% | $
Quotes you view appear here for quick access.

Sarepta Therapeutics, Inc. Message Board

  • usagary1 usagary1 Feb 21, 2014 2:14 PM Flag

    Breaking news

    Right to Try’ laws would allow dying patients access to non-FDA-approved treatments

    BY: Mary Lou Byrd
    February 21, 2014 11:20 am

    A bill allowing the terminally ill to use experimental drugs not yet approved for use by the Federal Drug Administration has advanced to the full House in Arizona.

    Arizona lawmakers passed the bill out of committee and in the next three weeks both chambers of the legislature could vote on it. It would then need to be approved by voters in November.

    The Right to Try law would give those who have exhausted all other treatment options the use of non-FDA approved drugs. According to the Goldwater Institute, similar laws are under consideration and in different stages of the legislative process in seven other states.

    Supporters of the bill are optimistic it will become law in Arizona and that other states will follow suit.

    “This is a fundamental right for people to have,” said Christina Corieri, a health care policy analyst at the Goldwater Institute, which helped craft the law. “They have a fundamental right to save their own life, and there shouldn’t be a bureaucrat in the picture.”

    Corieri said patients themselves should have the right to decide if they want to take these drugs, which may or may not have potential side effects.

    “We know the side effect that will occur if they don’t access these drugs—they are going to die,” said Corieri.

    Frank Burroughs, cofounder of the Abigail Alliance, which advocates for wider access to developmental drugs, said Arizona’s actions are a hopeful sign.

    “I am very hopeful right now,” said Burroughs. “At times, this business could feel very hopeless.”

    Burroughs’ daughter, Abigail, died at the age of 21 after exhausting all FDA approved drugs. Her access to the drug Erbitux was denied, even though it was showing promising signs in early clinical trials.

    The FDA approved Erbitux three-and-a-half years after Abigail’s death.

    Burroughs said he believes Abigail would be alive today if she had a

    SortNewest  |  Oldest  |  Most Replied Expand all replies
    • A worthy concept, but nothing that will change the fortunes of SRPT. Patients might have a "right" to get the drug, but without insurance companies paying for it, very few patients will be able to afford Etep. Without a defined payment system, they would be forced to manufacture on demand/payment, which would make the manufacturing costs that much greater. In the end, it would probably be a distraction that would cost the company money - how would they price the drug in the face of dying children - even trying to recoup their costs, they would end up looking like an evil corporation?