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If this is actual true, which I find dubious, #IHaveQuestions because we have been down this road before & it is always patients who lose

@Lymenews
@LymeAlliance
@ilads_lyme

#HeLa
#HenriettaLacks

@senblumenthal
@dscc

OneVoice1
🧵
1/x

pharmanewsdaily.com/sorrento-thera…
Let's start with some basic facts:

1. The US Govt (read WE, the US taxpayer) has given Pharma companies like #SorrentoTherapuetics funding & tax breaks to create #COVID19 treatments/vaccines

@RepKatiePorter

sciencemag.org/news/2020/03/m…
2. It's WE, the people, who've donated said antibodies for use in developing treatments/vaccines & the US Govt (Again, WE, the people) has been directly involved in specimen collection

@SenateDems
@SenateGOP
@HouseDemocrats
@HouseGOP
@US_FDA

3/x

redcrossblood.org/donate-blood/d…
3. Until the 1980's, whole biological material was not allowed to be patented in the US.

Thanks to #GOP deregulation after @generalelectric's fight for a 1972 patent application for the "Chakrabarty patent" which was fought all the way to #SCOTUS a floodgate was opened (1981)
3. (Contd) Not that Pharma had not been making billions off of donated/stolen biological matters for more than 30 years at this point

Case in Point, Henrietta Lacks & her immortal HeLa cell line

Here is a short form synopsis of the situation

5/x

shortform.com/summary/the-im…
3. (cont'd) It was not until 1984 that any sort of guidelines were set by #SCOTUS.

Surprise. Surprise. The Burger Court rules in favor of Business & NOT patients.

They did at least rule that at least we have to be told if pieces of us are going to be used.

6/x
This brings me to the HORRENDOUS politicization of #LymeDisease & the patenting of segments of the bacteria that causes it (Borrelia burgdoferi) by universities (@Yale) unscrupulous doctors (Alan Steere) & Big Pharma (@GSK_bio)

7x
ncbi.nlm.nih.gov/pmc/articles/P…
The use of said patent to literally stop the use of OsP A (outer surface protein A) in testing & the millions of people who were given negative results when they were actually positive

& the denial that chronic lyme even existed despite 100s of research studies proving it did

8
Throw in ridiculous misreporting by new sources such as @Vox about what happened with LymeRX,its efficacy & the 430,000 patients that were given an incurable auto immune disorder

The Insurance companies & @AmerMedicalAssn colluding to go after

9/X

courthousenews.com/insurers-accus…
the Doctors (in NY Dr Joseph Burrascano & Dr Daniel Cameron) who actually tried to treat patients, No, SAVE PATIENT LIVES & you will get an idea of the nightmare that could be on the horizon for US #Covid19 patients

10/X

lymedisease.org/history-lyme-d…
@ilads_lyme
@Lymenews
@CDCgov
Full disclosure, I live on the East End of LI where we have been on the front line of the #LymeDiseaseEpidemic for more than 40 years.

Dr. Burrascano had already gone through his 3rd fight w/ the @AmerMedicalAssn for his license & stopped practicing

11/x
I was so ill for so long & was being told that it was in my head (btw, chronic neurological lyme disease symptoms are not in any one's head-they are well documented) that I sought out my own answers.

I found Dr. B's treatment protocol on line, obtained the necessary drugs myself
And, risked my own life to begin the treatment regime.

I was right & I have been forever in Dr. B's debt since then. I even met him at a speaking engagement once & had him autograph my copy of the protocol because he LITERALLY saved my life & got me to pursue finding a doctor
that would risk treating me. If Dr B saved my life, then Dr Daniel Cameron gave me a real life back.

I had to sell my successful business due to the illness so I was fortunate enough to be able to afford to pay

12/x

danielcameronmd.com/dr-daniel-came…
for treatment (even though I had excellent health insurance through my husband) because going through insurance would put Dr Cameron's license at risk. All LLMD's (Lyme Literate Doctors) face this risk.

madisonarealymesupportgroup.com/2017/06/24/llm…
It is the reason, patients have had to build their own silent referral network of local doctors who will treat patients properly

(note: there has never been a study on whether or not 2 weeks of Doxy actually treats Lyme effectively-the standard course of care)

14/x
Nor does it all of the tick borne illnesses that can be transmitted

It is bed science, bad medicine, and deadly in some cases

webmd.com/skin-problems-…
But, I digress. I could go on & on. This is a topic that has affected me & my family. I get carried away.

Here are a couple of incredible resources to bring any interested parties up to speed.

Cure Unknown by Pamela Weintraub @pam3001 is a #mustread

us.macmillan.com/books/97812500…
@underourskin is an incredible documentary that focuses on the fight to get treatment in other parts of the country

(another side note: I was almost as bad as the blond girl in the pool when I started my journey)

17/x

underourskin.com
2008's Under Our Skin was followed up in 2014 by Emergence

Again, totally worth the time to watch

18/x

underourskin.com/emergence
So, w/ all of that in mind, I return to my original #IhaveQuestions

I have 3 main questions/ concerns that have me alarmed

Questions that we ALL should be asking

#Fresh
#BeTheChange4USA
1. What is #Congress doing to ensure that vaccines & treatments developed using our samples & tax $, remain available at a reasonable cost to patients?

2. What is #Congress going to do to protect blood/plasma donations so that patients who have donated do not lose

20/x
2 (cont'd) Their ability to designate how or where their donation goes. Currently, you can designate specific recipients of your blood/plasma products.

Will there be a designation for not for profit or public use that will keep the supply available?

redcrossblood.org/donate-blood/h…
3. What will be done to stop the patenting of specific biological segments of the #Covid19 virus that could cause the testing nightmare that is #LymeDisease testing?

In short, what is #Congress doing to protect US?

@HouseDemocrats
@HouseGOP
@SenateGOP
@SenateDems

OneVoice1
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