Home         Forums  

Go Back   Marrowforums > Practical Issues > General Health Issues
Register FAQ Search Today's Posts Mark Forums Read

General Health Issues Diet and appetite, sleep and fatigue, pain management, exercise, etc.

Reply
 
Thread Tools Search this Thread
  #1  
Old Tue Mar 6, 2018, 05:06 PM
Susan Susan is offline
Member
 
Join Date: Sep 2003
Location: Chicago, Il
Posts: 101
Patient Services Inc (PSI) & Fellow Patients Need Our Help!

From Patient Services Inc, (PSI) which is a key advocacy group for rare disease patients and provides patient financial assistance. I received this letter today.

As you may have seen in the press or on our Facebook page, PSI recently took the necessary step of suing the U.S. Department of Health and Human Services for unconstitutionally restricting our ability to help patients.

In a nutshell, the government imposed rules on PSI in March of 2017, which do not allow us to ask for important information from our donors and potential donors - information that is critical to establish patinet assistance programs to help our patients.

These rules, which violate our First Amendment Rights have already contributed to hurting our work. The restrictions placed upon communication between donors/potential donors with charities has contributed to a 17% drop in donations. This means our 2018 is down from 2017, not allowing us to help 2,500 patients, who otherwise would have been able to recieve assistance. In addition, six patient assistance programs we have set up have gone unfunded and there may be possible cutbacks to assistance amounts for patients.

More than ever we need your help, and that means telling your story. Your voice can make a difference and help save charities! Tell us what PSI has meant for you, your family and your friends.

You Can Do This By:

1. Writing your story and emailing it to PSIDevelopment@uneedpsi.org
2. Posting your story to PSI's Facebook page @PSI4Patients
3. Posting a video of you sharing your story to PSI's Facebook page or
emailing it directly to PSIDevelopment@uneedpsi.org
4. Joining the PSI Patient Coalition to help us advocate for your rights!
Contact PSIAdvocacy@uneedpsi.org to join.
5. Emailing us at PSIDevelopment@uneedpsi.org to let us know if you'd be
willing to speak with the media about the importance of Charities.

The world needs to know how central our assistance has been to your life so we can continue getting the donations we need to help so many in need. The world needs to know that our government is creating barriers to patient assistance when no logical alternative exists.

Thank you in advance for lending your voice to this cause and for your dedication to ensuring that PSI can continue helping those who need assistance most.

* If you don't get help from a patient charity such as PSI or NORD yourself, several of our member friends do. You can write on behalf of a friend/friends.
__________________
AA/PNH Dx 1998, Warfarin, Soliris
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
The lower risk MDS patient at risk of rapid progression akita MDS 0 Mon Dec 27, 2010 04:28 AM
Vidaza and Dacogen Birgitta-A Drugs and Drug Treatments 10 Mon Apr 26, 2010 01:07 PM
Soliris™ (Eculizumab), the First and Only Proven Therapy for the Treatment of Patient Doug Mylie Canada 1 Thu Aug 20, 2009 02:16 PM
New Oral Medication Gives Hope to Patients with Blood Cancer Doug Mylie Canada 0 Sat Mar 8, 2008 12:27 PM


All times are GMT -4. The time now is 12:03 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org