Author Topic: Democrats to prevent Huntington's disease research funding?  (Read 3826 times)

Turkey Leg

  • Stubble
  • **
  • Posts: 245
  • Location: US
I believe Donald Trump is hideous (you may not agree, but I have a right to my opinion), so when I posted a link to an anti-Trump article on FB, someone I know who has Huntington's disease posted this in reply:

Quote
I have Huntington's disease. There is no treatment or cure, yet.
Without any profit in medicine , there will be no research and development in the US .
Our Food and Drug Administration is delaying treatment for people like me.
If a Democrat is elected president there will be no change in the FDA, and therefore my chance of me getting new treatments will be small, if at all.
Trump wasn't my first choice, but allowing any Democrat will be so much worse on me.

It appeared to have been pasted into FB from somewhere, but I can't find it. (I did ask him where he got the info, but he hasn't responded.)

I did a quick Google of Huntington's and FDA but I don't even get any Fox News hits with articles negative about Democrats and how they would cut R&D for Huntington's.

Has anyone run across that type of info, or understand what the man was trying to say? Thanks!

jim555

  • Magnum Stache
  • ******
  • Posts: 2628
Re: Democrats to prevent Huntington's disease research funding?
« Reply #1 on: May 24, 2016, 05:21:25 PM »
Republicans control both houses so I don't see how Democrats have much say in things.

Telecaster

  • Magnum Stache
  • ******
  • Posts: 2606
  • Location: Seattle, WA
Re: Democrats to prevent Huntington's disease research funding?
« Reply #2 on: May 24, 2016, 05:48:18 PM »
I wonder what he means by "no profit in medicine."   Profit margins in pharmaceutical sector have among the top, if not the top profit margins of any major industry. 

Vanguards and Lentils

  • Bristles
  • ***
  • Posts: 288
  • Age: 31
Re: Democrats to prevent Huntington's disease research funding?
« Reply #3 on: May 24, 2016, 07:16:27 PM »
I wonder what he means by "no profit in medicine."   Profit margins in pharmaceutical sector have among the top, if not the top profit margins of any major industry.

They are still businesses. If they spent a huge amount of time and money developing and testing a drug that affects only a small number of people, then it's unlikely that they'll "profit" from that. So the government in some cases makes incentives for pharma, such as making patents longer and stricter, or making the testing period easier. See https://en.wikipedia.org/wiki/Orphan_Drug_Act_of_1983. I don't know what the OP is referencing specifically, but politicians can definitely play a role in this incentivization.

Tjat

  • Pencil Stache
  • ****
  • Posts: 570
Re: Democrats to prevent Huntington's disease research funding?
« Reply #4 on: May 24, 2016, 07:42:42 PM »
The FB post sounds like absolute nonsense.

forummm

  • Walrus Stache
  • *******
  • Posts: 7388
  • Senior Mustachian
Re: Democrats to prevent Huntington's disease research funding?
« Reply #5 on: May 24, 2016, 07:42:56 PM »
I believe Donald Trump is hideous (you may not agree, but I have a right to my opinion), so when I posted a link to an anti-Trump article on FB, someone I know who has Huntington's disease posted this in reply:

Quote
I have Huntington's disease. There is no treatment or cure, yet.
Without any profit in medicine , there will be no research and development in the US .
Our Food and Drug Administration is delaying treatment for people like me.
If a Democrat is elected president there will be no change in the FDA, and therefore my chance of me getting new treatments will be small, if at all.
Trump wasn't my first choice, but allowing any Democrat will be so much worse on me.

It appeared to have been pasted into FB from somewhere, but I can't find it. (I did ask him where he got the info, but he hasn't responded.)

I did a quick Google of Huntington's and FDA but I don't even get any Fox News hits with articles negative about Democrats and how they would cut R&D for Huntington's.

Has anyone run across that type of info, or understand what the man was trying to say? Thanks!

You'll be shocked to find that often people have no idea what they are talking about and are fed misinformation by other people who don't know what they are talking about and then act in ways that are contrary to their own interests.

