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  1. The FDA Wants to Hear from You. Here’s How to Make That Happen.

    June 12, 2018 by Andrea

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    Last month, the Food and Drug Administration (FDA) announced it would be holding a public meeting all about chronic pain, in hopes of learning, directly from people living with chronic pain, more about what patients go through and how treatment is given. As the date draws nearer -- the event will be held on July 9, 2018 from 10 a.m. to 4 p.m. at the FDA's White Oak Campus in Silver Spring, Maryland -- we wanted to encourage sickle cell warriors to make their voices heard, whether in person or via letter. 

    It's no secret that sickle cell warriors, a large number of whom are of African descent, face stigma and prejudices when it comes to securing the medications needed for their severe pain. Many times, doctors will make assumptions that the person seeking help is an addict and refuse to believe their pain is as intense as they say. Chart notes reflecting this can also potentially affect a person's future treatment, as well. While there have been studies published, articles written, and even TV shows dedicated to calling out such ill treatment of this specific group of people, the prejudices continue. The best way to help push the medical community toward necessary change as a whole is to speak out -- and never stop until that change is made. 

    According to the announcement, the "FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressents; other medications; and non-pharmacologic interventions or therapies." If you can't make it to next month's meeting in person, the FDA wil be accepting written comments (e-mail or regular mail) about your experiences with chronic pain through September 10, 2018. You can find details on sending your submission here.


  2. New Drug Approval for Sickle Cell is Just the Beginning

    July 11, 2017 by Andrea
    Photo by freestocks.org on Unsplash

    Photo by freestocks.org on Unsplash



    After more than 20 years of waiting, a new drug for the treatment of sickle cell was finally approved by the FDA on Friday (July 7, 2017), bringing the total to two (the other being Hydroxyurea). Developed by Emmaus Medical, the new drug Endari uses the amino acid L-glutamine to help reduce the occurrence of cell sickling in warriors ages 5 and older. The FDA reports that side effects for Endari include constipation, nausea, headache, abdominal pain, chest pain, back pain, coughing, and pain in the extremeties.

    In a recent interview with NBC BLK, Dr. Alexis A. Thompson, head of Hematology at the Ann and Robert H. Lurrie Children's Hospital of Chicago, said, "I am hoping we are finally seeing channels opening and that this will be the first of many new drugs to hit the market [for sickle cell disease]."

    And it appears Dr. Thompson's hope is indeed on its way to becoming reality. For one thing, SCD-101, our own new drug for sickle cell, is currently undergoing clinical trials. So far, the response has been highly encouraging -- the "Blood" journal has recognized SCD-101's ability to reduce cell sickling, increase exercise ability, and improve sleep and ulcer healing. And, as of yet, there have been no side-effects discovered. Even better, the supplement form of SCD-101 known as Xickle is available for use now.

    Nature.com reports that a slew of other sickle cell drugs are in development now, as well, which is incredibly encouraging. Having options for sickle cell treatment is important for many reasons: Every person's body does not react to every drug in the same way and certain health insurance plans may only cover certain sickle cell drugs, just to name a couple.

    This is just the beginning of a potentially huge deluge of breakthroughs and treatments for sickle cell -- treatments that can ensure that warriors of all ages receive the medicines they need to live long, healthy, happy, lives.


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