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Hi Brenda,
I just returned from a lobbing trip to DC with the National Breast Cancer Coalition Fund. I was very concerned about movement or the lack there of - to help stage IV patients within the priority of the NBCCF. I realized how different the needs of the Mets population is than the rest of the bc population. We are a new and small population and the wider world of medicine doesn't know what to do with us. Heck, some of them don't even know we exist. In keeping with the theme of "duty to die". I don't know if there is an area that will address the needs of the new Mets population living with cancer. These are the primary concerns that I voiced:
1). Compassionate use and entry into trials for Stage IV patients regardless of previous treatments. Insurance should be required to pay out of network charges if the trial doctor is not covered.
2). Chemo reimbursement should cover both pill forms and IV chemo.
3). Comparative Effectiveness - off label drug access should continue as it is the foundation of Stage IV breast cancer treatment.
4). Gamma Knife / new targeted treatments should be covered for all breast cancer patients if the treatment will improve QOL.
5). Medicare should cover meds for Stage IV patients in all states even if they do not meet age requirements.
Is the Live Strong group involved in Health Care reform? Do you know?
Thanks, Carolyn
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