I think that regardless of who is elected president this year, it will have almost no effect on progress towards Huntington's disease treatment. In general, Democrats would be more willing to spend money on research, which is what is needed in this case. However, it's likely that Republicans will control at least one branch of Congress, so there would be lots of budget battles and compromise.

notactiveanymore

  • Stubble
  • **
  • Posts: 212
Re: Democrats to prevent Huntington's disease research funding?
« Reply #6 on: May 24, 2016, 08:20:05 PM »
I have come across mentions previously where people whose loved ones are sick and dying have a negative view of the FDA. The drug approval process takes a long time and "experimental" treatments that are not yet fully approved by the FDA are not usually covered by insurance. I have no real opinions on the length or rigidity of the FDA approval process. I DO know that if the process was less rigorous and a potentially dangerous treatment got through, everyone would hold the government responsible. Even the people who previously complained and wished the FDA did more rush jobs. It's got to be hard when you are running out of treatment options and you hear about a drug that may be the one true cure. But it's not to human trials yet or you can't get in because you're a little too sick or a little too healthy.

There are not a lot of options with Huntington's. The poster has probably heard republican talk about cutting federal regulations and getting the government out of healthcare and latched onto these ideas. I believe the FDA does a pretty good job of vetting drugs and making sure the ones that hit the market are safe and accurate in their claims, but I can see how it would just feel like the gubment was trying to keep a cure out of your loved ones hands.

bogart

  • Handlebar Stache
  • *****
  • Posts: 1092
Re: Democrats to prevent Huntington's disease research funding?
« Reply #7 on: May 24, 2016, 08:50:35 PM »
I'm sorry to hear your friend's dealing with Huntington's disease.

I had absolutely no knowledge of anything related to this prior to your post, but was curious enough to dig around a bit.

I wonder if your friend's concerns arise in relation to the Prescription Drug User Fee Act or PDUFA -- you can read something about it here -- http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ -- also here -- http://www.eyeonfda.com/eye_on_fda/2010/07/what-is-pdufa.html (not certain of biases of that source), and of course Wikipedia -- https://en.wikipedia.org/wiki/Prescription_Drug_User_Fee_Act#History .   Looking further at that FDA site, there's been a series of public hearings, listed here -- http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm368342.htm, including one for Huntington's, listed here -- http://www.fda.gov/downloads/ForIndustry/UserFees/PrescriptionDrugUserFee/UCM491603.pdf.  Here's a post about that from a Huntington's disease sufferer posted on a blog -- http://curehd.blogspot.com/2015/09/at-key-fda-meeting-huntingtons-disease.html.  And here's an older Forbes article on the PDUFA that seems consistent with your friend's general perspective -- http://www.forbes.com/sites/aroy/2012/03/09/feed-the-beast-renewing-the-prescription-drug-user-fee-act-pdufa/#2896c91a6388

The FDA is headed by a commissioner (currently Robert Califf) appointed by the president with the advice and consent of the Senate.  So, sure -- if one doesn't like Califf, or Democrats/Democratic appointees generally, then voting for a Republican seems sensible.

The PDUFA itself was passed by a Democratic Congress (both houses) and signed into law by the first George Bush.  It must be reauthorized every five years, and was renewed in 1997 (Republican House and Senate; Democratic President), 2002 (Senate tied, House Republican, President Republican), 2007 (all 3 Republican), and 2012 (House Republican, Senate Democratic, President Democratic).  So it will be up again in 2017, i.e., the new Congress/administration. 

Turkey Leg

  • Stubble
  • **
  • Posts: 245
  • Location: US
Re: Democrats to prevent Huntington's disease research funding?
« Reply #8 on: May 24, 2016, 09:13:36 PM »
I'm sorry to hear your friend's dealing with Huntington's disease.

I had absolutely no knowledge of anything related to this prior to your post, but was curious enough to dig around a bit.

I wonder if your friend's concerns arise in relation to the Prescription Drug User Fee Act or PDUFA -- you can read something about it here -- http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ -- also here -- http://www.eyeonfda.com/eye_on_fda/2010/07/what-is-pdufa.html (not certain of biases of that source), and of course Wikipedia -- https://en.wikipedia.org/wiki/Prescription_Drug_User_Fee_Act#History .   Looking further at that FDA site, there's been a series of public hearings, listed here -- http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm368342.htm, including one for Huntington's, listed here -- http://www.fda.gov/downloads/ForIndustry/UserFees/PrescriptionDrugUserFee/UCM491603.pdf.  Here's a post about that from a Huntington's disease sufferer posted on a blog -- http://curehd.blogspot.com/2015/09/at-key-fda-meeting-huntingtons-disease.html.  And here's an older Forbes article on the PDUFA that seems consistent with your friend's general perspective -- http://www.forbes.com/sites/aroy/2012/03/09/feed-the-beast-renewing-the-prescription-drug-user-fee-act-pdufa/#2896c91a6388

The FDA is headed by a commissioner (currently Robert Califf) appointed by the president with the advice and consent of the Senate.  So, sure -- if one doesn't like Califf, or Democrats/Democratic appointees generally, then voting for a Republican seems sensible.

