Wisconsin lawmakers have introduced four pieces of legislation this session aimed at expanding access to treatment for people with serious medical conditions. Two of those bills are moving quickly toward passage, with votes scheduled in the Assembly on Tuesday.
The bills provoke emotional testimony and inevitably comparisons are made between the three. Discussion of a bill to allow the sale of cannibidioid (CBD) oil without a prescription leads to talk of bills to allow access to medical marijuana. And debate over a bill to allow terminally ill patients to access experimental treatments often turns to talk of CBD and medical marijuana.
While the so-called "right to try" bill and the CBD legislation appear on track to be signed into law with bipartisan support, a pair of bills aimed at legalizing medical marijuana have only attracted cosponsors from the Democratic minority.
And although lawmakers are working across the aisle on the right-to-try and CBD bills, responses from the medical and law enforcement communities are mixed.
"The best health care public policy that helps the most people does not spring from an emotional anecdote — it comes from deliberate, level-headed science," said Mark Grapentine, lobbyist for the Wisconsin Medical Society, which represents physicians throughout the state. "Objectivity isn’t sexy — but it’s sure necessary."
For the families who support these bills, it's often a matter of hope. There are no guarantees, but when it feels like there are no other options, experimental therapies can provide hope where little exists.
Thirteen-year-old Tealyn Wendler, of Pewaukee, sat next to her father, Tim, as she made a plea to lawmakers on the Assembly Health Committee late last month to pass a "right-to-try" bill introduced by Rep. Pat Snyder, R-Schofield.
"To this day, we all wait for someone to do something, but not anymore," Tealyn said of families whose loved ones have diseases like ALS, like her mother, Trickett. "These families are done waiting for their loved ones to fight for their last breath. It's time for a movement, a change and a cure, and that all begins with the right to try."
Trickett, the namesake for a federal version of the proposal introduced by Wisconsin Sen. Ron Johnson, died in 2015.
"I’m not naive enough or arrogant enough to stand before you guys today and say that if this bill were in place five years ago or 10 years ago that Trickett would be here, that we would have found a cure for ALS," Tim said. "What I will say without hesitation is that this bill would have provided hope for us."
The legislation would allow patients to bypass the U.S. Food and Drug Administration's lengthy approval process, prohibiting the federal government from banning access to certain experimental medications. Treatments covered by the law have undergone the FDA's "Phase 1" testing, which determines whether drugs have "unacceptable toxicity."
Snyder argued the FDA approval process is slow and complicated, and patients who are fighting for their lives should not be blocked by government from pursuing relief or a cure.
Critics of such legislation have called it a "misguided effort," noting that it does not require drug companies to provide treatment to patients, nor does it require insurance companies to pay for the therapies.
Physicians are concerned patients would choose to receive experimental therapy under the legislation rather than participate in the clinical trials that lead to scientific and medical advancements, Grapentine said.
"If someone who is otherwise eligible for a clinical trial chooses instead to try an experimental drug, that slows down the true science from making progress toward potentially groundbreaking medicine," he said.
People who testified in favor of the bill — many of them with ALS themselves — spoke of their difficulties qualifying for clinical trials and lamented the lack of a cure for diseases like theirs.
Opponents of the bill point to the FDA's expanded access program, often referred to as "compassionate use," which allows some patients to use treatments outside of a clinical trial.
But Naomi Lopez Bauman, director of health care policy for the libertarian Goldwater Institute — the source of the model language for the bill — argued the bill is about "not forcing terminal patients to beg the federal government to save their own lives."
An amendment to the bill approved by the committee would require a patient to have been deemed ineligible for a clinical trial within 100 miles of his or her home, or be deemed ineligible for any clinical trial by his or her physician.
Support among lawmakers comes from all ends of the political spectrum. The conservative group Americans for Prosperity is the only group registered to lobby in favor of the bill. The Wisconsin Academy of Family Physicians and Wisconsin Medical Society are registered against the bill. A handful of insurance have not disclosed their lobbying position. Wisconsin Right to Life is registered as "neutral," along with the Pharmaceutical Research and Manufacturers of America, which is neutral "provided participation by manufacturers remains optional and voluntary and the bill's liability provisions remain intact."
The Assembly is set to vote on the bill on Tuesday. It has not yet been heard by a Senate committee. Asked whether he supports the legislation, Gov. Scott Walker told reporters last week he still has to look at it.
"I think there's a growing frustration that the federal government isn't moving quickly enough on things that could provide tremendous relief and maybe even save people's lives," Walker said. "I'm certainly interested in that idea here."
"The end of the last legislative session was extremely heartbreaking and frustrating," Rebecca Arnold, of Pleasant Prairie, told members of the Senate Committee on Judiciary and Public Safety in January. "As that gavel struck and ended the session, my heart just sank."
