Wednesday, March 29, 2017

What's all in the New Acute Porphyria Tool Kit? (AHP) Part 2

What's all in the New Acute Porphyria Tool Kit?  (AHP)

How can it benefit me or a caregiver?  How will it affect my Doctor's appointments?

All these tools come free of charge and can be downloaded any time.  

Please click on the link here: Access to Care Toolkit:  

Access to Care Toolkit for the Acute Porphyrias is now available


A downloadable Access to Care Toolkit is a resource designed to help patients living with Acute Intermittent Porphyria (AIP), Hereditary Coproporphyria (HCP), and Variegate Porphyria (VP) or their caregivers, loved ones and healthcare providers secure access to Panhematin at their preferred health facility.  We have recently learned of patients who are being denied this treatment from some hospitals and directed to secure another healthcare provider.  If this has happened to you or someone you know or care for, please use these tools to request help from your state and local representatives and health advocacy organizations.  We understand the debilitating effects of acute porphyria and hope these resources will help you secure access to Panhematin when you need it most.

The Toolkit contains the following materials:
*Healthcare Conversation Tracker is a simple form to record your conversations with doctors, insurance agents, etc.
*Customizable letter templates to record your details to use for doctors, state departments, insurance, etc.
*Access to Care Fact Sheet defines AIP, its symptoms and why it's important for patients to get immediate care
*Patient Bill of Rights can be used to support your appeal for access to treatment

This Toolkit can be found on the APF website.  Contact the APF office today if you have questions!
Part 2~




Effective Management of Acute Intermittent Porphyria:
Healthcare Conversation Tracker

Instructions
It is helpful to keep detailed records of your conversations and interactions with doctors, nurses, 
counselors, and any other healthcare staff. It is also important to keep track of your 
conversations with insurance providers. This information can support your appeals for access to care and treatment and should be provided with your letter.

Be sure to take notes on all your healthcare visits including the date, time, and outcomes, including any incidents or access to care issues. Also note any phone conversations. _____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________


Be as much of the conversation, if possible. This will make it easier to remember. ____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________


Also note conversations with 
your insurance provider and include the name of the representative. If you have to leave a telephone message, it is helpful to record the date, time, and person’s name.__________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________


This educational material is provided by the American Porphyria Foundation. For more information, 
visit porphyriafoundation.com


Use the form below to detail your issues with obtaining access to care and treatment for your condition, or reimbursement. Print multiple copies and record each visit or phone call you make. If you are unable to take notes, ask a relative, friend or caregiver if they can help. ___________________________________________________________________________________________________________________________________________________________________________________________________________________________

Submit a copy of this document along with other documents to support your claims. Remember to be thorough and capture as many details as possible.



Health Visit/Phone Call Report:_______________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________


Date:____________________________________________________________________                                                        
Time:____________________________________________________________________                                  
               

Address: ____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________                                                                                          
                                                                                                    
I went in or called because:_____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________                                                                        
                                                                                                    
I spoke to a (check one):         Doctor        Nurse        Counselor        Administrative Staff
His/Her name was:______________________________________________________________________________________________________________________________________________ 
I also interacted with a (check one):         Doctor        Nurse   
     Counselor        Administrative staff

I spoke with my insurance provider: __________________________________________________________________________________________________________________________________________________

The representative's name was: He/She told me:____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________                                                          
                                                                                                    
Other Notes:_______________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________                                                                                        
                                                                                                    

                                       




1 comment:

Organizations around the world unite for Porphyria links

The following organizations have websites in English The American Porphyria Foundation has a very extensive website, including a section ...