The PDUFA itself was passed by a Democratic Congress (both houses) and signed into law by the first George Bush.  It must be reauthorized every five years, and was renewed in 1997 (Republican House and Senate; Democratic President), 2002 (Senate tied, House Republican, President Republican), 2007 (all 3 Republican), and 2012 (House Republican, Senate Democratic, President Democratic).  So it will be up again in 2017, i.e., the new Congress/administration.

Thanks, everyone, but wow! This comment will take some time to dig through. Are you a researcher by trade?

bogart

  • Handlebar Stache
  • *****
  • Posts: 1092
Re: Democrats to prevent Huntington's disease research funding?
« Reply #9 on: May 24, 2016, 09:20:07 PM »
Thanks, everyone, but wow! This comment will take some time to dig through. Are you a researcher by trade?

Ha -- well, yes, actually.  But more to the point, the internet is an amazing thing.  The mind does rather boggle (does it not?) that I was able to dig all that up within a half hour without any prior notice (or knowledge) and without having to leave my couch. 

ETA -- no, that's not quite true.  I do have some general prior knowledge in the sense that I e.g., remember the early days of the AIDS crisis, have read (and would recommend) And the Band Played On, etc., and thus have some general awareness of the difficult balance the FDA seeks to achieve in avoiding unsafe drugs while allowing testing/use of safe/productive ones.  And of course that for patients dealing with degenerative, fatal conditions, that balance point is rather moved relative to what many of the rest of us would perceive as reasonable.  And that the position of that balance point (and related issues) might well make perfect sense as THE "single issue" for someone with Huntington's as a single-issue voter.  So there's that. 
« Last Edit: May 24, 2016, 09:27:00 PM by bogart »

Turkey Leg

  • Stubble
  • **
  • Posts: 245
  • Location: US
Re: Democrats to prevent Huntington's disease research funding?
« Reply #10 on: May 25, 2016, 10:39:15 AM »
I believe Donald Trump is hideous (you may not agree, but I have a right to my opinion), so when I posted a link to an anti-Trump article on FB, someone I know who has Huntington's disease posted this in reply:

Quote
I have Huntington's disease. There is no treatment or cure, yet.
Without any profit in medicine , there will be no research and development in the US .
Our Food and Drug Administration is delaying treatment for people like me.
If a Democrat is elected president there will be no change in the FDA, and therefore my chance of me getting new treatments will be small, if at all.
Trump wasn't my first choice, but allowing any Democrat will be so much worse on me.

It appeared to have been pasted into FB from somewhere, but I can't find it. (I did ask him where he got the info, but he hasn't responded.)

I did a quick Google of Huntington's and FDA but I don't even get any Fox News hits with articles negative about Democrats and how they would cut R&D for Huntington's.

Has anyone run across that type of info, or understand what the man was trying to say? Thanks!

You'll be shocked to find that often people have no idea what they are talking about and are fed misinformation by other people who don't know what they are talking about and then act in ways that are contrary to their own interests.


Yes, I agree entirely. For example, I completely reject my husband's thoughts on politics, because he is a staunch Democrat. I completely reject my side of the family's thoughts on politics, because they are uninformed Republicans. (Not saying all Republicans are uninformed--but my family certainly is.)

Both my husband and my family are against whatever the opposite party does or says, and they comb the internet/Facebook for any article that supports their party (or refutes the opposite party's view).

I just want facts...cold, hard facts.

To get further into the foam...an example would be Gitmo. You should have heard my husband rail against the injustice of Gitmo during Bush's presidency. That is, until Obama took office. Now my husband says nothing on the issue.

But I do feel bad for this man with Huntington's. Not only is it a horrid disease, but he is a very nice person. That's why I am unlikely to call him out on the apparent nonsense he posted. But I did ask for clarification on FB.


BFGirl

  • Pencil Stache
  • ****
  • Posts: 730
Re: Democrats to prevent Huntington's disease research funding?
« Reply #11 on: May 25, 2016, 12:05:19 PM »
IDK anything about the drug testing process, but Huntington's disease is horrific and can effect entire generations of a family.  Also, people with Huntington's often become mentally incapacitated, so I wouldn't put too much faith in something posted by a person with the disease without independent verification.