UDPATE: Seizure drug may now be legal, but is still unavailable - WKOW 27: Madison, WI Breaking News, Weather and Sports

UDPATE: Seizure drug may now be legal, but is still unavailable in Wisconsin

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MADISON (WKOW) -- A bill to legalize a marijuana compound called cannabidiol, or CBD, passed the state legislature and was signed into law by Governor Scott Walker (R-Wisconsin) in April with quite a bit of fanfare.  But now the families who championed that bill are once again searching for answers.

Nic Volker is a 9 year-old Monona boy suffers from a disorder that causes him to have up to 100 seizures a day.  But his mother, Amylynne Santiago Volker, thought her son's problems might be over when the Governor signed the CBD bill.

"We just thought it was a legislative miracle, which then was gonna lead to all these positive outcomes and of course we were hopeful that we were going to be able to get the CBD as soon as possible," said Santiago Volker.

But an amendment added to the bill to get it through the Senate says CBD can only be prescribed by a doctor who first gets a waiver from the U.S. Food and Drug and Administration (FDA), because the agency has yet to approve its use.

Officials at the state's two largest children's hospitals, Children's Hospital of Wisconsin and American Family Children's Hospital, have both said they will not pursue such a waiver and parents cannot seem a to find a doctor who will.
   
"There's no movement.  We can't get the drug in the state," said Santiago Volker.  "We're wondering, not only what those next steps are, but who's going to take leadership in those next steps."

"That was not something that was raised to us," said Gov. Walker when 27 News asked him about the issue Wednesday morning.  "You know, its something I've read about, heard about of late, but we'd have to look more closely to see what if anything we could do to help facilitate their getting access to that." 

But Gov. Walker still thinks requiring physicians to get an FDA waiver before prescribing CBD is a necessary precaution.

"Particularly when we're talking about the focal point being largely driven by kids, while we wanted to make sure the offering was available, that it is done so in a way that's safe and manageable as well," said Gov. Walker.

Because cannibas is only harvested in the spring and fall and there are waiting lists for CBD in the states where it is actually being prescribed, the earliest it would be available in Wisconsin will likely be this fall.

That is why some of the affected families have already moved to those states, like Colorado and California.  Amylynne Santiago Volker says her family is strongly considering doing the same thing.

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MADISON (WKOW) -- Families that were thrilled to have Gov. Scott Walker (R-Wisconsin) sign a bill legalizing the use of cannabidiol in May are now dealing with the reality that no doctors in Wisconsin will prescribe it.

Cannabidiol, which is more commonly known as CBD, is a compound found in marijuana that has been shown to be effective in the treatment of seizure disorders for some children. 

But because CBD has still not been approved for use by the U.S. Food and Drug Administration (FDA), Children's Hospital of Wisconsin in Milwaukee and American Family Children's Hospital in Madison will not prescribe it.

Those hospitals are apparently not alone.  Amylynne Santiago-Volker, a Dane County mother whose 9 year-old son Nic suffers up to 100 seizures per day, says she doesn't know of any family in Wisconsin that has been able to successfully get CBD to treat their children.  She says some of those families have already moved to other states such Colorado and California, where medical marijuana is legal and as a result CBD is being prescribed.

Santiago-Volker says an amendment added to the original Assembly bill, which requires physicians to receive a waiver from the FDA to prescribe CBD, has proven to be a major stumbling block.

Gov. Scott Walker told 27 News no one has brought the issue of CBD being unavailable to his attention, but says it is something he is concerned about.

Capitol Bureau Chief Greg Neumann will have more on this story on 27 News at 5 and 6.

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