National Coalition visit to Captiol Hill March 4th, 2010
On March 4th, 2010, the Lupus Alliance of America as part of the National Lupus Coalition once again sent representatvies to Captiol Hill, to be the voice for those living with lupus. This year the Alliance was represented by patient advocates from both New York and Michigan.
On our first Advocacy Day of 2010, we got the message across:
- Increase government research funding
- Support federal programs for eliminating racial disparities in access to good care and treatment
- Increase access to care nationwide
- Vote for effective health insurance reform!
During the meeting that was held on the first day, the representative from the FDA explained the process of getting medications that are off label, for diseases like lupus approved. This meeting held a special meaning to us, since, Kathleen Arntsen from The Lupus Foundation of Mid and Northern NY has been appointed as a patient advisor to the FDA. Lupus will finally be represented in this committee, which is a huge step forward for all of us who have been fighting for lupus for all of these years.
Dr. Cindy Aranow, explained the new SISSLE study, through the Feinstein Institute for Medical Research. All of the information you need to find out about being a part of this study can be found on our website here.
On Thursday all of our patient advocates had meetings on captiol hill with our state senators and local representatives. As always this was an empowering experience, especailly since more of our Congressional leaders now know many people with lupus through years of our advocacy work, and are very interested and supportive in our cause.
Congressman Steve Israel, among others, met with our advocates personally, and once again pledged their assistance to our cause. Over the years we have developed personal relationships with our representatives both in the House and Senate and this has helped ensure that they are always eager to meet with us if they are available.