Burzynski Patient Rachael M.’s Story

  1. On September 30 of this year, Rachael M. announced on her Twitter feed that her brain tumor, which she had been fighting for about two years, had returned:

  2. That same day, she announced that she was eager to get to Burzynski’s Clinic, and that’s how I heard of her: 
  3. RaeMacks
    @ZHeatherChamp nope, can’t wait anymore I should be leaving for the Burzynski clinic within the next week or so to start treatment!
  4. She also posted about how much money they had recently raised for Dr. Burzynski, some $11,000.
  5. On her website, she is unabashedly gushing with hope about Burzynski’s treatment. Days before she left, she and her boyfriend Jedd recorded a touching and heartfelt thank you to people who had supported her through her journey and brave fight, raising money and pulling for her. They were preparing to get a catheter inserted into her chest, presumably for the ANP treatment:
  6. And they got it.
  7. Less than two weeks later, she was on her way to Texas to the Burzynski Clinic, and she was given a going away party:
  8. RaeMacks
    @RaeMacks #BrainTumorThursday off for treatment today, a great day to embark on life’s next journey. I’d say
  9. The price she was quoted for treatment in Burzynski’s phase III clinical trial was$30,000 up front, $7,000 a month thereafter:
  10. Patients are generally not expected to pay for a treatment in development. This is because the person developing the treatment intends to market the treatment broadly. The trial is part of the investment. Burzynski adopts none of the risks that any other researcher adopts. Charging terminal patients UP FRONT to me seems to me to be a clear indication that he has no intention of seeing his product gain approval that would allow it to be marketed. According to the article above, “The clinic has currently been approved for Phase III Clinical Trial for Antineoplastons treatment and Rachael M.’s brain tumor met the criteria to be accepted as a patient in the trial.”

    But when you go to clinicaltrials.gov, the only open Phase III clinical trial we see is NOT YET RECRUITING:
  11. She trusted Burzynksi and went to his clinic, like so many others over the last 30 years. 
  12. She started Burzynski’s treatment on Oct 12th:
  13. Her report on day 4 of treatment followed:
  14. A few days later, she reported, ever, ever optimistic:
  15. RaeMacks
    @JClucas25 having headaches can feel this brain tumor dying off!!! #Burzynski
  16. The next day, however, she looks tired in a film that she made:
  17. Rachael and Jedd’s final video blog from Houston went up on the same day: 
  18. And then I received Rachael’s obituary today in my mail.
  19. It’s clear from the remembrances and comments that she was well loved and will be missed.
    For patients interested in enrolling in or learning about legitimate clinical trials, please visit the NIH clinical trial fact sheet: 
  20. Donations in Rachael’s name may be made to:
    Rachael M. Scholarship Fund, PO Box 131 Danvers MA, 01923

    According to the family: “Funds will be used to establish a yearly scholarship in Rae’s name to a student that has the same courage, positive outlook and determination in life that Rachael had.”