Sen. Harry Reid (D-Nev.) did it again. He single handily blocked a bill from moving in the Senate. With a one page objection, the retiring senator kept terminally ill Americans from a step closer to having a right – a right to try.
The senator’s reasons seemed right – he wants Sen. Ron Johnson‘s Right to Try bill to have a hearing in the Senate committee with the main jurisdiction, the Health, Education, Labor and Pensions (HELP) Committee and he felt the bill wasn’t bi-partisan. Sounds reasonable?
As is typical in politics though, the senators facts were – shall we say – off.
Johnson recently helped clear the record for Reid with some facts.
As Johnson outlined, the Right to Try bill did have two hearings in the Senate – in the Homeland Security and Government Affairs Committee (HSGAC) of which Johnson chairs. This committee has some jurisdiction over this issue due to the bills attempt to streamline a burdensome government agency process – allowing expedited access to trial drugs under supervision of the FDA.
One may ask, why did the hearings happen in the HSGAC Committee and not HELP? That’s because the HELP Committee has refused to hold a hearing, act on this bill or even publicly address Right to Try. Neither the chairman of the HELP Committee, Sen. Lamar Alexander (R-Tenn.) or ranking member, Sen. Patty Murray (D-Wash.) have weighed in on the issue. Seeing a lack of action, Johnson, the unusual Senator who likes action – held the hearings in his committee to vet the issue with patients, advocates and he invited the FDA.
The Senate bill was also bi-partisan. Democratic Sens. Joe Manchin of West Virginia and Joe Donnolly of Indiana are indeed co-sponsors of this bill. Also on the state level, 32 states have had over 4,000 state legislators voting for State Right to Try bills – in most cases unanimously, making this issue bi-partisan across the nation.
The most recent example was in California whose prime sponsor was the Democrat Senate Majority Leader. Democratic Gov. Jerry Brown – a politician not usually know for libertarian or right-wing leanings signed the bill into law. So what propelled California to exhibit such bi-partisanship? Perhaps people and not politics. Isn’t that rare.
Unfortunately some in the U.S. Senate – whose control hangs in the balance next year seem to know only politics not people.
It’s no secret Johnson from Wisconsin is up for re-election and is vulnerable. The Democrats may be able to unseat him. In his press release Johnson outlined the multiple bi-partisan and good policy bills Reid has objected to. Why? One can only conclude that the Senate Minority Leader, Reid, can’t afford to let a vulnerable Republican like Johnson have a win – even at the expense of terminally ill Americans. The people lose – politics wins.
In 1964 President Lyndon Johnson had a similar battle. When the Civil Rights bill was introduced into the Senate, a majority of Democratic senators objected to it. Why? In the South – this issue would undermine their Democratic stronghold. Thankfully, with some clever political maneuvering, in a bi-partisan move – Republicans joined with supportive Democrats and passed the 1964 Civil Rights Act – reinforcing rights that many Americans had but had long been barred from. The people won over the politics.
Fast forward to today and while terminally ill Americans are effectively denied a fundamental “right,” the Congress has passed rights for Sexual Assault Survivors, Animal Welfare (rights) Act, Crime Victims Rights Act, A Consumer Bill of Rights, a Taxpayer Bill of Rights and others.
So Animals have a bill of rights but a Parkinson or Cancer patient does not? Really?
Politics aside, the Congressional “inertia” is now in overdrive due to the election year. This denial of rights will continue despite an opportunity to pioneer a new trail with Right to Try legislation – a right allowing terminally ill Americans access to FDA monitored treatments.
Like in 1964, terminally ill American’s are denied a right – the Right to Try – but don’t have the strength or time to march or protest. Instead they sit quietly in homes across our nation, cared for by friends and family whose budgets and hopes have been stretched to the breaking point. Aren’t we a supposed to be a compassionate nation?
Well – Congress’ break is a month less time for an ALS patient with a 2-5 year life expectancy. Unlike Congress, they don’t have time to waste.
While terminally Americans suffer from this lack of a right – Reid’s response on the floor of the Senate was “I went to the hospital and watched two people with ALS die.” So much for compassion.
“If they saw what it does to somebody who was a healthy mom with a good career and great friends, and then all of a sudden this different path you can’t come back from, they would all say, ‘what can I do to help?'”
That’s what Trickett Wendler, a mother of three young children, told a Milwaukee-based news station in February 2015, roughly a month before she succumbed to amyotrophic lateral sclerosis, or ALS. Also called “Lou Gehrig’s disease,” after the legendary New York Yankees first baseman, ALS is a terrible, debilitating neurological disease that cuts short the lives of those it ravages.
Sadly, there is no cure.
Wendler knew her time would be cut short, but she bravely fought for every breath, for her loving husband and children. “At this point in time,” she said, “I know I’m drawing closer to the end.”
Recently, the Senate was presented with the opportunity to help those like Trickett Wendler.
The Trickett Wendler Right to Try Act would allow patients with terminal illnesses to try investigational treatments when no other options are available. The bipartisan legislation, which offers a hope to terminally ill patients and families, is championed by Sen. Ron Johnson (R-Wis.).
Senate Minority Leader Harry Reid (D-Nev.) blocked the legislation from receiving a vote.
Supposedly, Reid had procedural disagreements. He complained that it didn’t receive a committee hearing. In fact, right to try was the subject of a September 22 hearing in the Senate Homeland Security and Governmental Affairs Committee, which is chaired by Johnson.
Yet Reid’s objection was also grounded in disgusting partisan politics. Not only did he falsely claim that right to try wasn’t heard in committee, Reid also had the audacity to complain about Senate Republicans not rubber-stamping President Barack Obama’s Supreme Court nominee.
But on right to try — as is often the case — Congress is lagging behind the states.
Thirty-two states have passed right to try laws. The list includes traditionally Republican states like Alabama and Texas, the Democratic strongholds of Oregon and Illinois, as well as purple states like New Hampshire and Nevada. Even California’s Democratic governor signed right to try legislation into law in late-September.
The Food and Drug Administration’s approval process for experimental drugs and treatments is a long and costly process, and terminally ill patients simply don’t have time to wait on bureaucracy disguised as “consumer protection.”
It’s true that the FDA does allow clinical trials for some experimental drugs and treatments that are going through the approval process, but only three percent of terminally ill patients participate in these trials.
The Trickett Wendler Right to Try Act keeps the federal government from prohibiting the production and prescription of experimental drugs that have cleared the first phase of the FDA approval process. In addition to protecting patients under treatment, the bill clears manufacturers and prescribers from any potential liability.
Right to try may not be the answer for all those who are terminally ill, but the glimmer of hope it offers by cutting through FDA bureaucracy simply can’t be understated. As Wendler’s daughter, Tealyn, recently said, “We don’t have time and we don’t have years to wait.”
“It feels like you’re stuck like the government is in charge of your life,” the 12-year-old explained, “and they haven’t been in your shoes either.”
Just days before her death, Trickett Wendler offered a glimpse of what it’s like to be in her shoes:
“It’s gotten really scary, especially at night. Sometimes I’ll wake up gasping for air, so I think I’m getting close — so I wanted you to know. I hope my story has a lasting impression that helps others because I pray to God that this disease never happens to them because ALS doesn’t care who you are.”
Trickett Wendler’s words matter more than mine ever will. I hope Harry Reid will learn about her story and stop putting petty partisan politics ahead of good public policy.