The voice of patients is critical as the U.S. Health and Human Services (HHS) determines what services will be covered as health reform is implemented. HHS recently issued a bulletin that outlines how it will define the “essential health benefits” package. Basically, it is proposing to defer these decisions to the states instead of defining what is essential at the national level. The design of the Essential Health Benefits will directly impact the scope of health benefits and the well-being of over 70 million patients. 

Patient groups from different sectors are joining together to let Secretary Sebelius know that we are essential and we need access to comprehensive, affordable and quality health care. Comments on the HHS proposal are due January 31st. In order to let Secretary Sebelius know of our concerns, please sign the online petition - and forward the link to your personal and professional networks as soon as possible. 

This is an urgent request. The petition is open to all individuals. There is a place for comments where signers can indicate why access to healthcare is so essential for them. 

Our main concern is not what the proposed language limits, but what it does not clarify - leaving states to interpret service categories, necessary services, patient protection, and perhaps the most important aspect for pemphigus and pemphigoid patients: it does not address the need for access to specialist care. 

Please join me in signing this petition today.

Will Zrnchik

IPPF Interim CEO

For Rare Disease Day, the IPPF is hosting a Town Hall on February 29! Join Marc Yale, our Town Hall host, as he talks with our sepcial guest, Dr. Ani Sinha. Ask questions and get answers! For more information please visit pemphigus.org/townhall.