Last weekend nearly 250 members of the Illinois bleeding disorders community family came together for the Annual Statewide Education & Fun Weekend. Everyone enjoyed a Saturday packed full of educational trainings. The day was ended with several hours in the water park and then ended the day with a pizza party. A big thanks to all of our sponsors for making this special activity possible again this year.
COALITION WORKING ON CO-PAYS
One of the negative consequences we are seeing as a result of health care reform is that insurance companies have increased co-payments for many medicines by adding a ‘specialty tier’, a fourth category of medicines. Medications on this specialty tier are needed for life threatening or debilitating diseases and can cost a patient between 25-50% of the drug’s total cost each month, causing people living with chronic illnesses like cancer, arthritis, blood diseases, epilepsy, HIV and others to pay hundreds, even thousands, of dollars a month.
BDAI has joined a coalition to educate legislators about how this is adversely affect people with chronic illnesses. We are encouraging our community to get involved in this effort. You can do this by simply logging on to www.capthecopay.org .
You can register to get up-to-date information and also share your stories.
OPPORTUNITY TO HELP BDAI
We have been offered a unique opportunity to partner with a Chicago-based medical research company. For every person who registers with MedQuery, BDAI will receive a $45 donation. Once you become a MedQuery Panel Member you will receive regular invites to participate in a variety of market research projects typically sponsored by the drug manufacturers.
Payment amounts vary by project but typically you can earn $100 for
an hour providing thoughts and opinions about about your experiences
managing your bleeding disorder. Your enrollment will be strictly
limited to invitations for market research. No marketing of any
kind will occur and your contact information will not be used for
any other purposes.
Raise money for your favorite charity just by searching the web and shopping online!
Laurie is the mother of a child with hemophilia, and founded LA Kelley Communications, Inc. in 1990 to provide practical educational materials for families.
Hemophilia Emergency Care
Atencion de Emergencia para la Hemofilia