop 208’s constitutionality well before Election Day in 2020.
“Today’s decision puts a nail in the coffin of the unconstitutional, job-killing Proposition 208, and it cements Arizona’s position as the national leader in lower taxes and building a stronger economy,” said Victor Riches, President and CEO of the Goldwater Institute.
On Tuesday, the Arizona Supreme Court ruled that Pinal County’s transportation excise tax was unlawful. The ruling affects two 2017 voter-approved measures from the Pinal County Regional Transportation Authority (RTA) Pinal County Board of Supervisors. The two measures instituted a tax on purchases under $10,000, constituting a two-tiered retail transaction privilege tax (TPT) that would pay for infrastructure.
BREAKING NEWS – MASSIVE Goldwater victory for taxpayers' rights!
The Arizona Supreme Court just ruled that Pinal County's "transportation excise tax" is ILLEGAL. pic.twitter.com/BhRBGH1cwp
— Goldwater Institute (@GoldwaterInst) March 8, 2022
The Arizona Supreme Court disagreed with the county’s assertion that the tax afforded a modified and variable rate in accordance with state law.
“We therefore conclude that the two-tiered retail TPT structure in Proposition 417 is neither a ‘modified rate’ nor a ‘variable rate’ under § 42-6106(C). In this case, until the legislature ‘expressly delegates’ to counties the authority to implement this tiered-rate tax on specified businesses—an authority that is ‘strictly construed’ — Pinal County’s two tiered retail TPT structure as part of a transportation excise tax is unlawful and invalid,” wrote the court.
The ruling marked the Goldwater Institute’s seventh Arizona Supreme Court ruling in their favor. The institute’s vice president of litigation, Timothy Sandefur, asserted that the ruling ensured clarity, ease, and lowered costs for businesses.
“The legislature intended state taxes to be uniform — not to allow each of the state’s 15 counties to set their own rules. To allow that would make Arizona inhospitable for business, because it would transform the state into a crazy quilt of different tax rules in each locality,” wrote Sandefur. “[I]t marks a victory for taxpayers not just in Pinal County but throughout Arizona. In tough economic times—with inflation and fuel costs rising—the last thing Arizona needs is for public officials to create more and more complicated tax rules that take more of people’s earnings away and drive away job-creating industry.”
We just won a big victory for taxpayers – it's our 7th win before the AZ Supreme Court!
The last thing AZ needs right now is for government officials to create complicated tax rules that take away more of people's hard-earned money and drive away jobs. https://t.co/uuJNlJHg0d
— Goldwater Institute (@GoldwaterInst) March 8, 2022
Corinne Murdock is a reporter for AZ Free News. Follow her latest on Twitter, or email tips to corinne@azfreenews.com.
