Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
About 50 IDF volunteers met in Washington Wednesday evening. Today we fanned out and had of 100 meeting with representatives and senators. I personally had 6 meeting with staff members two senators and 4 legislators. My congress woman (Fudge -O17) signed on as a co sponsor along with at last count 28 others. We have two sponsors in the Senate. Our champion John Kerry introduced the bill in the Senate along with Lemar Alexander. Congressman Matsaui of Texas was the original sponsor - again,
Washington was oppressively hot with temperatures in the 90's and high humidity.
This was the fourth time we have had legislation introduced to correct the Medical home IViG issue. Hopefully this time we can get it done. We have reduced what we are asking for. Our bill this year is asking for a four year administration project with a maximum of 4000 patients and a total cost of less than $9,600,000. This the the permanent fix we were hoping for, but it at least gets it going and get the problem studied.
Washington was oppressively hot with temperatures in the 90's and high humidity.
This was the fourth time we have had legislation introduced to correct the Medical home IViG issue. Hopefully this time we can get it done. We have reduced what we are asking for. Our bill this year is asking for a four year administration project with a maximum of 4000 patients and a total cost of less than $9,600,000. This the the permanent fix we were hoping for, but it at least gets it going and get the problem studied.
If it doesn't happen / doesn't pass everyone who said I'll call my representative later is at fault.
remember private insurance often follows medicare so everyone could lose their home infusions if we do not act.