The bill to allow the sale of CBD oil without a prescription, authored by Sen. Van Wanggaard, R-Racine, and Rep. Scott Krug, R-Nekoosa, had broad, bipartisan support. But after it cleared the Assembly on a voice vote, the concerns of three Republican senators blocked its passage in the Senate.
Those lawmakers were concerned the bill could lead to full legalization of marijuana.
CBD oil, derived from marijuana plants, has been used to treat seizures in children. Its use was legalized in Wisconsin in 2014, but under current law only licensed providers can obtain it. The legislation, brought back by the same authors this session, would ease those rules to allow easier access for parents.
The bill would allow possession of CBD oil as long as a doctor has certified it is being used for a medical condition. It would also require the state to follow suit within 30 days if the federal government were to reclassify CBD oil so it is no longer a Schedule I drug.
"By supporting this bill we can reward (families') passion, ease their desperation, give them hope and end their fear," Wanggaard said.
Evan Arnold, Rebecca's 11-year-old daughter, told lawmakers about the 14 medications her sister, Reagan, has tried over a span of 10 years to treat her seizures. The three women sat with a freezer bag full of prescriptions on the table.
For the Arnolds, it's also about hope.
"CBD is hope for us and many others. When my parents talked about what happened last year I was not happy," Evan said. "Hope is never wrong. When we try a new surgery or medicine we always have hope."
Sally Schaeffer's daughter, Lydia, was the namesake for the original CBD legislation passed in 2014. Lydia died several months after the bill was signed into law, but Schaeffer, of Burlington, has continued to advocate for a "fix" to the initial legislation.
"No smoke and mirrors anymore, no loopholes. We need to fix it. Give people what you promised to them three years ago when Lydia's Law was enacted. Fix this," Schaeffer pleaded. "Every time I speak to you it opens this huge hole in my heart, a hole that will not heal for the rest of my life. So I’m asking you once again to finally fix this."
The bill has bipartisan support in both legislative chambers, and is scheduled for a vote in the Assembly on Tuesday.
"This bill, as I understand it, they’ve been very focused on keeping it narrow, specifically to address the concern that parents had," Walker told reporters last month. "As long as it stayed that focused I'm willing to support it. I just want to make sure it’s not so broad as to open the door to legalizing marijuana in the state."
The Wisconsin Chiefs of Police Association is registered against it, while the Wisconsin Farmers Union is registered in favor. A handful of other groups including the Wisconsin Medical Society, Wisconsin Academy of Family Physicians, Wisconsin Sheriffs and Deputy Sheriffs Association and Greenwich Biosciences Inc. are neutral on the bill.
Greenwich Bioscience manufactures Epidoloex, a CBD-based drug going through FDA clinical trials.
"This is about marijuana. We can’t talk around this bill when really, CBD is a byproduct. So we’ve got to address all of this," Andrea Powers told the Senate Committee on Judiciary and Public Safety as it discussed the CBD bill.
Roberts was diagnosed with Ehlers-Danlos syndrome — a connective tissue disorder — in 2006. Her prescriptions included opiates, benzodiazepines, muscle relaxants and mood-altering drugs. As a former substance abuse counselor in the U.S. Marine Corps, she was concerned about the massive quantity of pills she had been directed to take. Eventually, she turned to medical marijuana.
"This CBD bill, I’m in support of it, but I’m telling you, this is the least you can do. This is the least you can do," Roberts told the committee. "(Cannabis) makes life possible for me, and I know I’m not the only one. I’m not an island. I know there are other veterans that have this issue."
Iraq War veteran Steve Acheson would agree. Acheson uses cannabis to treat pain from physical injuries sustained in the war along with the "invisible wound" of post-traumatic stress disorder (PTSD).
At a news conference early in February, Acheson held up two large freezer bags full of prescription bottles he had been issued for his ailments: among them were opioids, muscle relaxers, ant-inflammatory drugs and sleeping pills.
"Slowly, I was able to replace every single medication I had been taking with one natural, safe, and most importantly, effective alternative to the plethora of pills," Acheson told reporters as he described what happened when he tried cannabis.
Acheson spoke at a news conference in support of a pair of bills introduced by Sen. Jon Erpenbach, D-Middleton, and Rep. Chris Taylor, D-Madison. The first bill would legalize the use of medical marijuana for patients with qualifying conditions. The second would put the question to voters in the form of a nonbinding statewide referendum.
The lawmakers argued marijuana could be used as a safer alternative to opioids in treating chronic pain, and should be explored as a means of addressing Wisconsin's opiate abuse epidemic.
Some Republican lawmakers, including Wanggaard and Assembly Speaker Robin Vos, R-Rochester, have recently expressed a willingness to at least consider medical marijuana — but likely not anytime soon. No Republicans have signed onto the Erpenbach-Taylor bills, and they have not yet been given a hearing.
Walker has said he is "not interested in opening the door towards legalizing marijuana, be it overall or even for medical marijuana, because I think studies show medically there are much more viable alternatives."