Comments on: Welcome to the Abigail Alliance Blog http://abigail-alliance.org/blog/welcome-to-the-abigail-alliance-blog-2/ ...thoughts on our fight to save and extend lives Fri, 23 Jul 2010 22:00:15 +0000 hourly 1 http://wordpress.org/?v=3.0 By: Ariel Erdos http://abigail-alliance.org/blog/welcome-to-the-abigail-alliance-blog-2/comment-page-1/#comment-1014 Ariel Erdos Fri, 22 Jan 2010 00:28:27 +0000 http://abigail-alliance.org/blog/?p=6#comment-1014 I am stricken by the way you mastered this topic. It is not often I come across a web site with charming articles like yours. I will note your feed to keep up to date with your hereafter updates. I like it and do continue up the good work. I am stricken by the way you mastered this topic. It is not often I come across a web site with charming articles like yours. I will note your feed to keep up to date with your hereafter updates. I like it and do continue up the good work.

]]> By: Frank Burroughs Abigail Alliance http://abigail-alliance.org/blog/welcome-to-the-abigail-alliance-blog-2/comment-page-1/#comment-13 Frank Burroughs Abigail Alliance Tue, 17 Nov 2009 23:50:24 +0000 http://abigail-alliance.org/blog/?p=6#comment-13 Dear Pam, Let me express my deepest apology for not getting back to you sooner. We had an unfortunate glitch with our new blog, such that I am now just reading your blog commment. The Abigail Alliance will do what we can to try and help your daughter. Please send me some information on her illness, her treatment so far, and if she has tried to get into a clinical trial(s). Please tell your daughter the Abigail Alliance is thinking of her. Thinking of you, Frank Burroughs President, Abigail Alliance for Better Access to Developmental Drugs Dear Pam,
Let me express my deepest apology for not getting back to you sooner. We had an unfortunate glitch with our new blog, such that I am now just reading your blog commment.
The Abigail Alliance will do what we can to try and help your daughter. Please send me some information on her illness, her treatment so far, and if she has tried to get into a clinical trial(s).
Please tell your daughter the Abigail Alliance is thinking of her.
Thinking of you,
Frank Burroughs
President, Abigail Alliance for Better Access to Developmental Drugs

]]> By: Pam http://abigail-alliance.org/blog/welcome-to-the-abigail-alliance-blog-2/comment-page-1/#comment-4 Pam Sun, 08 Nov 2009 21:43:01 +0000 http://abigail-alliance.org/blog/?p=6#comment-4 I think the newly updated website is attractive and modern. We are looking for help to get my daughter access to trial medication. At 17 she is excluded on grounds of age. What can we do? I think the newly updated website is attractive and modern.

We are looking for help to get my daughter access to trial medication. At 17 she is excluded on grounds of age.

What can we do?

]]> By: Frank Burroughs Abigail Alliance http://abigail-alliance.org/blog/welcome-to-the-abigail-alliance-blog-2/comment-page-1/#comment-3 Frank Burroughs Abigail Alliance Thu, 29 Oct 2009 13:16:52 +0000 http://abigail-alliance.org/blog/?p=6#comment-3 Jim Breitfeller makes an important point that the Abigail Alliance for Better Access to Developmental Drugs also has been making for some time now. Patients need to come first. Let me give some input here. 1. Last year the Abigail Alliance presented our white paper, Recommendations for Reform of the Advisory Committee Process, to the FDA. We have had some success in improving patient representation on advisory committees and continue to work on this issue. We brought up this concern at our meeting in September with the new FDA Commissioner. 2. A direct result of the efforts of the Abigail Alliance is the Access, Compassion, Care, and Ethics for Seriously Ill Patients Act (ACCESS Act S.3046 H.R.6270) that we continue to work for passage of in the U.S. Congress. One aspect of the ACCESS Act is that it would jump start the FDA using more modern scientific and statistical tools, thus greatly lessening the need for placeboes in most clinical trials for cancer and other serious life-threatening illnesses. 3. The Abigail Alliance keeps working to allow patients in clinical trials to cross over to the developmental drug, when they more than likely were getting the investigational drug and not the placebo. 4. Among other efforts (including the ACCESS Act), the Abigail Alliance continues to work and to make progress in making promising investigational drugs and vaccines available to so many people who have run out of FDA approved options and cannot get into clinical trials. Jim Breitfeller makes an important point that the Abigail Alliance for Better Access to Developmental Drugs also has been making for some time now. Patients need to come first. Let me give some input here.
1. Last year the Abigail Alliance presented our white paper, Recommendations for Reform of the Advisory Committee Process, to the FDA. We have had some success in improving patient representation on advisory committees and continue to work on this issue. We brought up this concern at our meeting in September with the new FDA Commissioner.
2. A direct result of the efforts of the Abigail Alliance is the Access, Compassion, Care, and Ethics for Seriously Ill Patients Act (ACCESS Act S.3046 H.R.6270) that we continue to work for passage of in the U.S. Congress. One aspect of the ACCESS Act is that it would jump start the FDA using more modern scientific and statistical tools, thus greatly lessening the need for placeboes in most clinical trials for cancer and other serious life-threatening illnesses.
3. The Abigail Alliance keeps working to allow patients in clinical trials to cross over to the developmental drug, when they more than likely were getting the investigational drug and not the placebo.
4. Among other efforts (including the ACCESS Act), the Abigail Alliance continues to work and to make progress in making promising investigational drugs and vaccines available to so many people who have run out of FDA approved options and cannot get into clinical trials.

]]> By: Jim Breitfeller http://abigail-alliance.org/blog/welcome-to-the-abigail-alliance-blog-2/comment-page-1/#comment-2 Jim Breitfeller Tue, 27 Oct 2009 23:06:21 +0000 http://abigail-alliance.org/blog/?p=6#comment-2 “There are three parts of the equation in a clinical trial. There’s who has control, who gets the reward, and who takes the risk. Patients take all the risk, they have no control, and they get no reward. Patients ought to be the ones driving the process and get the reward out of it and have the control, since they are the ones that take the risk.” Greg Simons “There are three parts of the equation in a clinical trial. There’s who has control, who gets the reward, and who takes the risk. Patients take all the risk, they have no control, and they get no reward. Patients ought to be the ones driving the process and get the reward out of it and have the control, since they are the ones that take the risk.”

Greg Simons

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