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TX Domestic Violence Advocat Denied Cancer Drugs

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  • TX Domestic Violence Advocat Denied Cancer Drugs

    http://shine.yahoo.com/healthy-livin...205123518.html

    Looks like she is a horsewoman by a picture at Yahoo. I think it links to her Facebook page? Sorry, I am not social media savvy. Maybe someone else here can do the Facebook link to her & her campaign to get the cancer drug? This might be it, but I am not sure: https://www.facebook.com/andrea.sloan.75

    Ovarian Cancer Survivor Wages Fight of Her Life..By Elise Solé, Shine Staff

    Imagine being terminally ill and told that the one thing that might save your life is just out of reach.

    For Andrea Sloan, that's a reality. The 45-year-old is suffering from stage 3 ovarian cancer, and she’s launched a social media campaign in the hopes of convincing a pharmaceutical company to give her a drug that’s in the early stages of development.

    More on Yahoo Shine: Angelina Jolie's Mastecomy: Should You Get the BRCA Gene Test?

    Sloan is an attorney and executive director of the Texas Advocacy Project, an Austin-based group that offers free services to victims of domestic violence. At the age of 37, after visiting her doctor for intermittent abdominal pain, she received devastating news. “My doctor told me that I had stage 3 ovarian cancer,” Sloan told Yahoo Shine. “Three years later, I learned I had inherited the BRCA1 gene.” The gene leads to a heightened risk of breast and ovarian cancer (65 percent and 39 percent, respectively).

    One week after her diagnosis, Sloan began treatment—chemo, surgery to remove the cancer, a hysterectomy — and her cancer went into remission for a full 22 months. However, over the next five years, the cancer went in and out of remission. And in July, when it returned for the fourth time, her doctor informed Sloan that she was running out of options. “We had the conversation where he told me to get my affairs in order. However we both weren’t ready to give up,” said Sloan.

    Her physician, Charles Levenback, M.D., at the University of Texas's MD Anderson Cancer Center in Houston, TX, said Sloan had one possible shot: A drug called BMN-673 was being developed by a company called BioMarin and although it wasn’t yet FDA-approved or tested for ovarian cancer, it might save Sloan’s life — if the company allowed her to use it by way of a policy called “compassionate use.” In certain situations, the Food and Drug Administration (FDA) allows companies to give experimental drugs to people in life-or-death situations, although companies aren’t required to comply.

    The only problem: BioMarin won't let Sloan use the drug.

    “The drug is BioMarin’s intellectual property so the company is within its rights to not permit usage and there is rationale behind it — if, for example, Andrea suffers from side effects, that could deny or prevent the drug from being approved,” Levenback told Yahoo Shine. “However, we already know the drug works on other types of cancer so it’s not a shot in the dark. It’s definitely worth trying and would likely work — BioMarin just has to let her use it.”

    And the FDA agrees. Says Sloan: “They’ve said that I’m qualified for ‘compassionate use’ and have no concerns about me taking BMN-673. The hold up is with Biomarin. I’ve begged through letters and emails; I’ve even sent them photos of myself to show that I’m a real person in desperate need and offered to be their spokesperson if the drug is effective.”

    Clearly, Sloan isn't giving up — and neither are her friends. The Facebook page “Andi’s Army,” originally intended to be a community for Sloan’s close friends, has exploded with almost 3,000 likes and a Change.org petition is circulating, garnering over 50,000 signatures over the last few weeks. Sloan has even attracted the attention of high-profile politicians. Former U.S. representative Newt Gingrich wrote an essay called A Sick Bureaucracy on Sloan’s battle to obtain the drug from BioMarin and posted it on his Gingrich Productions website. And the politician made a phone call to BioMarin to urge them to reconsider. So far, nothing has worked, however Sloan is working with various politicians on legislature that benefits both companies and patients.

    A rep for BioMarin emailed the following statement to Yahoo Shine: "We empathize with anyone facing a terminal illness. As a company, we strongly support pre-approval expanded access programs. We implement these programs when we have sufficient preliminary scientific evidence to support both the safety and the efficacy of a product for an indication, which is generally after the successful completion of a well-controlled trial… BMN 673 is not sufficiently far along in the development process to implement expanded access in ovarian cancer….Although we have publicly reported that the initial data is promising, we do not yet have sufficient evidence that the compound is safe and effective."

    However, Sloan is ready to take a risk: "I just want a chance to live a long and healthy life and I'll continue fighting until I get it."
    "Police officers are public servants. Not James Bond with a license to kill."

  • #2
    ThisTooShall Pass- You got all the links posted fine. The only one I will add is the link to her change.org petition which she has posted on her facebook page:

    http://www.change.org/petitions/biom...-save-her-life

    Comment


    • #3
      A rather biased title: "TX Domestic Violence Advocat Denied Cancer Drugs" making it sound as if it's a payback for her being an advocate. Unfair! Her job had nothing to do with being denied drugs.

      I was at NIH for 13 years involved in contracting for medical research...cardiac, pulmonary, AIDS and women's health initiatives. Just because a patient is willing to "take a risk" doesn't mean everyone will be throwing drugs at her. We had one trial for ephysema...a study had been done with rats chemically given emphysema and the drug actually cured it...in mega doses. We managed to get a blessing to do a human trial, but could only use the drug at the dosage it was used for another problem in people. Way lower than the rat study dose..but the patients were old and infirm and nobody was willing to give really high doses even if they were willing to be guinea pigs.

      People die waiting for drugs/organs/techniques..it's sad, but it happens. This drug is not yet qualified to be in a Phase 3 Clinical Trial, they're at the very early "initial data is promising" stage. An IRB (independent review board) has to review and approve the use and dosages of the drug even for a single person...this info is not available yet and a DSMB (data safety monitoring board) has to be set to review results of the person receiving the drug. Drug trials aren't just "Here, take this pill and let me know how you feel".

      Here's the story of a young father of 3 little kids who can't get on a Phase 3 trial where they know the drug works, due to physical problems that keep him off: http://gma.yahoo.com/dying-dad-plead...opstories.html

      This is not a rare thing....sad, but not rare.
      "Sic Gorgiamus Allos Subjectatos Nunc"

      Comment

      • Original Poster

        #4
        Yes, the title was biased to make people look. Mainly I posted because she is a horsewoman. COTH rallies behind many a horse person. At least she has proven she is a good egg, so why not rally around this one too?
        "Police officers are public servants. Not James Bond with a license to kill."

        Comment


        • #5
          While we certainly wish the subject of the story well, it's a bit of a reach to see photos of her with a horse as making this horse-related, so closing this.

          Comment

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