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Old 02-04-2016, 05:09 PM   #1
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Exclamation Right to Try Laws - accessing investigational drugs

Hi all,

This past Tuesday I went down to Olympia, WA and gave testimony to my situation and why I want the Right to Try legislation passed in Washington State.

I heard back from the Senator this afternoon that the senate health committee voted in favor of SB 6550 -- perhaps even unanimously. It has to go for a vote before the full Senate and then the House health committee and full House for another vote before it might be signed into law. Still a ways to go now.

The current FDA Investigational New Drug program entails access via 1) clinical trials, 2) compassionate use, and then 3) expanded access (a sort of holy mary pass approach to dying patients). We all know that the clinical trial game doesn't work for all of us for any number of reasons -- age, distance, previous drugs we were on, type of disease, etc.

Compassionate use is even more of a nightmare, the FDA says that they will take no more than 30 days to review these applications but they estimate it will take 100 hours of uncompensated time on the part of the physician to make the case for accessing the medications outside of a trial. No wonder we are letting so many patients die and not get access to meds and treatments that might help them.

If you are in Washington State please write in support of this legislation. It really can mean the difference between life or death for so many patients.

Find your WA State reps here:
http://app.leg.wa.gov/districtfinder/
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
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  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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