PATIENT ADVOCATE NEWS Dear Patient Advocates,
EDITOR’S NOTE
MAR APR 2011
News and information about patient assistance programs and other health care
I consider myself youthful, but even I am astounded by the speed at which social media and mobile communication technologies have permeated and reconfigured our social fabric. According to some polls, more than 95% of the American population owns a cell phone. What this figure means for the potential to communicate and conduct health care in this country should be considered. A recent Kaiser Family Foundation issue brief examined the use of mobile technology to increase health coverage participation among the underserved; with increased and improved access to the Internet through apps, text messaging and social networking sites, can we reach and expand health care coverage to all? If there is a means, then there should be a way. Vikki Sloviter Editor
Wendy Owens, advocacy coordinator for the New England Hemophilia Association (NEHA), contacted us recently because she wanted our readers to learn more about a new organization, the New England Coalition for Affordable Prescription Drugs (NECAPD). Since its focus is similar to ours, how could we not oblige? Vikki: Thanks so much for contacting us. You are the advocacy coordinator for the NEHA, but you’d like to talk about a new initiative, the NECAPD. What was the impetus for starting this new project, and what is its mission? Wendy: NEHA is a small non-profit organization serving a relatively small population of people in New England with bleeding disorders. Though NEHA serves its members well and with the commitment to doing all that we can to meet their needs, we do not have the resources that larger nonprofits have. The cost of medication is one of a leading concern for people with bleeding disorders. The annual cost of their medication can run from $250,000 to over $1 million annually.
Since starting at NEHA in February 2010, I have become increasingly frustrated by learning at the last minute about a bill, or public hearing on a bill, that had been introduced in a New England state that could have tremendous impact on our members. As I made increasingly more contact with others at other New England non-profits in similar positions as mine, I was able to share with them and they shared with me information they had on legislation. Even contacts from large organizations and industry lacked all the information they needed about legislation to perform optimally. I saw the need for communication among groups for whom the cost of prescription drugs is an issue, the need for information sharing among these groups, and the vital need for transparency as to (Continued on next page)