These medical advocacy groups oppose "right to try"

[cyclonefence]

American Cancer Society Cancer Action Network
American Lung Association
American Society of Clinical Oncology
Asbestos Disease Awareness Organization
Breast Cancer Action
Bridge the Gap - SYNGAP Education and Research Foundation
Chloe's Fight Rare Disease Foundation
Congenital Hyperinsulinism International
Cystic Fibrosis Foundation
Disability Rights Legal Center
Dyskeratosis Congenita Outreach, Inc.
Fight Colorectal Cancer
FORCE: Facing Our Risk of Cancer Empowered
Friedreich's Ataxia Research Alliance
Friends of Cancer Research
International Myeloma Foundation
International Society for Stem Cell Research
The Leukemia & Lymphoma Society
Lung Cancer Alliance
LUNGevity Foundation
M-CM Network
MLD Foundation
Moebius Syndrome Foundation
Myotonic Dystrophy Foundation
National Brain Tumor Society
National Consumers League
National Health Council
National Organization for Rare Disorders (NORD)
National Patient Advocate Foundation
Oncology Nursing Society
The Prevent Cancer Foundation
PSC Partners Seeking a Cure
Pulmonary Fibrosis Foundation
Susan G. Komen
TargetCancer Foundation
United Mitochondrial Disease Foundation
VHL Alliance
Wilkins Parkinson’s Foundation

ttps://www.acscan.org/sites/default/files/National Documents/February Right to Try Coalition Letter - Final.pdf

Please notice that most of these organizations represent rare conditions and cancer, two areas where you would expect interest in untried therapies to be higher than in more common diseases. If they oppose this legislation, there must be something wrong with it.

[BigmanPigman]

1. Good point. Question everything.

[The Velveteen Ocelot]

2. Considering where it's coming from, my guess is that it's set up to benefit drug companies

and insurers at the expense of sick people. There are probably provisions absolving drug companies from all liability and allowing insurance companies to deny coverage, and allowing the drug companies to charge whatever they want. In other words, it's likely to be a bill that allows certain corporations to make a bundle of money off the desperation of desperately ill people and their families.

Yes, I'm that cynical.

[Va Lefty]

3. Considering who signed it, I'd say your right to be cynical.

[syringis]

6. Hi Va Lefty

Considering you hit the nail on the head, I agree 100%.

[Va Lefty]

8. What's up syringis?

[syringis]

10. Updating myself on the thread of the trumpian tribulations

The buffoon is getting worse and worse...

[syringis]

5. Hi TVO

The tweet made me climb the wall !

https://www.democraticunderground.com/100210674869

[lame54]

4. so one can Hail Mary a medication which may result in death...

but is not allowed to legally take their own life

[LostOne4Ever]

7. Probably because it completely F***s up the scientific method

And the ability for researchers to know if the treatment is working or not thus slowing down the ability to get TESTED AND PROVEN treatments out to the public.

Trump and republicans are a bunch of anti science idiots.

[grantcart]

9. Yes but the "Filipino Association of Psychic Surgeons" has heartily endorsed it reminding everyone

"They are terminal, what can it hurt?"

[Ms. Toad]

11. Without any research on this particular law,

I can tell you about one of the organizations & the disease.

PSC is a rare bile-duct disease that destroys the liver and puts the patient at risk for a half-dozen cancers. My daughter is one of approximately 30,000 people nationwide with the disease and has been living with it since at least 2003 (based on symptoms) and was diagnosed in 2009. There is no approved medical treatment, and the surgical treatment (liver transplant) is not a cure - I know people who have had as many as 5 liver transplants.

PSC Partners Seeking a Cure is - generally - a fantastic organization. It leverages small amounts of money (in research terms) into very significant research by funding (among other things) small proof of concept trials. For its size, it is extremely effective at raising money and using it well. It awarded nearly a half million in research grants in 2017, spread among 7 projects. It also curates a database of diagnosis, family history, quality of life, medications, surgeries, overlapping diseases, and patient demographics that is made available to researchers world-wide to address the problem inherent in rare diseases - there isn't a significant enough population in one geographic area to do traditional research.

That said - the organization is fairly medically conservative. There is a medication that has worked well, particularly in the pediatric population. There are patients who have been using it for decades - and have been in clinical remission for that long, there is not data to prove cause and effect. These are well documented in case studies and in smaller research projects that are too small to be routinely accepted as valid. Even though this medication is not of a nature that would be covered by this law, I firmly support the right to try for all PSC patients. The organization does not.

My concern is that the motivation for this letter may be the same kind of paternalism that (it feels to me like) is the driving force behind the medication that leads the organization to discourage people from making private arrangements with their physicians to try the medication that seems helpful in the pediatric population. The second paragraph in the letter is what makes me at least mildly suspicious.

So - yes - when organizations like PSC Partners Seeking a Cure speaks in connection with a bill that will impact PSC patients, it is good to pay attention. Just make sure to also keep your brain in gear and not merely accept the recommendation without understanding where it comes from.