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We Need Your Feedback

We Need Your Feedback....An Important Request for Medicare Beneficiaries

Dear Friends,
The APF is working on an effort to ensure access to life-saving porphyria medications and ...........We need your help!
Over the past several months, we have heard that some of our members may have experienced problems obtaining needed medical treatment in the hospital inpatient setting, and we are concerned that this may be limiting patients' access to Panhematin®, a crucial but costly medication that is the only approved drug for the treatment and prevention of acute porphyric attacks.
As a result, the APF has recently appealed to Medicare to change its policy so that hospitals can continue providing porphyria patients with the medications they need most.  However, to support this effort, we are asking APF members to provide their feedback about access problems faced in the hospital inpatient setting.
The APF will share some of your feedback with Medicare but, as always, will preserve the confidentiality of its members (i.e., all responses will be completely anonymous).  We hope that the comments will demonstrate the very real problems that are faced by patients who suffer from porphyria and will prompt a policy change.
If you are a Medicare beneficiary and have experienced access problems in the inpatient setting, please email your story to Desiree at the APF office,
 As Always, we thank our members for taking the time to help in this very important effort.
Thank You!


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